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Sarah-Anne's avatar
Sarah-Anne
Member
14 years ago

Preventive Mastectomy

Hullo, Has anyone out there had a double, risk-reducing (preventive) mastectomy? I had a strong family history (of all types of cancer but mainly breast cancer) and ongoing problems with ADH, LCIS and even DCIS (a small amount showed up in the final pathology) and was offered the operation. 

I had to wait a year after the offer as I had to go through a whole procedure, see a psychologist (it was a no-brainer really as there was no sensible alternative and my risk was judged to be over 40 per cent) ), a genetic counsellor, the plastics people, the surgeon etc etc etc  And then I think I must have been on a waiting list as I had no private health insurance.  The public system has been great though.

The op was August 2010 and I have expanders in and waiting for the exchange for implants. I think I am going to have this next op in February 2012, which is quite long enough to have put up with these weird expanders!

I haven't been in touch with anyone who has been through this procedure either before or since and would really like to. So please, if you're out there, get in touch!

Sarah

10 Replies

  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Sarah, thank you for your good wishes. I'm looking forward to my exchange, as the expanders are not very comfortable. Because they are not fully inflated, 500 mls instead of the maximum of 700mls that they can hold, sometimes there is a fold that I can feel, and it irritates the muscle over the top. I must tell you, the laser work I had done over my tight left muscle has been amazing. Everything has softened really well, and the breast sits more comfortably on my chest than before. It is still about 2 cm higher than the other, but it is soft and bouncy, and I think my PS will be quite impressed. He has only seen it after my first session and I have had 4 more since then. Re my nipples. I haven't heard about the 3D tattoos, but they sound like a good idea, and I will look into them. I don't like nipples showing through my clothing either, so it may solve that issue. I think nipples, or at least tattoos will detract from my scars, which are very long. Each one is about 18 cm. Good luck with your exchange as well. What date are you having yours done? Love Chris xx
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Sarah, thank you for your good wishes. I'm looking forward to my exchange, as the expanders are not very comfortable. Because they are not fully inflated, 500 mls instead of the maximum of 700mls that they can hold, sometimes there is a fold that I can feel, and it irritates the muscle over the top. I must tell you, the laser work I had done over my tight left muscle has been amazing. Everything has softened really well, and the breast sits more comfortably on my chest than before. It is still about 2 cm higher than the other, but it is soft and bouncy, and I think my PS will be quite impressed. He has only seen it after my first session and I have had 4 more since then. Re my nipples. I haven't heard about the 3D tattoos, but they sound like a good idea, and I will look into them. I don't like nipples showing through my clothing either, so it may solve that issue. I think nipples, or at least tattoos will detract from my scars, which are very long. Each one is about 18 cm. Good luck with your exchange as well. What date are you having yours done? Love Chris xx
  • Sarah-Anne's avatar
    Sarah-Anne
    Member
    14 years ago

    Hi Chris

    I just wrote a post but don't know what happened to it.  I don't think it got posted anyway, I'm such a twit and so hopeless with this sort of thing.   Anyway I just wanted to wish you all the best for the 11th, you must be gearing up for your night in hospital - and thank goodness it's just a night! That's a relief.    My ADH was atypical ductal hyperplasia, a precancerous change in the breast tissue - they cut out a piece from my left breast but a year later hey presto it was back in the right together with some lobular carcinoma in situ (the stage before DCIS, before the cancer forms in the ducts) - which is when I decided to stop messing about and go for the only sensible solution, as you did too.  I think we made the right decision!

    I wanted to ask you if you think you will have "proper" nipples or just the coloured 3D tattoo, because I can't make my mind up.  I don't feel comfortable without a support garment even though I don't need one, so I will probably keep wearing my little tank tops after the implant exchange.  There was a doco on ABC2 last night about a lady with 2 sisters all with the BRCA 2 gene, the eldest decided to have the total mastectomy but her younger sisters couldn't decide and were going to naturopaths etc.  She kept her nipples (which I don't think my surgeon would have advised) and I couldn't see any scars at all - remarkable - mine are much more obvious.  They all lived in Perth (I'm going in Feb to Perth after my implant exchange - some of my family live there).      BEST OF LUCK CHRIS, I'll be thinking of you!  Love Sarah

  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Sarah, I feel the same as you re the nipples, and at this point I am definitely going to get them. My plastic surgeon also said that only about 1/3 of his patients bother to get them, but to me it is like the finishing touch, that will make me look more complete. Even though no one other than my husband and me will see them, I feel that I've gone this far, I may as well finish it off. Usually my surgeon does the nipples under a local and in his rooms. It would only be a general anaesthetic if some extra work on the implants was required and then he would do both things at the same time. He likes to wait at least 3 months from implants as they soften and settle with time, and he would worry that the nipples would end up in the wrong place if done at the same time as the implants. I will be having my surgery at the Sydney Adventist Hospital in Wahroonga. I too am tall like you, at 5 ft 7 1/2, and whilst a fairly slim build, I'm not tiny, so I think my 500 ml expanders look ok. I really hope they do,as it is hard to tell, as they are nothing like normal boobs, and my old bras don't fit width ways, but they are too big projection ways. I use to wear a 14B, but my daughter tells me I was actually a 14C, and that is what I hope to be when all this is finished. What is the ADH you mentioned? Please ask as many questions as you need as answers for, as there is likely to be someone here that has been there and done that before, and who is happy to share. Love Chris xx
  • Sarah-Anne's avatar
    Sarah-Anne
    Member
    14 years ago

