Stage IV NED crew : lets support each other
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@chocomousse That all sounds very intriguing. Is it really cancer? That is the question. So confusing. Hope you get some answers soon.
Thinking of you!
Hugs, Pam 💗0 -
So although I'm not NED, the only way to know what the nodule in my adrenal gland is is to have it biopsied which I don't want to do. I did the SBRT simulation and will start 5 rounds of radiation treatment in about 3 weeks.
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@chocomousse Good luck with the radiation. I had 5 rounds last April to my sternum. Except for some heavy fatigue for a few weeks, I had no complications and have been NED ever since. Sending healing thoughts your way.
Hugs, Pam 💗1 -
So, before starting the SBRT, I requested an adrenal protocol MRI which is an alternative to a biopsy. The results were indeterminate meaning the nodule possessed features of both a benign and malignant tumor. It looks like an adenoma because classic adenomas contain microscopic intracellular lipids and breast cancer tumors do not contain microscopic intracellular lipids. However, it has a high SUV of 10.7 which is indicative of malignancy. But my onco. said that other factors beside malignancy can cause cells to take up glucose. So, he suggested that we continue to watch it and if it grows then we'll treat. SBRT is not without risks and if this is a benign adenoma, I'd be destroying a perfectly healthy adrenal gland for no reason.
I read this: "Benign adrenal adenomas are unique because they are made of normal adrenal gland cortex cells, which naturally contain rich pockets of microscopic intracellular fat (lipids). Breast cancer cells do not contain these microscopic fats. Even if Enhertu and Perjeta perfectly halted a breast cancer metastasis from growing, the drug would not change the fundamental cellular structure of breast cancer to make it look lipid-rich on an MRI."
And this: "Standard medical guidelines, including those from the American College of Radiology (ACR), state that if an isolated adrenal nodule between 1 cm and 4 cm remains stable for one year or more, it is considered benign, and further oncological imaging follow-up for that specific nodule can often be stopped. Malignant lesions typically exhibit rapid growth if left unaddressed…"
Hoping that I am truly NED. My Sept. CEA is 2.5 and my CA27-29 is 30, both normal range. My next Signatera will be in October and I'll have a followup MRI in December.
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@chocomousse Wow! Great job on your research! It sounds like you are on the right path. The less treatment, the better.
Enjoy a lovely fall!
Hugs, Pam 💗1 -
Thank you @livinglifenow I just hope that I'm making the right decision.
Happy to see that you've had 6 negative Signatera's in a row!
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@chocomousse It is always so difficult to know if we are making the right decision. When I was diagnosed with MBC two years ago, I was advised to do chemotherapy along with the HP protocol—by two different oncologists. I chose not to do the chemotherapy. That is basically unheard of with triple negative MBC. Yet, here I am NED for well over a year. And, overall I feel quite good—no nasty chemo side effects.
I am crossing my fingers and toes and anything else I can cross that you remain NEAD!
Hugs, Pam 💗0
