I had a fifth PET/CT scan this past May to check on any possible recurring breast cancer. All that the oncologist called and said was I had a right kidney stone that could possibly be blocking my kidney. (Turns out it was in my ureter and must’ve passed itself). I asked what else and he said that was it.
Since being diagnosed with first inflammatory breast cancer then told it was a typo, it was actually stage 3b invasive ductal carcinoma after a lumpectomy in December of 2017 and them insisting I rush into dense dose chemo, it’s been a nightmare of a different kind. I’ve had 4 breast MRI’s, 5 PET/CT scans, 3 mammograms, and 3 ultrasounds. I’ve only seen the words on these tests, never the actual scans. After I refused the chemo and asked for a second opinion (the surgeon’s friend-a month later) which was the same, the surgeon said she found what looked like a recurrence on the scar line. The punch biopsy was the same as the first one. I went to a dermatologist to biopsy the skin directly next to it and after much asking, found out it said “Squamous Cell Carcinoma” as the diagnosis code. No one would address this.
I ended up getting a double mastectomy, mostly from pressure from family and friends to “get it over with”. And then a chest wall surgery and radiation. After my one year exam, I was told all looked good on exam and I was fine. To return in a year if I thought I needed to. When I asked about NED, he said (this is the second, chest wall surgeon in another hospital) “they don’t always write it exactly that way”. I tried calling the radiologist but was told he only speaks with the drs. I have no idea what to do next. I’ve been told by many people “to just let it go”. Including my rheumatolgist! Has anyone ever had any kind of experience like this? If so, what did you do?