Watch and Wait makes sense for many. After research and weighing the pros and cons, that is what I think is best for me at this time. I firmly believe that we must all be our own self advocates. You know your own body best - so if you feel something is off, please know that it is fine to push a bit to move up a scan/test or pursue another opinion. (In answer to your question, labs and CT are currently @ Q 6 months).

Lymphoma and bodies are complex - do what you can do support your body/healing. Good Luck!

I have Waldenstroms - don't know how that compares to your diagnosis. Was diagnosed in 2005 - they did body scans blood tests of course - and a bone marrow biopsy.
I was on watch and wait until last spring - starting having headaches, fatigue and occasional light-headedness and dizziness.
Discussed with Onc who had been doing quarterly blood tests since '05.

He looked at the blood tests, did a new Mri an bone marrow biopsy and determined that I was within a year or so of needing treatment - but no need then according to tests.

I complained that my quality of life was greatly diminished (I'm 77 yo - Social Dancing and going to concerts were my regular activities - couldn't handle them at this time.)

So he sent me to an onc more specialized in WM - and she agreed that treatment now was a good option. Having my third of sixth round of Bendamustine/Rituxian this week.

Bottom line - I think you have to trust your body and you have to trust your Onc. Do your own research on the internet - LLS has a great site - and ask your ONC lots of questions.

Good Luck, Joe3

Joe3,

Like reading your answers. You are so open and honest about what happens. You do a service for us all.

I love, love, love that you spoke up for yourself and questioned when your Dr said that you did not need treatment right away. So glad that you went on to see a specialist. I know that tx is not always easy but you "know your own body" and moved forward. I wish you minimal/no side effects and complete remission in 2023.

Hugs,
Rebecca

My husband had NHL and had the watch and wait approach for 6 years with a scan each yr at first. Then since no changes after 2 yrs, then they went to every other year. Then all the sudden his throat started bothering him and felt his tonsils were swollen. They took one look and said it was cancer, the tonsils removed and was told he had double hit large B cell lymphoma. We were told the lymphoma morphed into this other cancer.

Having seen many other types of cancers in my family, cancer seems to go to parts of the body that are already impaired. For example: My dad a diabetic who was a alcoholic for years, died from pancreatic cancer.

So my advice is get another opinion and keep a very close eye on ANY changes and symptoms!

My opinion is if you have to have lymphoma that is probably the best one! But you have to keep getting checked and if you have any symptoms (night sweats, weight loss, loss of taste, nodes swelling, etc) then you make an appointment immediately to get checked!