Aa
help on a pathology report for Lymphoma
Hello, Can you help me please... I am so sad and desperate. I am a 10 yr breast cancer survivor (DCIS/LCIS) no spread. no chemo/no radiation just tamoxifen for 5 yrs. Double mastectomy with silicone implants.Last month I felt a lump adjacent to my implant / lower armpit. Dr. checked and said it was either a lymph node or cyst. From there ended up with US/ which found 4 enlarged nodes under arm pit. A fine needle biopsy was done and a body ct scan. Findings on CT scan multiple enlarged nodes under both arms/groin/neck and some abdomen. Needle biopsy (3 samples taken) showed atypical lymphoid hyperplasia. suspicious for non hodgkins lymphoma, but recommend to remove whole node to get an inoperative consultation with a pathologist to establish the diagnosis. The whole node was removed and this is what the report reads: Flow cytometry report. Diagnosis -Involvement by a CD5+ B-cell lymphoproliferative disorder, kappa restricted with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) phenotype (see comment).. under comment it says correlation with biopsy findings is advised. FLOW INTERPRETATION: Overall speciman viability is 50% the lymphocyte gate accounts for 99% of total . B-cells account for 80% of the lymphocyte gate. Accounting for 92% of these cells is immunophenotypically abnormal CD19+, CD20+(dim), CD79b+(dim), CD5+,CD10-,CD23+, CD200+(Bright), CD11c, CD25-/+,CD103-,CD123-,CD305+/-,CD27+,CD38-, IgM-,Kappa surface light chain restricted population of cells, including a minor subset with increased light scatter properties. T-cells account for 16% of the lymphocyte gate (CD4:CD8 ratio = 1.7:1) The expression of CD2, CD5, CD7, CD10, CD25, CD56, CD57 and CD 279 show no diagnostic abnormalities. NK-cells account for <1% of the lymphocyte gate and show no immunophenotypic abnormalities. Pre Interpretation data: cells were stained with a 3-tube panel to assess for involvement y a lymphoprofilerative disorder. The diagnositc panel included the following combinations of fluorochrome-conjugated primpary antibodies: Tube B1 (CD45, CD14, CD19, CD20, CD79b, CD3, CD5, CD10, CD27, CD38, IgM, kappa lambda) Tube B2 (CD45, CD14, CD19, CD3, CD5, CD23, CD200, CD11c, CD25, CD103, CD305, CD123, CD30)
Tube T (CD45, CD14, CD2, CD3, CD5, CD7, CD4, CD8, CD56, CD57, CD45RA, CD45RO, CD279) Data were acquired on a BD LSRForesta flow cytometer and analyzed with FACSDiva software using a CD45/side scatter gating strategy to identify lymphoid lineage cells. Clinical history: multiple enlarge lymph nodes (FNA supsicous for NHL by report.
I have always had lots of inflammation, my white blood count was always slightly high but not by much. There are issues with my implants and my family gp thinks this might be a result of my body rejecting the silicone implants and feels that if they are removed the problem might resolve itself. I am awaiting now to see my oncologist again. I am so confused and sad... does this report mean this is exactly what I have? or does it mean its a possibility but not for certain... could this all be inflammation. Any help or info you could provide would be so appreciated right now as Im not sure what to make of all of this.
Kindest regards.
Thank you and god bless.
Tube T (CD45, CD14, CD2, CD3, CD5, CD7, CD4, CD8, CD56, CD57, CD45RA, CD45RO, CD279) Data were acquired on a BD LSRForesta flow cytometer and analyzed with FACSDiva software using a CD45/side scatter gating strategy to identify lymphoid lineage cells. Clinical history: multiple enlarge lymph nodes (FNA supsicous for NHL by report.
I have always had lots of inflammation, my white blood count was always slightly high but not by much. There are issues with my implants and my family gp thinks this might be a result of my body rejecting the silicone implants and feels that if they are removed the problem might resolve itself. I am awaiting now to see my oncologist again. I am so confused and sad... does this report mean this is exactly what I have? or does it mean its a possibility but not for certain... could this all be inflammation. Any help or info you could provide would be so appreciated right now as Im not sure what to make of all of this.
Kindest regards.
Thank you and god bless.
COMMUNITY LEADER
Hi, Tina. We can try to distill out the most relevant parts of your testing, as far as my knowledge extends. That way, when you speak with the oncologist, you won't waste the very limited available time on the basics.
CLL and SLL are pretty much the same thing -- except that CLL is in the blood and probably also in the nodes, while on the other hand SLL is mostly or exclusively in the nodes and not much in the blood. Your CBC tests would show how much your lymphocytes have multiplied in the blood, or not. The biopsies show how many B-cell lymphocytes are in the nodes, and let the pathologist see what the B cells look like.
The 'flow cytometry' test is done to look for certain molecules on the surface of cells. When B cells have CD5 and CD23 on their surface, that's when a report says that it looks like CLL/SLL. Sorry to say, but yours do have CD5 and CD23. (There are other things in your report, such as that the CD200 is bright -- so that means this likely isn't the worse diagnosis of Mantle Cell lymphoma.)
Next, we want to see if the B cells are 'clonal'; that is, do they all come from one original cancer cell that multiplies endlessly. Unfortunately, your report says 'kappa restricted' and so that looks like it is indeed clonal.
Now, it is still somewhat possible to have something very rare that looks like a cancer but isn't. So we'd want to look for any sign of that in the pathology report, to see if the 'fatty hilum' was still present, and whether the architecture inside the node was normal or was instead 'effaced'. Your ultrasound should talk about that, too. Can you copy/paste the pathology report and also the ultrasound report?
If you also post the CT report, we can take a look at the sizes and shapes. If none are very large, then that's pretty good.
If your pathology report and the ultrasound report say that the inside of the nodes don't look like cancer, then we can search for case reports of people who seemed to have CLL/SLL but really didn't. Perhaps some rare clonal 'lymphoproliferative disorder' that isn't actually malignant. But I'm sorry to say that offhand I don't know of any.
If this does turn out to be CLL/SLL, then I'd point out that it seems to be possibly very slow growing. Maybe your long term inflammation existed because there was a long term but very slow growing CLL/SLL for a long time. It's not unusual at all in CLL/SLL that a patient gets put on 'watch and wait', because it grows so slow that it doesn't even make sense to start treatment.
Or maybe your chronic inflammation means that your system is good at controlling the spread of any cancer. That'd be even more likely if your experience with the breast cancer was that you did far better than the average patient. As you'd said, no spread despite having no chemo or radiation, right?
CLL and SLL are pretty much the same thing -- except that CLL is in the blood and probably also in the nodes, while on the other hand SLL is mostly or exclusively in the nodes and not much in the blood. Your CBC tests would show how much your lymphocytes have multiplied in the blood, or not. The biopsies show how many B-cell lymphocytes are in the nodes, and let the pathologist see what the B cells look like.
The 'flow cytometry' test is done to look for certain molecules on the surface of cells. When B cells have CD5 and CD23 on their surface, that's when a report says that it looks like CLL/SLL. Sorry to say, but yours do have CD5 and CD23. (There are other things in your report, such as that the CD200 is bright -- so that means this likely isn't the worse diagnosis of Mantle Cell lymphoma.)
Next, we want to see if the B cells are 'clonal'; that is, do they all come from one original cancer cell that multiplies endlessly. Unfortunately, your report says 'kappa restricted' and so that looks like it is indeed clonal.
Now, it is still somewhat possible to have something very rare that looks like a cancer but isn't. So we'd want to look for any sign of that in the pathology report, to see if the 'fatty hilum' was still present, and whether the architecture inside the node was normal or was instead 'effaced'. Your ultrasound should talk about that, too. Can you copy/paste the pathology report and also the ultrasound report?
If you also post the CT report, we can take a look at the sizes and shapes. If none are very large, then that's pretty good.
If your pathology report and the ultrasound report say that the inside of the nodes don't look like cancer, then we can search for case reports of people who seemed to have CLL/SLL but really didn't. Perhaps some rare clonal 'lymphoproliferative disorder' that isn't actually malignant. But I'm sorry to say that offhand I don't know of any.
If this does turn out to be CLL/SLL, then I'd point out that it seems to be possibly very slow growing. Maybe your long term inflammation existed because there was a long term but very slow growing CLL/SLL for a long time. It's not unusual at all in CLL/SLL that a patient gets put on 'watch and wait', because it grows so slow that it doesn't even make sense to start treatment.
Or maybe your chronic inflammation means that your system is good at controlling the spread of any cancer. That'd be even more likely if your experience with the breast cancer was that you did far better than the average patient. As you'd said, no spread despite having no chemo or radiation, right?
1 Comments
Hello Ken,
Firstly, I cant thank you enough for your response and helping me to understand my report. In 2009 I had DCIS in left breast (wide spread) and a small area of LCIS in right breast. Both my sister and I two weeks apart had BC. There is no BC in our family... so I had the BRCA 1 and 2 test done. The BRCA 1 for BC came back normal, but the BRCA 2 for ovarian came back with an anomaly. The reaon I mention this is cuz I wonder if the anomaly had something to do with whats going on now with this diagnosis to date. When I had my mastecomies they did a sentinal node biopsy on the left side and there was no spread just 2 fatty nodes. Yes I was very lucky. NO chemo or radiation and was on tamoxifen for 5 yrs. I see an oncologist yearly. I have always had high levels of inflamation come up in my blood work and I have tried to combat it with vitamins and sometimes diet also.. but I guess I wasnt that successful. How does one successfully bring down inflammation in the body... I wonder.
The node that brought me to this is about 4 inches to the right of my right breast implant about five inches lower in my right underarm.. it was painful / swollen and appeared out of nowhere.I have silicone implants and there currently is a controversy with these particular implants where there have been causes of a lymphoma specifically caused by the implants, but I it looks like they have pretty much outruled that this is not being caused by my implants. However, my family GP initially felt that this node may have been a reactive node to my body now rejecting the implants.
