Bilateral mastectomy, anyone???

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coral2015
coral2015 Member Posts: 30
edited July 2015 in Breast Cancer #1

Hi, I'm new to all this. I wanted to check out the forums for a while, but haven't really had the time :(

I'm Adriana, 33 years old. On February I was diagnosed with IDC stage III, BRCA 2 postive, HER2 negative. I'm done with my chemotherapy and now i'm facing surgery. There is a strong history of cancer in my family, and right now the best choice for me seems to be a bilateral mastectomy and Oophorectomy. I'm married and we have an awesome 5 year old boy; my father, uncle and grandfather died from cancer, my grandmother had BC and has a brain tumor for more than 15 years. Thats why I am so afraid of not making the right choice.

Any of you going throu the same situation? I have read a lot and reach to my doctors and family members for support and advice. Everyone has told me that is my body and is my choice. Doctors recommended bilateral mastectomy (my family agrees), but yesterday my surgery date was set and I am gettin scared. what if is not the right choice? what if something goes wrong? what if after all, i get bc again even with the mastectomy?

I know I'm not alone, but sure it feels like it :(

Comments

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    #2
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    You are not alone

    Hi Coral2015,

    I am so sorry you are dealing with this.  It is frightening, stressful and overwhelming.  But, you have come to the right place for support, advice, and encouragement.  It sounds like your family is giving you good advice and that you have a lot of support at home.  That is great.  I haven't gone through the same situation as you but mine was similar.  I was 40 when diagnosed with stage 2A.  I opted for a bilateral mastectomy because my cancer was aggressive and both of my grandmothers died of breast cancer and my mother also had it (but for the record, she had a mastectomy at 50 and she is still here 34 years later with no recurrence!).  I felt, that for my peace of mind, (and for symmetry's sake) I didn't want to worry all the time that I may have cancer in my remaining breast.  My husband was supportive of that decision.  For me it was the right decision.  It definitely released me from a lot of potential angst and worry.  I had reconstruction and am happy with the results.

    I hope you stay on these boards.  The ladies here are a wealth of knowledge and support.

    Hugs,

    Clementine

  • J-Bird
    J-Bird Member Posts: 5
    #3
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    Not exactly the same

    Hi Adriana,  I'm not going through exactly the same thing, I have not had the genetic testing done yet but it has been ordered because my sister and I were diagnosed within 5 weeks of each other.  Both IDC.  My initial diagnosis was DCIS in the right breast.  There were three areas of cancer that were widespread enough that I was not a viable candidate for lumpectomy.  The MRI on the left breast showed enough suspicious activity that I would have needed more biopsies and mammograms, etc., so I chose to go bilateral.  Pathology after my surgery revealed two invasive tumors on the right that had not been discovered on the mammogam.  It's not as though I had a choice in the matter, but I do not regret it for one minute.  It hasn't been easy to accept, it's been such a whirlwind experience.  But I'm at peace with it.

    The difficult part of your decision is that when you take a prophylactic approach and have a bilateral mastectomy to prevent recurrence, you will never know for sure whether you would have gotten bc again.  But considering your family history and your BRCA2 positive status, if I were in your position I would feel pretty confident that it's the right choice.  You said "what if after all I get bc again even with the mastectomy" - I have two responses to that.  One, keep in mind that your chances of recurrence are greatly reduced with the BMX (and I would encourage you, if you haven't already, to talk to your doctors about the statistics on this).  Two, I think it's normal to worry about recurrence even after BMX, you would feel like you went through it all for nothing, but I think it's far more logical to take a prophylactic approach rather than say "I'm not going to do this in case I get bc again anyway."  I don't want to diminish your worry, because it's definitely valid and mastectomy is a huge and scary thing, but it's almost akin to saying "I'm not going to wear my seat belt because people die in crashes with their seat belt on anyway"

    I hope this was somewhat helpful.  I'm new here too, and I'm new to the whole breast cancer experience (diagnosed May 19), so maybe others will have better advice, but I wanted to give my two cents for whatever it's worth.  hugs.

