Preventative Prophylactic bilateral mastectomy and recon

Public Archive
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Hi there,

I was hoping to get any info or feedback to help with a decision I need to make.

I have been going through the process to have a Bilateral Prophylactic mastecomy and reconsruction due to a history of BC in my family. My mother died 20 years ago (41 years old) and my sister died 5 years ago (35 years old) both of bc, and after a lengthy battle am now seeing the most wonderful and supportive team of people from the Royal Marsden. I have two senario’s to think about- reconsruction with implants initially, due to shorter recovery period (I have a 16 month old to look after) then Diep flap reconstrucion further down the line once I have finished my family. Or Diep flap reconstruction straight off.

recon with Implant
Has anyone had any significant problems with Implant recon? Can this be a longer term option if I am happier with results? How long did recovery take?

recon with Diep flap
Has anyone had this procedure and gone on to have a child? If so what happened to your stomach? Has the result of a Diep recon been positive? How long did recovery take?

I am due to see my plastic surgeon again next week and will need to have an idea which route to go down, so any feedback from anyone would be really helpful. I am 31 years.

Thank you for reading
Carol

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Hi Carol

Welcome to the forums, Breast Cancer Care have published a booklet about breast reconstruction which you may find helpful to read, it also contains information about our other support services including our helpline which you are welcome to call to talk about the decision you are trying to make. The booklet is available via the following link:

breastcancercare.org.uk/docs/breast_reconstruction_dec06_web_0.pdf

Best wishes

Lucy
Moderator
Breast Cancer Care

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I have had bilateral prophylactic (risk reducing) mastectomy, over 8 years now, however, I got imediate reconstruction using tissue expander to stretch the skin to allow implant. I got the tissue expander inflated each month with saline, to stretch the skin, as I had small breasts and am small framed. However, they became hard, and did not move, it looked like two tennis balls on my chest, however, I got this removed and replaced with implants, and they were fine,. But around 3 years ago, I woke up one morning with a feeling of an elephant sitting on my chest, and the breasts were burning up, I went to the GP, and they sent me to hospital, and I had a severe infection in the implants (which is one of the risks on having implants, they are foreign bodies in you). I got them urgently removed, and had to wait 6 months before they could be put back in, to allow the infection to go.

Anyway, I was fitted with prosthesis to wear meantime, until I could have further reconstruction, they have offered me reconstruction using my abdominal muscles, but since I have not much there with being slim framed, it wouldnt be the same level of depth or cup size that I originally had. They have also said that they could use the thigh or bum areas, but I thought about it and I dont want to have more operations, as it would be more than one area needing to heal and I didnt want further problems.

I have now said no to any further reconstructions, as I got fitted with the best prosthesis I could have hoped for, and well they changed my life completely. I have even gone up a cup size which is great, and once I stick them on, there is no stopping me. I just need to find lingerie that is sexy, but that is another story,

I do think you need to read all the publications about the risks, and how the outcome could be, as well as on here speak to ladies that have had various reconstructions, and get as much information as possible, to make a list of questions to take to your consultant, and make sure you are prepared for any risks, or disappointments on the outcome of your operation.

I must say though please ask as many questions as possible, as the more you are prepared for the operation, the more you will be understanding on any areas that may crop up. However, I didnt have the same resources when I got my operation 8 years ago, as there is on offer now, hence why I became a Support Volunteer so that there are support for prophylactic risk reducing preventative mastectomies.

Hope all goes well, and if there is any other questions you want to ask, then do so and all of us on here including the moderator and nurse will all help as best we can to reassure you and make you relax.

take care
C xxx

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Thank you Lucy and C for responding.

I want to be as prepared as I can be. I know I will not be able to know what the future will bring in terms of complications - but would just like to get as many facts and others experiences so I can be happy with my decision.

C, I have heard of these problems with implants before and this would be my only major concern. Have you spoken to many women in recent years who had similar problems? Were you told if implants could be a long term solution? My plastic surgeon initially told me they would be a short term solution, but we didn’t get into why this was. I will be talking to him next week in more depth, I just wandered if I was happy with the result how this could be managed.

I was also hoping to see if anyone had, had these surgeries and then gone on to have children. How did the change in shape affect their long term results?

Thank again
Carol

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Hi Carolw.,

I have spoken to loads of women who have had prophylactic mastectomy and reconstruction, using implants, and most have had no problems with them, but some say that their consultant has said the implants may need to be changed between 10-20 years, so it is long term, but if your consultant states it is short term, you need to find out what he means by short term and what will happen after that period time is up, will he do something else.

Breast Cancer Care publications of Breast Reconstruction gives you a good insite into the types of reconstruction you could choose. Also as there isnt a publications by Breast Cancer Care on Risk Reducing surgery, you could have a look at Cancer Bacup Publications called -Understanding Risk Reducing Breast Surgery - Prophylactic mastectomy and reconstruction, you could order it from Cancer Bacup site or phone 0808 800 1234. www.cancerbacup.org.uk. This publication is great insight into having preventative mastectomy with reconstruction, the photographs are good colour ones, and the information is great, it has all sorts of questions answered, also on recovery time too, and making the decision, But the good thing it is all about women who are having Preventative Risk Reducing mastectomy.

It also has loads of questions you could ask your consultant, I always agree with asking lots of questions, and remember there isnt such a thing as a silly question, as someone else would have asked it.!. Your consultant could also hopefully put you in touch with someone who has had this surgery, to talk to, if not then call the helpline support number on here, and you will get to speak to a Support Volunteer that has had preventative risk reducing mastectomy to talk to and help you through your journey. It might be me or someone else. But do call them.

Regards to your question on children and the change in shape, I am not sure what you mean, (I dont have children - never wanted), but if you mean about the scar on your stomach if you choose TRAM reconstruction, then you need to speak to your consultant on recovery time and healing time, before having children as the scar will probably stretch as your baby grows, or if you are meaning your breasts, their is a publication from Breast Cancer Care on Breast changes during pregnancy, but I dont think it takes into account if you have had mastectomy and reconstruction with implants, as you wouldnt have breast tissue or milk ducts etc,
I am on a conference this weekend with other Support Volunteers who have all got various different types of surgery and treatments, I will ask if they have experience on reconstruction then having a baby, I will get them either to reply on here for you, or I will put their comments on here for you.

Hope this helps, appologies for it being long, please read the publications, including the ones on Risk Reducing mastectomy, and anything else please let us know and we will all help out.

thanks and take care
C xx

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Hi there again C,

Thanks for your response. I have just been to the cancer bacup site and ordered the booklets - thanks for the advice.

I think my plastic surgeon said short term as it was decided long term it would still be the better option for my to have the Diep recon. So he was talking about implants as an interim solution, so to leave my stomach alone until I had finished my family. He had never done a Diep op on any women who had gone on to have children and said he would have concerns over how my stomach would go back. Which all made sense to me. Looking through and searching through various forums there doesn’t seem to be anyone out there who has gone through this exact senario!!

I think I am fairly clear on which route to go down, and things were left during my last meet to be discussed at their next monthly meeting. So will find out the consensus next week.

It is great to know about sites and forums like these. This is the first time I have ever joined on one, and I feel really empowered, like I have a really valuable source to contact. No more just having to accept what the proffesionals tell you. You all are amazing for the support you give and the time you dedicate to things like this.

Thanks
Carolx