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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.
32 Responses
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1081992 tn?1389903637
COMMUNITY LEADER
Anytime, Tina. I am sincerely glad to be able to help you.

Thank you for writing what you wrote. You just made my day. When I think of quitting doing this, I'll remember what you said. Then I won't quit :)

Yes, make sure to let me know how the CT report goes. I'm sure it will be fine. Take care.
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1081992 tn?1389903637
COMMUNITY LEADER
Oh boy, the website system altered part of my answer. So let me try again:
The "<" means "less than".
If it points in the other direction, then it means "greater than".

Overall, yours is only slightly higher, so there is only slight reason to worry about it. Similarly, e.g., if you said you had a temperature of 98.7 or 98.8.

Since yours is only slightly high, most of those causes in the list I posted above wouldn't apply. I'm just pointing out that there are many things that can make LDH go high.

My guess is that your next LDH test will be normal. But if it's still high, that still doesn't mean it's cancer. Also, cancer is not the most likely among all the possibilities.
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1081992 tn?1389903637
COMMUNITY LEADER
Tina, that is still just a little high. The "".

In advanced lymphoma, LDH can go into the thousands.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820421/
"Serum LDH level was highly elevated (3441 U/l)."

Tell you what, though... if you have another LDH test in a month or two, and it is still a little bit high, then get back to me, okay? We can figure out what condition might be causing that. It might even be a medication.

---------------------

There are many lists of causes. and they are not the same on every site. Here's one such list:

What Abnormal Results Mean

A higher-than-normal level may indicate:

    Blood flow deficiency (ischemia)
    Heart attack
    Hemolytic anemia
    Infectious mononucleosis
    Leukemia or lymphoma
    Liver disease (for example, hepatitis)
    Low blood pressure
    Muscle injury
    Muscle weakness and loss of muscle tissue (muscular dystrophy)
    New abnormal tissue formation (usually cancer)
    Pancreatitis
    Stroke
    Tissue death
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1 Comments
Thank you Ken! You are my godsend. You are the only one that is giving me information and for that I am so grateful. I did not hear from either the family gp or the oncologist and this blood test was done in May. I know they get busy over time... so I still worry and wonder. I am resting today as I have a headache. I have my body CT scan coming up at end of July and I always get really nervous when I have to get them.  At first the Onco was doing them every six months ... but now it is once a year.. so I am hoping this one will come back ok.. I still worry about the liver issue also with the large cyst.  The onco said not to do the ultrasound back when this came up so I left it. But it always niggles in the back of my mind.  
I will ask if they will repeat the blood work and keep you posted. THANK YOU so very much. You are one amazing person. You will definitely be rewarded during your lifetime for being so kind and helpful to people.
:)  Kindest regards Tina
1081992 tn?1389903637
COMMUNITY LEADER
Hi, Tina. There's nothing for you to worry about. Other things besides cancer can make LDH go high. For example a minor infection. Even working out too hard or taking too much vitamin C. It's also true that it's only a little bit high. No doctor would be concerned about cancer here.

How high is high? Let's imagine that normal was 220 to 229. Then 239 would be pretty high. But if normal is really around 129 to 229, then 239 is only a little bit high. See the difference?

Btw, I've been sometimes seeing in the news that some famous women have had their implants removed and then they felt much better. Danica Patrick is one, from a few months ago. So you were ahead of your time. Back when this started 3 years ago, it wasn't known so well. But now, most docs should be aware.

I hope your family problems get straightened out soon. You need stress-free relaxation from time to time to be healthy :)   If the stressful situations won't end, then at least try to figure out some ways to escape the feelings of tension, at least for a little while. Be good to yourself, Tina.
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Hello again Ken and Thank you for getting back to me! Your answer is very helpful and  again I am so grateful that I have someone that will listen and provide valuable insight. I am confused though... because my reading was A239 and normal is  <225. I made a mistake and typed 229 instead of 225. I dont understand how it is only a bit high as  I do not know what the "<"  indicates. Would this still be a little high or pretty high?  I am sorry and thank you so much for your help.
Kindest
1081992 tn?1389903637
COMMUNITY LEADER
"all cysts grow over time"
should say: all LIVER cysts grow over time

I wouldn't worry at this point, Tina.
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1081992 tn?1389903637
COMMUNITY LEADER
Hi, Tina. This is really not my field, but I'll try.

