Anxious about nipple-sparing PBM

Maud_Leb
Maud_Leb Member Posts: 2
edited June 2014 in High Risk for Breast Cancer


Hi,



I am scheduled to have a nipple-sparing pbm with expanders on December 17, and my plastic surgeon approximates that we might be able to go to implants in March next year. I was found to have a BRCA2 mutation in June of this past year. At this point I'm about a week and a half out and I'm somewhat overcome with anxiety. My issue is that when I try to find blogs and youtube videos of people who have experienced the surgery that I'm about to go through, the majority appear to have had some complication- infections of the expanders or the implants, loss of the nipple, etc. I have also searched through academic papers and have asked my plastic surgeon about the chances of various or any complications happening, and both he and academic sources say that complication rates are only around 20%, but I'm just worried, because it is so rare to find examples online of people who have not had any sort of complication. I am prepared for the pain and the temporarily-limited abilities associated with the surgery, but for some reason it is the unforseeable complications that are making me anxious.



So I'm hoping that if anyone has experience with this sort of surgery can you please tell me how your experience went. Was it successful, are you happy with the results?



Thank you!


PS, I hope no one minds, I also posted this message in the FORCE boards.

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Comments

  • Bibo
    Bibo Member Posts: 4
    edited December 2013


    I have not I opted for non- nipple sparing....however, my doc and i had a long talk about this...and he had a high success rate with nipple sparing procedures...My family history was too strong and I was scared to take a chance that way....but what I wanted to say was that I talked to my doc and he assured me that I could change my mind the day of the surgery and he would do nipple sparing...so if your doc is willing to get it authorized that way with your insurance, it could be that you can change your mind the day of surgery if you desire it...I wish you the best. Ask your doc about how many successful surgeries they have done personally...sometimes the web is a bit overkill on risk factors.

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited December 2013


    I had a nipple/skin sparing PBMX in June of this year. Tissue expanders were placed at that time and in October I exchanged for silicone implants. I can honestly say I have had no complications whatsoever. After my initial surgery, I was back to work within 2 weeks and back to "normal" activity, including running, within 6 weeks. My exchange surgery was almost a non-event compared to the first - I was back to work in 4 days and back to "normal" activity within 3 weeks.


    Right now I feel good - I am still very aware of the implants, but not in a bad way. They are different, and I am adjusting to my new normal. Overall I like them - I think they came out looking pretty good. I still have scarring that hasn't really faded yet and my PS says it will take about a year for everything to settle. I have some rippling - more on one side than the other. My PS seems to think it will improve over time. But in clothes I think they look great - I'm happy with the size, the symmetry and overall appearance. So far, so good here!


    It's usually easier to find horror-stories than success stories. I wish you the best with your surgery!

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  • Maud_Leb
    Maud_Leb Member Posts: 2
    edited December 2013


    Thank you both for writing back. I guess in general maybe people feel more of a need to warn someone when something goes wrong, so it's just easier to find stories about when things go wrong rather than when they go right. And I've definitely seen some pictures where thing look amazing, scars have faded to just faint lines and the shape of everything looks great. But I feel like that's not something that I can expect, although I can hope for it.


    Sarahjane- you mentioned that you were able to start running after both surgeries fairly quickly. Does that feel any different from presurgery running? My PS seemed to suggest staying away from "bouncing" activities for several months, so I was planning on getting an exercise bike at some point. Running is the thing that I want to get back to quickly though, it makes me feel better than just about anything else. Several videos I've watched have involved people using a bizarre breathing apparatus that seems to help them focus on taking deep breaths that I guess would have the ribcage push out against the surgical areas- did you have trouble taking deep breaths soon after surgery?

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2013


    I had a PBM almost two years ago. I had no issues whatsoever with the surgery or with healing. I was out of the hospital the next morning. The exchange was five months later. I had no issues with that surgery either. I did exactly what my PS told me to do. She was a real stickler. I had two drains both times.

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited December 2013


    After my first surgery, I had to "prove" to the folks from anesthesia that I could take deep breaths by breathing in to a thing that looked like a measuring cup with a tube. They said it was because with surgery involving the chest, sometimes people would take more shallow breaths due to pain. They sent the thing home with me but I never used it after I was discharged from the hospital. To be honest, when I woke up from my PBMX it felt like a grenade had gone off in my chest. I was unprepared for that level of pain. I don't want to scare you, but it was pretty tough for a week or so. It improved considerably after that - especially once the drains came out. (I had 4)


    The only thing I was cautioned about with running was to get a good bra and to make sure the band was tight. He said that with natural breasts, if you have insufficient support during impact exercises, you generally get pain at the tops of the breasts, but with implants, the pain is at the bottom (where the band is). He said I wouldn't damage anything related to the reconstruction, but that I'd be more comfortable with a good, supportive bra worn with the band tight and high - almost tucked under the fold. He's right. I don't have any pain during exercise. As for whether running feels any different - yes. A lot less bouncing. I was small breasted before, but my "condition" caused rapid growth, so I was pretty bouncy for a while. Other than that, no difference. With the TEs I could have run topless - believe me, they were so firm they were not going anywhere!

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited December 2013


    Hi Maud,


    I had a pbmx August 2012. I was 46 years old at the time of surgery. I was the 20% who had complications after surgery. I had a large hematoma under my left nipple. It was the size of an egg. I developed an infection and had a tiny hole (wound) that would not heal. My pbmx surgery was August 7th. I had emergency surgery to close the wound on August 24th. The hematoma and infection proved to be too much on my left side and my nipple became necrotic Four days later on August 28th I awoke in the recovery room with my husband holding my hand telling me that my nipple was gone. I know this sounds scary and awful. I went into surgery knowing the risks and complications that could possibly arise. The surgery was painful and my recovery was longer then expected. I had a choice; be angry that I lost my nipple or accept it. I chose the latter :). I now boost two beautiful breasts; one with a nipple and the other my Barbie boob!! My exchange surgery was January 21st.


    On November 8th of this year I had prophylactic oopherectomy. I feel amazing! I have absolutely no regrets with either surgery! I am BRCA negative.


    Footnote: LCIS was found in my final pathology. It was never detected in MRI or mammography. I was on the surveillance roller coaster since the age of 28 due to my extensive family history.


    Please feel free to pm me. This is so doable. :)


    Elise

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  • odie16
    odie16 Member Posts: 1,882
    edited December 2013

    Maud, I had nipple sparing skin sparing bilateral mastectomy in September 2011 and had my exchange surgery 8 weeks later. Unfortunately mine was not a pbmx but I wanted to share so you know there are success stories out there. I am extremely pleased with my outcome and feel blessed to have breezed thru the process comparatively. Wishing you the best as well.

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  • Faith_Hope_Love
    Faith_Hope_Love Member Posts: 2
    edited December 2013


    Maud,


    I am in a very similar situation. I am having Bilateral Mast w/Nipple Sparing Reconstruction on the 20th. No expanders, just straight to implant. My surgeon showed me me the exact #'s of every specific complication in relation to how many surgeries he has performed. This was incredibly reassuring and eased my anxiety as his #'s were very low. I think finding an excellent surgeon is key. Do you feel like youre in the hands of an excellent surgeon?

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited December 2013


    Best of luck with your surgery tomorrow Maud. Thinking of you....

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  • sabihah
    sabihah Member Posts: 65
    edited December 2013


    Yes, best wishes!

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