@A MyLymphomaTeam Member
Hi! Yes, this forum is a great source of comfort and knowledge for sure!! Mine was first diagnosed as I had an enlarged lymph node on the side of my neck that never went down.. So I went into my PC, and she felt it was larger than it should be so ordered an ultrasound. From there they felt it needed to be biopsied. It was then with that biopsy that it was diagnosed! I then had a PET Scan which determined the Stage… which is determined by how many places you have it, their location and the sizes of the cancerous nodes.
I do not have any symptoms.. sometimes I get myself believing it’s gone away 🤪
Occasional unexplained fatigue is the only thing I can say would be part of it for me. In answer to your concern about it transforming into a more aggressive type,
I also worried about that in the beginning. But my doctor has explained they keep a close eye on everything and will know the signs of that happening. The upside of not treating immediately is that this is very slow growing… some people go years without needing treatment. Also, there is no cure for this type… treatment puts us into remission (hopefully for a long time), but treatment may be needed again… So, the theory is saving us from too many “needed” treatments, as long as they can!
Hope this helps some 😊❤️
God Bless 🙏

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A MyLymph...

Alicia, when your husband and you have discussed the issue of treatment for his follicular lymphoma with his oncologist and have full confidence in his oncologists decision making you should take his advice and proceed with the plan.
If you feel you’re not sure about his treatment , then You should seek a second opinion. Confidence in your Oncologist is priority number 1!

Hi Katharine, thank you so much for sharing your experience with follicular lymphoma. I’ve had similar thoughts,wondering why not treat it now before it has a chance to become aggressive. But I understand what you’re saying, especially knowing it can take years to progress and that treatment can affect healthy cells too.

Do you have any symptoms? How was it first discovered?

It really gives me peace of mind that the doctor you saw for a second opinion also supported the watch-and-wait approach. For now, he’ll be monitored every three months. The waiting and uncertainty are definitely the hardest part of this journey.

This group has been such a source of comfort and support for me. Thank you again for sharing, and I’m wishing you the very best with your next test.

Hi Allicia,
Being told to watch and wait can be daunting.
My first diagnosis was at 55 in 2016, stage folliculur lymhoma sgage 4B agressive requiring immediate treatment. I had R-CHOP, a complete response and 2 years immuno threarpy. In April 2020 I was diagnosed with FL stage 3 just at start of Covid shutdown here in Japan. My oncologist gave options of watch and wait or treatment. Since Covid was so unknown I decided to avoid hospitals but during my summer teaching vacation I was feeling tired, I choose treatment and my onc accepted my decision (Japan hospitals took strict measures during Covid, masks are still mandatory for patients, visitors and staff at all hospitals and clinics). did not want to wait until or if it progressed to stage 4 with all the classic symptoms, especially if I got Covid as was older and more immuno compromised. I had a new treatment, another complete response and am gratefully still in remission. These days I take really good care of myself. It helps going through treatment or any illness. And avoid thinking what if I had waited.
Our situations have different factors to weigh,stages, symptoms, age, care ... .
It sounds like you have good care, MylumphomaTeam, your oncologist and your second opinion have all given your husband solid advice but utimaltely it's up to you. Wishing you all the best. 👍

@A MyLymphomaTeam Member
Hi Alicia,
I was diagnosed with Follicular Lymphoma, Stage 3, two yrs ago this month. When my doctor said “Watch & Wait”, I’m like WHAT, I have cancer and you aren’t going to treat it!! It was freaky at first to wrap my head around. Even though I loved my oncologist, I did get a second opinion from one of the most renowned, the Mayo Clinic/Rochester, MN. Saw one of the top oncologist’s there and he reviewed everything, actually ordered one more biopsy, and after those results, concurred with my doctor and said Watch & Wait also. It gave me peace with that plan. I then read and learned as much as I possibly could (still do that), which also has given me confidence in this plan. I have still not needed treatment. After the initial
3-month check-up, I have gone in for bloodwork and CT scans every 6 mos. My doctor is keeping a good watch over me. I actually go in tomorrow for my 6 mo. evaluation and I’m crossing my fingers that I can go another 6 mos!! We will see. So, I guess my advice is if you question the plan seeking a second opinion does help. And also, definitely read up and learn as much as you can… that also helps. It’s a journey for sure. I know treatment will be in the cards down the road some time. Hope this has helped you a bit. ❤️

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A MyLymph...