Breast Cancer after Prophylactic Mastectomy

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SoulShine1969
SoulShine1969 Member Posts: 3,047
edited October 2015 in Just Diagnosed

Has anyone else been diagnosed with breast cancer after PBM? I am BRCA1 and had my prophylactic surgeries a few years ago. An 8mm mass was detected during an MRI last month. FNB concluded IDC. I knew that there was still a risk of BC and other cancers after surgeries, I just wonder how often this happens.

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  • inks
    inks Member Posts: 746
    edited March 2015

    So sorry to hear about your diagnosis. Since the risk is about 1% I'm pretty sure this has happened to someone before. I hope you hear from someone with a similar experience soon. I am so glad you had the MRI that detected your cancer. What was the reason to get the MRI? I have had BMX and will not get any testing aside from physical exam. What a bummer that even whit PBM you got cancer. Do you know anything about the grade and ER receptors yet? And just having your ovaries out is supposed to reduce the risk by 50%. I hate cancer so much....

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  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited March 2015

    inks

    I have a yearly MRI for surveillance, alternating with a clinical breast exam. My MRI was due in March. My GP and I decided to go a month early, in February, after I felt a lump in my left breast. She thought she felt a lump, too, in a different area on the left side. So, MRI detected a hot spot on the left side. Next, I had FNB. Biopsy came back triple negative IDC, grade 3. I won't know the stage until Monday, when I have my surgery. At least the surgery should be a breeze, there really isn't much left to take!


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  • inks
    inks Member Posts: 746
    edited March 2015

    Yes you are right, the surgery will be nothing compared to the BMX you already had. Do you know what they will do about lymph nodes? I know you cant have sentinel lymph node biopsy but I have heard that sometimes even after MX they will inject dye to see which lymph nodes the breast would drain first and they try to only take those nodes. Stupid stupid cancer.

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited March 2015

    Best wishes to you. I think it is a 3-4% chance and I have seen another woman on here with the same situation, I think that she is stage IV though (praying that does not happen to you!). I hope that she sees this ands posts.

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  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited March 2015

    Inks, you are correct. They can't do a typical SNB, but they will inject dye and see where it goes. The surgeon is going to take a few of the axillary nodes to biopsy as well. Hopefully, all clear. I agree, stupid, stupid cancer!!

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  • inks
    inks Member Posts: 746
    edited March 2015

    That's great that they will use the dye to look for the nodes maybe it will save you from ALND. Has anyone in your family already had BC? I have to tell you that even though my grandmother and her sister are BRCA1+ and had BC they are still alive. Unfortunately the sister with ovarian cancer passed. How old are you?

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  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited March 2015

    music lover,

    Thank you for the information. I appreciate any information that I can get. Best wishes to you, as well!

    Inks,

    My sister passed away from BC last year. She was 45 when she was diagnosed, and 47 when she died. Since her diagnosis, my father and brother have also tested positive for BRCA1. My paternal Grandmother and Aunt passed away from Ovarian Cancer years ago. Before anyone knew about BRCA. I also have two cousins on my dad's side that have passed away from leukemia. I believe that my cousins also had BRCA.

    I am so encouraged to hear that your Grandmother and her sister are survivors. Although, it's sad that their sister with Ovarian cancer passed away. It is so very sad how devastating cancer can be in our families. Sometimes it's as if the "shadow of BRCA" stalks us. We just have to find a way out of it's darkness.


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  • inks
    inks Member Posts: 746
    edited March 2015

    So sorry that your sister passed. I got my mutation from my father as well, my sister has still not done her prophylactic surgeries. We can't change our past or genetic make up so I try not to dwell too much on those things. Just one day at a time. My grandmothers sister was diagnosed over 30 years ago, so they can't even remember if she was ER+, BMX and chemo and she is fine.

    I'll keep an eye out for news about your surgery. It's ironic that one can have a lumpectomy after MX.

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  • gema213214
    gema213214 Member Posts: 1
    edited March 2015

    Hi,

    I had a Mastectomy on my right breast for non-invasive cancer back in Dec 2009, at which time they did a sentinel node biopsy and put me on tamoxifen for 5 years. I also had reconstructive surgery. About a year ago I started feeling a lump on my implant. The doctors kept telling me it was scar tissue. It started to become painful. They sent me for a sonogram, the radiologist said she believed it was cancer. I was already scheduled for surgery Sept 2014,(to have the scar tissue removed) long story short, turns out it was grade 3 cancer. Luckily it was still small, stage 1. My plastic surgeon performed my surgery, not a cancer doctor, because of the original diagnosis that it was scar tissue, so no nodes were tested. My oncologist felt I didn't need chemotherapy, but does have me going through radiation. My radiation Doctor did recommend that I have the Axillary Node Dissection Surgery, or my radiation treatment would have to cover a more intense area. I had this surgery in late Dec. The second cancer surgery (lumpectomy) was a breeze. The Axillary Node Surgery was also easy, but months later I'm still having shooting pains and strange sensations in my arm, and numbness under my arm. They tell me the radiation can be contributing to some of my discomfort. I didn't know about the dye for the lumpectomy. They did that in 2009 with my 1st surgery. Hopefully getting the axillary nodes at the time of your cancer removal will lessen the damage done to your nerves. Check with your doctor. I wish you all the best. I had never heard of anyone else getting cancer in a breast that they had a mastectomy on before. When I tell everyone that this is my 2nd time around with breast cancer they always assume, it's my other breast. Who knew? Best Wishes!!!

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  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited March 2015

    inks

    You are right, lumpectomy after MX is ironic! Best of luck to you, and your sister.

    gema

    I'm so sorry that you had to go through a second cancer diagnosis. You were smart to have the doctors check it out. I'm glad they caught it early on. Do you think that the axillarynode surgery caused nerve damage? Lymphodema?

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  • DiveCat
    DiveCat Member Posts: 968
    edited March 2015

    Rebecca,

    I just saw your thread now, though I did respond to your PM yesterday and added you to the March surgery list :)

    I am so sorry, it just sucks you did all you could and still ended up im this situation.

    I do recall there are some women on FORCE forums who has a BC dx after PBMX, I recall one of them was fairly recently dx'd about a year after her PBMX. You may want to post something over there as well?

    Best wishes for your surgery on Monday, yes it will likely be easier than the PBMX/recon was in terms of recovery, but it may also be harder in other ways. I hope your nodes are clear as well.

    Many hugs to you.

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  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited March 2015

    DiveCat

    Thank you for adding me to the March surgery list. As I write this I am minutes away from starting my pre- surgery procedures. Yay!

    I will most likely post something on Force. You're right, more of a chance of finding someone with a similar situation over there.

    Thank you, as well, for the well wishes. I am on a mission to kick cancer'sass today. I am confident that with the help of the fine doctors at Prentice Women's Hospital at Northwestern I will be successful!!

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  • inks
    inks Member Posts: 746
    edited March 2015

    Sending you good ju ju for your surgery! I hope the recovery is easy!

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  • lisamarie68
    lisamarie68 Member Posts: 1,235
    edited April 2015


    I had my bi lateral mastectomy in 4/2012 ... with silicone implants . this past week I have felt like a rod shaped lump that I can pick up and roll around .. my underarm has been hurting for a while on and off ... im wondering if I need to go back to the breast surgeon and have this looked into , or could it be scar tissue and nothing to worry about . thanks

    Lisamarie

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    Go back and get it checked.

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  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited October 2015

    lisamarie68- I agree with MusicLover, anything suspicious should get checked out. I hope that you have seen your doctor and all is well.

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