Am I over reacting

BoosilhenBoosilhen Hahndorf, SAMember Posts: 6
edited September 2016 in Newly diagnosed
ever since my aunt had a 10 year battle with breast cancer in the 90s which took her life, I have always believed I would opt for double mastectomy if I was ever diagnosed. That day has come. Tests are completed and Surgery options will be discussed with the surgeon on Monday. Everything I read indicates a lumpectomy for my cancer - stage 2 invasive ductal carcinoma - no sign of it in lymph nodes from first ultrasound. My cousin (said Aunts daughter) had same cancer, went down lumpectomy route and cancer returned a couple of years later and she had mastectomy. I don't want to risk it. I still feel strongly that I want double mastectomy. Am I over reacting? Surely it will be my choice?  I am 66 and am not worried about losing my breasts, although I do worry about my husband, although I am sure he will cope - we are very solid. I would really appreciate hearing from others.
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Comments

  • primekprimek Broken HillMember Posts: 3,182
    I asked for a mastectomy and stated my concern. After discussing family risks ...and you have 2 at least....my surgeon even suggested a bilateral. ..which I had with immediate reconstruction. Mine was stage 1. I still await gene testing but do not regret my decision even if comes back negative. Hope all goes well. Kath x
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 449
    It absolutely is your choice.

    It's your body. You get the tell them what is going to happen, not the other way around.

    I'd consider that while the risk of recurrence is there, mastectomy takes much longer to heal from and can leave you with much more drastic complications. It can all be quite traumatic.

    This really is a matter of what you want, and what makes you feel safe. :heart:
  • DaisyMarigoldDaisyMarigold Member Posts: 312
    I don't think you're over reacting. I was diagnosed 3 years ago, low risk, small tumour, no nodes, stage 1, but I chose a single mastectomy and reconstruction. No family history. I have yearly scans, and my anxiety levels skyrocket a couple of months before the scans. We all live with the shadow of recurrence sitting on our shoulders, and i think anything you can do to reduce that fear is a good thing. You can only go with your gut instinct and what you feel is right for you. Don't let anyone dissuade you from your decision, particularly not the medicos. They are concerned with medical outcomes, not emotional outcomes, as I have realised over the past 3 years. Are you planning reconstruction? I had immediate implants, both breasts to even things up. Yes, it's affected my sex life because my mastectomy nipple has absolutely no feeling in it, and that has affected my libido/responses during foreplay. You and your husband will both have to adapt to the changes, but you say your relationship is strong. But ultimately it's about reducing your fear and anxiety. Put that first, then work around the rest. Best of luck, and I really feel for you.
  • primekprimek Broken HillMember Posts: 3,182
    Just wanted to add that ask your Dr to explain both procedures, risks etc. One of the other reasons I chose mastectomy was that I had very dense breast tissue... so I found out. My cancer was undetected by mammogram because of this. Statistics though show no difference in outcomes with mastectony or lumpectomy if appropriate if followed by radiation. But it is your choice.
  • Jennifer1982Jennifer1982 Member Posts: 22
    Sorry to hear the dreaded day has arrived.

    I can only speak from my own experience. I had a bilateral mastectomy two weeks ago, although lumpectomy was on the table too. I  had dcis, but in both breasts. I felt that there would be issues with margins with lumpectomy and didn't want to worry about that. I am healing well so far. I had never had surgery before, so it was a full on process. But I don't regret it at all.

    Our bodies change as we age anyway, this is just more dramatic. I lost my nipples too. I just had a chat with my husband about my non-nipples. We are already working on loving my new body together and I still have some bandages.

    Take care,
    Jen


  • rowdyrowdy Member Posts: 1,160
    Good morning ask all the questions and make a decision that is right for you. I had dcis and had 2 lumpectomy and when they couldn't get clear margins I had a mastectomy,. In hindsight I wish they had have suggested mastectomy first. It was  hard losing a part of my body but now I'm used to my new look. I have had immediate reconstruction good luck with your choice. Take a list with you when you go with the positves and the negatives
  • Hopes_and_DreamsHopes_and_Dreams Gold CoastMember Posts: 644
    You have to do what is right for you ask all the questions you need to be able to make an informed decision.  I had a 1.3cm IDC (ended up being grade 1, 2 sentinel nodes clear) and was given the option of lumpectomy or nipple sparing mastectomy.  I am small breasted so a lumpectomy would not have been a good cosmetic option and there was a danger that the margins may not be cleared.   I am happy that I chose a mastectomy (with immediate implant reconstruction to match the other side).  6 weeks on I need no further treatment other than Arimidex, am healing well and have the peace of mind that another cancer will not pop up in the same breast.  Yes, my new breast feels and looks a bit different but it is now part of the new me.
    Sending my very best wishes to you
    Jane xx
  • melclaritymelclarity Member Posts: 2,422
    Hi!!

