Just diagnosed facing bilateral mastectomy

Beckip
Beckip Member Posts: 3
edited September 2015 in ILC (Invasive Lobular Carcinoma)

Just dx with ILC stage 1. During MRI another "suspicious" area was found approx 3cm from the first tumor. Decided not to biopsy the second and go with bilateral mastectomy due to family history. BRCA not back yet. Second guessing myself like crazy. Anybody have thoughts? Thanks

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2015

    I had a suspicious area that turned out to be normal. I did left mastectomy and reconstruction DIEP. I thought they would recommend BMX but they didn't. Sounds like the BMX would put your mind more at ease. The reconstruction is so good these days.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2015

    Be sure to get pre-op arm measurements and information on your risk of lympedema. I did not want to sacrifice healthy tissue but now require periodic MRI scansto make sure nothing is brewing on the "good" side.

    Hopefully your genetic counselor can help reassure you regarding these decisions once test results are back. There is more out there than just BRCA. Has someone else in your family had a mutation detected?

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  • Kdell63
    Kdell63 Member Posts: 23
    edited July 2015

    Hi Beckip,

    I was diagnosed with ILC stage 1 tumors (4 tumors, <1 cm) on my rt. breast on June 16th, and had a bilateral mastectomy on June 26th. I am waiting for the results on the sentinel node biopsies that I had done. The surgeon only said they were "unremarkable". The first of the genetic tests came back negative.

    I'm absolutely not sorry regarding my decision to do a bilateral. I'm sorry this has happened to us, though, and that we have to make these decisions.

    I'm sending you good thoughts, and please ask me any questions you might have regarding the procedure, because that's really the only thing (so far) that I can speak about.

    Take care,

    Kath

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  • Beckip
    Beckip Member Posts: 3
    edited July 2015

    thank you Kath, I'm sorry to hear you also are going thru this! My biggest question is how much can you do after surgery and what do you wear? And how do you deal with the new body? Did you opt for the reconstruct?


    Becki

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  • Kdell63
    Kdell63 Member Posts: 23
    edited July 2015

    Hi Becki,

    I'm sorry this is happening to you, too. It sucks, and I would say that to the queen of England right now.

    Getting out of bed, sleeping on my back, and soreness in my chest, shoulders and armpits were the biggest problems for me. I read somewhere that before the surgery you should practice getting out of bed without using your arms. It takes some practice.

    I was given an enormous bra that has pouches for the drains and I didn't even try it. I cannot stand anything next to the incisions or near my underarms- it feels uncomfortable. I took the hospital-issued socks and put the drains (grenades) in there and then used a safety pin to attach them on either side of me like holsters. I honestly didn't want to share that aspect with my husband and sons. At first I just wore button down pajama blouses, but now (10 days) I am wearing men's tanks ('wife beaters') and a blouse over that. The men's tanks are really stretchy and easier than my own tanks right now.

    After about 1 week I was feeling good enough to reach and raise my arms a little. I can do a few chores around the house that don't require too much, and when I go out I put the drains in a fanny pack and kind of hide the tubes with my blouse.

    I wasn't given the choice to start the reconstruction during the surgery, in other words, they said they didn't know if I would need radiation. I guess every hospital is different. I am doing some reading on the different types of reconstruction. I think I just need time to heal. I can't imagine not having a chest again.

    I took pictures of myself before the surgery and I've looked at them since. My nine-year-old son asked me where my breasts "were". I told him they were in the basement of the hospital being dissected. He thought that was interesting. So, I guess what I'm trying to say is that usually I focus on the practical - the breasts needed to go. period.

    I still miss my chest before the cancer. I've cried when I'm alone and it felt good because it's a sad thing and we can't always be strong.

    Be good to yourself. :)

    Kath




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  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited July 2015

    I am sorry you had to join us. I had a BMX w/o recon not looking back. Am very happy having a clean slate that is easy to check to see if anything tries to come crack in the future. Healed up fast and feel wonderful. You couldn't pay me enough to go through more procedures. Hoping you can be at peace with your choice

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  • HopefulandScared
    HopefulandScared Member Posts: 9
    edited July 2015

    I found a lump May 20th, had bilateral mast and since my nodes looked clean the planned reconstruction was done same day, June 23, before I even knew about my genetics results. I still would have had the bilateral mast done regardless.

    Bummer is that a week after surgery, my path report for one of the lymph nodes was positive. I thought I got all the cancer out that day. Guess not.