So.. as for the Ultrasound . although I do not have a copy of the report this is what I know..... they checked the painful swollen node and also examined under my right armpit (axilla area). They came to a conclusion that I also had 4 enlarged nodes under my right axilla, the largest being 3.9 cm and they suggested a fine needle biopsy for further investigation. At this point I saw my oncologist as he also had read the US report and he ordered a full body ct scan with contrast. The CT scan was done followed by the fine needle biopsy. When the dr was doing the needle biopsy she had a look at my CT scan to see what she needed to know for the biopsy etc... she took 3 good samples of the node... they also noted that yes there was fatty hilum on them but that does not make a difference. I have both reports the CT Scan and the Fine Needle Aspiration:
This is the fine needle aspiration pathology report:
Diagnosis:
Fine needle aspiration biopsy, lympth node, right axilla: showing atypica lymphoid hyperplasia, please see microscopic description.
Clinical Infomation: Enlarged lymph nodes, abornal node.
Gross Description:
40ml clear formalin. Formalin fixed cell block prepared
Microscopic Description:
Five smears and sections of cell block on an aspirate obtained by dr. have been examined. These show a monotonous population of small lymphoid cells showing slightly vescular nuclei and an occasional prominent nucleolus. A few larger cells are also prsent admixed. No tingible body macophages are seen. The findings are that of atypical lymphod hyperplasia, suspicious for non hodkings lymphoma. An exicional biopsy of the node is suggested with request for an intraoperative consultation with a pathologist to establish the diagnosis.
The oncologist felt that the diagnosis above did not really indicate any cancer as he felt that they took quite a lot of samples and a cancer cel would have showed up in the needle biopsy... so he was adamant that we take out the whole node, which I had done on Wed March 8 and the first part of the pathology was what I provided to you in my first thread.
For the Contrast body CT scan:
Findings:
CT neck:
Multiple rounded/enlarged lymph nodes are appreciated within the anterior and posterior cervical chains within the soft tissues of the neck are appreciated. These findings are diffuse. The remainder of the soft tissues in theneck appear satisfactory.
No significant disc protrusion of the cervical spine is identified. Fairly marked bony degerative changes of the right C3-4 facet is identified.
CT Chest:
Multiple enlarghed lymph nodes are noted in theaxillary regions bilaterally extend to lie deep to the pectoralis minor muscles top bilateral mastectomies with subpectoral implants are noted. No significat fluid collection about either implant is identified.
A prevascular lymphoe measures up to 10mm which is at the upper limits of normal. No significant hilar lymphadenophathy is identified. The cardiac silhouette appears satisfactory. No significant lung parenchymal abnormality is identified. o bony abornality within the chest is appreciated.
CT abdomen and pelvis:
Multiple cysts are identified within the liver with the largest lying in segment II measuring up to 7.5 cm. The gallbladder and biliary tree appear satisfactory. No abornality of the adrenal glands or pancreas is identified. The speel is mildly enlarged measuing 14.4 cm in lenght. No abnormality of the kidneys is appreciated. The abdominal aorta amd major branches appear satisfactory. Findings are suggestive of an exophytic fibroid on the right meauring up to 1.9 cm. A calcified fibroid within the left fundus is identified measures up to 4.7 cm.
Enlarged lymph nodes within the groins bilaterally are identified. Enlarged lymp nodes within the pelvic sidwalls and about the abdominal aorta are noted.
No significat bony abornality of the absomen or pelvis is identified
Impression:
Diffuse enlarged lymph nodes are identifed with the anterior and posterior cervical chains of the neck, bilaterial axillary regions, abdomen and pelvis and bilateral groins, is most in keeping with the history of lymphoma.
So that is all the info I have to date. I believe the first results I sent to you may have just been a preliminary... because it states under DIAGNOSIS COMMENT: Correlation with biopsy findings is advised. Would this part of the biopsy be just the staining part and then the actually biopsy to follow? and I guess I wonder a couple of things:
1) What would the chances be that the staining says one thing and can the biopsy confirms that it is not Cancer? And what would the chances of this also being in my bones?
I have had lots of blood work and wouldnt this show up in the blood work? even minimally?
My lymphcites on the blood work were 4.4 on March 1 (slightly elevated) and were 3.3 on March 7. The postassim was slightly elevated on March 7 (5.2). and the monocytes were slightly elevated on Feb 13 (.9). My white blood count was 10 on March 7 (so it was within means) and whenever it has been elevated it was always very slightly elevated.
Im very nervous and dont know what to make of this. My GP said that whenever his patients have any type of test done like this it always comes back with a difinite diagnosis and he is also stumped as its still not very clear.
I am afraid whatever this is .. it could possible be also in my bones... and whatever it is - can it be treated sucessfully?
I cant thank you enough for all your help and I truly apologize for this lenghtly email. I dont' know now where to turn.. my ongologist appt is on Monday and I hope the rest of the pathology comes in by then. I am hoping this is not going to be as bad as it sounds.
Thank you so much for all your help. and God bless you are truly a godsend for helping those in need.
Warmest regards
Tina
Firstly, I cant thank you enough for your response and helping me to understand my report. In 2009 I had DCIS in left breast (wide spread) and a small area of LCIS in right breast. Both my sister and I two weeks apart had BC. There is no BC in our family... so I had the BRCA 1 and 2 test done. The BRCA 1 for BC came back normal, but the BRCA 2 for ovarian came back with an anomaly. The reaon I mention this is cuz I wonder if the anomaly had something to do with whats going on now with this diagnosis to date. When I had my mastecomies they did a sentinal node biopsy on the left side and there was no spread just 2 fatty nodes. Yes I was very lucky. NO chemo or radiation and was on tamoxifen for 5 yrs. I see an oncologist yearly. I have always had high levels of inflamation come up in my blood work and I have tried to combat it with vitamins and sometimes diet also.. but I guess I wasnt that successful. How does one successfully bring down inflammation in the body... I wonder.
The node that brought me to this is about 4 inches to the right of my right breast implant about five inches lower in my right underarm.. it was painful / swollen and appeared out of nowhere.I have silicone implants and there currently is a controversy with these particular implants where there have been causes of a lymphoma specifically caused by the implants, but I it looks like they have pretty much outruled that this is not being caused by my implants. However, my family GP initially felt that this node may have been a reactive node to my body now rejecting the implants.
So.. as for the Ultrasound . although I do not have a copy of the report this is what I know..... they checked the painful swollen node and also examined under my right armpit (axilla area). They came to a conclusion that I also had 4 enlarged nodes under my right axilla, the largest being 3.9 cm and they suggested a fine needle biopsy for further investigation. At this point I saw my oncologist as he also had read the US report and he ordered a full body ct scan with contrast. The CT scan was done followed by the fine needle biopsy. When the dr was doing the needle biopsy she had a look at my CT scan to see what she needed to know for the biopsy etc... she took 3 good samples of the node... they also noted that yes there was fatty hilum on them but that does not make a difference. I have both reports the CT Scan and the Fine Needle Aspiration:
This is the fine needle aspiration pathology report:
Diagnosis:
Fine needle aspiration biopsy, lympth node, right axilla: showing atypica lymphoid hyperplasia, please see microscopic description.
Clinical Infomation: Enlarged lymph nodes, abornal node.
Gross Description:
40ml clear formalin. Formalin fixed cell block prepared
Microscopic Description:
Five smears and sections of cell block on an aspirate obtained by dr. have been examined. These show a monotonous population of small lymphoid cells showing slightly vescular nuclei and an occasional prominent nucleolus. A few larger cells are also prsent admixed. No tingible body macophages are seen. The findings are that of atypical lymphod hyperplasia, suspicious for non hodkings lymphoma. An exicional biopsy of the node is suggested with request for an intraoperative consultation with a pathologist to establish the diagnosis.
The oncologist felt that the diagnosis above did not really indicate any cancer as he felt that they took quite a lot of samples and a cancer cel would have showed up in the needle biopsy... so he was adamant that we take out the whole node, which I had done on Wed March 8 and the first part of the pathology was what I provided to you in my first thread.
For the Contrast body CT scan:
Findings:
CT neck:
Multiple rounded/enlarged lymph nodes are appreciated within the anterior and posterior cervical chains within the soft tissues of the neck are appreciated. These findings are diffuse. The remainder of the soft tissues in theneck appear satisfactory.
No significant disc protrusion of the cervical spine is identified. Fairly marked bony degerative changes of the right C3-4 facet is identified.
CT Chest:
Multiple enlarghed lymph nodes are noted in theaxillary regions bilaterally extend to lie deep to the pectoralis minor muscles top bilateral mastectomies with subpectoral implants are noted. No significat fluid collection about either implant is identified.
A prevascular lymphoe measures up to 10mm which is at the upper limits of normal. No significant hilar lymphadenophathy is identified. The cardiac silhouette appears satisfactory. No significant lung parenchymal abnormality is identified. o bony abornality within the chest is appreciated.
CT abdomen and pelvis:
Multiple cysts are identified within the liver with the largest lying in segment II measuring up to 7.5 cm. The gallbladder and biliary tree appear satisfactory. No abornality of the adrenal glands or pancreas is identified. The speel is mildly enlarged measuing 14.4 cm in lenght. No abnormality of the kidneys is appreciated. The abdominal aorta amd major branches appear satisfactory. Findings are suggestive of an exophytic fibroid on the right meauring up to 1.9 cm. A calcified fibroid within the left fundus is identified measures up to 4.7 cm.
Enlarged lymph nodes within the groins bilaterally are identified. Enlarged lymp nodes within the pelvic sidwalls and about the abdominal aorta are noted.
No significat bony abornality of the absomen or pelvis is identified
Impression:
Diffuse enlarged lymph nodes are identifed with the anterior and posterior cervical chains of the neck, bilaterial axillary regions, abdomen and pelvis and bilateral groins, is most in keeping with the history of lymphoma.
So that is all the info I have to date. I believe the first results I sent to you may have just been a preliminary... because it states under DIAGNOSIS COMMENT: Correlation with biopsy findings is advised. Would this part of the biopsy be just the staining part and then the actually biopsy to follow? and I guess I wonder a couple of things:
1) What would the chances be that the staining says one thing and can the biopsy confirms that it is not Cancer? And what would the chances of this also being in my bones?
I have had lots of blood work and wouldnt this show up in the blood work? even minimally?
My lymphcites on the blood work were 4.4 on March 1 (slightly elevated) and were 3.3 on March 7. The postassim was slightly elevated on March 7 (5.2). and the monocytes were slightly elevated on Feb 13 (.9). My white blood count was 10 on March 7 (so it was within means) and whenever it has been elevated it was always very slightly elevated.
Im very nervous and dont know what to make of this. My GP said that whenever his patients have any type of test done like this it always comes back with a difinite diagnosis and he is also stumped as its still not very clear.
