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What's A Common Misconception About Lymphoma?

MyLymphomaTeam asked a question 💭
San Francisco, CA
May 22, 2024
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Answer Summary

Members passionately dispelled misconceptions about lymphoma, emphasizing that it encompasses roughly 80 different diseases with varying... Read more

Members passionately dispelled misconceptions about lymphoma, emphasizing that it encompasses roughly 80 different diseases with varying severity, not a single condition or automatically fatal diagnosis, and rejecting hurtful phrases like the good cancer or dismissive comments about invisible symptoms like fatigue, bone pain, itching, and chemo brain. Several members shared deeply personal stories, including misdiagnoses that delayed treatment for months, the emotional toll of watch and wait protocols, lasting cognitive effects even years after remission, and the frustration of hearing you don't look sick when grappling with stage 4 disease or debilitating symptoms. A recurring theme was fierce self-advocacy, the importance of questioning doctors and researching independently, finding community with others who truly understand, maintaining faith and gratitude despite uncertainty, and living fully with purpose regardless of prognosis.

A MyLymphomaTeam Member

It is a death sentence (IT IS NOT). Some types your more likely to die WITH it than FROM it. Eat healthy... exercise often... get good sleep... and live like there's no tomorrow anyway!!!!!

May 22, 2024
A MyLymphomaTeam Member

Lymphoma is not always easy to diagnose. I had "classic" DLBCNHL symptoms: unexplained weight loss, night sweats, fatigue, runny nose, fever. Elevated WBC count and low RBC count. Over 8 months, I was sent to various specialists including an ENT, rheumatologist, infectious disease specialist, a gastroenterologist, and even a hematologist/oncologist from City of Hope, a leading cancer center (for which I actively raised funds for over 30 years, on the Board of Directors of my chapter). All doctors laughed and were dismissive of me and my wife when we told them we thought I had cancer. After being hospitalized for several weeks, they continued to treat me with black box antibiotics like vancomycin which completely weakened my condition, despite negative blood cultures. I had a mass in my abdomen near the affected lymph nodes which tested "benign" in 3 different needle biopsies. I finally insisted on seeing an oncologist, which saved my life. Modern medicine can work wonders (I am in remission over 6 years and very grateful) but the initial diagnosis can apparently be tricky. Fortunately I responded well to R-CHOP chemo, but one more week and I think things would have progressed to a point of no return.
Question your doctors, stand up for yourself and even though they tell you not to go on-line, DO go on line and educate yourself so you can be a better advocate for yourself. Wishing you all health and happiness!

May 22, 2024 (edited)
A MyLymphomaTeam Member

I have unfortunately lost friends because they said “you’re lucky, you have the “good” cancer” WTH…. There is no good cancer, I’m sick with my immune compromised body than well…it has cost me friends that I thought were💔💔

May 22, 2024
A MyLymphomaTeam Member

All of the above. Most people don't understand watchful wait. And the fact that one day is good but tomorrow can be very bad

May 22, 2024
A MyLymphomaTeam Member

That it is just a "little cancer"....why are you so tired? Cancer causes itching? You still have brain fog? What to you mean your bones hurt?
NOBODY UNDERSTANDS!!?

Anybody want to back me up on this? The vastness of so many blood cancers and the things we go thru afterwards are overwhelming to us, much less others.

May 22, 2024

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