Hello,
I am just curious. When I was first diagnosed the Hematologist ordered a surgeon to cut out Nodes from my Neck to have them biopsied.
The surgeon pushed for a node removal instead of a needle biopsy.
I did not know at the time but it seems like over kill and they were just trying to bill more.
They took 6 nodes out below my neck. Is that an issues for me at all going forward? Or do I have plenty of nodes?
thanks,
Hoffy
They removed 39 nodes in my pelvic region and it hasn't causes drainage issues...
You likely have 500-600 nodes... a few mising won't matter...
en.m.wikipedia.org/wiki/Lis...
~chris
Personally, I refused a biopsy suggested by my oncologists prior to treatment. Among the plethora of swollen nodes in my neck, the largest -- the one they wanted to biopsy - was tucked between the carotid and jugular. As a speech/language pathologist who has studied neuroanatomy, there was no way I was going to allow a knife in that tight area -- or anywhere else in my neck -- with nerves that control our whole body. When I told them that, in my neuroanatomy class, at the age of 20, I verbalized to my classmates that I would NEVER have surgery in my neck, they understood my resolve. Flow cytometry confirmed the diagnosis, and a FISH test proved sufficient to determine the best course of action for the moment.
I would suggest you ask them what they think they can learn from a biopsy that they can't learn from blood and other noninvasive tests? The only way does not have to be to cut into our bodies. Risk vs Reward, always.
"If I am not for myself, who will be for me? And if I am not for others, what am I? And if not now, when?" -- Hillel
Did they know you had CLL at the time ? Or you wee being diagnosed?
I still trusted all Doctors at that time. I see now that there are sadly huge conflict of interest in doctors and some want to do things for monetary gain many times more than the well-being of the patient.
I believe some medical organizations are more profit based and others are more science-based. Scripps clinic in San Diego is very profit based. Sad.
Be well,
Hoffy.
Too late to ask! I was put under general anesthesia in nov. 2013 the ENT doc sliced the left side of my neck. A fine cut size of a hairline then melting sutures. I don’t know what went on during the procedure but was very painful and that side of neck is still sensitive. ...
Hoffy, I can't answer your question beyond what has been said (you have tons of nodes) but am interested in this answer. I know they have to check SLL different than CLL which, although I understand, they are the same disease, just present different....it still leaves me unsettled....
Scott
At the time, it was clear from labs and a neck full of nodes that something leukemia/lymphoma was going on, but they didn't have a differential diagnosis. My hematologist sent me to the hospital's best ENT oncologist for an x-ray and possible biopsy. The x-ray showed so many swollen nodes in my neck that they butted up against one another, with no spaces, like a bowl full of milk bubbles after blowing through a straw. This explained my difficulty sustaining breath for singing, and why I could no longer pop 5 pills at once.
Bear in mind that this was 7 years ago, a less sophisticated and knowledgeable time for CLL, even at a well known cancer teaching hospital. FISH testing wasn't yet commonly used, and its ramifications for helping to determine the most efficacious treatment weren't yet known. In early clinical trials, Idelalisib was in the nascent stage of showing success as the first non-chemo targeted oral medication. In some ways, it was an Age of Renaissance following the dark ages for CLL.
In addition, most doctors tend to think in terms of what they have been taught way back in medical school. I'm not convinced that my biopsy was recommended to make more money for the hospital. I think that when you ask an ENT surgeon what needs to be done, their first thought is "scalpel."
As a teenager in the 1950s, I worked for my ENT Uncle after school. Times were different, and I was allowed to do all sorts of things that would never be allowed today. I gave shots, swabbed during minor office procedures, and handed him requested instruments. So I felt qualified to tell the ENT at the hospital that I had great confidence in him, and that I was sure he was competent and skilled with a scalpel. Then I mentioned my history, and why I was more afraid of having surgery in my neck than of not knowing the specific diagnosis for my disease. To his credit, he accepted and respected my decision, and did not take it personally.
When I suggested to my hematologist that there must be some other way to determine the diagnosis, I could see the light bulb turn on. He picked up the phone to call down to the lab, and said I would be returning to give more blood for a flow cytometry test.