I am afraid whatever this is .. it could possible be also in my bones... and whatever it is - can it be treated sucessfully?
I cant thank you enough for all your help and I truly apologize for this lenghtly email. I dont' know now where to turn.. my ongologist appt is on Monday and I hope the rest of the pathology comes in by then. I am hoping this is not going to be as bad as it sounds.
Thank you so much for all your help. and God bless you are truly a godsend for helping those in need.
Warmest regards
Tina
COMMUNITY LEADER
Tina, I was just now looking around for over an hour about this and then I recalled something that could possibly be a benign diagnosis that is not SLL but can mimic SLL.
I'd therefore absolutely ask the oncologist about this: "multicentric Castleman disease". It is rare. It is usually not monoclonal, but sometimes it is monoclonal. So it would be a rare variant of a rare disease. It is usually CD5-, but sometimes it can be CD5+. That makes it even rarer still, to fit your case. Tomorrow, I'll check if it sometimes can be CD23+.
It's altogether very rare, but it seems possible. The docs might scoff because it would be so rare. But even if it's one in a million, you might be that one.
It's associated with a virus (HHV-8), so that can explain why nodes are enlarged all over in you, and why that first node came up suddenly and was painful (lymphoma isn't expected to behave like that).
This will take some more mulling over...
I'd therefore absolutely ask the oncologist about this: "multicentric Castleman disease". It is rare. It is usually not monoclonal, but sometimes it is monoclonal. So it would be a rare variant of a rare disease. It is usually CD5-, but sometimes it can be CD5+. That makes it even rarer still, to fit your case. Tomorrow, I'll check if it sometimes can be CD23+.
It's altogether very rare, but it seems possible. The docs might scoff because it would be so rare. But even if it's one in a million, you might be that one.
It's associated with a virus (HHV-8), so that can explain why nodes are enlarged all over in you, and why that first node came up suddenly and was painful (lymphoma isn't expected to behave like that).
This will take some more mulling over...
1 Comments
OMG Ken... you have given me the only thread to hang on to... I have been so afraid and been through this 10 years ago... I was really not prepared to go through it again. I can't thank you enough for helping me with this.. your expertise and knowledge is amazing and I cant thank you enough..... Im also worried about a bone biopsy and hope they dont send me for that.. Thank you for looking into this for me.. you are my Godsend! thank you and god bless you. Warm regards. Tina
COMMUNITY LEADER
I'm very happy to help, Tina. Since your appt is tomorrow, I'll post a few things today simply and leaving out a lot so as not to overload you.
I think that a lot of people get themselves worked up way too much over anticipation of a bone marrow biopsy because they've heard that it's pretty bad. Then when they finally have it, they experience it as worse than it really is. So they tell others how bad it was, and the cycle gets repeated over and over.
I was in the room when my father had it, it was no big deal for him at all. It's over in a few minutes, too.
It's not testing for cancer in the bone. The B cells (and all the blood cells) are made in bone marrow. When a blood cancer gets into the marrow, the production of good blood cells gets reduced. But since you don't have reduced numbers of blood cells showing on your CBC tests, the docs might not order a BMB for you.
I think that a lot of people get themselves worked up way too much over anticipation of a bone marrow biopsy because they've heard that it's pretty bad. Then when they finally have it, they experience it as worse than it really is. So they tell others how bad it was, and the cycle gets repeated over and over.
I was in the room when my father had it, it was no big deal for him at all. It's over in a few minutes, too.
It's not testing for cancer in the bone. The B cells (and all the blood cells) are made in bone marrow. When a blood cancer gets into the marrow, the production of good blood cells gets reduced. But since you don't have reduced numbers of blood cells showing on your CBC tests, the docs might not order a BMB for you.
COMMUNITY LEADER
"An excisional biopsy of the node is suggested with request for an intraoperative consultation with a pathologist to establish the diagnosis."
That means they quickly send the removed node to be tested before sewing you up, so that if the node is definitely found to be cancerous, the surgeon might go ahead and remove all the other bad nodes within reach.
But the surgeon didn't remove other nodes, so that seems to say that there was *not* definite cancer found at that point.
The pathology testing is done with a microscope and the staining. But the flow cytometry testing is done much later, as the sample has to be sent to a special, advanced lab. That's when the CD5+ and CD23+ and the 'monoclonal' was found.
But Castleman's can mimic SLL. And Casteman's can be CD5+ and monoclonal.
That means they quickly send the removed node to be tested before sewing you up, so that if the node is definitely found to be cancerous, the surgeon might go ahead and remove all the other bad nodes within reach.
But the surgeon didn't remove other nodes, so that seems to say that there was *not* definite cancer found at that point.
The pathology testing is done with a microscope and the staining. But the flow cytometry testing is done much later, as the sample has to be sent to a special, advanced lab. That's when the CD5+ and CD23+ and the 'monoclonal' was found.
But Castleman's can mimic SLL. And Casteman's can be CD5+ and monoclonal.
COMMUNITY LEADER
Well, right away I'm going beyond just the simple here, but I'll still include this link to a paper showing that Castleman's can be CD5+
"Our study confirms that CD5 expression is a common feature of the B-cells in the expanded mantle zones of Castleman disease, and that this finding should not necessarily raise alarm for involvement by a CD5+ B-cell lymphoma."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3834164/
"Increased CD5 positive polyclonal B cells in Castleman disease: a diagnostic pitfall" 2013
By saying "pitfall" they're meaning--> make sure you don't mistake Castleman's for being lymphoma.
----------------------
Next, here is a case study showing that Castleman's can be monoclonal. That's very rare, but possible.
https://www.jstage.jst.go.jp/article/jslrt/55/2/55_103/_article
"Multicentric Castleman Disease with Monoclonal Incomplete IgH Restriction: A Rare Coexistence"
------------------------
I would take those two url's along to the oncologist appt. No doc should care what I say, of course. But they should take notice of those journal articles because they are "authoritative sources".
"Our study confirms that CD5 expression is a common feature of the B-cells in the expanded mantle zones of Castleman disease, and that this finding should not necessarily raise alarm for involvement by a CD5+ B-cell lymphoma."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3834164/
"Increased CD5 positive polyclonal B cells in Castleman disease: a diagnostic pitfall" 2013
By saying "pitfall" they're meaning--> make sure you don't mistake Castleman's for being lymphoma.
----------------------
Next, here is a case study showing that Castleman's can be monoclonal. That's very rare, but possible.
https://www.jstage.jst.go.jp/article/jslrt/55/2/55_103/_article
"Multicentric Castleman Disease with Monoclonal Incomplete IgH Restriction: A Rare Coexistence"
------------------------
I would take those two url's along to the oncologist appt. No doc should care what I say, of course. But they should take notice of those journal articles because they are "authoritative sources".
1 Comments
Hello Ken,
I cant thank you enough from the bottom of my heart for all the work you have done for me. I will bring these 2 articles to my onco tomorrow and will let you know the outcome. My biopsy was done on Wed March 8th and the first report (staining one) was given to me on Thu March 9th. In your opinion... do you think the onco will have the rest of the bio results by tomorrow? They didnt say how long it would take for the rest of it to come. Im prepared for the worst but at the same time want to be hopeful and thank you for giving me hope. You've been so kind to take time out of your day to research my reports and I am so grateful for that. Also.... sorry to pester you... but in your opinion - what do you think that the chances are that the rest of the report will come back to confirm the staining diagnosis or is there even a possibility that it could come back as something else other than a cancer (or cancer mimic). If it were castlemans disease.... would you know off hand if the nodes ever go back down and treatment options. I have an enlarged node on side of my neck... it kind of feels somewhat mid soft/rubbery and palpable. You can only see it slightly if I tilt my head sharply all the way to the side. And in the worse case scenario... If i need chemo - do you think it would be for more than 6 months (do I lose hair with the type they use). I am so sorry for all the questions... right now I feel that you are the only person that has given me any insight to what might be going on here. I keep wishing and praying that this is a bad dream and I'll wake up and wont have to go through this again. I hope the onco does not send me for the BMB... thank you for giving me hope.
Warmest regard and sincere appreciation.
Tina
I cant thank you enough from the bottom of my heart for all the work you have done for me. I will bring these 2 articles to my onco tomorrow and will let you know the outcome. My biopsy was done on Wed March 8th and the first report (staining one) was given to me on Thu March 9th. In your opinion... do you think the onco will have the rest of the bio results by tomorrow? They didnt say how long it would take for the rest of it to come. Im prepared for the worst but at the same time want to be hopeful and thank you for giving me hope. You've been so kind to take time out of your day to research my reports and I am so grateful for that. Also.... sorry to pester you... but in your opinion - what do you think that the chances are that the rest of the report will come back to confirm the staining diagnosis or is there even a possibility that it could come back as something else other than a cancer (or cancer mimic). If it were castlemans disease.... would you know off hand if the nodes ever go back down and treatment options. I have an enlarged node on side of my neck... it kind of feels somewhat mid soft/rubbery and palpable. You can only see it slightly if I tilt my head sharply all the way to the side. And in the worse case scenario... If i need chemo - do you think it would be for more than 6 months (do I lose hair with the type they use). I am so sorry for all the questions... right now I feel that you are the only person that has given me any insight to what might be going on here. I keep wishing and praying that this is a bad dream and I'll wake up and wont have to go through this again. I hope the onco does not send me for the BMB... thank you for giving me hope.
Warmest regard and sincere appreciation.
Tina
COMMUNITY LEADER
"My GP said that whenever his patients have any type of test done like this it always comes back with a difinite diagnosis and he is also stumped as its still not very clear. "
Yep, that is pretty much what is meant by "atypical lymphoid hyperplasia". It's seems to be in between cancer and not-cancer.
Can you send an email to the GP and ask, "what about Castleman's mimicking lymphoma?" If the GP is open minded, send the two links about CD5+ and monoclonal. (Most docs would immediately think that Castleman's is not monoclonal, but the case study shows that it is very rare but possible.)
-----------
Make sure to let me know how your Monday appt goes.
Yep, that is pretty much what is meant by "atypical lymphoid hyperplasia". It's seems to be in between cancer and not-cancer.
Can you send an email to the GP and ask, "what about Castleman's mimicking lymphoma?" If the GP is open minded, send the two links about CD5+ and monoclonal. (Most docs would immediately think that Castleman's is not monoclonal, but the case study shows that it is very rare but possible.)
