Pbmx not nipple sparing

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Papillon1
Papillon1 Member Posts: 308
edited June 2016 in Breast Reconstruction

Hello ladies,

I have been having consultations with genetic counsellors and surgeons and plastic surgeons gradually Over 2.5 years but I was always waiting for the final "Go ahead" since my mother herself was ill will secondary bc and I wanted to be able to visit her and travel whenever needed.

Sadly she passed almost 4 weeks ago so I am starting the movement towards getting this op happening. I have an appointment with the surgeon who has agreed to do the op at a time that suits me, on Thursday. Nervous but positive.

I haven't been tested for brca (they Almaty sure it won't be brca positive but that doesn't mean it's not genetic or familial)but have been given 1/4 odds and bc in my family (both sides) has always proven fatal. Since I have 3 young children I am Not prepared to take any chances. My life, my choice, my body. I want to be proactive now while I can rather than reactive later.I just hope the surgeon can convince the insurers to join in and pay some. But it won't stop me if not.


Am just sharing this is case there is anyone in a similar boat??


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  • Papillon1
    Papillon1 Member Posts: 308
    edited March 2016

    looks like we are going ahead. Skin sparing not nipple sparing, maybe end of May maybe October - depending on if my insurance will pay anything.. Am eager to get the op over with - an aesthetic scares me. But I am happy to have this choice

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  • Cathy_pa
    Cathy_pa Member Posts: 23
    edited March 2016

    wow... Just saw your post. We are in a similar boat on so many things... Here goes

    I was dxd with DCIS on 10/2015 and had a R lumpectomy with bilat reductions (I was very large breasted) and my plastics guy said we would do 3 mos of healing in hopes my nipples would recruit their own blood supply etc and maybe survive the pbmx I planned to do since I was not BRCA + but have the Chek 2 mutation that gives me a high likelihood of another cancer within the next 10 yrs. did they check you for all the known mutations or only BRCA??

    I also have 3 small kids. 12 yo son, and 7 yo identical twins. I'm 43. So yeah, I opted to be aggressive and not risk future cancer. The pros? Don't have to do radiation and tamoxifen which could have been really sucky as I am a sensitive skinned red head. Not to mention no more Mammos.

    All your Mammos have been normal?

    You go girl. Sorry I didn't see this sooner. Good luck. I am 4 weeks out from my Mastectomy tomorrow and doing ok.

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  • Cathy_pa
    Cathy_pa Member Posts: 23
    edited March 2016

    by the way, my mom died on 1/12/16 this year... Again ... Same boat- herswas not BC but what was, until 2 weeks prior, fairly stable advanced emphysema ....

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  • Papillon1
    Papillon1 Member Posts: 308
    edited March 2016

    Thanks for your reply!

    They didn't test me for anything. They only mentioned brca and said I probably wasn't that. They didn't mention any other tests existed?

    Tbh the familY tree unnerves me and I would go ahead even if I was tested for mother mutations and was negative.. There is so much the docs admit they don't know yet. And the patterns look too obvious to me to be random..

    How are you recovering? - you had the op already?

    All mammos normal so far but they do say one is quite dense. Whatever that means.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited March 2016

    Papillion, I know you've already made your decision, but I'd really like to recommend that you also have the genetic testing. It's waaaay more than just looking for BRCA genes. If your family history is significant for breast cancer, then you probably should try to find out whether you have another gene.

    My family is slam ate up with cancer, including breast, lung, and colon cancers. I had both the 5-gene "BRCA" panel, which tests the most likely genetic mutations, and the 19-gene panel, which tests for genes that can cause other types of cancer

    So glad I did. When the 5-gene panel came back we were like Woo-hoo! Let's party! But a few weeks later the other panel came back with the PALB2 mutation and Chek2 mutation--they are associated with increased rates of breast, lung, thyroid, & colon cancer, and lymphoma, all of which are in my 1st or 2nd generation family, so I will be having increased colonoscopies, chest xrays, and thyroid evaluations for the rest of my life. Woot. Not.

    PALB2 is the Pathway And Locator for BRCA2. Your level of risk , if you have the PALB2 mutation, depends upon whether you have family history and if so, the family relationship and age at which she (or he) got BC. In my case, the geneticist estimated that I had a 45+% chance of getting cancer. Foo. No party. I got a BMX instead.

    I am really glad I got the testing. For one thing, I have two adult children, one of them a girl. Since I had the 2 gene mutations, each of my kids also had a 50% chance of having one, both, or none of them. My son was negative. My 22yo daughter has PALB2--her risk is between 45 & 58%. It's a big load to put on a young adult's shoulders, but I'm glad she knows--I have an aunt that had BC at age 24!

