This is the post I hoped I’d never have to write. It’s official as of this past Tuesday, August 13, when my dad went to see his oncologist regarding the results of his recent PET scan. The previous PET scan he’d had was eight months ago. He had an ultrasound done a few weeks ago after a routine checkup with his primary care doctor, who was concerned and sent him for further testing. His back has been hurting a lot, and he’s had terrible abdominal pain that’s left him lying in bed for most of the day. Mantle cell lymphoma is back.
His abdominal lymph nodes were exceptionally inflamed – 26mm when the upper limit for normal lymph nodes is 10mm. Of course, they were tucked behind his internal organs, making it difficult to get a good picture, so that’s when he got the PET scan. His oncologist was on vacation when the results came back, and one of the nurses gleaned the word “stable” from the report when my parents called about it. She gave us false hope. The word “stable” was completely unrelated to the problem at hand, as “stable chronic sinusitis” was revealed during the scan. THAT was the word she passed along while we waited for the oncologist to come back? Irresponsible.
Anyways, the oncologist wouldn’t talk over the phone, so my dad went in on Tuesday morning. Turns out, his PET scan was lit up like a Christmas tree from neck to navel. The lymphoma is back, and it’s not just in his abdomen, but up in his neck, too, despite him not having the throat problems that led to the discovery of his cancer the first time around.
He has to have a needle biopsy to determine whether or not this is the Mantle Cell Lymphoma or another type of cancer. The oncologist said he was 90% sure the MCL was back. It’s possible that there were some undetectable cancer cells left in the bone marrow they took from him for his autologous stem cell transplant, and they’ve been biding their time until now to reveal themselves again.
This is hard news to swallow. Mantle Cell Lymphoma recurrence has a terrible prognosis, although that is based on old data, and new treatment options have been developed since the first time he had it. In fact, his oncologist suggested getting a second opinion about treatment options after the biopsy results come back, either at Dana Farber or Sloan-Kettering. He might be able to get in on a clinical trial or something.
We could use your thoughts and prayers. My dad is at peace with whatever comes of this, but the rest of us aren’t ready to lose him. I’m hoping for a miracle with one of these new cancer treatments. If you have the means, please consider making a donation to the Lymphoma Research Foundation (LRF).Your donations are tax-deductible, as the organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code.
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