-----------
Make sure to let me know how your Monday appt goes.
1 Comments
Yes I definitely will. Im a little nervous because initially my onco appt was scheduled for Wed Mar 13, but the office did call me at the end of the day on Thursday (they are closed on Friday) to tell me to come in Monday (tomorrow). So Im not sure why, but am very frightened. Again, thank you so much for everything. You are very kind and have been very helpful.
With gratitute
Tina
With gratitute
Tina
COMMUNITY LEADER
When you say "staining", are you referring to the results being CD5+ etc? That's actually the immunohistochemistry testing, it uses glowing antibodies in a flow cytometer machine. On the other hand, I don't see where you posted any staining+microscope/pathology reports; but they should already be in your file. If it was done intraoperatively, the results were known right then. The onco might also order genetic (molecular) testing to look for mutations.
The results of the excisional biopsy testing (including the flow cytometry) supercede everything that went before. Though I can't imagine why anyone would say that the *presence* of a fatty hilum doesn't matter, except if it was a brand new and developing lymphoma -- but then the node probably wouldn't have been large enough to feel.
"Im prepared for the worst but at the same time want to be hopeful and thank you for giving me hope."
That's the spirit :) The treatment might be the same for Castleman's as for SLL, as the aim in both is simply to kill off B cells. If the onco says you should initially only have an antibody treatment called Rituxan, that is the mildest thing possible and there is no reason to resist having that. Yes, nodes should shrink unless there is scar tissue from inflammation (fibrosis) built up inside.
"is there even a possibility that it could come back as something else other than a cancer (or cancer mimic)."
Yes, though I don't know what... except maybe possibly some exotic strange new variant of Kikuchi Disease.
And no, it's not pestering at all :) Ask away with more questions if you like. And did I miss answering any?
The results of the excisional biopsy testing (including the flow cytometry) supercede everything that went before. Though I can't imagine why anyone would say that the *presence* of a fatty hilum doesn't matter, except if it was a brand new and developing lymphoma -- but then the node probably wouldn't have been large enough to feel.
"Im prepared for the worst but at the same time want to be hopeful and thank you for giving me hope."
That's the spirit :) The treatment might be the same for Castleman's as for SLL, as the aim in both is simply to kill off B cells. If the onco says you should initially only have an antibody treatment called Rituxan, that is the mildest thing possible and there is no reason to resist having that. Yes, nodes should shrink unless there is scar tissue from inflammation (fibrosis) built up inside.
"is there even a possibility that it could come back as something else other than a cancer (or cancer mimic)."
Yes, though I don't know what... except maybe possibly some exotic strange new variant of Kikuchi Disease.
And no, it's not pestering at all :) Ask away with more questions if you like. And did I miss answering any?
COMMUNITY LEADER
The onco is probably positioned to say it is SLL and there might be watch-and-wait. You should be prepared to make the case that a rare variation of Castleman's should be looked into, at the very least to rule it out or else to discover that it is the actual true cause here.
When I get back later I'll look into Castleman's and CD23.
When I get back later I'll look into Castleman's and CD23.
COMMUNITY LEADER
If the onco thinks for now it is SLL, they might want to do some tests to see how slow or fast it will behave... prognostic markers.
1 Comments
Im so glad that I came to this forum and had you to assist with all my questions. If I could I would bring you the finest bottle of wine to show you how grateful I am for all your valuable insight. Really... at this point its the only thing thats keeping me from falling apart. You are absolutely right about the fatty hilum, because I thought I read that somewhere that it was in favor of not being malignant if the fatty hilum was present. But both the doctor doing the biopsy and the technician basically told me otherwise... I did not find them to be very pleasant and was scared to death so I chose not to ask further questions. For the staining....Yes I was referring to the results being CD5+ etc. Im so sorry, Im really in the dark with all the lingo on the reports. I actually typed them out exactly as they read as I dont have a scanner otherwise I would scan them to you. Its strange though, how these reports dont mention the fatty hilum, unless its in a different lingo and I missed it. Just curious though.. and please forgive me if Im repeating but what they found on the preliminary... is that always more or less 100 % accurate in your opinion? Have they ever been wrong?
Thank you again and thank you for looking into the Castleman's and CD23. You are amazing! God bless.
Tina
Ps - will send you a note tomorrow evening after my appointment with onco to let you know what happens.
Thank you again and thank you for looking into the Castleman's and CD23. You are amazing! God bless.
Tina
Ps - will send you a note tomorrow evening after my appointment with onco to let you know what happens.
COMMUNITY LEADER
The *loss* of the fatty hilum does not necessarily mean cancer, because other conditions can cause loss of the hilum. But the presence of the hilum almost always means not-cancer, unless as mentioned when the cancer is still very new and small. That's because the cancer cells replace the normal cells in the hilum. The fatty hilum would mainly be mentioned on ultrasound reports.
"... what they found on the preliminary... is that always more or less 100% accurate in your opinion?"
What they found about CD5+ etc would not be in error (unless they mixed you up with somebody else's tests). But the conclusion might be in error or be uncertain. Also, what was seen with the staining+microscope could be uncertain as to what it means; it might not point clearly one way or the other, like the GP says.
The onc might say you have atypical lymphoid hyperplasia, let's wait and see if it changes. Or might say: let's do genetic tests to look for cell mutations that define SLL -- you should definitely want that done. The onco might say: let's schedule another CT scan in the future to see if the nodes continue to grow or not.
I didn't find anything definitive about the CD23, sorry. Overall that's up in the air.
Good luck tomorrow, Tina! You have a great attitude.
"... what they found on the preliminary... is that always more or less 100% accurate in your opinion?"
What they found about CD5+ etc would not be in error (unless they mixed you up with somebody else's tests). But the conclusion might be in error or be uncertain. Also, what was seen with the staining+microscope could be uncertain as to what it means; it might not point clearly one way or the other, like the GP says.
The onc might say you have atypical lymphoid hyperplasia, let's wait and see if it changes. Or might say: let's do genetic tests to look for cell mutations that define SLL -- you should definitely want that done. The onco might say: let's schedule another CT scan in the future to see if the nodes continue to grow or not.
I didn't find anything definitive about the CD23, sorry. Overall that's up in the air.
Good luck tomorrow, Tina! You have a great attitude.
1 Comments
Thank you again Ken for this info... it really helps me to understand more of whats really going on! You are a godsend and a wealth of knowledge. I guess theres always wishful thinking as this is all so new to me and is a foreign language. At the end of the day I am hoping for the best outcome (and really hope he doesnt send me for a bone marrow biop as I am hoping if its there ... its just in the nodes and no where else). Thanks again for taking the time to research the CD23 for me.
Will send you info tomorrow eve after appointment.
With gratitude
Tina
Tina
Will send you info tomorrow eve after appointment.
With gratitude
Tina
Tina
COMMUNITY LEADER
If the onco were to say: let's start the harsh type of chemo ASAP, I'd be surprised and ask why we don't test first to see how aggressive it is. I'd want to think that over for sure.
2 Comments
Im actually at a loss for words with respect to the last appt I had with the onco... because at that time - we only had the fine needle biopsy report and it indicated atypical hyperplasia and further investigation is required (by removing the whole node) to get a definitive diagnosis. The onco said it was good news because really there was no cancer according to that report and he felt they got 3 really good samples with the needles so if there was a cancer that was aggressive something would have showed up. So he agreed to have the node removed altogether to get to the bottom of this. I agree in that I would hope that he would not start with a harsh type of chemo and investigate further. Its just of strange how they called me to come tomorrow when my appt was scheduled for Wed..... it kind of made me think - is there something further they know, perhaps they have the other part of the report. I only have the preliminary (the first one I sent you) and the fine needle biop report plus CT scan.
And then of course one wonders... what this really is as it is somewhat strange the way it came about with the one node that was hurting me and inflamed (on the far right of my right breast way below the axilla) everything else was found as a fluke. I had no idea because all those other nodes are really deep and even my family gp could not feel them. Not to mention the yearly appts at the onco who also never felt them. Its all so strange.
Sorry for the long msg.
Thank you again.
Tina
And then of course one wonders... what this really is as it is somewhat strange the way it came about with the one node that was hurting me and inflamed (on the far right of my right breast way below the axilla) everything else was found as a fluke. I had no idea because all those other nodes are really deep and even my family gp could not feel them. Not to mention the yearly appts at the onco who also never felt them. Its all so strange.
Sorry for the long msg.
Thank you again.
Tina
PS ... I hope Im not keeping you up or away from your family. I am from Canada and it is 5:40 pm here.
COMMUNITY LEADER
Well, I don't claim to be an expert on SLL but I think all this info will help you tomorrow. The onco might be surprised at how much you know - some docs appreciate that :)
Yes, after hearing all your info and history, I think you have every reason to hope that this is not really SLL. It is very strange, and you had a sense about that all along. So you can rightfully give yourself kudos for that.
Needle biopsies can give false negatives, if by chance the bad spots are missed. But they did take a lot of samples so that's less likely.
If you have the mental energy, you can reread this thread to coalesce the knowledge. There was a lot in just two days. Best of luck to you. I will certainly be waiting to hear what happened.
Yes, after hearing all your info and history, I think you have every reason to hope that this is not really SLL. It is very strange, and you had a sense about that all along. So you can rightfully give yourself kudos for that.
Needle biopsies can give false negatives, if by chance the bad spots are missed. But they did take a lot of samples so that's less likely.
If you have the mental energy, you can reread this thread to coalesce the knowledge. There was a lot in just two days. Best of luck to you. I will certainly be waiting to hear what happened.
