New: Possible Lymphoma: 2nd biopsy: swollen supraclavicular nodes
My name is Grace; I live in East Central Iowa. I'm a young 50 year old. I've not been diagnosed with Lymphoma, but my ENT is suspicious of Lymphoma as he wants to do a second biopsy (on January 2, 2013).
My first biopsy, was of a cervical node because the ENT said it was easier to access and if my swollen supraclavicular nodes were malignant, then odds are my swollen cervical node were too.
The 1st biopsy (just after Thanksgiving) came back benign. This second biopsy, because they are continuing to grow with new ones now palpable as he explained it, at my last exam from my previous exam, will be a supraclavicular node.
Everything I've read since then has said "supraclavicular nodes are the most likely to be malignant...Overall, the prevalence of malignancy in this presentation is unknown, but rates of 54 to 85 percent have been seen in biopsy series reports."
I guess I'm coming to CancerForums for a couple reasons; shared experiences at the top of that list. I guess to start, my most basic question is, and perhaps someone with experience can shed some light for me that I've not be able to figure out from all the reading I've done, what are the odds of the supraclavicular node coming back malignant AFTER a close by cervical node was benign? I can't figure out a better way to word the question right now. I'm not sure I'm looking for "odds and statistics". I guess I'm just trying to understand why the ENT is wanting a second biopsy when he seemed so sure whatever answer he got from the first one would have been the right one?
I'm being silly I'm sure, and with a little more patience, it will be over with and answers will be had. Just this time of year, it would have been nice to not have the second biopsy looming. I thought I was done with it and could move on. Now, there is doubt.
Thanks for listening and forgive me if I should have posted elsewhere.
Hi Grace and welcome to the place that no one wants to be but many come to value. I took the liberty of moving your post over here to the lymphoma forum as this is where you will find the most knowledgable group of folks who are most likely to be of help to you.
what are the odds of the supraclavicular node coming back malignant AFTER a close by cervical node was benign?
This is a tough question to answer as every case is different and you will find people here who went through multiple biopsies before being diagnosed. I have had two myself, the first in the inguinal line was definitive and the second in my neck was negative. It sounds like the ENT is doing a good job for you as he is pursuing this because you are presenting symptoms to him that continue to cause him to be suspicious for lymphoma. Since the only way to be sure of anything with this disease is to have an excisional biopsy done and he is doing that I would fel good about the aution he is demonstrating. I could be wrong but I don't think proximity of one node to another has much of anything to do with things. Please do, of course, kep in mind that no one here is a doctor.
I wish you well and hope that you get another negative report so you can move on to other things. If that is not the case, we will be here to support, advise or listen as you need going forward in time.
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
Welcome! In my case, both an excisional biopsy of a cervical node and bone marrow biopsy did not lead either the first pathology lab or the general oncologist to see cancer. The lab saw only "abnormal cells." Doctor wanted to wait. I did not. Went to Fred Hutchinson where more advanced testing was performed on the biopsy samples. I was diagnosed with what at first appeared to be AngioImmunoblastic T-Cell Lymphoma, but two factors were absent, so I was thrown into the Peripheral T-Cell Lymphoma - Not Otherwise Specified basket. The problem is that T-Cell Lymphomas often have abnormal but non-malignant cells mixed in with the population. That is apparently what the first lab and doctor saw. By the time that all of this had been completed, I had "innumerable" nodes involved and bone marrow involvement.
Why were you at an ENT in the first place? Do you have any of the "B" symptoms? Epstein-Barr infection? Active mononucleosis? All of these might make it more likely that a malignancy is present, but even all of those combined are not a guarantee.
Thank you both. I'm reassured that more than one biopsy prior to diagnosis is completely normal.
po18guy, I was sent to the ENT by my family doctor who had noticed several swollen lymph nodes, and a visual lump on my left clavicle at a check-up. I was not sick, had no fever, but was anemic (not unusual for me as I've dealt with ulcers) so he assumed they were back, prescribed my usual medicine and said to follow-up with him in a couple months. That was August. In November, at my follow-up appointment, with the lymph nodes still swollen and growing, he sent me for a CT scan that he consulted with the ENT who recommended that I be referred to him. So I saw the ENT and shortly after Thanksgiving, he did the first biopsy.
I knew nothing about asking for a copy of the pathology report or even what questions to ask. I was told it was benign and I went along my merry way after the check-up of the incision, till 2 weeks later the ENT doctor himself called and said he'd like to look me over again and was considering another biopsy. I went in for another exam and he looked in my ears, my nose, my throat and then was able to palpitated a previously un-palpable node in the left clavicle area that had swollen to the point that you could see a lump pushing up in the fleshy are between the clavicle and shoulder.
Interesting how before all this, I barely knew what lymphoma was and now I am learning to understand a very small portion of what you all are saying when you say AngioImmunoblastic T-Cell, Peripheral T-Cell - Not Otherwise Specified or that you can have someplace else look over a pathology report or do additional testing on the sample taken.
"B" symptoms? I had to research that question as the doctor has not mentioned such a reference. Extreme fatigue is really my only symptom and what drove me to schedule a check-up because I attributed it to anemia, only as of the November appointment, my anemia was mild (up to a 10, which is good for me, I'm normally a single digit with daily iron supplements). A 15# weight loss since the August check-up and believe me, I was, like most women, thrilled cause I didn't even try! Now I understand that can be one of those "B" symptoms. No drenching night sweats, but I have had them this summer and fall, but they disappeared once it turned cold (I keep the house in the low 60's at night), and I attributed these as "hot flashes", perfectly normal for my age. No infections found, no fever.
Well, anyway, thank you. Best course is to enjoy the holidays, and the second biopsy will be here and then can go from there. I wonder if I could bother you for some advice? What are questions I should be asking, either before this second biopsy or after we hear about the pathology report?
I know so little and clearly have taken a passive role with doctors all my life, I don't even know what to ask. I don't know, what I don't know. I don't want to be overwhelmed with all the information that is on the net, cause there is so much out there and I don't know how accurate it is or what would apply.
I would be grateful if you would tell me, based upon what you know now that you didn't know when you were first going through the beginning what you wished someone told you to think and ask about.
Thank you again, so very much. I appreciate the time you've taken to share your experience with me.
The bottom line is not to think cancer until and unless there is definite reason to do so. At age 50, with fatigue, I wonder what your thyroid levels are at? Has doctor suggested an endocrinologist of immunologist? Among the many possibilities, I would think that thyroid level and auto-imune problems could enter in. As to blood work, it is often normal, even with blood cancers such as lymphoma. Elevated LDH levels in the blood might be an indicator of lymphoma, since they are associated with rapid cell turnover, but they also might not be. All of this is confusing and frustrating until and unless a definite cause is found. Maybe ask for a referral to other specialists, as there is not too much you can ask without a diagnosis. Keep a record of any changes or additional symptoms, as that will help doctor. Now, a second biopsy in an easy to access area might very well be a good thing, as it should rule a malignancy either in or out. But, if no malignancy is found, you are back to square one with two more scars than before.