Non Hodgkin's Lymphoma- Watch & Wait Approach

Thank you so much for your comforting words and information. All of this is a learning process and also coming to terms with it! I most definitely will let you know how September appointment goes. I am just learning how to navigate this forum…. haven’t quite figured out how it works, feel like I’m fumbling my way through a bit. So I will try and find you here after my appointment. I am thankful for my ability to put “this” (my diagnosis) on a shelf until I need to address something. I am thankful for my optimistic attitude and always look at the glass half full instead of half empty!! So I know all will be well. Knowledge is Power… that’s why I joined this forum! Thanks again ❤️

Thank you so much for your comment. It really helps… to get information from those who are before me on this journey! Take care 🙏

Welcome to Connect, @katharine56. Having to ‘watch and wait’ after a diagnosis can feel like you’re waiting for the proverbial ‘other shoe to drop’. The inaction feels contrary to your thoughts of ‘let’s get this taken care of!’, right? Follicular lymphoma is often slow to develop. So you’ve likely had this condition for some time.
Your doctor has staged and graded the level of involvement and is using those results to determine if and when they’d suggest starting treatment. Some patients without symptoms can go many years without treatment. The good news is that there are several positive treatment options available for follicular lymphoma.

Knowledge is power but the internet can be full sites that may not be very productive or helpful. So here are a few articles from credible sources which will give you some useful information about the disease and potential treatment options.
~uptodate.com:
https://www.uptodate.com/contents/follicular-lymphoma-in-adults-beyond-the-basics
~Healthline.com:
https://www.healthline.com/health/follicular-lymphoma#diagnosis
~Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/symptoms-causes/syc-20375680
I’d also like to tag some of the members in Connect who also were diagnosed with FL so they can offer you some suggestions and discuss their experiences with you…here are just a few: @valandsheri @quimbie @puddknocker @traceyt @vonbaron36 @bogie60 @lee59 @susanlim

Wishing you only good news on your upcoming appointment in September. Will you please let me know what you find out?

Be patient. Once you start on medication you are there for the rest of your life. The docs know the tipping point. Meds have terrible side effects. You trade one problem for another. It’s all okay. Don’t be troubled. Follow the doc and be comforted.

I was recently diagnosed with Follicular Lymphoma Grade 2/Stage 3. My doctor put me on “Watch and Wait” for the first three mos., which my next scan and blood work will be in September. I know I’m new to this and have much to learn. As you all know, the “Watch and Wait” plan was difficult to understand and accept at first. I’m doing better with it now and, of course, will know more in September. My biggest concern is it progressing from Stage 3 to Stage 4 (which would involve an organ or my bones) while we are “waiting” ! I do not have major symptoms yet. Can anyone give me some peace with this?

My brother-in-law had Non Hodgkin's Lymphoma but this was back in the very late 90's. His treatments did not work and he passed away in the spring 2000. He was an entrepreneur and always seemed health conscious.
At that time he owned had a small chain of healthfood stores and two of his younger sons worked for him. It was devastating for my sister and their 4 children. I never thought he work develop cancer at 53 and died at 54. Ever since I have watched out for personal issues.

Hi ,
Just a quick update of my situation. My follicular lymphoma initially showed up on my nose , and after 18 radiation sessions, was gone . Went few yrs with no significant events, but at my last CT they found a lung nodule big enough to “ scream “ cancer . So last December I went for surgery. It was stage O and also they removed some lymph nodes with no evidence of cancer . Fingers crossed. Thank you

Welcome to Connect, @categ. This is a great place to meet others who share the same diagnosis. Here are just a few of the members who also have follicular lymphoma such as @valandsheri @quimbie @puddknocker @traceyt @vonbaron36 @bogie60 @lee59 @susanlim @caracello22.

Some members have been on ‘watchful waiting’ while others have received treatments. Because this is generally a slowly developing cancer some people can go many years before requiring any intervention.

I’m also popping in a couple links to articles about follicular lymphoma that you might find helpful.
~Healthline.com:
https://www.healthline.com/health/follicular-lymphoma#diagnosis
~Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/symptoms-causes/syc-20375680
Were you having any symptoms when you were diagnosed or was this discovered with routine blood work?

I have been told it is a wait and watch disease. However I soon will be 75 and that may be part of the decision. I hpe not!

I was diagnosed with follicular lymphoma 1 year ago. I am not receiving treat because it is a slow growing cancer.
Anyone else have any experience with this disease?