    Hi Chris, thanks for your reply, it is so nice to talk to someone who understands.   I don't really talk to anyone about this operation stuff  because a. they think it's horrifying b. they can't understand c. it's probably boring d. they think I am complaining.  Or all 4!   I  was initially seen by the Sydney Square Breast Centre and the doctor who found my ADH referred me to Dr David Gordon-Thomson at RHW Randwick (at the NSW Breast Centre).  He did a day surgery on the ADH after I had a mammatome (where they shoot a bit of metal into you to mark the bit that has to be removed, did you have that?).  Then the following year another mammatome for the LCIS and by that time I had decided PBM was the way to go. My PS was Prof. Mark Gianoutsos who is just as great as Dr. Thomson.  I nearly didn't have Dr. T doing my mastectomies as he had a bad infection on his elbow on the day that looked very painful. But he couldn't find anyone else to do it so I was lucky!   After that I went to Outpatients at Prince of Wales for the filling of the expanders.  I went up to 425 mls.. I am 5 tt 8 1/2 and narrow build so any more would be too big.  In fact I think the expanders look too big, they make me feel self conscious so I will tell them I want to be smaller.  Before the operation I was a B and that would be fine .  I may not have Prof. G doing the actually implant exchange as I am a public patient and can't really choose but he would be there at the operation and I am sure it would be just the same.  As for nipples, I am thinking of just having a 3D tattoo because otherwise I might have to wear a bra all the time and one of the nice things about all this is that you don't have to.  I am sure you are getting more information than me so please can you tell me what they said to you egarding the nipples.  My breast care nurse said that most people who have had mastectomies and reconstruction stop short of nipples, she said they have had enough by that time and can't be bothered.  But my attitude is - you might as well finish if off properly.  Which hospital did you have your treatment at? I hope I just stay overnight in hospital and don't have drains.  That would be SO nice. Love Sarah 

  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Sarah, I saw my plastic surgeon again today, just to check on my size and if I was happy etc. My size at present is 500 mls in each. He spoke of putting in an anatomical textured implant, about 1 cm narrower than my current expander. It will make me a C cup which is about what I've always been. ( I thought I was B cup, but my daughter and Dr say I am more of a C, so will stay with that ). The laser seems to be helping and I had another session today. Will fit in 2 more before Christams. My surgeon was OK with the laser. I asked him all about the exchange, and he said it is much easier than the first operation, and at most I will stay over night. My surgery is an afternoon case, and that is the main reason for the ovnight stay. I asked about drains, and he said no to these. The nipples he often does in his rooms under local anaesthetic about 3 months later, as it takes time for them to settle down. Should there be some tweaking needed of the implants, then a general anaesthetic is needed, and so he would do the nipples with this extra surgery. Which hospital did you have your tissue expanders placed in, and who was your doctor?. Love Chris xx
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Sarah, I saw my plastic surgeon again today, just to check on my size and if I was happy etc. My size at present is 500 mls in each. He spoke of putting in an anatomical textured implant, about 1 cm narrower than my current expander. It will make me a C cup which is about what I've always been. ( I thought I was B cup, but my daughter and Dr say I am more of a C, so will stay with that ). The laser seems to be helping and I had another session today. Will fit in 2 more before Christams. My surgeon was OK with the laser. I asked him all about the exchange, and he said it is much easier than the first operation, and at most I will stay over night. My surgery is an afternoon case, and that is the main reason for the ovnight stay. I asked about drains, and he said no to these. The nipples he often does in his rooms under local anaesthetic about 3 months later, as it takes time for them to settle down. Should there be some tweaking needed of the implants, then a general anaesthetic is needed, and so he would do the nipples with this extra surgery. Which hospital did you have your tissue expanders placed in, and who was your doctor?. Love Chris xx
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Sarah, I saw my plastic surgeon again today, just to check on my size and if I was happy etc. My size at present is 500 mls in each. He spoke of putting in an anatomical textured implant, about 1 cm narrower than my current expander. It will make me a C cup which is about what I've always been. ( I thought I was B cup, but my daughter and Dr say I am more of a C, so will stay with that ). The laser seems to be helping and I had another session today. Will fit in 2 more before Christams. My surgeon was OK with the laser. I asked him all about the exchange, and he said it is much easier than the first operation, and at most I will stay over night. My surgery is an afternoon case, and that is the main reason for the ovnight stay. I asked about drains, and he said no to these. The nipples he often does in his rooms under local anaesthetic about 3 months later, as it takes time for them to settle down. Should there be some tweaking needed of the implants, then a general anaesthetic is needed, and so he would do the nipples with this extra surgery. Which hospital did you have your tissue expanders placed in, and who was your doctor?. Love Chris xx
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi Sarah, I'm in the process of having done what you have had done. I had my first mastectomy in December last year. I don't have a family history of breast cancer, but mine didn't show up on a mammogram, so I started to be concerned about ever trusting a mammogram again. Also I had first a lumpectomy, but the cancer was larger, at 21mm and grade 3, than the 4 mm they were looking for. My surgeon was also happy to remove the other breast if I desired. First I dealt with the chemo, but 6 months after I finished this I booked in for a prophylactic mastectomy and the start of reconstruction with tissue expanders. I had this at the end of September, and I'm due to have the exchange on January 11th. I've had a few problems with the most recent mastectomy and immediate reconstruction. Firstly, on day 20, I had a large hematoma form and it required surgical removal, clearance and then replacement. 800mls was removed followed by 300 mls in the drain. It still feels irritated, and the muscle over the expander often spasms, and the implant has moved up my chest a bit. I'm having some lazer on it to try and soften the muscle. I'm expanded to 500mls at present but they look to be two different sizes. Maybe there is scar tissue there from the 2 surgeries. How are yours doing? I have no regrets about the double mastectomy, as I didn't ever want to hear , you have breast cancer again. No one ever suggested counseling for me before making my decision. Did it help you, or was it something you had to have to keep the surgeon happy? ( I'm 53 ) love Chris xx