Non Hodgkin's Lymphoma- Watch & Wait Approach

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

Me too! Welcome. @dani349

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

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?

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

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!

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?

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

Hi @Dani359, I hope I can offer you some information and reassurance about your diagnosis of CLL/SLL. Both are a common form of non-Hodgkin’s lymphoma…a slow growing cancer in the immune system of the body. CLL occurs when the cancer cells are found in the blood, while SLL occurs when they are found in the lymph nodes. CLL can progress to SLL as cancer cells grow and spread.

I know that sounds frightening as heck! But this is very slow to develop. Doctors tend not to treat in the early stages because it has been shown not to add any benefit. And treatments for both are the same. None of this means the end of the world though. The watch and wait period, or active surveillance is a good thing. It means nothing is changing rapidly. Even having a 3 month period between labs is a good indication that things aren’t changing rapidly.
This is a good informational article to read about your condition:
https://www.healthline.com/health/sll/symptoms-treatment-sll
I’d also like you to read through this thread (posted below) in another discussion with, @joeeduffy and myself, about her husband’s early diagnosis of CLL. She was also very frightened about the unknown. Keep reading through several of the comments because they’re filled with great information about CLL and that you don’t have to fear this condition. As others in the forum have said, “This is something you’ll die with, not from.”
~https://connect.mayoclinic.org/comment/1007608/
~https://connect.mayoclinic.org/comment/1007740/

It’s important to fill your mind with forward thinking and positivity and to live each day to the fullest. Please try not to think of negative ‘what if’ thoughts…bad energy there! 😉I know, I sound like the good fairy but I’ve lived through a very aggressive and difficult form of leukemia…that was 5 years ago. Now I’m healthy and cancer free…no meds! So let’s get you in a good place with this, ok?

@loribmt thank you so much for the information. So I didn't update my status, but my lab work that came back indicated that I was in the intermediate risk group which means I would need treatment between 1-5 years.