Does anyone worry about your TNBC going into other parts of your body?
I can't stop worrying. I didn't have chemo/radiation- just had a mastectomy with full breast & lymph node removal. Never even saw an oncologist. My surgeon said I could NOT call myself a survivor or 'recovering' or 'in remission.' So instead I'm in limbo. I've had shortness of breath at odd times for no reason for the last year (My surgery was June 2024.)
I finally got a chance to talk to an oncologist who said he wouldn't do any testing to see if it spread anywhere. That it wasn't likely to go to the other breast but rather into my blood to other organs. But he wouldn't do a blood test, or any other testing. I finally got my GP to do blood tests and I have low iron even though I have a high intake of iron in my diet and practically everything I eat is on the list of good cancer fighting foods.
I had a co-worker who was a breast cancer survivor just die of lung cancer. And I can't find anything help me figure out if the low iron could be a sign of something to do with the cancer. My doctor just says take iron supplements even though I already eat a LOT of iron rich foods. So it feels like he's treat the symptom w/o investigating the cause.
Sorry... just a rant. Feeling very alone. I can't talk about this to my family. I don't want them to worry and I'm sure my regular doctor just thinks I want attention. i just want answers.
Hi CJ W
I am sorry you are worrying about metastasis. The oncologist you spoke to is correct that it doesn’t spread from breast to breast (although you can of course get another cancer in the other breast). It’s also true that they don’t generally do scans without evidence of something to look for. Cancer can spread by blood rather than lymph, and if it was going to do this it would most likely have seeded cancer cells into other places before your mastectomy. I found I had a secondary tnbc deposit in my liver in 2022 when I had a CT scan for other reasons. It was just a few months after my lumpectomy and I was in the middle of adjuvant chemo. It hadn’t been in my lymph nodes but the pathology report had mentioned vascular invasion at the tumour site. But that’s my story not yours and i don’t think it’s a common outcome.
You are 2 years on from surgery. It’s normal to worry that every little thing is a sign of metastasis. Low iron is an obvious cause of the symptoms you describe and I don’t know of it being a symptom of cancer. You could perhaps try contacting our lovely MacMillan nurses to see what they say. The phone number is below.
Hoping you can find some peace.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