First off, it's known that all cysts grow over time, so growing does not mean it's a cancer.

A cyst means it's a fluid filled sac. An ultrasound gives more info about what it is like inside in detail, more so than does a CT.

"did the doctor and oncologist both miss the liver cysts in the last two CT scans?"
Probably not.

"or did they not think it was a concern?"
Probably true. The vast majority of liver cysts are benign. Some people are even born with them. Also, you do not have any symptoms such as pain in that area. So if it is benign, they still wouldn't treat it (with surgery) no matter how big.

Can you post the exact language in the ultrasound report? Because of your long history of unusual inflammatory effects, I would guess that this is just another one of those - and it's not cancer.

If the ultrasound report says that it is just a plain, simple cyst then that's what you want to hear.

The ultrasound of the heart only happened to see the very top of the liver. Maybe they merely want to see if there are other cysts in the other parts of the liver. I don't think anyone suspects cancer, they probably just want to rule it out for sure.

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Hello again Ken,

I am so sorry I did not respond to you sooner.  I have been caught up with lots of family issues and truth be told.. I have been a little down.  Thank you for your reassurance with respect to the liver cyst.  I did speak to the oncologist at one point and he said the cyst was always there .. he did not seem to be concerned so much... but I do have  my regular 6 month CT scan coming up next month in July.  I am hoping it comes back ok.

I had some blood work done in May to prepare for the CT scan.  It was for the CA125 and CA15 to measure tumor markers and they were fine.... but there is one that came back not good it was the Lactate Dehydrogenase - the reading was A239 when normal range is <225 U/L  

This blood test was done in May and the flag for the Lactate Dehydrogenase was on my mind... because everything I read on it indicates that it is cancer related.  Whats strange though.. is neither my family GP or the Oncologist called me to discuss this reading and it was done in May.

Do you know anything off hand about this Lactate Dehydrogenase and also... is my reading A239 considered to be really high when a normal reading is <229.?

As always thank you for your wisdom and knowledge. I really appreciate it.

I look forward to hearing back from you at your conveniience.

Thank you so much. God Bless

Tina

1081992 tn?1389903637
COMMUNITY LEADER
Always glad to be of help, Tina. No one knows absolutely the answers to your questions, as they relate to any individual rather than group averages. But the news will everyday talk about people who say they know the answers absolutely.

There's been a lot of fear mongering, too, that caused a lot of needless anxiety in a lot of people; don't let that get to you.

I'm confident that your upcoming scan will be good, there's no reason to think otherwise. You know, you were kind of a trailblazer in the knowledge that implants can cause widespread immune reactions. That was when lots of doctors and doctors' groups said it wasn't true, but your experience proved it was true --- and you did great after the removal. Just as you'll most probably do great after this virus.
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Hi Ken,
How are you? I am once again reaching out to you. I am so sorry to bother you again... you have always been a wealth of knowledge for me and I am now grappling with something that is bothering me... I wonder if you could shed some light. As you know I have body ct scans with contrast now once a year for the CLL.  I dont know if I ever shared with you in my posts in the past.. but I have also had some heart issues and had an Atrial Flutter procedure and an SVT (Supraventricular tachycardia) these two procedures were done in May of 2019.  I still have some ongoing heart issues... so this past week I had a heart ultrasound....due to severe shortness of breath.... today I received a call from the family doctors office saying I need to have an ultrasound of my liver.. because in the heart ultrasound report they found an 8.7 cm cyst on the liver.  I am so upset... because I asked the receptionist to send me copies of the CT scan in July 2021 and the cyst showed up as 8.4 cm and also to send me the CT scan report that was done in 2020 and the cyst was 8 cm on that one.  So you see it has been growing... I don't understand two things.... one - did the doctor and oncologist both miss the liver cysts in the last two CT' scans? or did they not think it was a concern?  I am so worried. I now have to wait until monday to talk to the doctor to find out when the liver ultrasound is.  The other thing I think is weird is the fact that  a CT scan with contrast would rule out any potential malignancies? is that correct? If so.. is this something they dont think is a worry. I now have to sit and go mind crazy all weekend.  I am sorry again for bothering you.. but just wanted your true genuine thoughts and opinion.  As always... thank you. God bless you. Kindest

