Hi. I went to my dermatologist to remove what I thought was a small 1/4 cyst on my scalp. The biopsy came back that it is low grade B cell lymphoma. I don't think I have any other symptoms but I am terrified and can't get an appointment with the hematologist for 2 weeks. Every thing I read gets me even more scared. (The doctor's nurse said that if it was a crisis, doctor would have seen me earlier but I am still a wreck.) Any experience with something like this? Any thoughts on where I can learn more? I don't even know what to look up. Scared.
Isue-
Welcome to Supportgroups.com. Sorry to read about this dx (diagnosis) of yours, and I imagine your head is spinning right now. There are a couple contradictory things in your post that I think can be cleared up. The first is that "low grade" is an old way of saying "indolent" which is the current way of saying "very slow growing". So the nurse calling it a crisis is a bit odd. Sure, if it's cancerous, well that's a crisis simply because it's cancer, but low-grade is nothing that's going to do much of anything in the next two weeks. That's for sure.
Another thing-- there are roughly 40-50 subtypes of non-hodgkin's lymphoma, all of them individual diseases. However they do split into ones that affect the B-cells within the lymphatic system and ones that affect the T-cells.
While it's impossible to say from here, you sound like you might have primary cutaneous b-cell lymphoma (PCBCL). All this means is that it starts (primary) in the skin (cutaneous) and affects the b-cells. Cutaneous lymphomas much more often affect the T-cells. But if you have cutaneous b-cell lymphoma, no big thing. In fact, prognosis is almost always better in B-cell than T-cell.
Anyway, you can look up PCBCL. You can also look up CTCL. Either way, I would start with the Cutaneous Lymphoma Foundation. And I wouldn't read ANYWHERE ELSE. You'll only freak yourself out.
Ross
Thank you so much for the response. It was very helpful. Maybe I waasn’t clear - I complained that I couldn’t get an appointment for 2 weeks and nurse said that it wasn’t a crisis. If it was, doctor would make time to see me earlier. I will look at the site you suggested as every other place I’ve been looking is just making me more anxious than I already am. Thanks again.
welcome
i have just read up on this due to another post on a simular condition for a laymans view of it all
they have all the information at your fingertips
its no good us saying that u should stop worrying cos i no u still will but ross is right if it was serious u would have seen the doc by now
keep posting and chatting
loving vibes and positive thoughts
Thank you so much. I went to the sites you suggested and it was so helpful - much more so than the dermatologist, the hematologist that won't see me for 2 weeks or his nurse who could tell me nothing (I guess understandably). I just looked at the biopsy report again and I think you are right. It says "Low grade B cell lymphoma, follicular center cell derived (not sure what that part means)." It also says "histological examination reveals a skin biopsy demonstrating a dense, nodular dermal lymphocytic infiltrate composed of predominantly small to medium sized cells. Epidermal involvement is not apparent." Can you help me interpret that? I am by nature a very anxious person so you can imagine the distress. If you feel comfortable helping me figure out what that means, I would be so appreciative. So would my husband and children. Thanks.
Isue-
OK, "Low grade B cell lymphoma, follicular center cell derived" is the specific diagnosis, the NHL subtype. It's phrased a bit awkwardly though, and you would probably find more online if you searched it as "primary cutaneous follicle center cell lymphoma" or PCFCCL, which is the way the disease was classified in 1997.
According to the sources I'm using (which I'll cite at the end), the World Health Organization classifies PCFCCL not as a skin lymphoma- even though it's presenting on the skin-- but more like a very common and slow-growing B-cell lymphoma known as Follicular Lymphoma (FL). Many people on this site have FL.
The wording, i.e. "histological examination reveals a skin biopsy demonstrating a dense, nodular dermal lymphocytic infiltrate composed of predominantly small to medium sized cells. Epidermal involvement is not apparent." I know this sounds like another language but it's not saying all that much either, at least all that much that's relevant to you right now, mostly it's just describing what your biopsy looks like through the microscope.
That said, this is a tricky diagnosis to make, and it can't accurately be made simply by looking through the microscope, which it seems is all that's been done so far (that's the "histological examination"). An accurate diagnosis of any lymphoma should involve sophisticated lab techniques like immunophenotyping, and I suspect that your hematologist will see to it that the biopsy gets this kind of attention from a qualified blood pathologist.
But enough of that. You say you're not having any symptoms. Well following an accurate DX, you should be staged. That's an involved process that features things like an exam of your lymph nodes, spleen etc, probably some scans (CT, PET) as well. One key will be whether you've had so-called B symptoms ---- night sweats, weight loss, fevers.
If you don't have those symptoms, and it's determined- as it sounds- like this lymphoma has not spread anywhere, then you're probably going to be just fine. You might require a little bit of radiation, maybe some corticosteroids, systemic antibiotics, or maybe a drug called Rituxan.
It's also possible you'll undergo no therapy at all, just have it checked every six months or so.
In short, the prognosis for people with PCFCCL is extremely good. This is not an aggressive, killer cancer. Many of those therapeutic options mentioned above are aimed at curing you, and the cure rate reaches 98-100%.