Now that we have more definitive labs for diagnosis and treatment plans, it would be nice if cutting into someone, with all the potential risks involved, would be reserved only for those situations when there is no other way to proceed. Sometimes, we have to enlighten our doctors and just say no.
Hoffy, I realize that I didn't comment on potential difference between excising an entire node or tumor and doing a needle biopsy. During my 30s, when I was experiencing a number of breast lumps, I opted for surgery to remove the entire tumor each time. A needle biopsy provides a reading only for the tissue in the small area of the core sample. My concern is that some cells a millimeter away from the core may be malignant, even if the core cells are not.
This is possibly different for lymph nodes, where all the cells may be similar, but I am not sure. It would be a good question to ask.
Morning Hoffy,
Last time they thought I might have Richters they started by doing a needle biopsy, but sadly they said it was inconclusive. So then a node removal under general anaesthetic. I was lucky with a very good surgeon who took 3 small ones from the base of my neck, that left only a tiny scar.
In answer to starsafta. I also had a breast cone biopsy several years ago. They took one large sample from where my lump ( benign ) was. Neck was different and 2 samples were taken from three different nodes, but still inconclusive.
Regards
Colette
Hi Hoffy,
if your CLL/SLL was presenting with a relatively normal blood picture and lymphadenopathy the a LN is best practice.
A needle biopsy just sucks a few cells out and provides more limited information than the biopsy of a whole node. The nodal architecture, the pattern of the cells in the node is vital, together with antibody tests on the tissue, to be sure what type of lymphoma the Dr is dealing with. Treatment is very different for each type of lymphoma and your Dr did the right thing.
Do you think they could’ve at least tried in the blood and a needle biopsy to start?
Unfortunately it was the surgeon who convinced me or basically told me that we should do a full lymph node biopsy instead of a needle biopsy the hematologist stayed out of it. I didn’t really know much at that time. I did not have resources like this figured out at that time.
Hoffy that was my thought, but then I am glad in the that I went through it all, and so important to get the correct treatment
Regards
Colette
My husband was SLL presentation with normal ALC at diagnosis and they first dId a needle biopsy which was inconclusive, he then had a node removed from his neck to get his diagnosis. That node was then well traveled for the rest of the diagnostic testing so it was worth the procedure for us to have a definitive answer.
I was told by an expert in the field that a node biopsy gives no more information than a blood test. However, my sons doctor wanted to do a bx because of the rapid increase in size and concern that there might be a RT. The first expert was right and the bx showed nothing more than CLL. He started FCR and so far doing well. No palpable nodes and WBC around 5(down from 42). 2 more rounds to go.
Had two separate needle biopsies. One of armpit node when diagnosed in 2013. Second when progressed in 2016 of node that lit up a lot in PET scan, after plastic surgeon removed extra modular tumor on forehead which showed a small population of large B cells. Doctor was checking for richter with node biopsy at right occipital. Had bone marrow aspiration same day. Did not have Richters. Have follicular. First treated with Rituxan. On Gazyva after relapse. Now on maintenance with Gazyva. Just went from every two months to every three. No sign of disease in peripheral blood. Feels like I am on vacation, like I am back on watch and wait and am enjoying feeling well.
My SLL was diagnosed from a BMB. Local oncologist said they could diagnose from lymph node or BMB but would need the BMB later. I said, "Go ahead with BMB."
When I had blood drawn the initial diagnosis was myeloproliferative disease, and I had lymph nodes removed from my axillary (armpit) and along my collarbone. The latter was one that was swollen for 2-3 years prior to my diagnosis, but 4 oncologists, 1 primary and 1 ENT doctor told me it was "nothing to worry about." The biopsies were the definitive diagnosis for me.
Hi Hoffy. I declined full and irreversible removal my any lymph nodes for biopsy purposes and instead lobbied for and got core needle biopsis - 5 taken from left inguinal (groin) nodes. That was more than enough to confirm the CLL diagnosis. And it left those nodes intact in my body where they can still continue to partially function.
kim
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