Tina
1081992 tn?1389903637
COMMUNITY LEADER
Hi again, Tina. Your highly reactive immune system could mean you defeated Covid more quickly and easily than the average person. Being highly reactive means you had the bad effects from the implants when the average person didn't, but it also can mean that you defeat infections better than average people.

"is it still building protection to so that my symptoms are milder?"
Yes. I'd say that the vaccine probably gave your immune system a jump start in fighting the virus.

"I am wondering if I have surpassed the worse of it being day 5..."
That could very well be true. It does seem to be true, as you say, from how the cough got better. But you have to live through it some more to know for sure, and just be aware of changes in symptoms without being too worried. You have good reason to be optimistic, Tina, just like way back when you had the upcoming CT and the results then turned out to be very good for you.

"My cough has subsided alot, but that could be because of the antibiotics..."
It's long been known that zithromax is also an anti-inflammatory. Anti-inflammatory is what you want, so your highly reactive immune system doesn't get carried away.

"I do however have shortness of breath today, but I am thinking that could be anxiety"
Probably true. If you are okay breathing when walking up steps, then you probably don't have any fluid in your lungs.

I'll also throw this in, at the risk of complicating things too much: just as you maybe didn't ever really have CLL, it might be true that your positive test for Covid was a "false positive".

I don't think you are "immuno compromised", I think the opposite: you are highly immuno reactive. You are not typical, as always, and the nurses won't understand that :)  

I'd want to be most aware of how the lungs are doing.

Write again any time, I'm always glad to be of help. And please let me know when you are feeling tip top :)
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Hello again Ken.. and THANK YOU again so much for your help and wisdom! I always feel better after I receive your notes! You are definitely a wealth of knowledge. My breathing seems to be ok... my headaches... although they have diminished every now and then I feel either slightly dizzy or off, but not like when the headaches came on on April 1st and 2nd.  The cough is so minimal now.. but still there. Lungs are ok.. every now and then I get a tiny twing feeling in the left lung or heart.. but its really really I am still in shock I got this... but happy I did have the first vaccine... even though it was only on March 21st. I guess my worry is...1) will traces of this virus stay in my body? apparently I can test positive again, even if I am negative. 2)  Once you have had this virus can we get it twice?
Im tired and nervous also because my onco skipped one body ct scan since the last one was favorable and good.. but now I have to have one in either June or July for my next 6 months follow up.  

thank you again.. kindest regards

Tina
1081992 tn?1389903637
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!
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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.
1081992 tn?1389903637
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 :)
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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!
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
1081992 tn?1389903637
COMMUNITY LEADER
Tina, I would look at the upcoming CT as a way of hearing that "hooray, everything looks good!"
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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
1081992 tn?1389903637
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.
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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
1081992 tn?1389903637
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.
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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
1081992 tn?1389903637
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.




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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.
1081992 tn?1389903637
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?
Helpful - 0
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
1081992 tn?1389903637
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.
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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
1081992 tn?1389903637
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.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
..and don't think that you are being a bother :)
Helpful - 0
1081992 tn?1389903637
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?

Helpful - 0
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
1081992 tn?1389903637
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.



Helpful - 0
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
1081992 tn?1389903637
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.



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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
1081992 tn?1389903637
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.
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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
PS ... I hope Im not keeping you up or away from your family. I am from Canada and it is 5:40 pm here.
1081992 tn?1389903637
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.
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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
1081992 tn?1389903637
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.

Helpful - 0
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.
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