Breast Reconstruction discussion group (tamoxifen splinter group)

[foofooyeah]

Thought it would be a good place to discuss general issue on with breast reconstruction following cancer.

So I shall start. Having chemo now, surgery in the new year.

I have to have mastectomy on left breast an my current thinking is to request bilateral MX for 2 reasons.

1. Eradicates chance of occurrence in other breast.
2. Due to having a big old pair if saggy boobs more chance of getting a reasonably matching pair.

Need to do more extensive investigation but currently thinking of expander and implant and dropping at least 2 cup sizes.

I don't want loads of invasive surgery or other bits of my body chopped about

So please share your stories if what you have had done, planning to do, or decided not to do.

Just popping in to mark place. Currently doing chemo - 5 more weeks to go. Just found out that no Rads are rquired.

Surgery so far - mx at end of August with temp expander in place.
Surgery planned for Jan - reconstruction of breast (currently vering toward implant only as also don't any other parts of my body chopped up) and lift (and maybe implant in other breast).

Meeting with surgeon in 2 weeks to discuss - am very excited

Waving a hello.. ! V.good idea for a thread, foofoo.

I've made my decisions, but in case I can help anyone else, I've had two mastectomies (a year apart one due to cancer in 2010, the other elective). Had immediate reconstruction with expander implant both times, then switched to silicone. I have a fair few scars, no nipples and no longer need to wear a bra..

Hi it's me HND. I had a right side mx with immediate reconstruction using Latissmus Dorsi (LD or back) flap in January 2013. Have had a very unusual amount of problems following surgery with fat necrosis and healing issues but that is probably largely down to my high BMI and is pretty rare to go on this long.

Old Fart talking here, had a reconstruction nearly 20 years ago. In those days we were offered either a TRAM flap or a silicone implant, I opted for a the TRAM flap (they used abdominal muscles) I am delighted with breast but have been left with abdominal problems (adhesions & hernia)
Good luck

kitkat, foofoo, just thought it worth saying as it didn't occur to me at the time, but with implants though a far quicker, smaller op you will need more ops to get them straight. So first is the expander implant, then another to take that out and switch it for (probably) silicone. I've had more ops than that due to capsular contraction, so in total have now had about 6 different ops and still don't have nipples..!

The ops are genuinely okay in that they're not about cancer, cosmetic and not overly painful, but still need general anaesthetic etc. Just worth bearing all that in mind as you mull it over.

Hi I'm a representative of the flat earth society . I had a mastectomy 12 years ago followed by chemo. I was 43. I was offered a reconstruction using my stomach muscle at the same time as the mx but at the time felt that I wanted to focus on getting through the treatment, my tumour was a nasty one and I was only given a 60% chance of survival, without the added burden on my body and mind of an eleven hour operation. Since then I have got used to being one boobed, it really doesn't look bad (you spend your first twelve or so years flat anyway). I wear a prosthesis and bikinis on the beach etc. The prospect of more surgery, side effects etc has never felt worth it. However I was small breasted to start with and didn't have a cleavage so it hasn't made a huge amount of difference to the way I look. And I quite enjoy the shock value of throwing my prosthesis across the room after a few drinks

I have a few friends from that time who did have the 2 for 1 tummy tuck and new boob. They were all pleased with the result, especially the flat stomach, made good recoveries and only have the odd twinge in the way of long term side effects, mainly where they tunnelled the muscle up.

Great input. Thankyou.

Saw a friend today who had MX last week with expander, and first 200ml put in yesterday. Results already look good. A lot better than it did a week ago.

Do like hearing stores of TRAM as would prob be best result aesthetically but don't fancy long surgery, recovery, and extra scars.

I also met a very slim lady who had a BMX with no recomstruction and looked fab. But she was very slim unlike me who is rather fat! Think I would look like a weeble with no breasts.

When first diagnosed you just want them chopped off but with time I think I would feel odd with no breasts having had sizeable ones for all my life.

Looks like you and I are on the same page then foo.

Obviously I'm part way there having already done the expander part but right now I'm still thinking implant only. Great to hear others experience though (good and bad) to help with the thought process.

Just bumping this up for any newbies ....

I really need to get my head round this as have in the New Year. I shall so some rading over the next few days and report back

Hi everyone. I am a week on from risk reducing bi lateral mastectomy and reconstruction using tissue expanders.

Obviously i am still sore and not long out of hospital. Plus, the finished product isn't there yet, although it is a bit better than I was expecting at this stage, there is something there but not much.

I haven't been given prosthesis yet but go back next week for a check so hope I will be given something.

How long did everyone else find they had to wait before they could tolerate it. It the moment even my top rubbing on certain areas is awful.

I am also shattered but feel a bit of a fraud as I know I am lucky that I do not have cancer and do not have other treatments to come.

Really useful to hear everyone's experience. I've only just heard that I'm to have a mastectomy (plus maybe a double for prevention?? God knows) and even the terminology is still really unfamiliar . I'll have to do some basic reading, get a grip and read these all again....

Wren I have just had a double. Even though the reconstruction isn't finished yet, it is ok. I know I will want prosthesis to make the shape until it is done but so far its not all that bad.