1 Comments
Hi Ken,
I had my appointment yesterday. It turned out to be an extremely emotional day .....I literally had to take 2 doses of ativan. It turns out that I was feeling rather unwell on Monday and returned to my GP in the afternoon well before my appt with the onco. My GP had the last pathology report from the biopsy, he decided to review it with me and it basically confirmed the diagnosis of CLL/SLL. He continued to tell me that I would need alot of chemo and would need to take a leave of absence from my job.. and it would be approx a one year recovery period for me. I was not prepared to hear this, especially when I had gone to see him for another issue, which had nothing to do with the CLL/SLL and I was totally alone. I never even got to show him the material from the links (re castlemans disease) to him as I had printed it. It really made me sad and depressed to the point where I could not even drive myself home. Anyways, when I did finally get home, I was a total mess and waited for my husband and my cousin to meet me so we could proceed to the onco app which was later in the day. When we got there, the onco was one and a half hour late... so we waited patiently. He has been my onco for 10 years now and i really trust him, so went in and just listened to what he had to say and basically he confirmed the diagnosis and said from this point on he would be monitoring me for the rest of my life and would be sending me for CT scans and blood work every 3 months for a period of time and then 6 months etc and then yearly. Interestingly... he is also sending me for blood work for genetic mutation. They will check the nodes on the CT scan and if they get quite a bit larger then he would proceed with a type of chemo (in a pill form) and said that if this becomes the case that this treatment is highly successful. In the meantime he doesnt want to treat me now unless it gets to that point. He also said this is much better than if it were a breast cancer recurrence (as that would have been a disaster.. given that I had alot of enlarged nodes). Given the circumstances I felt this was a much better and more positive outcome than what my GP had given me. Also.. I have breast implants (from my reconstruction) that that were recently recalled due to a lymphoma that is caused by implants. (Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) . Initially there was a scare that - this is what I had... but they outruled that type of lymphoma in the pathology report. Having said that... they have recommended that the implants be removed sooner than later.... as the node I had was extremely close to the right implant... and there was talk at some point that inflammation may have been caused by my body now rejecting the implants . Today I received a call from the hospital setting up a time for me to have the implants removed next week . Once this is done then I have to follow up with the onco as requested. So its been an emotional day/night for me. I will keep you posted and am so grateful to have met such a kind a helpful person. You have no idea how much you put my mind at ease and helped me during this very difficult time. THANK YOU. Will be in touch with more news when I receive it.
Kind regards
Tina
I had my appointment yesterday. It turned out to be an extremely emotional day .....I literally had to take 2 doses of ativan. It turns out that I was feeling rather unwell on Monday and returned to my GP in the afternoon well before my appt with the onco. My GP had the last pathology report from the biopsy, he decided to review it with me and it basically confirmed the diagnosis of CLL/SLL. He continued to tell me that I would need alot of chemo and would need to take a leave of absence from my job.. and it would be approx a one year recovery period for me. I was not prepared to hear this, especially when I had gone to see him for another issue, which had nothing to do with the CLL/SLL and I was totally alone. I never even got to show him the material from the links (re castlemans disease) to him as I had printed it. It really made me sad and depressed to the point where I could not even drive myself home. Anyways, when I did finally get home, I was a total mess and waited for my husband and my cousin to meet me so we could proceed to the onco app which was later in the day. When we got there, the onco was one and a half hour late... so we waited patiently. He has been my onco for 10 years now and i really trust him, so went in and just listened to what he had to say and basically he confirmed the diagnosis and said from this point on he would be monitoring me for the rest of my life and would be sending me for CT scans and blood work every 3 months for a period of time and then 6 months etc and then yearly. Interestingly... he is also sending me for blood work for genetic mutation. They will check the nodes on the CT scan and if they get quite a bit larger then he would proceed with a type of chemo (in a pill form) and said that if this becomes the case that this treatment is highly successful. In the meantime he doesnt want to treat me now unless it gets to that point. He also said this is much better than if it were a breast cancer recurrence (as that would have been a disaster.. given that I had alot of enlarged nodes). Given the circumstances I felt this was a much better and more positive outcome than what my GP had given me. Also.. I have breast implants (from my reconstruction) that that were recently recalled due to a lymphoma that is caused by implants. (Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) . Initially there was a scare that - this is what I had... but they outruled that type of lymphoma in the pathology report. Having said that... they have recommended that the implants be removed sooner than later.... as the node I had was extremely close to the right implant... and there was talk at some point that inflammation may have been caused by my body now rejecting the implants . Today I received a call from the hospital setting up a time for me to have the implants removed next week . Once this is done then I have to follow up with the onco as requested. So its been an emotional day/night for me. I will keep you posted and am so grateful to have met such a kind a helpful person. You have no idea how much you put my mind at ease and helped me during this very difficult time. THANK YOU. Will be in touch with more news when I receive it.
Kind regards
Tina
COMMUNITY LEADER
Oh no, that was some terribly bad luck, Tina. I can't imagine why the GP talked that way - completely out of line and causing so much needless anguish. What he was apparently referring to is called a "stem cell transplant" - that is the most extreme treatment and there is no reason to think that would be called for right off the bat. I'd be very leery of what he says about cancer from now on.
Terrible luck again with the 1.5 hour wait, that must have been awful to endure given the prior experience with the GP. At least your luck finally turned good, with being told by the onco that you would be only put on watch-and-wait, with no immediate treatment needed. We had discussed that as being the best thing that an SLL patient could hear.
Also predicted was that the onco would say that you have SLL. If I understand you correctly, with all the stress, you didn't really have the opportunity to ask about Castleman's. After a week or so to put this stress away, you might email to him and put forward the case about Castleman's. Or... wait a minute, how about we just wait for the results of the genetic testing? If no SLL gene mutations are found, only *then* is the time to bring up Castleman's. There is still some hope for that. But now is the time to just coast and to relax if you can. When you do think about this, you can hope that the onco will say, "wow, this really is a strange case... there were no SLL mutations found". Maybe that's not likely, but it is possible.
You are a very reactive person and to my mind that comes along with a very reactive immune system. (There wasn't really time to ask about if you've had a long personal history, or family history, of unusual immune conditions.) So yes, removing the silicone is a great idea. You might find that you feel much better all around physically and emotionally, starting in a very short time. If so, that means you were indeed having some bad reaction and that would include inflammation.
I'm sorry to hear you had such a rough time; but very glad that it turned out pretty well, all things considered. I'll certainly be wanting to hear the updates. Take good care of yourself.
Terrible luck again with the 1.5 hour wait, that must have been awful to endure given the prior experience with the GP. At least your luck finally turned good, with being told by the onco that you would be only put on watch-and-wait, with no immediate treatment needed. We had discussed that as being the best thing that an SLL patient could hear.
Also predicted was that the onco would say that you have SLL. If I understand you correctly, with all the stress, you didn't really have the opportunity to ask about Castleman's. After a week or so to put this stress away, you might email to him and put forward the case about Castleman's. Or... wait a minute, how about we just wait for the results of the genetic testing? If no SLL gene mutations are found, only *then* is the time to bring up Castleman's. There is still some hope for that. But now is the time to just coast and to relax if you can. When you do think about this, you can hope that the onco will say, "wow, this really is a strange case... there were no SLL mutations found". Maybe that's not likely, but it is possible.
You are a very reactive person and to my mind that comes along with a very reactive immune system. (There wasn't really time to ask about if you've had a long personal history, or family history, of unusual immune conditions.) So yes, removing the silicone is a great idea. You might find that you feel much better all around physically and emotionally, starting in a very short time. If so, that means you were indeed having some bad reaction and that would include inflammation.
I'm sorry to hear you had such a rough time; but very glad that it turned out pretty well, all things considered. I'll certainly be wanting to hear the updates. Take good care of yourself.
1 Comments
Hi ken, Its me again, sorry to bother you.. I have a question and although its not really lymphoma related.. you were so knowledgeable that I thought I would run this by you.... In January I woke up with pain in the bladder... and went to the dr.. we both agreed it was a bladder infection ( I have always suffered bladder infections throughout my life.. in fact at one point about 20 yrs ago or so my previous dr referred me to a urologist and he did a cystoscopy, which was fine and they gave me long term mild antibiotics for alleviate recurrence). having said this .. I had an infection last July and then this January and then it came back March 7th or so when all the CLL stuff was happening to me. On March 7th, my dr gave me another prescription for cypro and sent the urine to lab... the results were that there was NO infection present, but microscopic blood in urine. I finished the antibiotics on March 21st and had a follow up today March 25th... apparently the blood still shows up in my urine so dr sent urine off to lab again and booked me an ultrasound of kidneys/bladder. When I had the full body CT scan with contrast.. it indicated that the kidneys were normal, but didnt not mention the bladder. I dont see any blood in my urine when I go to the bathroom so its mcroscopic only,I checked my results on line just now and it indicates blood again in the urine but its awaiting the rest of the results re infection. Im scared again.. in your opinion do you think this has anything to do with the CLL? again... thank you so much for your wealth of knowlege and support and expertise. I cant tell you how much I appreciate it.
Warm regards
Tina
Warm regards
Tina
COMMUNITY LEADER
Hi again, Tina. This looks very much like what is called 'sterile inflammation' that mimics a UTI. That brings us back to an overactive immune system. That does therefor tend a little to supporting the idea of having Castleman's - a mystery immune condition..
I wouldn't take any more antibiotics unless there is a positive test for infection first. Too much antibiotics over and over can be harmful.
Do you have intestinal problems? That would contribute.
When will your genetic tests be back?
I wouldn't take any more antibiotics unless there is a positive test for infection first. Too much antibiotics over and over can be harmful.
Do you have intestinal problems? That would contribute.
When will your genetic tests be back?
1 Comments
Hi Ken.... I had a colonscopy last month and they removed two polyps that were fine and said I have diverticulitis, but thats about it. I am having an Ultrasound of bladder / kidneys tomorrow morning and my doctor sent the urine to the lab again. The first part of the report came back with blood in the urine but the culture (indicating if theres infection or not has not come back yet ) my doctor thinks it will come back again with no infection. I just had the genetic test done and I have a follow up with Onco on April 29th. Im so tired of all this.. not to mention Ive gained 12 pounds just from eating to stay alert as I have no energy and eat to try and combat that... which is not the best thing to do. Thank you for your response... I was worried about this being bladder cancer and got scared. do you know off hand if there is anything I can do for this condition?
Again, thank you so much for your help. God bless.
Tina
Again, thank you so much for your help. God bless.
Tina
COMMUNITY LEADER
Tina, did any doc mention "interstitial cystitis"? That would be inflammation of the bladder.
Sorry to say, but the extreme stress that just won't stop might be what's causing causing flareups. Other than that, I don't know - except maybe to recommend trying to be as anti-inflammatory as possible.
Your immune system reacting to the silicone might be a factor. I don't know how long after the removal that would stop being a factor.