My primary source is:
Demierre et al. "Primary cutaneous B-cell lymphomas: a practical approach". Hematol Oncol Clin North Am. 2003 Dec;17(6):1333-50. PMID: 14710888
I was diagnosed with Follicular Non-Hodgkins follicular B Cell 3/25/2010. NONE of the three dr.s involved in the detection and biospy were acting as if their "Hair was on fire". (Internist, radiologist, surgeon), all very reassuring that it was slow=growing, very treatable, etc...and if I had to have cancer, this was the one I should get!I also was totally without symptoms. Of course, I was, like you, terrified...but you gotta go through the steps...oncologist/hemotologist - 2nd opinion for biopsy from another radiologist.or whoever reads those things/ PET Scan/Ct scan, Bone Marrow Biopsy (No where near as bad as I expected as long as they give you plenty of Lidocaine before)...then gather up slides and all test results and get thee to a LYmphoma SPECIALIST for a second opinion. I went to SloaKettering Cancer Center in NYC but there are good ones all over the place....and get your diagnosis reaffirmed...there are so many kinds of this Non-Hodgkins lymphomas...and remember, our oncologists are mostly GENERALISTS...they treat ALL kinds of cancers, they can't be experts in them all...so it is important to go for second opinion and have that sent back to your local oncologist....That being said...this takes time. I started my FIRST treatment (Rituxan) just TODAY...almost 3 months since first diagnosis...because mine is also INDOLENT - slow growing...so no big rush...unlike my brother, diagnosed with Small Cell Lung Cancer...from Diagnosis to first chemo treatment - less than a week...(2 1.2 yrs ago, he is doing well, though given only 3-6 months)
Hey, this is gonna bring us to a new "normal" but I have found these message boards to be very helpful. Also the Leukemia and Lymphoma Society has a great website, with a toll-free number....they have nurse-practitioners there to answer the phone and any and all questions...all free and they will send you tons of lit to help you.
PLEASE let us know what is happening as it goes...We like to keep up with our new friends!
Fondly, Gail
FNHL Stage 4 Grade 2
Bone Marrow 3%
Diagnosed 3/25/2010
Rituxan 4-8 Treatments, begun 6/23/2010
GailMarie:
I enthusiastically applaud this post of yours, for at least two reasons: the first is for your stressing the need for a second opinion on pathology results. I have repeatedly tried to drive home this point, in various posts as well as in both a support tip here and a blog entry over at lymphomainfo.net.
The other reason is an aspect of all your posts--- I love the sign-off that outlines your dx. I've seen this elsewhere but rarely here, and I think it's something we ought to encourage.
keep it up, you're voice is valuable here.
Ross
Thank you. Ross, I feel this is high praise coming from you, as you are clearly the guru of this board! I am very new at this, but have read alot of info on the internet re: this whole mess…Also, participation on this and other boards has been such a GREAT resource for me, and I feel we have to “pay it forward”. Whenever I read something I think I can weigh in on and help in some way. I will try to do so. Thanks again for your encouragement. Gail
PS…I think it is important to know who is talking about what…since there are so many different NHL’s, I have to assume they all act differently and are treated differently, though I am clueless what each kind is and what the differences are. Right now I have just concentrated on reading about my own type, and reading posts that are related to that, but also if I can lend some emotional or procedural support, regardless of diagnosis, I will do that…
Thank you all so, so much. Ross, your information is so clear and calming....really, really appreciated.
Gailmarie, it is good to hear from someone with what sounds like a similar diagnosis. Is yours cutaneous? How did you discover the disease?I live in NYC so could also go to Sloan Kettering for a second opinion. Was your experience there good? When is the right time to go for the second opinion? After all the tests are done? So, so many questions.
The first of what I hope will be many miracles happened - the doctor's (hematologist recommended by dermatologist) office called> There was a cancellation this afternoong so I am going to see him today! Hopefully I will know a little bit more then.
Will be back later with more news and questions. Thank you all so much.
Isue-
Your appointment popped up so quickly I feel we missed a chance to maybe try and arm you with the right questions to ask, among other things, but that's not a problem. I do hope it's going well and that the doc is explaining things to you as clearly as possible.
Ross
Hi Isue...Mine was found during a routine physical, a lump under armpit I didn't even know was there (I'm kinda lumpy under there, anyway!)..Big surprise as I have regular checkups, mammos and ultrasounds.
RE: Sloan-Kettering: If you are going for a consult, they want all your tests, including slides, etc. first, before they even schedule you...but if you are going to go there for treatment, I guess you can have the tests there. The Dr. to see for Follicular Lymphoma is Dr. Carol Portlock. Go to Sloan's website, get direct phone number to her office. Her assistant, Ernestine, will tell you everything you need to send. They want to see the actual SLIDES of biopsies, not just the reports.
