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Just diagnosed - Lymphoma

zoefluf
Posts: 4
Joined: Dec 2018

I had surgery Jan 7 to remove a large mass from under my bladder that my gynocologist thought was a recurrence of my endometrial cancer from 20 years ago.  Turns out it is Grade 3, B cell Lymphoma.  So she took out the mass which was a lymph node and another lymph node that was large and the remainder of my female organs that was left from my partial hysterectomy 20 years ago.  Waiting now for appointment to see oncologist on January 24th.  Not sure what is next since I know nothing about Lymphoma.  Hoping to learn more on this website.  

po18guy
Posts: 957
Joined: Nov 2011

Well, surgery is almost never used in lymphoma - but that is if it is known to be lymphoma. It is a "liquid" cancer and so it can be found anywhere in the body with virtually the same prognosis. With the latest treatments, it often melts away quickly. Some forms are very hard to eradicate, but also pose very little immediate problem, as they are very slow growing. Those types are considered to be chronic, manageable diseases. As to the surgery, there are no "clear margins" with lymphoma, since its cells circulate in your lymphatic system Thus, expect some form of systemic treatment to mop up any cells that are still circulating.

As to prognosis, I would not place too much importance on that, actually. The concept applies to populations of patients, but you are an individual! I had a prognosis that began as poor and dropped several times to horribly horrible - beyond comprehension. Then it dropped off the charts completely. It is an individual fight and the only statistic that matters is the fight we have in us and if we survive it all. With the newest treatments and latest research it should not be a huge problem, even if it remains a problem.

IMO, a second opinion is manadatory (I would demand it) as lymphoma has 50+ different types and sub-types and they are treated very differently. Do not be affraid of asking doctor for a second opinion or a referral to a major cancer center - it can make the different between life or death. On another forum, just yesterday we lost a 26 year old man who was misdaignosed and treated for the wrong lymphoma - even a stem cell tyansplant which immediately failed! All because of incorrect pathology on his biopsy sample. Not to scare you, but the enemy must be correctly identified before he can be properly fought.

For lymphoma, you do not need an oncologist. You need a hematologist and one very experienced in the type and sub-type of lymphoma that you have. I would travel to an NCI designated comprehensive cancer center - such travel saved my life. Find the nearest center here: https://www.cancer.gov/research/nci-role/cancer-centers/find

Also, once you know the type you have, study up on it so that you may kamke informed decisions. Here is an excellent resource: https://www.lymphoma.org/

There is a wealth of knowledge and support here. You have come to a very good place.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3121
Joined: May 2012

Zoe,

I agree that you should get a second diagnostic opinion. This is not a second treatment recommendation, since you do not yet have a treatment recommendation.  But, as Po noted, if it is in fact Lymphoma, the treatment will be chemotherapy of some form, since Lymphoma is a systemic condition.  Think of the lymphatic system as an alternative circulatory system, which it is.  Cancerous cells may have travelled off to points elsewhere, even if no other enlarged nodes are detectable.

You do not say where your are being treated, but unless it is a superb facility, have your biopsy sample sent to another lab for re-evaluation.  This is usually not highly expensive, even if insurance won't pay.  If necessary, spend the money; it is worth it. Johns Hopkins, Sloan-Kettering, MD Anderson and others routinely perform these second reviews of biopsies from elsewhere.

Cancers of the female reproductive trac can be tricky in identifying.  Peritoneal cancers, for instance, are usually misdiagnosed as ovarian.  The bladder is "in the neighborhood" of where your previous endo cancer was centered, so I would just be cautious that some sort of morphing of the earlier cancer (even 20 years later) has reccured. This is, after all, what your surgeon initially thought.  And, Lymphoma itself can be very hard to identify as regards strain, of which there are well over 60 recognized by the World Health Organization. Chemo combinations that work well for one strain are worthless against some others. 

Almost all lymphomas are derived from corrupted "B-cells."  Your biopsy will say which b-cell disease you have, but likely you are referring to "Big-B" NHL, the most common aggressive strain of NHL (non-Hodgkin's Lymphoma). "Grade" refers to the apparant aggressivity of your biopsied cells, wwith "3" being the most aggressive.  But, aggressivity of lymphomas does not necessarily mean that a cure would be more difficult than a more passive (indolent) version; in fact, aggressive lymphomas are sometimes more easily beaten than indolent ones.

The wait for a few weeks to see the oncologist is irrleveant. In "lymphoma time," it is not much of a delay.  Ask the doctor how clear or problematic the diagnosis was for the pathology team, and ask her how to get their finding reviewed.   To repeat, the treatment will almost definitely involve adjuvant chemo treatment, although a "watch and wait" recommendation is within the realm of possibility. ("Adjuvant" treatments are secondary therapies used to lessen the likelihood that additional tumors will reoccur; adjuvant therapy is almost always either chemo or radiation.) 

While bulky (you described it as a 'mass'), your involvement of only two nodes suggest Stage 1, incipient (just beginning) disease.  It very likely will be easily treatable.

max

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