regret having lumpectomy

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jen1
jen1 Member Posts: 110
edited October 2015 in Not Diagnosed With a Recurrence or Metastases but Concerned

hi ladies as I have already posted on other threads I continue to have issues with my lumpectomy breast. It hurts lumps that they say is scar


tissue. I wish now I had a mastectomy. I had positive lymphnodes. Most women it seems on these boards with my path report had a mastectomy. It never was suggested by my doctors. I wonder because I was older 55 at time of diagnosis was it not considered. I know literature says survival rate the same. But if that's the case why do so many women choose mastectomy? My treatment plan was aggresive other wise. I am so worried that I did mot make the right decision.

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited June 2015

    Second guessing is not a great place to be, is it? Talk to your doctor, maybe you can still have the mastectomy. I'm sorry you are feeling this way now.... big cyber hugs!!

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited June 2015

    Hi jen1, I had a lumpectomy also. I could have had a mastectomy but I thought I would give myself one chance and see how I go. I know in the future I may have to have a mastectomy, but I decided to put my trust in my doctors and my breast care nurse who said a lumpectomy would be okay. I have also read that there is no difference in long term survival? From what I have learned, those who have had a mastectomy do it for peace of mind! I do think it is a very personal choice and like Jenwith4kids said, maybe it's not too late if you are feeling this way, to have a mastectomy?

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited June 2015

    hi Jen1 - my diagnosis is similar to your's. I had a lumpectomy and my tumor was 2.8cm! I am happy with my decision. Nobody even mentioned masectomy to me. I finally asked my MO if I should have had one and she said NO. I asked her because like you I saw so many women on here getting masectomies and thought maybe I made the wrong choice too. Now a year later I am glad I chose a lumpectomy.

    Nancy

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

    I had a mastectomy because of 2 tumors and a suspicious area that turned out to be nothing. They were unable to save skin or nipple. Pathology indicated only the two small tumors were cancer idc and ilc.

    My DIEP turned out good and I didn't need radiation. I don't believe lumpectomy and radiation is any riskier than mastectomy as far as recurrence.

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  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    If you are unhappy with your decision see your surgeon and duscuss your fears.  If  keeping your breast is causing you stress and you want a mastectomy you can still get one and insurance is required to pay for it.

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  • jen1
    jen1 Member Posts: 110
    edited June 2015

    Thank you ladies for your responses.

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  • jen1
    jen1 Member Posts: 110
    edited June 2015
      • Thank you Kayb I do have lymphadema. In addition frozen shoulder. My insurance won't let me se my lymphadema pt. I am seeing another pt who is not a lymphadema specialist. Just so confused.
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  • jen1
    jen1 Member Posts: 110
    edited June 2015

    What concens me too is my node involve.ent. Many women on this board have had masectomy with no node involvement. When I was diagnosed things happened so fast I did not have time to think. I just followed my doctors advise I did not ask questions. I co to used to work through my treat.ent. It is only now that I am learning more .

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  • sandilee
    sandilee Member Posts: 1,843
    edited June 2015

    jen, I hope I can make you feel better. My onc recommended a lumpectomy, but I choose a mastectomy, and I wish I had just gotten a lumpectomy and radiation! My cancer did come back, even with the mastectomy. I mainly chose it because I was afraid of radiation. Maybe if I'd had the radiation (not recommended with the mast) it would have killed the few cells. At least I would not be lopsided, which you think isn't an issue but it gets very tiresome having to deal with it every time you put on clothes. And you always have to wear a bra, or look odd.

    Your chances of distant recurrence do not increase with lumpectomy. I've recently seen studies that say lumpectomy with radiation actually has a better survival rate than mastectomy alone. I do hope your scar tissue heals soon so it no longer bothers you. Take your hormonal treatments on schedule and ask for a bone scan or MRI three years out from diagnosis for peace of mind. Best wishes!



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  • talbrig13
    talbrig13 Member Posts: 488
    edited October 2015

    I too am STILL questioning my lumpectomy decision after almost 9 years (done in Dec 2006). Even after I had another biopsy(benign scar tissue) in 2010. But I really started to question it in 2012 when I had to have biopsies on 2 different spots (scar tissue again and fat necrosis). Well in March of this year, they found changes on my mammo...rad onc advised repeating the mammo in 6 months, which we did. Had the repeat mammo(3D) and still more changes. Which led to ultrasound, MRI and yet another biopsy....showing yet more scar tissue and necrosis. When, for heavens sake, will I stop developing more scar tissue?? Is this going to go on every couple years forever?? To top it off, I had a reduction in 2008 on the opposite breast as a symmetry procedure. Now, after 4 areas biopsied and tissue taken, I am now lopsided again.

    Every biopsy, with the ultrasounds and the interminable waiting are gut wrenching and nerve wracking. No one seems to understand. I feel like I want to have a mastectomy, but wonder about scar tissue developing from the surgery ....the rad onc tells me my scar tissue is from radiation. So would the different type of scarring look different on future mammos? Would insurance even pay for such a surgery? Am I over-reacting? By the way, I had an Oncotype score of 47, which is high for recurrence risk.

    I cannot find any type of literature on this type of mastectomy....is it prophylactic or salvage?

    Any thoughts?

    Thanks for listening

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