How to monitor for reoccurring BC after double mastectomy?

Wow!! Curious, did you have chemo for the breast cancer?

No, in 1965 Chemo was not an option, and Radiation only if you had positive lymph nodes. Surgery was the only treatment for breast cancer. Tamoxafin was not found yet, so you had surgery and prayed alot.
Gina5009

You are so right on so many points, but some bone cancers can be felt early. My husband had a bone cancer develope in his hip which gave him considerable pain. He thought it was arthritis, and was going to ignore it. I convinced him to see a doctor and have an x-ray which showed a small cancer. He received radiation, and was placed on Ketokonasol (incorrect spelling Toe Fungus Medication) and no further bone cancer. The type of cancers you describe are definitely not palpable, and we have to be alert to things that seem unusal and see a doctor to be checked out. I know we all feel the medical people look at us and think "she is just over sensative", but the primary thing we all have to remember. "It is out body, we are the one with the history of cancer, not the medical personal, and we are going to do everything possible to keep that body healthy."
Like you, I never had an oncologist, just a Vascular Surgeon and after 1 year, just my primary doctor. Look at it this way, "You are stranded on a deserted Island, you are in charge of your survival."

It probably means no more mamograms, but if you see something that is disturbing to you SEE A DOCTOR. i SUDDENLY had a lump in my thigh. Doctor said Lipoma, no need to get excited. One year later, because I could not stand to look at it any longer, removed it in doctor's office. DERMATOFRIBROSARCOMA. Lucky, slow growing, no complications.

@windyshores -- that's so weird about having unusual eye movements. While it was detrimental at the time it happened, but you're right in thinking it may just be a warning sign in the future.

As for liquid biopsies and blood tests, @colely recently mentioned CTC tests (breast cancer related) and Galleri (tests for 50 cancers). I can't remember which thread it was on or if you commented on it. Google them if you didn't see that before.

I've commented on so many threads now and to so many different people that I can't keep everyone's story and all the different threads straight so I may repeat myself. I do see your name on most every support group I'm on. We seem to share a lot of medical issues so I'm starting to feel like we're unknowingly related. 🙂

@californiazebra maybe you are a long lost cousin 🙂

My autoimmunity is flaring badly this summer so I did wonder if it was cancer related. Testing showed scleroderma. I have had a lupus diagnosis for years but rheumatologist never did the full panel for ANA reflex.

The connection between cancer and autoimmune flares makes sense since the immune system revs to fight the cancer. My eyes are okay I think but getting them checked. It was called paraneoplastic syndrome.

@windyshores that all does not sound fun. The one thing I’ve noticed on these message boards is that there are a lot of people like us that seem to just get blasted with a variety of different medical disorders. It makes me feel less alone in that regard. Blessings to you in all your battles.

I have the same concern as you. My doctor insisted it is outside of guidelines to do any screening and therefore would not order it. You can always request for outside imaging centers for either an ultrasound or mri. I am not sure if you can have mammograms especially if there is no reconstruction done.

I figure that without breasts, chances are any cancer recurrence will be stage 4 anyway. I mean, there are exceptions but the likelihood is that it will be in bones, lungs, liver, brain, or GI etc. etc. not local or regional.

Hold On! not all second or third cancers are Stage 4, just new cancers. I had breast cancer at 36, Dermatofiibrosarcoma 20 years later, and Squamous Cell Cancer 35 years after that. None of them Stage 4.
Gina5009