mixed up diagnosis- any advice

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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.

Comments

  • iodine
    iodine Member Posts: 4,289
    edited July 2007
    I have no advice. I can only offer my prayers for a swift recovery from any further treatment you choose. You have certainly been put thru a wringer and I hope all is true that you have no further ca showing up on scans forever. Bless you, you sure deserve that.
    Are you considering any reconstruction?
  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    It's a roller coaster ride for sure.
    I can't believe that your first oncologist said "I wish I would have" that's pretty amazing to me since my oncologist doesn't speak unless spoken to.
    I don't really have any words of wisdom for you as far as other tests.
    I will say however that you sound like you are on top of what they are telling you, you are listening and you are getting other opinions. That's really good in my humble opinion.
    I can see why your freaking out with no "firm" diagnosis though. That would make me crazy too.
    I wish you the best of luck and hope you keep us informed on how you are doing. Please keep posting.
    Night, Traci
  • chemo072
    chemo072 Member Posts: 682
    edited July 2007
    on the bright side - no cancer in your liver! that's a good thing....maybe the chemo got it? seems like chemo is the variable between the tests if I read your post correctly?

    things do change, bodies are amazing, I'm so glad the tests are turning out well now for you.
  • Shirlann
    Shirlann Member Posts: 3,302
    edited July 2008

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