Update on my story
Hopefully someone can learn from my mistakes! And help keep me from making new ones. I will not be as trusting again. I will not assume that any doctor knows best. I will spend more time looking at my options and I WILL ALWAYS get a second opinion.
Jan. 26- mammogram and ultrasound- suspicious lump in outer quadrant of right breast
February?-~a week and half later- lumpectomy, infiltrating ductal carcinoma ~4.5 cm (appeared to have increased in size in since the mammogram ) and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3, referred me to a well known clinic in Memphis
February 20-PET scan showed something on liver, onc said it looked "moth-eaten", and it did. Nothing showed up in lymph nodes on the scans. Said I was stage 4, tried to get me into a clinical trial for avastin, they said it was not measurable, so no clinical trial. Onc said because the lesions on my liver were so small and scattered it would be very diifficult to biopsy but they were sure it was metastatic breast cancer. My other tests showed nothing anywhere.
March- Started carboplatin, herceptin, taxol on a four week cycle, not dose dense
Sometime in April- onc says that it might not have been in my liver after all, maybe it was a fluke. That he wished he had done a biopsy. That he shouldn't have let the radiologist talk him out of it. Maybe he should have shared this sooner.
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- appointment with new onc, talked with him longer than I have total with first onc, very concerned that there had been no biopsy, discussed treatment, tests, etc, scheduled bone scan, CT, with and without contrast
July 6- first onc keeps wishing he had done a biopsy, maybe we should consider a mastectomy, might bring it up at "show and tell", but thinks his colleagues would not agree that the 1st PET scans were wrong.
July 9- new onc tells me he has been on vacation in Hilton Head but while he was there his thinking on my treatment had crystallized (I am amazed that he was thinking of me on his vacation.) The new tests showed no cancer. That there should have been a biopsy but it is obviously too late, However, he believes that the first PET scan may have been a false-positive in the liver, but either way, there does not appear to be cancer anywhere else in my body. He thinks that I should get a mastectomy, that it is my best option to hopefully remain cancer free. We will also continue herceptin for another 6 months.
My opinion is that it can't hurt. If it has not spread, then the mastectomy will help prevent it from spreading; if we are wrong then it won't change the first diagnosis either way.
July 18- met with surgeon, scheduled mastectomy for August 9
I feel like I have been on a roller coaster ride. I am comfortable with this decision but if anyone has any on advice what tests I should have as follow up and how often, please let me know.
Leslie
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