Who has had a mastectomy for prevention?

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goforhope2011
goforhope2011 Member Posts: 47
edited June 2014 in Living Without Reconstruction After a Mastectomy

I can not find any thread on this and would like to know if any of you have had a mastectomy on the other breast for prevention of cancer coming back.  I am not having success with meds--too many SEs and would like some advice as to what you have done?  And, has it helped in your remission?

Thank you , Hope

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2012

    I was a lumpectomy candidate but elected BMX due to many years of dense, lumpy breasts with many cysts.  Turned out I had ADH/ALH in the "prophy" breast so I feel it was a wise decision.  Which meds are you referring to?  Even with a BMX I required chemo/Herceptin and hormonal therapy.  As far as remission, I am currently NED but can't gauge success unless or until I have a recurrence.

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  • Mallory107
    Mallory107 Member Posts: 223
    edited March 2012

    I am having one on MondaySmile  I also do not want to deal with the meds and want to give myself better odds that I will not get BC in the other breast.  Since the UMX went so well I thought that this was the best route. 

    If you are not finding anything on your board search try Prophylactic MX or Prophy MX or PMX-these are what I havemostly seen this referred as.

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  • RebzAmy
    RebzAmy Member Posts: 322
    edited March 2012

    I had preventative surgery to the unaffected side which was lumpy and really worried me. I also have a family history of breast cancer. I said right from the start of my treatment I wanted a double mastectomy and my medical team agreed to do this but after I'd finished treatment. I have also had a reconstruction and am so pleased I made this decision.

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  • brcapooh
    brcapooh Member Posts: 15
    edited March 2012

    I had a lumpectomy for DCIS but the pathology confirmed a tumor embedded inside the DCIS that was not detected by mammogram, ultrasound or MRI. Due to a history of lumps, cysts and dense breast tissues, I opted for prophylactic BMX. It turns out, one of my breast had another tumor and several foci of DCIS, none of which had shown up on any tests. So I was glad I made that decision. Good luck!

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  • prncsviolet
    prncsviolet Member Posts: 48
    edited March 2012

    I had a BMX with DIEP flap done 9 weeks ago. I did a lot of research on my options and felt this was my best route. I do have BC in my family, I lost a grandmother to it and also have an aunt who had a BMX as well. I was BRCA negative but still felt it was the best choice for me. Thankfully the biopsy came back finding no other cancer. All in all though I still feel it was the best decision for me and now I have lessoned my chances to a 1-2% now. Im only 41 and didn't want to live everyday wondering if tomorrow would be the day. I also did not want to go thru the biopsy and everything everytime. If you have any questions...

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  • goforhope2011
    goforhope2011 Member Posts: 47
    edited March 2012

    Thank you all, so very much.  I really do not want to continue with meds.  My friend who has 'C' in the family said her sister went ahead and had the other breast taken out.  I am so, very tired of meds; they have given me until May to decide.  That is without psy help!  Normally they offer that. Guess that's why I'm here on this site!!!  See my ONC in about 3 weeks and will discuss this option.  It means another summer lost, but maybe some time gained!

     My aunt had BC and tamoxifen treatment for 5 years, after nothing, no treatement,  She went out with total mets.  I'd just like to see my son married--if that is possible.  But grandfather clock is ticking--am 60+. Wait and see.  I have a lot of trust!!

    Hugs, and blessings, Hope

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  • Natm71
    Natm71 Member Posts: 13
    edited March 2012

    I am 41 newly diagnosed! I have history of lumps and dense breast tissue too. I I plan to have BMX but wanted to know if people had experience with surgery and had before or after chemo? I just want the stuff out! And then chemo? But wanted to hear about pros and cons of each! More afraid of chemo than I am of surgery right now! However, emotions change hour by hour? Advice please.

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  • prncsviolet
    prncsviolet Member Posts: 48
    edited March 2012

    I'm 41 also and had the BMX with DIEP flap reconstruction. I think it was the best thing I did. I was lucky and didn't need chemo though. The surgery itself was 11 1/2 hours and I was in the hospital 4 nights. I'm about 9 1/2 wks out now. I went back to work after 8 weeks. The recup has been a little rough especially the first few weeks but each day gets better. My only real complaint is I can't seem to get my energy level back. Always very tired....