    Good luck with your BMX. I hope it goes well. I have had a lot of complications with mine, but I"m STILL glad I did it.

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  • new__me
    new__me Member Posts: 128
    edited March 2016

    Hello sisters! I just want to say you are not alone in this and someone is always here for you. Warm hugs to all.

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    mustlovepoodles (quite funny my Phone view showed you as mustlovepoo) - I agree I should have those tests at some point. Or I shall atleast pay for my daughter to have them in 20 years (she is 3). It won't affect my decision now I don't think so I am not in a hurry..I wasn't even offered them, no one mentioned they existed (I'm in Europe. Not sure that changed anything?)


    Thanks new me.

    Have an MRI on Thursday just to make sure everything is ok pre op. I am dreading that machine!!

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  • new__me
    new__me Member Posts: 128
    edited April 2016

    Papillon1, you are brave and making a wise decision as well as giving your daughter the gift of having you in her future without the horror of bc. Good luck with the pre op stuff. Will you undergo sentinel node biopsy?

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    oh gosh, don't even know about that sentinel node biopsy.. So I assume not. Is that not just for people who have had breastcancer - to check the spread?.. I haven't had it.The MRI would show anything would it?


    Oh hope I have been given all the info! Will google!..

    Now I have a bad cough.. Hope I can lay still enough for the MRI

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  • new__me
    new__me Member Posts: 128
    edited April 2016

    i hope your cough subsides for the MRI. As for the SNB yes it is for bc patients prior to mastectomy. My surgeon required it in case she found cancer. She is my sister's surgeon too and my sistet has a very aggressive bc. I am grateful for my surgeon's tenacity. As it turned out she found a 1cm lesion of atypical ductal hyperplasia deep in my dense left breast. It would have turned malignant at some point. Scared me! Thankful i had the BMX that's for sure! : )

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    oh I am glad you did too. Sounds like a great and very thorough Doctor!

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  • GreyKat
    GreyKat Member Posts: 225
    edited April 2016

    This is just a suggestion. I've found plenty of info on prophylactic bilateral mastectomy with immediate reconstruction - but I've also done a lot of internet searching and asked my oncologists a zillion questions. You can find a lot on the FORCE website, which is geared specifically for those who are BRCA+ and have a genetic risk for breast/ovarian cancer. Their discussion boards are pretty quiet compared to here, though. On the website is a whole bunch of info about testing, options, surgery, reconstruction options, finding surgeons, ideas about getting it paid for.

    The other thing I've found helpful is, at the risk of sounding creepy, the BRCA tag on instagram. I tried searching it on a whim looking for younger women like myself and found many, many women who are, for whatever reason, documenting their PBMX journey. It has helped me immensely in actually seeing what the surgery aftermath (drains, scars, problems) looks like and how women with complications are coping - and growing stronger and recovering.



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  • katykids
    katykids Member Posts: 132
    edited April 2016

    I hate to direct anyone away from here because I have found so much valuable information here. But there is some valuable information for younger women (younger than 45) from an organization called Bright Pink. They also have a facebook group. They also have some outreach groups that meet locally. I met up with them locally before my surgery. And emailed with a Pink Pal in a situation similar to my own.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    Thank you both for those suggestions! More information is always a good thing!

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    that's exactly the sort of info I was wanting. - details on people who I can relate to, and pictures of actual people post op. Actual experiences. Thanks.

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    my MRI was ok. I was scared but it wasn't as bad as I feared. But how noisy? Oh my!!!!'

    The doc went through the results straight after (amazing!) and said there was a lot of hormonal activity in there and an oval mass, maybe a ganglion (cyst??) that isn't anything to worry about now but maybe it could become so in ten years - exactly the age I fear . So it confirms to me I am doing a good thing. If I don't have the op she wants another MRI in six months

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    ps. I moved my blog to Instagram - too much porn and idiotson tumblr!!

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    looks like 24 May will be the day

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  • new__me
    new__me Member Posts: 128
    edited April 2016

    happy to hear you have it scheduled!

    Could you please provide the link to tour blog? I just have the tumblr one. Diane

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    on Instagram I am called "prophylacticmastectomy"

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  • Papillon1
    Papillon1 Member Posts: 308
    edited June 2016

    I had my op 12 days ago and all Good so far :) recovery hasn't been as bad as I feared and I am happy with my "foobs" :) I am still called "prophylacticmastectomy" on Instagram.

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