I wouldn't guess at all that this is CLL in the bladder... which maybe would result in pronounced and visible red in the urine. I think, though, that inflammation does commonly result in microscopic amounts. Don't hesitate to post again whenever you might feel like it. I wish you the best, you certainly deserve a break.
Sorry to say, but the extreme stress that just won't stop might be what's causing causing flareups. Other than that, I don't know - except maybe to recommend trying to be as anti-inflammatory as possible.
Your immune system reacting to the silicone might be a factor. I don't know how long after the removal that would stop being a factor.
I wouldn't guess at all that this is CLL in the bladder... which maybe would result in pronounced and visible red in the urine. I think, though, that inflammation does commonly result in microscopic amounts. Don't hesitate to post again whenever you might feel like it. I wish you the best, you certainly deserve a break.
COMMUNITY LEADER
"I had a colonscopy last month..."
Tina, I very much recommend that you refuse any more medical appointments that are not very necessary at this time.
You need to shield yourself and get pampered. Please shield yourself as much as possible from stress, get others to do things for you. This is very important for your physical health.
Tina, I very much recommend that you refuse any more medical appointments that are not very necessary at this time.
You need to shield yourself and get pampered. Please shield yourself as much as possible from stress, get others to do things for you. This is very important for your physical health.
1 Comments
Hi Ken,
You are so kind and knowledgeable! and boy am I glad i found this forum. I was scheduled to have the implants removed on March 22nd, but the surgeon met with me and mentioned that becuz CLL is not linked to the silicone implants they pushed my surgery date back to 6 months or so down the road (apparently thats government protocol) My dr on the other hand is quite adamant that the implants have had something somewhat to do with the whole ordeal and feels that once they are removed things will improve immensely.... but unfortunately they've pushed my surgery date back and Im at their mercy. The good thing is today I did have an ultrasound of the bladder/kidneys and the technician was kind enough to tell me the bladder looked fine and there was no thickening of the lining per say and kidneys look good other than she mentioned a tiny bit of calcification (stone maybe), and said it was not cancer... so at least that was positive. I am going to try to push to get the implants out of my body sooner than later so will be call ing my dr to contact the surgeon once again. I will be getting the blood work for the genetic results on Apr 29 when I see onco .. will keep you posted. The surprising thing is though.. there is no way I had CLL for a long time becuz... I had two nodes removed when I had my breasts removed and they were both clean just fatty nodes , which I would think would have showed up then. So Im thinking this CLL came on quite recently. Incidentally I had something similar to intercystis approx 20 yrs ago. Thats very interesting... Yes you are absolutely rite.. I need to shield myself from stress.. that is very important. Thank you Ken for being so kind and such a god send.
Ps Theres been alot on the news lately about breast cancer from implants - Check this out https://www.ctvnews.ca/health/breast-implants-linked-to-cancer-allowed-in-canada-despite-ban-in-40-countries-1.4350090
I feel that although CLL is not the same... the node that started this whole ordeal for me is 2 to 3 inches from my implant (its in a weird spot) Its gotta somehow be connected?
Warm regards
Tina
You are so kind and knowledgeable! and boy am I glad i found this forum. I was scheduled to have the implants removed on March 22nd, but the surgeon met with me and mentioned that becuz CLL is not linked to the silicone implants they pushed my surgery date back to 6 months or so down the road (apparently thats government protocol) My dr on the other hand is quite adamant that the implants have had something somewhat to do with the whole ordeal and feels that once they are removed things will improve immensely.... but unfortunately they've pushed my surgery date back and Im at their mercy. The good thing is today I did have an ultrasound of the bladder/kidneys and the technician was kind enough to tell me the bladder looked fine and there was no thickening of the lining per say and kidneys look good other than she mentioned a tiny bit of calcification (stone maybe), and said it was not cancer... so at least that was positive. I am going to try to push to get the implants out of my body sooner than later so will be call ing my dr to contact the surgeon once again. I will be getting the blood work for the genetic results on Apr 29 when I see onco .. will keep you posted. The surprising thing is though.. there is no way I had CLL for a long time becuz... I had two nodes removed when I had my breasts removed and they were both clean just fatty nodes , which I would think would have showed up then. So Im thinking this CLL came on quite recently. Incidentally I had something similar to intercystis approx 20 yrs ago. Thats very interesting... Yes you are absolutely rite.. I need to shield myself from stress.. that is very important. Thank you Ken for being so kind and such a god send.
Ps Theres been alot on the news lately about breast cancer from implants - Check this out https://www.ctvnews.ca/health/breast-implants-linked-to-cancer-allowed-in-canada-despite-ban-in-40-countries-1.4350090
I feel that although CLL is not the same... the node that started this whole ordeal for me is 2 to 3 inches from my implant (its in a weird spot) Its gotta somehow be connected?
Warm regards
Tina
COMMUNITY LEADER
Tina, your thinking is excellent on every point, including about the unusual location of the first node. Bravo to you.
I did read the link you posted. The more that I read about this, the more I'm personally convinced that it is all very true in your case. There's possibly even a small chance that once the implants are removed, the nodes might shrink somewhat because there's not that constant inflammatory stimulus anymore. Your primary doctor seems to be a very good one. Very, very good.
I'm glad you had a great, informative ultrasound tech that gave the good news right then. Is it possible that you can get the report on the genetic testing directly to yourself - so that you don't have to wait for the appt with the onco to know the results?
I did read the link you posted. The more that I read about this, the more I'm personally convinced that it is all very true in your case. There's possibly even a small chance that once the implants are removed, the nodes might shrink somewhat because there's not that constant inflammatory stimulus anymore. Your primary doctor seems to be a very good one. Very, very good.
I'm glad you had a great, informative ultrasound tech that gave the good news right then. Is it possible that you can get the report on the genetic testing directly to yourself - so that you don't have to wait for the appt with the onco to know the results?
1 Comments
I am not sure about the genetic testing and how long it takes. When I had the genetic test done 10 yrs ago for BRCCA 1 and 2... it took a year to get the results... the government covered the cost becuz both my sister and I had BC within a month apart. At that time... Canada did not have the same resources that the US had for the genetic testing as they sent my blood down to the states for analyzing. This time the Onco set it up and I believe its being done here and I think although it takes time - it definitely wont be a year as I should receive results at my next appt on Apr 29th...but will look into this matter further also. Now.. I am not going to lie, I have shed quite a few tears the last few days... I cant believe this is happening to me ... this CLL its bothersome and Im sad and hope Im going to be OK but it still worries me. They gave me a booklet on CLL from the Canadian Cancer Society and im reading things that are scaring me. Also... I thought I read in it somewhere that this disease is more common in men than women and although it usually appears after 50 its more common in the 70's. Im 57 and am female... and the fact that it started next to my breast just seems so uncanny and leads me to believe somehow its linked to these implants and they wont remove them right away now due to government protocol. I had clean nodes when i had my mastecomies so its just so weird. I am becoming quite disturbed with the medical system here in Canada. We have the best extended health coverage through our employer... you could not get any better and Im feeling like they are throwing me under the bus. I am sorry to babble on.. Im just so sad and dissappointed. And now this CLL is starting to freak me out. The Onco says he has seen people live with it for 30 yrs but now im thinking... if the implants dont come out right away... am I making it worse?
Thank you soooo much for all your wisdom and help. I just dont know anymore where to turn.
Warm regards
Tina
Thank you soooo much for all your wisdom and help. I just dont know anymore where to turn.
Warm regards
Tina
COMMUNITY LEADER
I believe that CLL is known for only rarely going outside of nodes. I'd say that it's important to be aware of anything that seems suspicious, but then to not get carried away with that and drive yourself ragged. Sorry, I know that must be very difficult to do.
However, you did have the experience with the bladder that was alarming, but turned out to be a false alarm. I hope you don't have any more alarming things; but if they unfortunately do come then there is reason to believe that they, too, can be false alarms.
When my father had lymphoma, I always tried to learn as much as possible about the range of outcomes that were reasonable to expect. There's always a range of what might happen. Then I chose to deliberately believe the best out of those.
However, you did have the experience with the bladder that was alarming, but turned out to be a false alarm. I hope you don't have any more alarming things; but if they unfortunately do come then there is reason to believe that they, too, can be false alarms.
When my father had lymphoma, I always tried to learn as much as possible about the range of outcomes that were reasonable to expect. There's always a range of what might happen. Then I chose to deliberately believe the best out of those.
1 Comments
Hello Ken, Hope all is well with you and your are safe with all the COVID issues in the world. Im not sure if you remember all my issues when we last spoke a year ago. But just wanted to thank you again for all your help the past year .. you have been a wealth of knowledge for me and kept me from breaking down on more than one occasion. Not much has happened in the last year other than that my implants were finally removed. Strangely I had a CT scan 6 to 8 months later.. and the onco was surprised to see that the report read that my nodes were almost of normal range and that treatment was working... however I had not received any treatment. This was good news. I continue to move along, and am now preparing for my next routine CT Scan to see how things are moving along and had some blood work done. These are the results from the blood work: The only thing that stands out that they flagged was the WBC it is reading at 10.7. (the rest seems to be within reach - the lymphocites and monocites seem to be ok) I believe normal range is up to 10 for the WBC. I am so worried now ... is this 10.7 WBC reading something for me to be worried about? I dont see the onco until Sept as I am awaiting for the next CT.. which I am hoping is a positive scan like my last. Also.. a month ago or so.. I started to experience headaches on the upper right side of my head and asked the Onco secretary to request a scan of my head to be done as well since they are doing the whole body anyways. I am now worried that I have an aneurisim or a tumor. I am so sorry to bother you.. but you were so helpful and a godsend to me last time.. I wondered if you could shed some light once again. God bless you and thank you. I am so sorry to bother you. Kindest Regards Tina
Hematology
WBC
A10.7
4.0-10.0
10*9/L
RBC4.49
3.50-5.00
10*12/L
Hemoglobin 127
115-155
g/L
Hematocrit
0.38
0.35-0.45
L/L
MCV
85
82-98
fl
MCH
28.3
27.5-33.5
pg
MCHC
333
300-370
g/L
RDW
13.1
11.5-14.5
%
Platelet Count
342
150-400
10*9/L
Differential
Neutrophils
6.7
2.0-7.5
10*9/L
Lymphocytes
3.0
1.0-4.0
10*9/L
Monocytes
0.8
0.1-0.8
10*9/L
Eosinophils
0.1
0.0-0.7
10*9/L
Basophils
0.0
0.0-0.2
10*9/L
Granulocytes Immature
0.0
0.0-0.1
10*9/L
General Chemistry
Sodium
140
135-145
mmol/L
Potassium
4.5
3.5-5.0
mmol/L
Creatinine
75
45-90
umol/L
Estimated GFR
76
>=60
Units for eGFR are mL/min/1.73sq.m
Kidney function estimate based on
assumption of a stable serum creatinine
concentration: diet, drugs, pregnancy,
clinical state and muscle mass can affect
accuracy of the estimate. Urinary ACR may
assist interpretation.
