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?
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'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.
"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.
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."
"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.
"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".
"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.
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 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.
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.
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.
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.
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.
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.
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?
..and don't think that you are being a bother :)
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.
"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, 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 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.
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.
"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.
Tina, I would look at the upcoming CT as a way of hearing that "hooray, everything looks good!"
"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 :)
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.
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.
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!