The plastic surgeon went through all the options of reconstruction with me and I found that all the info I had read before was no substitute for her telling me how it would relate to me, as they take into account your shape and body size etc.

Ah. Thanks, Always. That's useful to know.

Hope you don't mind me replying as I haven't had cancer (only DCIS which is non-invasive) but I've just had a double mastectomy with reconstruction due to family history of breast cancer!

I had my reconstruction with implants and the strattice matrix which is a relatively new way of doing it. I'm only 3 weeks post op but so far I'm extremely happy with the result! Scars are very neat and as for the shape, lets just say they're better than what I started with!! :)

Great to hear from you, Paddy, and to learn from your experience (glad it was just DCIS). Thanks for the tip on implants and the strattice matrix. I'll add these to my list to look up!

Um. Really didn't mean to say "just" DCIS. Sorry. That's not how I think about it. It's all scary stuff to go through.

No worries! I was very relieved that it was just DCIS cos on the grand scheme of things it's v low level compared to some breast cancers!

Hi paddy strattice matrix ?? Was going to say I had not heard of it, but a quick google showed t was made of 'porcine ' material, so that's what a friend just had. We did lots of squealing and grunting when I visited her in hospital but she as done well.

Every now and then I do think about the pig skin but I was told beforehand that it gives a great result :)

The only thing is that not all hospitals do it on the NHS. Whereabouts do you live?

Okay. I've made my decision and really surprised myself by doing a 180 degree turn.

I started out by just wanting to get on with the mastectomy and follow up treatment and not be bothered with reconstruction as it was too much extra to think about.

I then looked hard at the information and decided that there was a lot of sense to doing something immediately - not least for emotional reasons. It seemed to me that an implant made sense - quickest and less recovery time. But after more conversations and a meeting with the plastics team, I finally thought that a DIEP would work well, using a bit of tummy tissue to reconstruct the breast. Longer operation, longer recovery time, but gets it over with upfront. And I will have a squashy breast shaped lump that won't look very glorious (already had one op on that breast so lots of scars) but that will feel like a bit of me.

So not what I expected to decide, and involves some finely balanced judgements that are really personal (no right or wrong decisions, I think, just a balancing out of what seems right for oneself).

wowo Wren you have had a major change of heart. I have been deciding between an implant and a DIEP so know it is a major op - but you're right it will all be done in one go.

When i went to my LGFB session I met a lady who had the DIEP done at the outset and although the tummy side of things takes a while to recover from she was pleased she had it done, and was by then mid-chemo.
Have you got a date? The other thing to consider is that in my area if you are NHS the waiting list for that surgery (as a reconstruction only option) is 12 months (as you need a plastic surgeon) but you do seem able to get it done at time of mx without too much bother.

No date yet - I've only just told them, so I'm a bit worried that it will be a while - I'm at a big busy hospital that gets booked up. And yes, we have the same situation here: immediate reconstructions always take priority and it's a long wait to get through the queue to get it done later.

Still wibbling slightly about the stomach bit, but spoke to a new friend (well, I've never met her but she's definitely a friend as she's talked me through so much of this stuff) who did it all last year, recovered well, and who likes the way the DIEP feels.

wren are you not under a time constraint to get your mx done though. (or is it preventative?)

I couldn't have immediate reconstruction, as I was planned to have Rads but that's not required anymore (yippee), so I had a Tissue expander inserted. Now that chemo is over we are sorting the reconstruction and it is provisionally booked for Jan 17th (that's the earliest my surgeon thinks I will be well enough). At the moment I'm planning an implant plus a small implant on the other side to get a match - I fancy perk boobs plus after 6 months of treatment I just don't want any other body parts choppped up . I am very fortunate as I have private medical so can have any of the options without a wait. I have to go back on Dec 17th to confirm everything and go from 'pencilled in' to 'booked'. The only fly in the ointment at the moment is the number of things I have developed due to chemo that need to cleared up before he will operate .

How great to have it all planned and ready to press "go". And it sounds very cheerful to go for perky!

I do have a time constraint and I'm very keen to get on with it. To be honest, it's all still recent (I had a lumpectomy which turned out to not be enough), so they're not slow yet. I know I'm on the urgent list and will get the operation as soon as they can do it, but I did have a bit of a wait first time round so I'm trying to be a bit zen about the whole thing.

Hi, time for me to make decisions. It's strange how what you want initially then changes ... Had a long cat with bcn yesterday and appt with surgeon will come though soon. Surgery will be mid Feb. I have to have radio which adds a complication.

I have ruled out stomach recon.

So it's down to no recon, recon or delayed recon! Either expander or ld flap.

I was sure I wanted expander, but bcn sad I would get a good result from ld, I'm young !!! (Ha ha) and well and should recover quickly and my surgeon is brilliant at them. So am thinking about it.

I can insist on immediate recon even with rads, they have rarely had trouble but surgeon will insist that I am aware of risks.
I always said I wanted a double as never wanted to go through this again but bcn said to think carefully, my good boob is v v clear, but I can have it if I want.
I did think of another option: one side mx, wear prosthesis for a year, then decide then if I want the other breast removed and recon then.