See www.bcguidelines.ca/pdf/ckd.pdf
Calcium
2.44
2.10-2.60
mmol/L
Total Bilirubin
4
<17
umol/L
Alkaline Phosphatase
93
35-120
U/L
Gamma GT
18
<31
U/L
Alanine Aminotransferase
20
<36
U/L
Lactate Dehydrogenase
175
<225
U/L
Serum Proteins
Protein Electrophoresis
Total Protein
69
60-80
g/L
Protein Electrophoresis
Albumin
41.3
35.0-50.0
g/L
Alpha 1 Globulin
3.2
2.0-4.0
g/L
Alpha 2 Globulin
7.2
5.0-9.0
g/L
Beta 1 Globulin
4.7
3.0-6.0
g/L
Beta 2 Globulin
3.2
2.0-5.0
g/L
Gamma Globulin
9.2
7.0-14.0
g/L
Pattern
No paraprotein band is seen on routine
electrophoresis at this time.
Hematology
WBC
A10.7
4.0-10.0
10*9/L
RBC4.49
3.50-5.00
10*12/L
Hemoglobin 127
115-155
g/L
Hematocrit
0.38
0.35-0.45
L/L
MCV
85
82-98
fl
MCH
28.3
27.5-33.5
pg
MCHC
333
300-370
g/L
RDW
13.1
11.5-14.5
%
Platelet Count
342
150-400
10*9/L
Differential
Neutrophils
6.7
2.0-7.5
10*9/L
Lymphocytes
3.0
1.0-4.0
10*9/L
Monocytes
0.8
0.1-0.8
10*9/L
Eosinophils
0.1
0.0-0.7
10*9/L
Basophils
0.0
0.0-0.2
10*9/L
Granulocytes Immature
0.0
0.0-0.1
10*9/L
General Chemistry
Sodium
140
135-145
mmol/L
Potassium
4.5
3.5-5.0
mmol/L
Creatinine
75
45-90
umol/L
Estimated GFR
76
>=60
Units for eGFR are mL/min/1.73sq.m
Kidney function estimate based on
assumption of a stable serum creatinine
concentration: diet, drugs, pregnancy,
clinical state and muscle mass can affect
accuracy of the estimate. Urinary ACR may
assist interpretation.
See www.bcguidelines.ca/pdf/ckd.pdf
Calcium
2.44
2.10-2.60
mmol/L
Total Bilirubin
4
<17
umol/L
Alkaline Phosphatase
93
35-120
U/L
Gamma GT
18
<31
U/L
Alanine Aminotransferase
20
<36
U/L
Lactate Dehydrogenase
175
<225
U/L
Serum Proteins
Protein Electrophoresis
Total Protein
69
60-80
g/L
Protein Electrophoresis
Albumin
41.3
35.0-50.0
g/L
Alpha 1 Globulin
3.2
2.0-4.0
g/L
Alpha 2 Globulin
7.2
5.0-9.0
g/L
Beta 1 Globulin
4.7
3.0-6.0
g/L
Beta 2 Globulin
3.2
2.0-5.0
g/L
Gamma Globulin
9.2
7.0-14.0
g/L
Pattern
No paraprotein band is seen on routine
electrophoresis at this time.
COMMUNITY LEADER
Hi, Tina. Yes, I do remember you. It's very good to hear that removal of the implants has let the nodes go back down to normal. That's wonderful news. Hopefully, your overall health has improved also.
I wouldn't worry about the WBC. First off, it's only slightly high. Also, it might be up a little, just because of stress. Think of it this way: let's say you are in the woods and you see a bear. The stress reaction involves putting more immune cells into circulation, in case the person gets wounded. That same reaction can occur even if there is no physical danger. Also, you'd said in the past that your WBC is usually a little high. Overall, there is no reason at all to think of any blood cancer.
As for the headaches? I don't know, except that if they are not severe, that might be from stress, too. Nobody can blame you for being very stressed, after everything you've been through.
Since your enlarged nodes and everything associated with that turned out to not be from any spreading of cancer, there is even less reason to think that you might have a brain tumor. In fact, having a very reactive immune system can actually be protective against any future cancer.
And thanks for the compliments :) Write again anytime if you have any other concerns, it's not a bother at all. I think you'll be very happy with the results of your upcoming CT.
I wouldn't worry about the WBC. First off, it's only slightly high. Also, it might be up a little, just because of stress. Think of it this way: let's say you are in the woods and you see a bear. The stress reaction involves putting more immune cells into circulation, in case the person gets wounded. That same reaction can occur even if there is no physical danger. Also, you'd said in the past that your WBC is usually a little high. Overall, there is no reason at all to think of any blood cancer.
As for the headaches? I don't know, except that if they are not severe, that might be from stress, too. Nobody can blame you for being very stressed, after everything you've been through.
Since your enlarged nodes and everything associated with that turned out to not be from any spreading of cancer, there is even less reason to think that you might have a brain tumor. In fact, having a very reactive immune system can actually be protective against any future cancer.
And thanks for the compliments :) Write again anytime if you have any other concerns, it's not a bother at all. I think you'll be very happy with the results of your upcoming CT.
1 Comments
Hi again Ken. first of all THANK YOU!!!! You brought me out of my depressed mood last year and once again you are giving me much hope and encouragement. If its not too much trouble.. may I ask.. if there were any signs showing up in my blood test results indicating there is CLL... what else would show elevated? Because I am hoping this slight elevation of the WBC is from just anything... but I am curious would it be the lympocites that would be elevated? I am also hoping that my CT is normal.. I dont have a scheduled date for it yet.. It should be within the next month or so. and then Onco in Sept.. I will keep you posted on the results. Lastly... .have you ever heard of the CLL almost completely disappearing 8 months after the removal of the implants... the family dr and onco both think that the silicone implants played a role. Anyways... thank you again so so so so much for your quick response.. I literally was up all night .. it is 8:06 am here and I will be leaving for work. BUT AGAIN.. I am so grateful for your wisdom, help and support to get me through this.
Kindest
Tina
Kindest
Tina
COMMUNITY LEADER
"would it be the lymphocytes that would be elevated?"
Yes, they would in CLL.
"any signs showing up in my blood test results indicating there is CLL?"
No, and even your "globulins" are normal, whereas they can be *low* for CLL, and probably also for SLL.
"have you ever heard of the CLL almost completely disappearing 8 months after the removal of the implants"
No, but it seems very curious. It's a medical mystery. It seems enough for an oncologist to perhaps possibly re-evaluate everything that happened before.
The implants were apparently stimulating the immune system to react. Is removing that stimulation enough to make a cancer regress? I don't know, but I think that would happen very rarely, if ever; but otherwise maybe it means there never was actual CLL/SLL, just something that looked like it.
Did you ever talk to any doc about Castleman's mimicking CLL/SLL? I seem to remember that your primary doc was my favorite.
Yes, they would in CLL.
"any signs showing up in my blood test results indicating there is CLL?"
No, and even your "globulins" are normal, whereas they can be *low* for CLL, and probably also for SLL.
"have you ever heard of the CLL almost completely disappearing 8 months after the removal of the implants"
No, but it seems very curious. It's a medical mystery. It seems enough for an oncologist to perhaps possibly re-evaluate everything that happened before.
The implants were apparently stimulating the immune system to react. Is removing that stimulation enough to make a cancer regress? I don't know, but I think that would happen very rarely, if ever; but otherwise maybe it means there never was actual CLL/SLL, just something that looked like it.
Did you ever talk to any doc about Castleman's mimicking CLL/SLL? I seem to remember that your primary doc was my favorite.
1 Comments
Hi again, You are really a godsend. I am so thankful for all the info you provided. I am so stressed these days... I don't think I've ever mentioned but I also have a heart condition that was also diagnosed last year " Atrial Flutter" and so while I was enduring all the stuff with the new diagnosis of CLL and removal of the implants.. I also had a cardiac heart ablation, which at the time they also found SVT (Supraventricular tachycardia ), which they also apparently took care of. However, after having the procedures several months later, I started having the symptoms again, thus the ablation did not work for me.
Just wanted to mention and ask....when I had the CLL diagnosis last year.. I had a lymphnode on my neck that was somewhat swollen. As of today.. I cannot even feel that its there... would that be an indication that all the nodes in the body would be normal or small in size?
I can't thank you enough.. You have brought my anxiety level down! I will definitely let you know when I receive the CT scan and the results... it might not be till Sept as that is when I see my oncologist for results.
Kindest regards
Tina
Just wanted to mention and ask....when I had the CLL diagnosis last year.. I had a lymphnode on my neck that was somewhat swollen. As of today.. I cannot even feel that its there... would that be an indication that all the nodes in the body would be normal or small in size?
I can't thank you enough.. You have brought my anxiety level down! I will definitely let you know when I receive the CT scan and the results... it might not be till Sept as that is when I see my oncologist for results.
Kindest regards
Tina
COMMUNITY LEADER
Tina, I would look at the upcoming CT as a way of hearing that "hooray, everything looks good!"
1 Comments
Also.. forgot to mention... I did give the info to the onco re castlemans and he did not say much other than ... everything he has seen with my case has been very different.
Kindest
Kindest
COMMUNITY LEADER
"would that be an indication that all the nodes in the body would be normal or small in size?"
It sure seems like they should all be behaving the same, yes. If you could have an ultrasound to see the fatty hilum on what was the biggest one, that should settle your nerves immediately. Maybe even your primary doc could do that in their office. (But a CT shouldn't be able to see the hilum unless contrast is used.)
"everything he has seen with my case has been very different"
Yep, and that turns out to be good :)
It sure seems like they should all be behaving the same, yes. If you could have an ultrasound to see the fatty hilum on what was the biggest one, that should settle your nerves immediately. Maybe even your primary doc could do that in their office. (But a CT shouldn't be able to see the hilum unless contrast is used.)
