Not sure what to ask or do

ouray17
ouray17 Member Posts: 54
edited June 2017 in IDC (Invasive Ductal Carcinoma)

Original diagnosis: right breast invasive ductal carcinoma, (no ductal carcinoma in situ present), nottingham grade 1 (3+1+1) ...positive for estrogen receptor (100%) progesterone (90%) and negative for Her2. ki-67 proliferation index is 20%. Biomarker testing: tumor block:1A

Came to MD Anderson because they did my 3rd thyroid cancer surgery in 2001. Yesterday, I had 2 hours of diagnostic 3-D mammograms, the us, then 6 biopsies - 3 on each breast. The right 3 areas were small so fna, 2 tiny areas in the breast away from the original area are cancer. One area was on the chest wall. Good news was a lymph node had a cyst in it so it was okay. The radiologist did 3 core biopsies on the left breast. Thought 2 of 3 were okay, but will be a few days to find out for sure. He put a clip in all 3 for future scans.

How does all this change things? Are there questions I need to ask when I meet with the doctors Monday? I'm still kinda in shock from yesterday and can't seem to get focused on having more than the original. Seems like my body is growing stuff & I need it to stop.

Karen

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  • Falconer
    Falconer Member Posts: 1,192
    edited May 2017

    ouray, I'm sorry you're here with us. It looks like you have a lot of information already. That is good. Perhaps your oncologist will order/ has ordered an oncotype or mammaprint test.

    http://www.breastcancer.org/symptoms/testing/types...

    Since your pathology came back as strongly ER+, you may receive systemic hormonal therapy alone rather than chemotherapy and HT. As I had a low oncotype score, chemo was not deemed necessary. Good luck to you as you navigate through the beginning phases of treatment. It is often confusing but it's good you found the BCO. Many many amazing women here with info and experience. Hope all goes smoothly for you.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited May 2017

    Depends on the next results, how old you are and your menopausal status, how widely scattered the “new" areas are from the original tumor and where (besides the chest wall) all the new spots are, and the size of your breast. Do know that if you had to get invasive breast cancer, that original diagnosis isn't bad—highly hormone-positive, HER2-negative and only grade 1. Slow-growing (unless that “3" component in the Nottingham score is mitotic rate, in which case it could explain the 20% ki-67—but ki-67 is falling out of favor as prognostic). Nonetheless, not very aggressive. Not sure what the “tumor block: 1A" is other than perhaps that's the part of the tumor that was biopsied.

    Ask your doctors what's next, in their opinion; what they would recommend surgery-wise; whether you ought to be tested for genetic mutations (close family history or ethnicity are indications for it); and what the path reports of the other areas say. Any discussion of chemo vs. no chemo is premature until final surgical pathology (and OncotypeDX if that pathology is in a “gray area") results are in. You would definitely be advised to take some sort of hormone-blocker regardless of surgery, chemo or radiation—with such an early-stage hormone-positive cancer that is the most effective way to prevent recurrence after surgery and radiation have been completed. (Even if you were to get a mastectomy, a malignancy on the chest wall needs to be radiated).

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  • NEWB101
    NEWB101 Member Posts: 4
    edited June 2017

    I am a 62 year old, fine artist 30 years/ 10 years and currently a gallery owner. Previous years a BSRT, CRT, trained at UCLA Medical center and worked in a major hospital radiology department for 5 years. Was widowed 2.7 years ago after marrying an interventional radiologist for 35 years. I had my yearly mammogram on 12/14/16 with negative results as usual for the past 25 years of similar screenings. On May 2nd 2017 as I was serving a tennis ball, I felt as if a knife was stuck in my lower right back at the level of L-1. Pelvic CT Scan in ER showed bone metastases in the spine and pelvis. After PET Scan and thoracic CAT Scan it showed that I had stage 4 Invasive Ductal carcinoma metastases to the lymph nodes, spine and pelvis originating in the right breast! Until now I am in disbelief and still in shock as to how the Radiologist did not see the cancer in my mammogram only 4 months prior to my ER incident and how my Gynecologist, also at the same time while doing a PAP Smear and yearly palpating check of my breasts actually cleared me of any nodules. My husbands previous medical partners concurred that this invasive metastases did not occur in a short period of 4 months. It was just hard to see on my mammogram images!! I am ER+90%, Pr+5%,HR2- My oncologist started me on Ibrance and Letrozole. 3X Radiation therapy at body of Lumbar 1 spine so that it will not collapse in the near future.I feel that I have been given a death sentence when I am told that my cancer can not be CURED, but only treated with medications until the end of my life! I feel that I haven't even begun to live and now my entire life will revolve on my survival rather than my plans to plein air paint in Provence or other wonderful places on earth. I have a daughter who is a busy veterinarian 8 hours away and a son who is also busy with his job only 2 hours away. I am in love and engaged to this wonderful ENT surgeon and we were supposed to be married and start a new life together in 2018. I am devastated that our lives and plans are on hold. I feel reservations on his behalf and it makes me feel that he might think that we don't have a future together.....he is very kind and supportive of me but it hurts when we talk about our plans and his answer is" we will see". I do not know how long I will live and my oncologist does not commit to giving me any stats...all he says is that each cancer case is individual...we shall see also! I think I need support and hope from women who have my diagnosis and have survived for a number of years. Right now I feel that I want to close my art gallery and stay home and lick my emotional wounds!

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  • Falconer
    Falconer Member Posts: 1,192
    edited June 2017
    NEWB101- I am so sorry to hear the shocking news of your diagnosis. I, too, had received annual mammos/ had one two months prior to finding a bleeding lump that was IDC. It is so frustrating.
    I hope that the treaments you're receiving will knock it into remission fast. There are lots of women on the Stage 4 threads here who live active lives. Please talk to them. Good luck to you; you are not alone.
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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    NEWB - so sorry about your diagnosis. Do copy it and post on an appropriate Stage IV thread. Those women know so much. Go to My Profile & put in your diagnosis & treatment plans first so they'll be better able to answer your questions.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited June 2017

    wow, so sorry to see what is happening. I hope your new love is a strong one and is able to be supportiv

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  • NEWB101
    NEWB101 Member Posts: 4
    edited June 2017

    Thank you Falconer!

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  • NEWB101
    NEWB101 Member Posts: 4
    edited June 2017

    Thank you Minus Two!

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  • secondchancetoo
    secondchancetoo Member Posts: 50
    edited June 2017

    I read your post and my heart does go out to you. When I met my current husband I was 4 years out from a single mastectomy. We were hardly married for a year when I developed a new primary breast cancer in my remaining breast....I was devastated! Another mastectomy and so much fear that I was putting so much pressure on our new marriage with this new diagnosis. Of course always the fear, how long do I have if this nightmare keeps returning? We are both in our mid sixties so we know how fragile life can be.We are doing fine, and I wish you the best.

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