Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLymphomaTeam Member asked a question 💭
Kenner, LA
June 9
 · 
Reactions

Answer Summary

Members rallied around a question about whether a comment was inappropriate, turning the thread into a powerful conversation about... Read more

Members rallied around a question about whether a comment was inappropriate, turning the thread into a powerful conversation about self-advocacy and finding the right doctor when facing lymphoma. Many community members shared personal experiences of switching oncologists, requesting specific tests, recording appointments, and keeping journals to stay informed and get real answers about their diagnoses. A recurring theme was that living with an indolent but incurable cancer like SMZL is emotionally heavy, and members leaned on faith, family, and each other to find strength and keep going.

A MyLymphomaTeam Member

Hi Donna, there is no inappropriate comments made. We are here to listen to your feelings and support you. Our gut feelings are usually the right ones. I am haveing a similar problem, but I am bold enough to confront the doctor and asked him if he was in a hurry. Confront, analyze, and then take action. What ever you decide is the correct answer and everyone will have a different answer. Remember, we are here for you and your husband , ❤️. Christine

June 10
A MyLymphomaTeam Member

I too am diagnosed with Primary Splenic Marginal Zone Non Hodgkin's Lymphoma. I was diagnosed in December of 2025. For 2 to 3 years previously I had been in the hospital for several different kinds of pneumonia. One time I was septic and almost had to be on a ventilator. I kept asking why I was getting sick so often and they kept telling me that I had a poor immune system. I have known for years that I had an Iga deficiency so I didn't press it. Then in November of 2025 I broke my arm. The morning that I was at being prepped for surgery they noted that I had a fever, so my surgery was cancelled. I then saw my PCP and she observed my swollen abdomen and also felt big nodes in my neck. She ordered lab and a PET scan. My wbc was 1 and my spleen was huge at 24 inches. She sent me to a hematologist who ordered a bone marrow biopsy. I was then diagnosed with Splenic lymphoma. The hematologist told me that I probably had lymphoma for at least 3 years. He went over my hospital labs and found that my wbc, hgb, and hct were low for 3 years and that is exactly why I kept getting sick. One time it was mrsa pneumonia and that caused me to be septic. Not once while I was in the hospital did any nurse or physician tell me that I had abnormal lab or a swollen spleen even though I had multiple labs at CT's of my abdomen. I almost died when I had mrsa sepsis. No one in my family would have known that I had cancer. I was really angry at first but now I am just concentrating on my health. So you definitely have to be your own advocate. I have no problem now when I feel like something is wrong in telling me doctor I need to be checked. And he is very accommodating to me. He really has no choice, lol. I went through 6 weeks of immunotherapy and now will have the treatment every other month for 2 years. I am 70 years old but I knew that feeling so weak and sick for 3 years was not normal. I often wonder if I had not broke my arm how long would it have been before my cancer was discovered? And because of all of my cancer and the treatments they never could fix my arm. That will be done soon and as awful as it sounds they will have to re break my arm and use metal and screws. Not looking forward to that. I am doing better and now my spleen is still swollen but half the size it was and my wbc is normal now. That's my story and I am wishing all of you good health, peace, and comfort.

June 23
A MyLymphomaTeam Member

I think it is good to be frank with the dr. We changed systems to get a hematologist that spent so much time explaining in detail all test results and answering all our questions. This was a huge relief compared to first hematologist who I am sure was good doctor but too busy.

June 16
A MyLymphomaTeam Member

@A MyLymphomaTeam Member I always do!
We only have 1 life!
We must self Advocate for ourselves
Scottie

June 12
A MyLymphomaTeam Member

Viki, Thanks so much for your story. You are an inspiration! So spot on! Give your troubles to God. He knows what your plan is Then do the best you can. Be a good friend, a good Mom and an inspiration to others, God bless you. I love that we are able to support each other and you have a magical day!

June 29

Related Questions

View All
A MyLymphomaTeam Member asked a question 💭
Tucson, AZ

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In