"everything he has seen with my case has been very different"
Yep, and that turns out to be good :)
2 Comments
Thank you again Ken. It puts my mind at ease. Thats a great suggestion for ultrasound... but... we have to make appointments for ultrasounds as a result it might take a while to get one so I may probably just wait for the CT, which will be with contrast. I am hoping for good results. You have given me hope and for that I thank you profusely. I will definitely keep you posted and may bother you with more questions if I think of any.
Kindest regards and god bless!
Kindest regards and god bless!
Hello again Ken, Hope you are well and keeping safe. I wanted to update you with the results of my ct scan in July. I had a virtual appointment with my oncologist a few days ago. Apparently all the nodes are pretty much down to normal with the exception of one slightly enlarged one under my left arm pit, which he claims is not anything that I should worry about. I recall when I had my mastecomies back 10 yrs ago.. they removed two enlarged (fatty) nodes and they were cancer free. Which he believes confirms that the CLL did not exist when I had my breast cancer surgeries. He is baffled in the way that the CLL is behaving and believes that there is a probability that it could have been brought on by the silicone implants as they have caused associated-Anaplastic Large Cell Lymphoma (BIA-ALCL) and at the end of the day.. he feels that CLL, is somewhat in the same "family". He has now changed my CT scans to yearly as opposed to every 6 months since the last 2 CT scans were good and favorable. The CT of my head was also good. I am hoping to get through the heart issues as I never feel the best anymore.. and for a long time I have had throbbing in my upper neck to upper chest bone (above breast area) and seem to feel nausea alot with these symptoms. My family GP cannot seem to diagnose what this is.. other than he feels its acid reflux and prescribed me with Nexium 40 mg (twice a day - long term) and trazodone 100 mg once a day to relax things. I feel so sick all the time and am starting to lose faith in that because its been going on for several years.. I am thinking if it was my esophagus it would have showed up on CT... and I have had an ablation for atrial flutter last may and a procedure for SVT (Supraventricular Tachycardia ). The cardiologist says everything is fine. They cant seem to find out what it is... I am so sorry to ramble on.. I'm just so grateful to you for listening and all your expertise and help. I am thrilled about the CT Scan results... now I just want to feel good once again. I am not sure if I can direct these questions to a specific forum, because I dont think its heart related... dont know who to turn to now. Any advice you have is greatly appreciated.
Thank you again so much! I hope you are keeping safe and are well given these crazy time with COVID. THANK YOU again so much! I cant tell you how grateful I am for your help.
Kindest
Tina
Thank you again so much! I hope you are keeping safe and are well given these crazy time with COVID. THANK YOU again so much! I cant tell you how grateful I am for your help.
Kindest
Tina
COMMUNITY LEADER
Yes, Tina, great news for you once again. You can happily relax even more now.
However, always remember that your system reacts in ways that are unusual. Specifically, I mean your *immune* system; and the immune system can do a large variety of mysterious things. Always stress that with any doc that you see for any reason. Your cancer scare was because of your unusual immune system reacting to the silicone implants. My guess is that your heart symptoms are probably also from your immune system. It's best for us to start by wondering if everything has the one cause.
"I am thinking if it was my esophagus it would have showed up on CT..."
Nope, and not necessarily show up even with using an endoscope that looks at the esophagus from inside. E.g., there is a condition called eosinophilic esophagitis (say that fast three times). That gets detected only by an endoscope that also has an attachment to take biopsy samples. Everything can look normal with a scope or with a CT or MRI or ultrasound scan, but only a biopsy would find immune cells called eosinophils. (But if the esophagus is really really bad after years, the damage can be seen visually.)
The biopsy involves taking tiny snips, or else dragging a sort of brush across the surface. Then the pathologist uses a microscope to look for eosinophils.
There shouldn't be eosinophils there, but if they are there then they might be reacting to something you eat or drink. You can keep a food diary, and correlate that with any symptoms esp nausea. Or you can try various 'elimination diets'. I'd ask for the biopsy, and try the other approaches while you wait. There are some meds for that, which relate to immune suppression.
"I am hoping to get through the heart issues as I never feel the best anymore."
Immune system chemicals can make a person feel bad. E.g., when a person has the flu, all the symptoms are from immune chemicals, not from the actual virus. You can say that you are feeling 'malaise', right?
"I have had throbbing in my upper neck to upper chest bone (above breast area)"
Do you mean that it is to one side, or that it is along the vertical centerline? This is the most important question for the moment.
"Nexium"
I'd ask the doc if it's ok to stop that. It isn't helping, but suppressing stomach acid constantly can have bad effects over time.
"trazodone"
Many many people with mystery immune conditions are told that "it's all in your head" and wrongly given antidepressants or tranquilizers.
"I am not sure if I can direct these questions to a specific forum"
Yes, to this forum right here :)
Thanks for the update, Tina!
However, always remember that your system reacts in ways that are unusual. Specifically, I mean your *immune* system; and the immune system can do a large variety of mysterious things. Always stress that with any doc that you see for any reason. Your cancer scare was because of your unusual immune system reacting to the silicone implants. My guess is that your heart symptoms are probably also from your immune system. It's best for us to start by wondering if everything has the one cause.
"I am thinking if it was my esophagus it would have showed up on CT..."
Nope, and not necessarily show up even with using an endoscope that looks at the esophagus from inside. E.g., there is a condition called eosinophilic esophagitis (say that fast three times). That gets detected only by an endoscope that also has an attachment to take biopsy samples. Everything can look normal with a scope or with a CT or MRI or ultrasound scan, but only a biopsy would find immune cells called eosinophils. (But if the esophagus is really really bad after years, the damage can be seen visually.)
The biopsy involves taking tiny snips, or else dragging a sort of brush across the surface. Then the pathologist uses a microscope to look for eosinophils.
There shouldn't be eosinophils there, but if they are there then they might be reacting to something you eat or drink. You can keep a food diary, and correlate that with any symptoms esp nausea. Or you can try various 'elimination diets'. I'd ask for the biopsy, and try the other approaches while you wait. There are some meds for that, which relate to immune suppression.
"I am hoping to get through the heart issues as I never feel the best anymore."
Immune system chemicals can make a person feel bad. E.g., when a person has the flu, all the symptoms are from immune chemicals, not from the actual virus. You can say that you are feeling 'malaise', right?
"I have had throbbing in my upper neck to upper chest bone (above breast area)"
Do you mean that it is to one side, or that it is along the vertical centerline? This is the most important question for the moment.
"Nexium"
I'd ask the doc if it's ok to stop that. It isn't helping, but suppressing stomach acid constantly can have bad effects over time.
"trazodone"
Many many people with mystery immune conditions are told that "it's all in your head" and wrongly given antidepressants or tranquilizers.
"I am not sure if I can direct these questions to a specific forum"
Yes, to this forum right here :)
Thanks for the update, Tina!
1 Comments
Hello Ken,
How are things! I have some updates and am hoping once again with your expertise you could guide me or give me any insight. You have been such a god send to me and I am so grateful for that.... Here is the latest... sorry to bombard you....
I had my first vaccine (Moderna) on March 21st. I was diligent in every possible way... I continued to wear my mask and even doubled it at times, and always sanitized. On April 1st at 10:00 pm, I developed a cough and headache, but never had a fever or loss of taste or smell. I had the doctor prescribe zithromax an antibiotic for bronchitis and started taking it immediately as I thought I had bronchitis. I went for a covid test on April 3rd and found out today that I am positive. I have been crying and am so worried. especially with all my underlying health issues and have so many questions that I asked the health nurses...
1) I was told that the vaccine was only effective 14 days after the vaccine..... does this mean it did nothing for me as it is in my system.... and if it is working.... is it still building protection to so that my symptoms are milder? I am on day 5 of symptoms.... I am wondering if I have surpassed the worse of it being day 5 or can it get worse. Usually with anything the first few days are the worse... so I am hoping now the oncoming days will start to be calmer and better.(Vaccine was given to me on March 21st .. symptoms came on April 1st and diagnosed positive on April 5th. My cough has subsided alot, but that could be because of the antibiotics, I do however have shortness of breath today, but I am thinking that could be anxiety due to the news that I received positive at 4:00 am. Apparently they told me that my quarantine time from day 1 of symptoms would be a 20 day period due to being immuno compromised (CLL) I'm a mess and I am sorry for all the rambling on.
Please help any knowledge is greatly appreciated. Thank you again Ken! Kindest Regards.
How are things! I have some updates and am hoping once again with your expertise you could guide me or give me any insight. You have been such a god send to me and I am so grateful for that.... Here is the latest... sorry to bombard you....
I had my first vaccine (Moderna) on March 21st. I was diligent in every possible way... I continued to wear my mask and even doubled it at times, and always sanitized. On April 1st at 10:00 pm, I developed a cough and headache, but never had a fever or loss of taste or smell. I had the doctor prescribe zithromax an antibiotic for bronchitis and started taking it immediately as I thought I had bronchitis. I went for a covid test on April 3rd and found out today that I am positive. I have been crying and am so worried. especially with all my underlying health issues and have so many questions that I asked the health nurses...
1) I was told that the vaccine was only effective 14 days after the vaccine..... does this mean it did nothing for me as it is in my system.... and if it is working.... is it still building protection to so that my symptoms are milder? I am on day 5 of symptoms.... I am wondering if I have surpassed the worse of it being day 5 or can it get worse. Usually with anything the first few days are the worse... so I am hoping now the oncoming days will start to be calmer and better.(Vaccine was given to me on March 21st .. symptoms came on April 1st and diagnosed positive on April 5th. My cough has subsided alot, but that could be because of the antibiotics, I do however have shortness of breath today, but I am thinking that could be anxiety due to the news that I received positive at 4:00 am. Apparently they told me that my quarantine time from day 1 of symptoms would be a 20 day period due to being immuno compromised (CLL) I'm a mess and I am sorry for all the rambling on.
Please help any knowledge is greatly appreciated. Thank you again Ken! Kindest Regards.
Have an Answer?
You are reading content posted in the Leukemia and Lymphoma Community
An interview with the co-discoverer of one of the biggest breakthroughs in cancer research
From causes to treatment options, get answers to your questions about CML, a type of blood cancer
New drug options on the horizon may make CML, a type of blood cancer, one of the few success stories in cancer treatment
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