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  • Natm71
    Natm71 Member Posts: 13
    edited March 2012

    Thanks for the information! Why no chemo? I was really hoping I did not have to do it? I am going to onco tomorrow to discuss all the options?

    Hope you are feeling more energetic tis week!!

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  • prncsviolet
    prncsviolet Member Posts: 48
    edited March 2012

    I didn't need chemo because I had DCIS and thankfully when they did the biopsy they found nothing else. Some people think I went to a bigger extreme than I needed to but honestly there is nothing about this disease I care to ever think about again. If this decision has made that possible than I have no doubt it was the right one for me. 

    Good luck at your doctor appointment tomorrow, please keep me updated!!! 

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  • msippiqueen
    msippiqueen Member Posts: 191
    edited March 2012

    Going to the extreme...how often this image is presented when a mastectomy is selected over other treatments, as it was to Violet? All the time. Exclusive to the mastectomy option.



    Continual call backs, testing, biopsies and and watchful waiting warrants that language, but only from those who presume they know best regarding another life. There is no room for bias. Zip it, influence peddlers.



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  • prncsviolet
    prncsviolet Member Posts: 48
    edited March 2012

    Thank you msipplqueen I completely agree!!!

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  • lizzyaz
    lizzyaz Member Posts: 18
    edited March 2012

    Me too - thanks msippiqueen - I was talked out of PBMX 8 years ago by onc and BS (talked out of Tamox too!) but now after another scare (turned out to be a B9 cyst) I am ready to fight for it. I really want the Tram Flap procedure but since it is not offered in my state will prob do the DEIP even though after reading that thread it looks like it can be a scary recovery!

    Edited to say that I just realized that this is the "living without recon" thread so sorry if I spoke up about recon in the wrong place!! 

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  • Del11
    Del11 Member Posts: 944
    edited March 2012

    lizzyaz-  I just wanted to clarify DIEP vs. TRAM... they are essentially the same procedure, except that TRAM takes your muscle along with your ab tissue.  It is a less desirable and more painful procedure/recovery because of that. DIEP takes only tissue, no muscle.

    Is it possible you mean you want DIEP but can only find TRAM offered in your state?  DIEP is a more modern procedure than TRAM and is considered the "gold standard", however because it requires an experienced microsurgeon it's usually more difficult to find surgeons who do DIEP often.

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  • lizzyaz
    lizzyaz Member Posts: 18
    edited March 2012

    Oops - posting before work and i must've been half asleep because I meant to say TUG not TRAM Flap procedure. It sounds like using the tissue/muscle from the inner thigh is an easier recovery than using the stomach tissue. I should prob just be glad to have a choice between 2 DEIP surgeons here in Az (one at Mayo Clinic) but since I have plenty of inner thigh tissue to spare I would like to be able to put it to use Wink

    jeskachi - thanks so much for your reply and checking for my clarity - would really hate to get this one wrong, huh?? 

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  • rianne2580
    rianne2580 Member Posts: 191
    edited May 2012

    prncsviolet,

    Did your surgeon explain why they took nodes when you only had DCIS? I'm wondering because I really did not want any nodes taken, I understand I had an invasive very small tumor. But I lived with DCIS for 17 years before I allowed surgery to be done. Just inquiring.

    Rainne

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  • River_Rat
    River_Rat Member Posts: 1,724
    edited May 2012

    Rainne, I'm not trying to answer for prncsviolet but just thought my experience might help explain one possible reason for nodes to be removed.  My DCIS was high grade, comedo and noted as appearing very aggressive from the original stereotactic biopsy so my PCP wanted me to have sentinel node biopsy since I had decided on mastectomy.  She explained that it couldn't be done after mastectomy and that there was a high chance that I might have some microinvasions.  The mastectomy didn't turn up any microinvasions but I do rest easier for having had that done.

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  • Momine
    Momine Member Posts: 7,859
    edited May 2012

    I had a BMX although cancer had only been DXed on the right. So the left one was intended to be prophylactic. As it turned out, there was DCIS in the left one as well, although stage 0.



    My reason was that I did not want to face endless scans, x-rays, biopsies etc. Nor did I want to deal with the whole matching issue, either with prosthetics or surgery. I figured that if I would need foobs, better start from "scratch" so to speak.

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  • franie
    franie Member Posts: 73
    edited May 2012

    I had a BMX as my breast were fibrocystic and I have a family history of BC. I was a DDD and it was not an easy decision even though I know it was the right one.

      

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