I'm glad you got in to hemotologist right away...get the show on the road! BTW...I had my first treatment yesterday, Rituxan...PIECE OF CAKE!! Took forever, 9 hrs., as they go slow first time to prevent side effects...next week just 3 1/2 hrs they figure...No problems, just a little tired today...We can do this, kiddo...just make lists, get a little spiral notebook for notes, phone numbers, a folder for stuff you download off internet...and keep on keeping on!!! Love, Gail
P.S...If you live in NYC anyway, why NOT be treated at Sloan, if it is convenient for you? It is THE BEST...but a big pain for me to get to, parking, traffic, etc...just kills day for me...besides, I am going to oncologist/hemotologist who is also treating my brother, who has lung cancer, and she treatmed my mom, who had breast cancer...so I am comfortable with her group, and she is in touch with Dr. Portlock frquently over the years. But if I were in Manhattan, I;d go to
Sloan for treatment, they are cutting edge...But call Portlock's office and get info. , she will tell you exactly what to do. NONE of us knew what we were doing when we started this journey...just follow the breadcrumbs through the forest that all you messageboard friends are leaving for you!!!
Thank you all so much for your responses and support. Already, you have helped me.
So, I went to the doctor yesterday (at New York Presbyterian Hospital/Cornell) and really liked him. He was patient, thorough and seemed very experienced and knowledgable (though not as knowledgable as Ross.)
So far, it seems as if it might be an isolated lesion. He did a physical exam - no lymph node swellings, took a lot of blood - first CBC test came back with no problems and we are scheduling a scan for next week.
He was obviously cautious in his prognosis but seemed to feel that the issue was limited and manageable. He did say that it was likely he would recommend either radiation or rituxan but also possible that he would recommend no action at all.
I was all so surreal that I didn't ask a lot of questions about rituxan or radiation. Why one vs. the other? How long a time period is involved in the treatments? What does radiation involve? Will I lose my hair or is it very targetted (the lesions was a 1/2 " thing on my crown. I know - shallow - but of concern.)
You are so right about bringing an notebook as I can't remember anything. Still in shock but somewhat relieved and preparing for a long road.
Isue-
OK, this sounds good. I have only a moment right now but
A) don’t apologize for worrying about losing your hair. it’s not shallow.
B) There are lots of factors that would go into determining what the best therapy would be; they include your age, your general health, and the precise diagnosis, among other factors.
C) Next time you have an appointment, either bring someone who can advocate for you (someone who remembers to ask the questions you have, and who will remember the answers), or bring some kind of voice recorder. Recently I was my wife’s advocate for a health issue and I used the voice memo recorder on my Ipod, and it made a big difference to be able to go back and listen to the appointment, what the doc said, etc.
More later,
Ross
its good that the news is positive for u
so congrtulations and no its not shallow to worry about your hair
note book is a good idea
keep posting and chattin
loving vibes and positive thoughts
Cornell/Weill also has excellent rep. The name I have heard associated with them is Dr. John Leonard.
Once the get the PET/CT Scan results, they will have a better idea as to what they are deling with. If the only find it in that one spot on your scalp, they will probably radiate it. If they see other interior lymph node involvement, they will do Rituxan...it is not really chemo...it is called "Immunotheraphy"...I tolerated my first treatment well. I am just taking one day at a time, right now I feel fine...so I am going to go with that! Please keep use informed as things go alone! Love, Gail
Thank you so much for your responses and information. It is really hard to navigate all this. I have been trying to read about radiation but can't seem to find information on how targetted/localized it is in terms of side effects. If the lesion turns out to be about 1/4 inch diameter, as it showed itself, do they radiate the whole head? Does all the hair fall out or just the radiated area? I am trying to stay positive, hold on to the optimistic view of my situation and take one day at a time.
I haven't told my kids about this yet (18,21 year old boys) because I thought I should wait until I have more info. One is studying to take the law school entrance exams and I don't want to derail him. Any thoughts on this?
Isue-
I have a hard time imagining anything other then directed radiotherapy at the lesion, and not head and neck irradiation-- unless they had good reason to believe the cancer wasn’t isolated to the lesion. Radiologists can hit very, very small targets. Something like orthovoltage radiation would deliver a high amount of radiation to a small spot on the skin, and the benefit is that it doesn’t much penetrate beyond the skin. If targeted as such, your side effects would be pretty minimal because I think that as the radiation field grows, so grows the capacity for worse and systemic side effects. But if it’s a small area like this lesion, maybe you’ll be slightly tired, depending on how much you receive and how often, but you shouldn’t expect to lose your hair, anywhere perhaps except where the lesion is. The primary reaction from radiation on the skin is a common skin reaction known as erythema. Your doc should tell you how to treat it if it occurs.
Ross
speaking as a mother of eight i find the direct and casual approach works best, i normally drop it into the conversation and qualify it with its good news we caught it early, i will keep u informed as we go along if u would like, feel free to ask me anything and if i dont no the answer we can look together if u like.
i find this approach with good links to the net if they want to read for themselves is a good way to do it. try to keep it short and sweet so they no its no big thing at the moment, and my lot range from thirty to twenty!!!
i find the younger ones are ok with most problems but my eldest wants to know all the ins and outs, sometimes things that are not even relevant so patience is the key to the day
wishing u all the best
positive vibes and loving thoughts