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How Does One Deal With The "wait And Watch" Senario, And How Often Do You Get Scans?

How Does One Deal With The "wait And Watch" Senario, And How Often Do You Get Scans?

I was diagnosed with stage 3 Follicular lymphoma in Oct 2020. Waited 3 months until Feb 2021 for another scan. Again told to wait and see. Not much growth in nodes. I also have an enlarged lingual tonsil that does seem to concern anyone.

A MyLymphomaTeam Member said:

I had follicular lymphoma and was on watch and wait as recommended by 3 oncologists. The oncologist I chose to work with had specific criteria (basically node size and growth) by which he would start treatment. I was to get scans every 3 months. However, 6 weeks before a scheduled scan I could tell nodes had enlarged so I went back early to my oncologist. The follicular lymphoma had transformed (it’s rare but it can happen) and I started chemotherapy immediately. I’m in remission now. (Check out my story for details.)

My recommendations:
1. Get a second, or even third opinion.
2. Get specific plans for when treatment will be started if on watch and wait.
3. Contact your oncologist if you see any noticeable changes and go back early if necessary.

posted over 1 year ago
A MyLymphomaTeam Member said:

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!

posted over 1 year ago
A MyLymphomaTeam Member said:

Denise, don’t forget you can always get a second option from a Cancer Center that specialize in Lymphoma. Also, remember you know your body better than anyone. I had to push my oncologist to move the date of my PET SCAN up, by the time of the results it was a Stage III. He did refer me to Stanford Medical Center, but had he not, I would have made an appointment on my own if necessary. Most insurance companies encourage a second opinion!

posted over 1 year ago
A MyLymphomaTeam Member said:

I’ve been on the “wait” scene for awhile....scans show some nodes smaller, others a little bigger, old ones gone, n a couple + new....I know how frustrating it is...hang in there ! I’d certainly ask for info/help on tonsil....

posted over 1 year ago
A MyLymphomaTeam Member said:

I totally agree with all of the above recommendations! You know your body better than anyone else! I am a great believer in second options. Your local oncologist is going to see a number of different types of cancer. I prefer going to a cancer center or large University hospital where they have doctors that specialize in my type of cancer and can tell me the latest treatments available. Just remember lymphoma is very treatable!

posted 12 months ago
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