choosing mastectomy

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suave
suave Member Posts: 189

I just went through a scare where the doctors thought I had cancer again. I had an mri seven months ago in which they saw something. Went back for the follow up and the machine lit up even more. Went for a biopsy (two in the same breast) and I knew that I wanted a mastectomy. It turned out negative which I am grateful for, but I am still considering a double mastectomy with reconstruction. I wonder if I am going crazy. I feel like some of you, always concern and always checking out my breasts. However, now my left breast is so sensitive from the biopsy. I have an appt with the surgeon for diep reconstruction. Is is crazy to do a mastectomy even though it was negative? I am sort of worry because I read how much the ladies go thru with the surgery, yet, I feel, that I want to lessen the chance of recurrence. What to do?

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  • iodine
    iodine Member Posts: 4,289
    edited November 2007

    I can only tell you about my college roomie.  Her mom died of bc when she was a kid, her 3 sisters have all had bc.  She has had numerous bx's which were neg.

    The same year I was dx'd she chose to have bilat mast.  said she was just tired of all the trips to the doc and bx.  this is one strong woman who does not worry about much, let me tell you.  She's also a nurse with many years experience.  So she knows the score.

    She's very happy with her bilat Tram. 

    Think about it for a while after you get over this last scare and then make a decision, it's what I'd do.  Don't make a decision out of fear, but make one knowing what you truly want.

  • NoH8
    NoH8 Member Posts: 2,726
    edited November 2007

    I chose a bilateral mastectomy when I was diagnosed because I knew for my own peace of mind and anxiety level, it was the best choice for me. I've never regretted it. I didn't want the roller coaster of lumps and scares and the interruptions in my life and it sounds like you're saying the same thing. I think you know yourself and what will bring you the most peace for the longest period of time.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited November 2007

    I have had several recent scares, including a birads 5 MRI that turned out to benign. Interestingly, I had the opposite reaction. As I was going through it I felt very sad that I would likely lose my breasts and afterwards very relieved that I could keep them. I don't think there is a right or wrong answer here. Get the best medical advice you can and make the best decision for you.

  • gsg
    gsg Member Posts: 3,386
    edited November 2007

    here's a good article on the subject.  for me, i felt relieved when i knew i could keep my breast and that lumpectomy & rads gave me the exact same prognosis as mastectomy...no difference.  this article addresses the mental stress of keeping something on your body that once harbored cancer...and it might apply to you and what you're feeling.  good luck to you as you make the decision that's best for you.

     http://www.mayoclinic.com/health/mastectomy-lumpectomy/BC99999/PAGE=BC00029

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited November 2007

    Wow, I thought the Mayo site was interesting but weighted toward mastectomy. For example, it portrayed mastectomy as the more aggressive approach but the studies show that survival betwen mastectomy and lumpectomy plus rads is the same. Also, it made radiation seem like the most horrendous thing on earth, "you will likely experience fatigue." About 50% of women experience fatigue, I didn't. Plus i think women need to know that even with a mastectomy it is increasingly likely you will need radiation anyway, they are using it more. Every woman I know who had a mastectomy in the last few years, even the ones who were node-negative, had radiation.



    I do think that if the fear of recurrence is going to really, really haunt you, that is an important factor to weigh.

  • Beesie
    Beesie Member Posts: 12,240
    edited November 2007

    If a mastectomy isn't needed or advised for medical reasons, then I think it's all a question of how you deal with risk and, as MOTC said, whether the fear of recurrence (or a new primary) will regularly be front and center in your mind.

    In my case, I had a single mastectomy, not by choice but because it was medically necessary.  I didn't have a bilateral despite having had 4 benign biopsies over the years on my "good" breast (2 were fibroadenomas, 1 was a fatty deposit, 1 was benign calcifications).  I want to keep my remaining breast for as long as I can.  I'm very comfortable living with my risk level (about 20% for a new primary).  And between check-ups, I honestly don't worry about whether or not I'm going to get breast cancer again.  In fact I just had my annual mammogram.  In the couple of hours before the appointment, I was a bit cranky, but that's as stressed as I get.  While I don't have the official results yet, I'm pretty sure from the reaction of the technician and the fact that I didn't get called back, that everything is fine.  But even if it wasn't, I would be able to deal with that.  I'm lucky - and unlucky - in that I've had so much experience with call-backs, cysts, biopsies, etc. that I don't let it get to me.  A few moments of worry, yes, but nothing that I can't live with.... nothing that would make it worthwhile for me to remove my breast.  It also happens that I come from a family that's had a lot of cancer - various different types of cancer.  So I don't for a minute believe that removing my remaining breast will keep me free of cancer. 

    Still, having been on this board for almost 2 years, I've come to the conclusion that I'm probably in the minority.  Many women do get very stressed at the thought of having a recurrence or getting breast cancer again.  If the stress overtakes your life for more than just the few days when you're having your 6 month or annual checks, then you need to do something about it - there's no point living in constant fear.  So if you know that you can't manage or control the fear, then perhaps having a bilateral does make sense. 

  • NoH8
    NoH8 Member Posts: 2,726
    edited November 2007
    I think of how many times I felt my breasts during the time between finding the lump and surgery--before I even knew it was cancer. I told my surgeon people would probably think I was a pervert if I kept my breasts because my hand would be on them 24/7 trying to make sure a lump didn't appear whether in public or private SurprisedWink. If I been more like you Beesie, I would have probably made a different decision.
  • suave
    suave Member Posts: 189
    edited November 2007

    Thanks to all of you for giving me your opinion. I do want the mastectomy as my former oncologist said, that when a cancer comes back we don't know how it would come back. It could be the same or worse. My big problem is that I really do not want to use any part of my body for reconstruction but I had radiation before. It is scary thinking that there is no difference between mastectomy and lumpectomy with radiation. I almost don't believe it. Those who have survived after cancer that I know of, all had mastectomy. However, this is a small group.  Thanks for letting me vent.

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited November 2007

    I am just seeing this thread. In Jan 2005 I had calcifications in my left breast biopsied showing ADH. In August 2006 I had calcifications in my right breast biopsied showing ADH. In April 2007 I had calcifications in my right breast biopsied showing DCIS. I was tired of the roller coaster ride not knowing if it was cancer of ADH. I opted for bilateral mast with expander/implant recon on June 1. If I wanted to use body tissue for recon I would have had to travel more than 100 miles to get it done and I was told by 2 surgeons that my body type would not work with the tram flap.

    My mom is a 6 yr survivor diagnosed at age 62 and her sister passed away from ovarian cancer in 1978 at age 37. I was willing to lose my breasts for some peace of mind.

    Sheila

  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2007

    Suave..I know you are trying to make a decision here. But... I know other women who have survived bc and didn't have mastectomy. The studies are clear that lumpectomy and rads is the same as a mastectomy. I can understand how it's hard to really believe that. There is a slightly higher risk of recurrence, I believe, with lumpectomy but you can get a recurrence with a mastectomy as well.

    And I had a lumpectomy and in this case, I hope the stats are right!Smile

  • suave
    suave Member Posts: 189
    edited November 2007

    Thanks all for replying. I appreciate your input as no decision is easy. I told my husband that after much praying I wish I had the faith to just stay the way it is now. He answered my that it took faith either way. He is so right as it is not easy to choose a mastectomy or not. Thanks all.

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