    Dianna

  • bonbondidit
    bonbondidit Member Posts: 116
    #4
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    BMX

    My bilateral mastectomy (BMX) has given me more peace of mind than if I hadn't done both. I know as I know that cancer is a sneaky beast but for the most part I feel that I've given it my best shot at reducing the risk of "others" showing up in the tissue.  I was diagnosed at a stage 3A but was tested 2 1/2 years prior with s core biopsy that said negative. So in those two years WHAM! here I am. Mine was only on the left side from what they told me but I noticed my right breast nipple area just seemed faintly similar to the left one years prior. It made me feel like it wwas following suite.  I did the MRI mammogram and it showed lots of cycts in my right breast and areola area.  That is what I had in my left breast for years prior to my cancer diagnosis. IDC. SO for my general peace of mind I wanted them both off. I opted for the skin sparing double mastectomy and have zero regrets. My scars look like a happy face grin. I know that's silly but I don't reject my new look at all. I went from a C cup to a perky a/b cup...probably more B due to having skin sparing technique done. The hardest part was getting over my arm lymph nodes being removed. I had 18 taken out. That gave me a slight sunburn feeling for a while afterwards but I lined my underarm with my best and softest PJ material and it was way better. ALso they have little pillows. I am one year out now and its waaaaaay better.

     

    Hugs!

  • kjana
    kjana Member Posts: 30
    #5
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    i had bilateral mx and have

    i had bilateral mx and have not regretted it for a second

  • coral2015
    coral2015 Member Posts: 30
    #6
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    THank you :)

    Thank you for your kind and positive words. Today I have an appointment with my doctor to discuss these issues. Reading your experiences gave me a new perspective, talking to people who has been through this gives me courage Laughing

  • kjana
    kjana Member Posts: 30
    #7
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    coral2015 said:

    THank you :)

    Thank you for your kind and positive words. Today I have an appointment with my doctor to discuss these issues. Reading your experiences gave me a new perspective, talking to people who has been through this gives me courage Laughing

    wonderful!

    wonderful!

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
    #8
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    I chose the double.  The

    I chose the double.  The biggest reasons were these:  1) I had chosen to attack the disease aggressively; and (2) I really did not want to have to go through all this again.  I had two different kinds of bc, with my left side being my biggest problem.  As it ended up, I was Stage 3A on the left and Stage 0 on the right.  I had chemo and rads after my surgery.

    Three years ago I was finishing chemo.  So far, no signs of trouble.

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #9
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    Yes bilateral.  Didn't really

    Yes bilateral.  Didn't really have a choice as mine was in both sides and generally does go to both.  I personally feel I did the right thing for sure.  Well done getting through the chemo, not easy with a little one.  If you go ahead please be warned the drains can be annoying but they will be taken away usually around two weeks.  Use your pain meds it's only for a certain amount of time.  Wear soft, loose button up front tops, no stretching, ironing etc. take genuine help when offered especially with children and meals.  Rest when you can and start walking, gently exercising when you can. You will heal, feel better and get strong, make sure you eat and have someone you trust to talk to, who will listen.  Very important to get comfortable on an evening in bed! and rather difficult.  A reclining chair is a good option.  We are here too to chat too of course.

     

    Your five year year old will give you strength and joy but someone else will have to bathe him after your surgery and such, take to school or preschool just for a while.  Good luck it's all doable.  

  • Penny3
    Penny3 Member Posts: 2
    #10
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    Bilateral

    i had no choice! I found in left and was aggressive in right! 20 nodes, chemo, radiation and I'm going back in 3 weeks for my first checkup! I had invasive lobular carcinoma, stage 2 B and stage 3 C with 14 nodes positive! I am having trouble with Lymphedema in right arm and hand! Wearing a glove and sleeve everyday! 

    You can do this, everyone has given you excellent advice! I had no reconstruction because of weight and radiation! I'm also 59 and husband was okay with it just wanted me to survive! I wish you the best! Prayer, family, friends! 

     

  • coral2015
    coral2015 Member Posts: 30
    #11
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    RozHopkins said:

    Yes bilateral.  Didn't really

    Yes bilateral.  Didn't really have a choice as mine was in both sides and generally does go to both.  I personally feel I did the right thing for sure.  Well done getting through the chemo, not easy with a little one.  If you go ahead please be warned the drains can be annoying but they will be taken away usually around two weeks.  Use your pain meds it's only for a certain amount of time.  Wear soft, loose button up front tops, no stretching, ironing etc. take genuine help when offered especially with children and meals.  Rest when you can and start walking, gently exercising when you can. You will heal, feel better and get strong, make sure you eat and have someone you trust to talk to, who will listen.  Very important to get comfortable on an evening in bed! and rather difficult.  A reclining chair is a good option.  We are here too to chat too of course.

