Non Hodgkin's Lymphoma- Watch & Wait Approach

Thank you for your response. I appreciate any suggestions and thank you
for your time and support as it helps.

I forgot to say my biopsy showed Large B cell Lymphoma. In addition to this “watching” I have a ground glass lung nodule, and a menengioma in my head that is being “watched”. When my fears take hold of me — I imagine each of these problems require attention at the same time, or similar. But, what can I do?

I have been in Watchful Waiting for 2years after docs at National Jewish Health found my enlarged lymph nodes on their powerful ct scan. I went there for my chronic coughing up phlegm (which I still have!) Now I have blood work and see a doc every 4months. No symptoms and sometimes I manage to forget about it— especially if I am coughing a lot!

Hi Jackie. I just found this discussion about watch and wait. I was diagnosed with extra nodal marginal zone lymphoma in October 2023. I had 12 treatments of radiation to my tongue and palatine tonsils in December. I will see my radiation oncologist and have another PET scan next month to see how well the radiation worked. She told me this type responds well to radiation so I am hopeful that it is gone. My staging PET scan also showed some cervical and axillary lymph nodes that lit up, but they were indeterminate as to wether they were reactive or lymphoma. I am supposing if my next scan is clear, I will enter the watch and wait phase. I can relate to all the anxiety this can bring as it is certainly affecting me. My anxiety is made worse since I have a host of other issues like Sjogren's Syndrome, lymphocytic interstitial pneumonia, and lung nodules. A lot of my symptoms can overlap with the other illinesses so it's hard to know which is the culprit. It's good to be able to talk to others that are dealing with similar situations. Thank you for sharing. Mickey

Good morning, @rubles. Hi Pam, It would be best if you could get an appointment with an hematologist oncologist. However your primary care physician can also order the tests needed to diagnosis NHL

They may start with blood work, imaging such as CT or MRI or bone marrow biopsy. First they would likely begin with blood work. Here is a good source of information for you! https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/diagnosis-treatment/drc-20375685

I know in past conversations you’ve been concerned about having thrombocytopenia (low platetlets). Did you followup with a hematologist?

Can someone please tell me how to get tested for non Hodgkins? Im told by E.R. Doctors I need to be tested but they didn't help me. I keep this brief as it's very lengthy as well as my medical issues and serious issues with it all and not receiving care I need. Thank you for any suggestions. Pam

Me too! Welcome. @dani349

Thank you to everyone that has reacted to my post !🤎🤗🧡

@pmm I don't have a team . I have a heme/onc specialist doc that I see. But I'm sure he talks it over with others. He has a nurse who's awesome. When I have issues she is very nice and reassures me. Thank you for the info regarding older post. I'll read them. That's why I'm soo glad I found this thread of watch and wait . I need someone to talk to regarding things that may appear or just someone to talk to. I even signed up for a mentor on cancer site , but haven't heard anything . So I'm very happy I found this site and it's awesome members !

@dani349 some of the most interesting and helpful discussions start with older posts. No worries.
Anxiety is definitely not our friend. It can even raise your white count. For me, it messes with my sleep and makes me kind of nauseous when I eat. Then I think I’m symptomatic…you get the picture.
When you do have health issues it’s hard to tell what might reasonably be symptomatic of the blood disorder and what might be unrelated. It helps, I think when I chat with others and they have similar experience.
Do you have a receptive medical team you can utilize to ask questions?