    I believe it will be your choice, just reading your post...I'm in the same boat as in...I was diagnosed 2011, had a lumpectomy, radiation and tamoxifen 4yrs and was told lumpectomy was more than enough. I had a recurrence last year at the 4yr mark, 3rd stage aggressive and again lumpectomy quite large, lymph nodes clear and told it was enough. Since finishing chemo in December..now I am told to have a Mastectomy. Its made me furious as maybe if I had that 5yrs ago I wouldnt have gone through a recurrence. No crystal ball unfortunately. So now I am facing a Mastectomy early next year just the left side. Ive never had any trouble in the right and the recurrence came back in the scar tissue of the previous lumpectomy??? really!!!!! Hmmm makes you wonder doesn't it??

    Melinda 
  • MelhayMelhay Member Posts: 157
    It's absolutely your choice.

    I've just recently had my 3rd surgery in 13mths due to breast cancer in both breasts (diagnosed at different times) & am awaiting results - again!

    Both times recommended surgery was lumpectomy - last one however found a large area of undetected high grade DCIS in the surrounding breast tissue of the tumour so re-excision was required. 

    When I was first diagnosed I never considered having a mastectomy because I thought it was too drastic - but now I can totally understand why someone would choose this option :) 

    If you do choose to go down the mastectomy path just be sure to allow yourself enough time to research, find the right surgeon & ask questions so you can make an informed choice. 

    Mel xx

     
  • Lush16Lush16 Member Posts: 9
    Hello.  I am about to have surgery next week & have chosen to have a mastectomy with immediate reconstruction.  I have worried about whether I was being too extreme as well.  I have read everything I could get my hands on & have settled on my initial choice. The doctors said I had a choice of mastectomy or lumpectomy & I've had to go with what will give me best peace of mind. 
  • LightieLightie Member Posts: 1
    Hi, have just become a member. my surgery is also scheduled for next week. I have followed the advice of the surgeon and opted for a lumpectomy. I feel comfortable with my decision. I think it comes down to what your instinct tells you is the right thing to do. Good luck with whatever you choose.
  • BoosilhenBoosilhen Hahndorf, SAMember Posts: 6
    Thank you all so very much for your responses. It has meant a great deal to me to hear of your experiences. I saw my surgeon again today and after discussing both options I have chosen to go with my original decision of a bilateral mastectomy which will take place next week. It will certainly give me the best peace of mind and the surgeon is happy that it is an appropriate option for me in my circumstances. I have chosen to wait for reconstruction as I can't have implants and the surgeon and I both feel that the other options might be a bit much all in one surgery. For those of you having surgery soon, good luck, my thoughts will be with you. For everyone else I hope your journeys remain positive ones. Hugs to all.
  • melclaritymelclarity Member Posts: 2,422
    Boosilhen - All the best for the surgery! So glad you are settled!

    Ladies just remember everyones circumstances are so very different, what seems best for one isnt for the other. I actually don't regret the past 5yrs and 2 lumpectomies and for me my Breast Surgeon was so honest and he said in most cases a Lumpectomy is as equivalent and effective as a Mastectomy. Eventhough I am now facing a Mastectomy, I believe the right decisions were made at the right time. So ladies trust your own instincts you will absolutely know what is right for you.

    Hugs to all having surgery!! Amazing amazing women! xo Melinda 
  • BoosilhenBoosilhen Hahndorf, SAMember Posts: 6
    Quick update from hospital. Bilateral mastectomy completed, feeling good. Received pathology results today. No cancer in lymph nodes removed with left breast mastectomy - 2.5 cm invasive tumour confirmed. Surprise result was that the right breast - collateral damage - also had a previously undetected 4mm invasive carcinoma. Praise be that I had made the right decision to remove both breasts. Just waiting now to find out treatment options.
  • socodasocoda LeumeahMember Posts: 1,457
    Hi Boosilhen, Congratulations on having had your surgery and also what a relief for you to have confirmed that you certainly did the right thing in choosing bilateral mastectomy!!! Fantastic!!! Let us know road you are heading down treatment wise. All the best Xx Cath
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