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Stage 3 Follicular Non-Hodgkins Lymphoma..and Wondering Why No Treatment Has Been Recommended...
A MyLymphomaTeam Member asked a question 💭

I am reading here that a lot of people have been receiving treatment with a lesser stage (I & 2) than I have. (I have Stage 3 *follicular* non-hodgkins lymphoma). I have been on watch and wait since my diagnosis in April 2019. I'm wondering why the oncologist is holding off on any treatment. Why wait until it gets bad? Has anyone gotten treatment while being asymptomatic? If you do have symptoms, at what point did your Dr decide to start treatment?

posted November 13, 2019
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A MyLymphomaTeam Member

I was diagnosed with Stage 3 also. I just saw my oncologist for the first time this week. Since FL is a non-aggressive, slow growing disease, if the patient isn't having any symptoms that are interfering with their life, treatment is often not started. The reason is that treating someone who is having no symptoms really does no good. The only symptom I have is enlarged lymph nodes.The only noticeable ones are on my neck (what first caused me to go to my doctor). My oncologist said that if I start to experience symptoms such as drenching night sweats, extreme fatigue, unexplained weight loss, fever, or continued enlargement of lymph nodes, that I should come in. Those types of symptoms would warrant treatment. The goal of treatment would be to put the disease in remission. In the meantime, I will be monitored periodically with blood work and imaging. I was told that I would likely die from something else and not FL. Hope this helps. :-) (I am a patient at Wake Forest Baptist Health in Winston-Salem, NC. This is a teaching hospital. My oncologist's total focus is Lymphoma.)

posted January 29, 2020 (edited)
A MyLymphomaTeam Member

They won’t treat stage 3 follicular lymphoma as they can’t cure it. That’s why we watch and wait until it starts to compromise an organ or blood vessels or it may transform. Not everyone needs treatment their lymphoma stays pretty quiet and only about 3% of case transforms. I hope that was helpful.

posted December 2, 2019
A MyLymphomaTeam Member

I have nmzl which is also indolent. I was on wait and watch for four years before needing treatment. After treatment, I was symptom free for five years. (Remission) Now I’m back on wait and watch. Think of it as a chronic illness that only needs treatment when symptoms get bad or lymph nodes press against vital organs. Not wonderful but it is what it is

posted November 25, 2019
A MyLymphomaTeam Member

I was diagnosed thirteen years ago with Stage three Non Hodgkin Follicular lymphoma at Mass General in Boston with Dr. Takvorian. He gave me the advise to go home and LIVE. I am a patient with Dr Glenn at Huntsman Cancer. I have been on wait and watch for 13 years this fall. I have been healthy. I too, was very nuts about this course but have been told many times that I will know when I am in trouble. Hope this helps. Connie

posted June 16, 2020
A MyLymphomaTeam Member

I agree with blusiamese and LeeAnnNastasi's posts. It's really important to get an oncologist that is familiar with your specific type of cancer. At the very least they should be a Hematology Oncologist (blood cancer specialist), but lots of experience dealing with Lymphoma and if possible your specific NHL is the best. I saw two different Oncologists and both had experience with Follicular Lymphoma but I chose the one I have now because I trust him and feel good about working WITH him and his team. And I recommend everyone get a second opinion no matter who you choose! My doctors had different opinions on when and how to do treatment, my prognosis etc. My first oncologist thought I should treat right away because that is what he would do, but everything blusiamese said is spot on - there was no NEED to treat immediately . That being said, it's really YOUR choice when you want to start treatment. Some people need to feel they are doing something immediately. I didn't want to start chemo until my body said I had to. That came for me when my lymphoma took over my bone marrow causing extreme pain in my left hip making it difficult to walk. I had 6 months of treatment and am in remission now. I don't regret waiting.

posted January 29, 2020

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