     

    Your five year year old will give you strength and joy but someone else will have to bathe him after your surgery and such, take to school or preschool just for a while.  Good luck it's all doable.  

    great advice

    Thank you RozHopkins! Yes drain where a pain LOL. Got them out on thursday. I accepted and keep accepting all the help offered. So far no pain really, took some pain medication at the hospital, but then nothing and I felt ok. Doing my exercises and so far (after a week) i feel good. It is a bit hard to look at the scars, but i know it was the right thing to do. My son has been an angel, he brings book to my bed so we can spend time together. Today we played almost all day, partially outside. We read "HOw to train your dragon" books for about 3 hrs!!!! My mom and husband are great helpers. And I am really excited to start doing thing s by myself, but taking it slowly :)

  • Lydiapurple
    Lydiapurple Member Posts: 1
    #12
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    Bi-lateral mastectomy

    hi there...I was diagnosed with breast cancer in my right BREAST in May 2015...I am on my 3rd treatment of chemo and I have chosen a double mastectomy..I want no chance of occurrnce in my left BREAST in the future and I only want surgery once..My surgery will be in December. I have not had to think twice for a second..yes there are chances..that I will get it in other areas but I just figure for me its..get it out..I will be going on Herceptin treatment 3 weeks after surgey till April 2016...It is a personal choice but I have friends who have family members who chose to have only the cancerous breadt removed only in later years to have it return in the other BREAST..some survived..some didn't and they regretted not having both removed...but again it is a personal decision we have to make for ourselves..Wishing you the best..

  • coral2015
    coral2015 Member Posts: 30
    #13
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    Lydiapurple said:

    Bi-lateral mastectomy

    hi there...I was diagnosed with breast cancer in my right BREAST in May 2015...I am on my 3rd treatment of chemo and I have chosen a double mastectomy..I want no chance of occurrnce in my left BREAST in the future and I only want surgery once..My surgery will be in December. I have not had to think twice for a second..yes there are chances..that I will get it in other areas but I just figure for me its..get it out..I will be going on Herceptin treatment 3 weeks after surgey till April 2016...It is a personal choice but I have friends who have family members who chose to have only the cancerous breadt removed only in later years to have it return in the other BREAST..some survived..some didn't and they regretted not having both removed...but again it is a personal decision we have to make for ourselves..Wishing you the best..

    Had surgery a week and a half

    Had surgery a week and a half ago, so far recovery has been good. No thoughts of regret, has been a little hard to look at the mirror but Im sure is normal. I wanna do everything it takes to be cancer free, enjoy my family and see my son grow up. Best wishes to you too, stay strong :)

  • Sunrunner
    Sunrunner Member Posts: 3
    edited August 2016 #14
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    Bilateral mastectomy

    I know this may not be relevant, but how does insurance cover an "elective" mastectomy for the "non cancer" breast.  I have no family history, but at age 72 I would prefer to worry about something else than the possibility of repeating this chemo stuff.

  • Happiness Republic
    Happiness Republic Member Posts: 10
    edited August 2016 #15
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    Get strategic about making the decision

    Hi, I had a double mastectomy about four years ago. I was told I only needed to remove one, but I figured why keep the other one? The way I saw it, if I had a pair of shoes that I loved, loved, loved, and I lost one, I wouldn't just keep the other one...

    That's my take on it though. Whoever told you that it's your decision is right. My advice is to think about the outcome you want, first, then make a decision that gets you closest to that outcome.

    The other thing for me is, I feel good making a decision when I know why I've made it. You can try these 5 steps that I typically use when I have to make a tough decision:

    1. Decide who's on the decision making team. Is it just you or will this decision affect someone else?
    2. Lay out your options 
    3. Consider the overall outcome of each option 
    4. Consider the pros and cons of each option
    5. Select the best solution.

    This way will take longer, but in the end you'll be happy with your decision because you evaluated your options based on your own circumstances and you know why you made your choice.

    Good luck

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