Looking for support

Options
willowiris
willowiris Member Posts: 8
edited May 2016 in Breast Reconstruction

I am new here and am looking for support to help get me through my upcoming surgery. I have elected to get a bilateral prophylactic straight to implant mastectomy. I am just waiting on the date from my surgeons.

I have my husband and a few friends, but no parents or family for support. I don't even know what my questions are right now or how exactly I am feeling. I am usually the one worrying about others or making sure they are okay with what is happening, but I am really feeling as if I need some people who understand to talk to.


Any thoughts or words of support would be greatly appreciated. Thanks!

· Share on FacebookShare on Twitter

Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    Welcome willowiris - I had a PBM four years ago, best decision I ever made. I had TEs and then implants. There are several threads for direct to implant reconstruction that should be helpful to you. It is a scary thing contemplating this type of surgery. We do understand and are here to help. My surgery unfortunately found a small IDC, but my case is not the norm, and while possible, is not meant to scare you.

    What led you to this decision? What questions can I help with?

    · Share on FacebookShare on Twitter
  • willowiris
    willowiris Member Posts: 8
    edited May 2016

    Thanks so much!

    I have been having mammograms and MRIs for the last 10 years and I find the whole process stressful and anxiety producing. This last time, I thought I found something and had to go through extensive testing to find out it wasn't anything. The stress got to me and I had had enough. I am going to be 35 and I know I am not having any other children, so I felt it was best to get it done sooner rather than later. My mother lost her battle at age 31, two years after my twin brother and I were born. Her mother and grandmother both died before 50. On my father's side, there are at least 3 cases of breast cancer, if not more. I am just done with this whole process. I feel that if I can do something to reduce my risk and be here for my son, then I am going to do that. I am scared especially when I envision myself at the hospital getting ready for the surgery.

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    willow iris, that is indeed a big decision. There are many members here who have made the same decision. Have your surgeons recommended any genetic testing first? We're all here for you!


    · Share on FacebookShare on Twitter
  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    willow - I hear you! My mother passed of BC at 29, when I was just 5. Like you, I know first hand what it feels like to grow up without a mother. It leaves a hole that can never be filled. My greatest wish when I was doing all the screening was to be around long enough to raise my kids. I understand where you are coming from. That damn BC gorilla is hanging around your neck every day.

    Many in my family thought I was being too extreme. Of course they didn't have to live with the fear and couldn't really understand. The time leading up to surgery was disconcerting, more about the actual surgery and never did I second guess my decision to have surgery. My biggest question

    was about recon/no recon , and if recon what type. In the end the surgery was fine. The best feeling was waking up from surgery "knowing" I had outrun the beast. My tissue expanders were filled to 200cc at surgery, and my first thoughts when I saw the new me was "looks pretty good."

    You are much too young to have to deal with all this, but you are doing an extraordinary job. Please let us know how you are doing. Feel free to private message me, too, if you would like.

    My heart goes out to you. Sending you a gentle hug.

    · Share on FacebookShare on Twitter
  • willowiris
    willowiris Member Posts: 8
    edited May 2016

    farmerlucy- thanks for the words of encouragement! I find some comfort in hearing other's stories and that they were successful.


    I had genetic testing done about 10 years ago for BRCA1&2 only- it came back negative. With the high incidents of BC in my family, the course of action was to do mammograms and MRIs. I just can't handle the anxiety and stress of it all anymore. I know I want to get it done but I am scared and feel I have little support beyond a couple of friends. My husband is trying to be supportive, but I feel he is focusing on how it will impact him more than what it is I am going through. I fear that he will not be able to handle the aftermath of the surgery. I want to get the recon done at the same time. Strangely, I am really not too concerned with how they look afterwards. My breasts have been such a negative to me over the years for many reasons beyond BC, that I don't feel super attached to them. I want to have recon done so that I can still feel feminine and have breasts, but underneath the clothes and such, I am not worried if they look a little funky.


    My plastic surgeon showed me a few after photos where they looked good of there were a few issues and sometimes people had other surgeries to fix issues. Did others here need other surgeries or did the recon look good enough to be acceptable?


    I am still debating on nipple sparing or nipple tattoo. I think I want the sparing but there is that added worry that the little tissue left over still has the chance to develop cancer. I am not sure if I want to take that chance or not.

    · Share on FacebookShare on Twitter
  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    I am much older that you, but I decided on reconstruction in great part from persuasion from my family. Mine look really good. Seriously. I did 3D nipple tattoos from Vinnie Myer. They are the best part of all of this. Exbrxgrl has a thread about one step recon, I couldn't find the long one but I know she could give you some guidance.

    I think nipple sparing has come a long way, so maybe talk to your surgeon about his technique.

    Vinnie Myers site has a lot of pictures of recon and it is a good place to see results. Also Whippetmom's thread for breast implant sizing is amazing. It is not going to feel the same, but you do adjust, and the big thing is that the threat is mitigated.

    I did the expanded testing from Color Genomics - 19 genes for $249. My biggest concern is my daughter who is 26. She has not started screening, and part of me wants her to stall the screening angst for a few more years.

    Hope you have a great day.

    · Share on FacebookShare on Twitter
  • willowiris
    willowiris Member Posts: 8
    edited May 2016

    I started at 25 and sometimes wish I had waited to get on this train- maybe I wouldn't be so stressed about it.


    I looked at Vinnie Myers site- amazing work!


    I know they won't feel the same, but part of me is a little excited about a change in size and such.


    Just got the call from my doctor to set up the timeline for surgery- looking like the first of June. Now I just wait for the appointments to start! I will miss the end of the school year with my students, but I think this is so much more important.

    Have a great day as well. Talking to others is really helping.

    · Share on FacebookShare on Twitter

Categories