IDC 10/30/18

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Imagine923
Imagine923 Member Posts: 8
edited November 2018 in Just Diagnosed

Well...I am joining your club, ladies. I don't want to be here, but it appears that this is a good place for me to be. From what I've read, I will find a lot of good advice and comfort in my journey.

I was diagnosed on 10/30/18 IDC 1.5cm ER- PR+ HER2 - grade III not well defined cells no lymph node involvement indicated on ultrasound.

Had an appointment with a surgeon who is recommending genetic testing for BRACA gene because i have a “1st degree relative" (sister) with ovarian cancer.

Her initial surgical recommendation is lumpectomy with Radiation and Chemotherapy. IF gene testing comes back positive she would do a mastectomy with Chemotherapy. Possible node biopsies. Place a port for Chemotherapy.

MY want is, double mastectomy, no matter the results of gene testing, and whatever it takes for me to not have to go through this again.

Surgeon is saying that studies show the outcomes are the same for lumpectomy vs mastectomy and she would not recommend a double due to infection risk, etc in the healthy breast. I stated a second time my wishes and she again stated the outcome and chances for infection, etc.

I know the final surgery decision is up to me, but I don't understand why I am getting push back.

We meet today with the Team from the Breast Center, all the doctors involved in my case. Other places call this group a Tumor Board

I am scheduling a second opinion with another surgeon.

-Chris

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    Hi Chris,

    It sucks that you have to join us...but you'll find good reliable information here for any kind of treatment you eventually choose to do, and a lot of encouragement and understanding as well.

    I was in a similar situation. My MO told me that rads and lumpectomy were the same as a BMX but she never asked me about my dense breast tissue, which hides (and did hide my problem) tumors from scans like mammograms. ILC--the subtype I had--also tends to be multi-focal and appear in a breast that might appear to be "clear" in a mammogram, so I insisted on chemo, rads, and BMX with recon, and got it. Don't let pushback sway you from some intuition you have about trying to make a proactive decision for you, and get a second opinion if you need it.

    Claire in AZ

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Chris, I was dx the day after you, so am in much the same place. I will have options for surgery depending on genetic testing (sister with BC) so I’m in the middle of reading up a whole lot about the options.

    I’m sorry that we both have to be here. I’m glad that we are able to get support and knowledge from this group, though.

    Good luck with your meeting today, it will be overwhelming. I recorded mine so I could review it later. Let us know how it goes

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited November 2018

    How did your appointment with your team go today? Did you get better answers to your questions?

    I think I was the opposite of you. I went into this thinking a lumpectomy would be fine, then they found aggressive DCIS in the other breast and I decided the girls had to go. It was the best decision I ever made. The BMX has brought me tremendous peace of mind and that's a big deal once you have this diagnosis.

    You asked why you were getting pushback from your dr. It's your dr's job to recommend the least invasive surgery to get rid of the tumor. So that would be lumpectomy/ radiation. I think most people have the immediate reaction to get rid of everything but when they have time to think about it they realize they don't need to be that extreme to get rid of the cancer. So I suspect your dr is just trying to see how firm you are with your decision. If that's not the case and the dr clearly isn't listening to you then you need to find a new dr, one that treats you like a partner and respects your needs and concerns. You have every right to insist on a BMX. It's your body.

    Sending hugs and hoping your upcoming surgeries and treatments go smoothly.

    Lucky

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  • Imagine923
    Imagine923 Member Posts: 8
    edited November 2018

    Thank you for sharing your experience with me Lucky. Peace of mind is exactly what I need and want. My sister in law had lumpectomy for DCIS and was on tamoxifen for 5 years. She finished tamoxifen 2 years ago and they are closely watching another lump in the same breast. 😢

    My appointment with the team today was basically another "hurry up and wait" kind of meeting.

    First I had genetic testing done. I have a sister that had ovarian cancer and 2 sisters that had hysterectomies ecause of abnormal cells. I also have a brother that had prostate cancer.

    Initial test will be for 9 genes then the rest of the results will come later. 23 genes total being tested.

    I'll know in about 9-12 days if it's positive. That will determine the route of my surgery. If positive, a hysterectomy would be in the near future because of the likelihood of ovarian cancer developing.

    After that we met with my care team of doctors. the surgeon, medical oncologist, radiation oncologist, and my nurse navigator.

    Total about 16-20 weeks of chemo and about 5 weeks of daily radiation.

    I mentioned again my wish for mastectomy. Surgeon again mentioned the studies of lumpectomy vs. mastectomy.

    I have an appointment with my second opinion surgeon on Wednesday morning. He has ALL my records and consultation notes from my other surgeon. He is a surgeon from the hospital system that I work for, so my comfort level is already raised because of the many recommendations I've been given by other employees.

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  • Imagine923
    Imagine923 Member Posts: 8
    edited November 2018

    I went for my second opinion appointment this morning with surgeon #2

    We talked for quite a while and he knows and has a lot of respect for surgeon #1 and had nothing but good things to say about her ability as a breast surgeon. Surgeon #2 does all types of cancer surgeries and although does not specialize in breast surgery has done many of them.

    We talked a long time about my cancer and about the different options to surgery. When I told him my desire for a double mastectomy with reconstruction and the reasons why, he had no reservations at all.

    Surgeon #2 also wants the pathologist at that hospitalto take a look ay my biopsy slides. He said because, I have 2 masses in the same breast. The one that showed + for cancer cells was 1.5 cm. The other is smaller but "looks exactly the same" as the one with cancer cells. He also did his own breast exam and ultrasound in the office.

    He “didn’t think” I would need Chemotherapy but again said he was a breast surgeon and noting that I had grade 3 cells and ER- PR+ HER2 -.would refer me to a medical oncologist to discuss that treatment. I want to know that this monster will be out of my body!

    Not sure how I feel about not having Chemotherapy or radiation. Especially after Surgeon #1 recommended it with either lumpectomy or mastectomy.

    I don’t know what to do.... 😢 I do know there is no big hurry but Surgeon #2 said that whatever decision I make should involve my surgery within the next 3 weeks .


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  • Wised
    Wised Member Posts: 351
    edited November 2018

    Imagine923, the stage and grade of your tumors will be determined after surgery when the pathology of it is examined. That will also show if your lymph nodes are involved. That plus some genetic testing will determine if those cancer cells would respond to chemo. Your oncologist will discuss the treatment s and risks when you have a better idea of the features your tumors have. It is complicated and confusing. I know because I was diagnosed just a month or so before you were. You don't have to make chemo decisions for awhile yet... I'm sorry you've become involved in this worry, hurry-up-and-wait cycle!

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  • amyrn129
    amyrn129 Member Posts: 7
    edited November 2018

    I’m new to the group

    I am 42 yrs old and I was diagnosed with breast cancer through a screening mammogram. Invasive ductal carcinoma stage 1. The mass was 7mm.

    My genetics just came back negative. I had a breast reduction when I was 18 so I have a lot of dense tissue and scar tissue. I’m planning on a bilateral mastectomy with reconstruction in Dec 7th. I’m still not sure I’m making the right decision. Meeting with the surgeon tomorrow to make final decision

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