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The Beginning
A MyLymphomaTeam Member asked a question 💭

Two plus years of difficulty breathing and multiple Urgent Care/ER Md’s telling me all labs and heart look great! “Btw heres some muscle relaxers.” Monday this past week I hyperventilated in my MDs office. She sent for a stat CT of chest and there are multiple lymph nodes that are “very large”. On tues they did an abdominal CT they had to get special approval because of too much contrast under 24 hours. It came back clear and more labs/ekg, also clear. Worked me into a Pulmonologist Weds and he… read more

posted February 8, 2020 (edited)
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A MyLymphomaTeam Member

My advice is to be a strong advocate for yourself in the healthcare system. I noticed a small 1/8 inch lump in my groin that I thought was an infected lymph node. No pain and I felt fine. I'm very active and fortunately have almost never been sick in my life. I'm 68. It took a month to get in to my internal medicine doctor and get an initial diagnosis of lymphoma. Within the next month, I got a CT scan, biopsy, and PET scan. Within two months from noticing the small lump, it had grown to 3 inches long and getting bigger. The PET scan showed extensive cancer throughout my lymph system ( 50-60 cancerous spots from my neck to my groin) plus the cancer had metastasized outside the lymphatic system and into my liver, bone marrow, and back bone. I was diagnosed with stage 4 Non-Hodgins Lymphoma, Diffuse Large B cell Lymphoma. The cancer was very aggressive and had gone from nothing to stage 4 in 2 months. My oncologist said I needed to schedule an echocardiogram and get a port surgically placed in my upper chest before chemotherapy (R-CHOP) could start. When I called about getting the port put in, the scheduler initially said I would have to wait 6 weeks. I pushed back, telling her firmly "that is not acceptable" because I will be dead by then and that an earlier date had to be found so I could start treatment ASAP. Being assertive worked. I got the echocardiogram and the port put in within 3 days and started chemo one week after my diagnosis. Fortunately, the chemo is working, the lump in my groin is gone, and my numbers are back in a normal range. I'm half way through six infusions of chemo (R-CHOP) over an 18 week course. If I had not pushed back and been assertive and advocated for myself, I might not be here now. You know your body better than anyone else. If a doctor is not listening, insist on a second opinion. Do not be afraid or hesitant to challenge any doctor. If they're worth their salt and competent, they can handle you being a strong advocate for yourself to get the care you want and need. I wish you the very best.

posted March 8
A MyLymphomaTeam Member
posted March 28
A MyLymphomaTeam Member

Scuddles51: sometimes the biopsies do take time, especially if they have to do certain special staining techniques. Unfortunately waiting for the results feels like it's taking months. And yes it's all very unreal. For me it's been almost 2 years since I was diagnosed and treated. I'm almost back to my old self (emphases on almost and old, LOL) and hoping I'll make it to that magic 5 year mark. I hope you get there, too.

posted March 21
A MyLymphomaTeam Member

By the way, I initially found it very hard to believe I had cancer. I had no pain, felt great, was swimming and doing weights multiple times a week, and hiking. So it was a total disconnect in my head to be told I had a lymphoma when I felt fine. But as the cancer quickly progressed, I started experiencing sharp pains at different places and night sweats during the week before the final diagnosis. The pain was very severe and I had to take oxycodone during that time. It was then I decided that, if I had any hope of surviving, I had to start chemotherapy ASAP.

posted March 8
A MyLymphomaTeam Member

took 13 months of very frequent doctor visits and so very many xrays, blood draws, CTs before I was finally diagnosed with stage 4 DLBCL. I was told my biopsy results would take 3 weeks. the reason, I was told, is because there are several different tests performed on the tissue. Some of the test's results come back right away but others take time. They wait and watch the tissue to see if it changes over time like at 2 weeks and at 3 weeks. Dr. explained it better and it has been a year since he told me, but it all made sense when it was explained to me. I am told lymphoma is not so easy to diagnose at an early stage because often the symptoms are mild and people believe it is something else Non dangerous such as heartburn, feeling like you may have overdone it yesterday etc. Another thing, don't get all caught up about what stage you have. I had stage 4 and after my very first round of chemo I was positive I was going to kick it. After 6 rounds of chemo my PET scan came back, no more cancer. Just keep a positive attitude, try to eat healthy, rest and sleep when needed. Get some mild exercise.

posted January 17

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