    I'm 37 years old, trying to get my 3 year old boy to stay in his bed right now. I can't imagine not doing a bilateral mast just to worry more about whether or not I was doing everything I could do.

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  • mary625
    mary625 Member Posts: 1,056
    edited July 2015
    Hi, I was advised to do a bilateral due to the chance of recurrence, but I did have the option of keeping the "good" breast. I put good in quotes because I had 3 areas that lit up on the MRI in the "good" breast and could not be biopsied by ultrasound--too small. Even though I decided on the bilateral, I still had to have them biopsied with the help of MRI. They all proved not to be cancer. I had been through so much at that point and was two weeks away form my surgery date, so I kept with my choice of bilateral.

    The biggest factor for me was that my ILC was not picked up by mammogram and despite the very large tumor and 2 cm lymph node, I was told that if I kept the "good" breast, I would not be eligible for an MRI. I would definitely recommend checking with your provider and your insurance to make sure that you could get an MRI regularly if you keep one breast. Some people seem to be able to and others not.

    I miss my real breasts very much. I wonder if intimacy will ever be the same. I lived boobless for a couple of years and had recon within the past year. The results are amazing, but alas, it's only my former stomach fat.
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  • mary625
    mary625 Member Posts: 1,056
    edited July 2015
    P.S. The reason I biopsied my "good" breast even though I was planning on the BMX was to save myself from a sentinel node biopsy. I knew I was have an axillary node dissection (lymph node removal) on the bad side. The good breast was on my dominant side, and I was advised to prove it was not cancer so as to avoid the sentinel and possible lymphedema. So glad I did because I have lymphedema on my cancer side and one arm is more than enough! I know I really didn't want to go through another biopsy, but I'm glad that I did.
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  • cbwitt1970
    cbwitt1970 Member Posts: 65
    edited September 2015

    I was just diagnosed with ILC on 8/18/15, my 3 year wedding anniversary 😔. I am scheduled for a bilateral mastectomy on9/29. I am terrified! I am 44 years ol

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Hi CB-

    We want to welcome you our community here at BCO. We're sorry for what brings you here, but we hope you find this to be a supportive place.

    This is a bit of an older topic, so you might not get much feedback here. We suggest heading over to our Surgery forums, to get some insight on your upcoming surgery. Our Just Diagnosed forum is also full of valuable info, and you can connect with other members in your shoes.

    Please let us know if we can be of any assistance, and good luck with your surgery!

    The Mods


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  • molliefish
    molliefish Member Posts: 723
    edited September 2015

    Hello cbwitt1970. I'm very sorry to hear about your diagnosis and your upcoming surgery. You certainly have every right to be frightened. There are thousands of very helpful supportive women (and men) on this web site that will be able to help you as you make your way on this unintentional journey. Please take care and ask any questions you need to.

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  • cbwitt1970
    cbwitt1970 Member Posts: 65
    edited September 2015

    thank you

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  • Girl53
    Girl53 Member Posts: 225
    edited September 2015

    Cbwitt: I am so sorry to hear about your diagnosis but glad you have a good treatment plan underway. I was diagnosed with ILC last Monday and am considering a PBM. So very scary, but I am so grateful we have each other for support, info, and comfort here. You will be in my thoughts as your surgery approaches.

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  • Girl53
    Girl53 Member Posts: 225
    edited September 2015

    Kdell: Found your posting here. I was just dx'd with ILC Monday on right side, and am told that PBM not an unreasonable option for me (I also have LCIS and a very strong family history). Wanted to see how you are doing. Wow, this is scary. As I just read from another member, it seems I've entered a whole new world that I didn't know existed. Will read your posts.

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  • wallycat
    wallycat Member Posts: 3,227
    edited September 2015

    Beckip, how are you doing?

    There are quite a few threads on the surgery area that talk about recovery and decisions about surgery.

    I hope you are doing well. Every gal is different on how they respond, so it is great to read about the many different ways each of us has handled this. Having surgery by choice versus being told it is necessary also raises different emotions.

    Please come back and share how things are going for you.

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  • 2mulligans
    2mulligans Member Posts: 3
    edited September 2015

    I was just diagnosed on Sept 4th. Sept 13th was my one year wedding anniversary. I am stage 3A. I'm not trying to one up you. I just want you to know that this situation, yours and mine, is unbelievable.

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