I am 32 and have a little girl of 2. I will be having a double mastectomy and recon with expanding implants for preventative reasons in 4 four weeks now (arghhhhh it is coming round so quickly).
Websites/forums like this are exactly for people like you and me who need somewhere to sound of, or ask questions. I do know what you mean about feeling guilty though, but that is why we have this section.
I don't have a BRAC diagnosis, my risk is based purely on family history. Unfourtunetely none of my family who have been diagnosed with bc made it, so they didn't have anyone to test against. Never the less I am pretty confident this is the right decision, I just can't take the risk.
I don't have much help around, and know it will be pretty stressfull for a short while. But my partner is very supportive and will be doing all the child duties for the first couple of weeks. I was originally talking to my surgeon about a different surgery option, but it was decided by all that at the moment implants are the best solution for me, because they are the quickest operation, with the quickest recovery time, and the least destructructive physically. I have the option of a more natural surgery further down the line when I have finished my family.
It was decided that my only risk factor was in my breasts, so can't tell you much about the other operation. Other than I hadn't thought ovaries were a concern for women with high risk until around 40. I would get some further clarification on this, maybe they could just screen you for this more now??? These two operations would be alot to take on in one go, especially with two small children.
The ladies on this helpline are lovely, and I have felt much better once I got some clarification. Hope this helps and you are not getting too stressed about all this. Try and focus on the positive and that you are getting the option to choose to aviod BC.
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I am in Milton Keynes, Addenbrookes is Cambridge isn't it? You say an hour away, closer or further away to MK? I am having my surgery at the Royal Marsden Sutton, Surrey. It should have been in London, but you probably saw that it had a big fire just after christmas.
I also would like another baby next year, although my surgeon said I could try only after three months!! Not sure about that. Katie is also BRCA1 and has been told to have her ovaries out by 40.
I couldn't be tested because all my affected relatives have died and no tissue was saved. My risk is based on family history alone. I don't think I said I am also having my nipples removed too. Has your sister been tested too?
Have you been happy with your treatment so far? It is a difficult thing to get to grips with. I don't know about you, but I have days where I wish this could be happening to someone else. But other days I feel really positive about what I am doing, and unconcerned about what the end result would be. I just look at my beautiful nephews and my little girl and remember what life was like growing up without a mum, and I hope by doing what I will be, will stop history repeating itself. Although I also know long term it is still a gamble.
It is great that I have others in the same position to share their stories and experiences. I had never used forums before, but I am so glad I started using these as I probably would have gone crazy be now. Sorry for going on, I had a glass of wine 😉
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Hi Emma J,
Not too long now then!!! I also use a different web site for questions ect...and they have a photo album of other womans recons. The pics I have seen look really good. Some of the recons have been done keeping the nipple, and some without. I think the ones without naturally a bit weird, but the nipple recons I have also seen look great too. But all the other women say that during this build up before is the most anxious time, and after they have a tremendous relief.
I am sure you are the same, as you wouldn't be in this position making the choice to have this op. But I have had to deal with so much already in my life, I honestly feel like there isn't anything I couldn't get over! But as always it is the not knowing that makes me feel so nervous.
My partner says he has no concerns about how I will look after too, he has seen my sister die due to BC so he knows how real this is and I suppose he wants me to do what will hopefully safeguard my future. But I truly believe neither of us will know how we will feel until after.
I know what you mean about asking too many questions in clinic, as they deal with mostly ladies who have BC. Which is why these sites are so great for guilt free questions even if you think they are silly. I am 32 and have a little girl who will be 2 soon. I breast fed her until 11 months aswell, but have got over not being able to do that again. I am sure I will feel a little sad when the time comes again and won't have the choice.
Where are you having your surgery? as for the sleeping on your front, most of the ladies have said they haven't been able to sleep on their fronts mostly due to being uncomfortable. Maybe yo could look at getting a body pillow. It really helped when I was pregnant, I couldn't sleep on my front then either.
Above everything else I think we need to remember why we are doing this, and be glad that we are getting the choice.
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Just read your thread. I can see how stressfull things have been for you for the last few months, and just wanted to see if you had thought about maybe opting to have the mastectomy surgery asap, so the cancer can be removed, and then having a delayed recon? This way you may feel less pressurised and rushed into making a decision on what type of surgery you would be happy with.
I will be having preventative mastecomy and expanders implant recon in June. But was originally looking at a Diep. Decided due to the length of recovery and others issues to opt for implants now, and Diep in about 10 years time once finished family ect.... so I do know it is possible to have delayed recon.
I hope you have some support at home too, it's tough to go through this on you own?
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My surgery is still a couple of months away, and have some questions about after effects I was hoping to get answered?
I am having expander implants and I feel a bit weird about an implant being put behind the chest muscle, and the idea that it will be pushing my muscle out un-naturally. How does this feel short and long term? Is it painfull or uncomfortable?
Will I be able to sleep on my front again?
I am also starting to feel a little anxious about how I will feel emotionally, do any of you have regrets? Or feel less womanly. I have been thinking about what if I am left disfigured, or really unhappy with the result?
None of these concerns are obviously enough to not have the surgery, based on my family history, would just like to be as prepared in my mind as I can be. And have some of your perspectives on things. Don't think I should have watched the embarassing bodies thing on breasts!!!
Please add anything else that you feel would be helpful.
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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.
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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?
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Like you I had an uphill battle to get a referal to specialists regarding my bc risk. Mum and sister have both died due to bc. I decided to start a family and accept my fate (as I wasn't getting anywhere). July last year had my little girl and during post natel checks casually mentioned Again! my risk concerns to GP and finally got a positive reaction. Only took 6 years!! Anyway waffle waffle.... I am now also due to set a date for preventative surgery early next year. With hindsight and the initial support, this process would have been alot easier and simpler to go through without having a little person to look after and consider during the millions of appointments in London and also during the recovery period. Having said all that I think my situation may have been easier if I had the support of a mother or sister around me.
I did breast feed my daughter for 11 months, and it was very hard to stop and accept I would never have the opportunity to breast feed again. But ultimately I decided it would be far better for my family and any future children that I was here and healthy, then to have the chance to breast feed again. In some ways I did wish I had bottle fed from the start, because then I don't think it would have even have entered my head in the first place.
I have discussed the option of finishing my family before I had surgery, but I don't feel I could wait as my sister was diagnosed when she was 32 ( I am 32 next year) and it would be even more difficult and expensive to get help looking after more than one child.
Hope this has helped!
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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
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