TAMOXIFEN**33**

[MaryAnnSingleton]

new thread - bring the trolley over here....

This is for tired teddy. I'm brca2 positive and in December had prophylactic (well supposed to be but turned out I had dcis - that's another story though) mastectomy and reconstruction with implant and strattice. I had some healing issues and unfortunately had to have my right implant removed in February because it became exposed.

I've just (yesterday!) had surgery to place an expander and begin the recon process again. For the past 6 weeks I have been flat (or rather concave) on the right side. I cried a lot the first couple of days but it didn't take long to get used to it. I bought a really good mastectomy bra www.figleaves.com/uk/product/ANC-5362X/Anita-Care-Natasja-Mastectomy-Bra/?size=&colour=Black and used a squishy prosthesis that the hospital gave me and honestly no one would have guessed I was lopsided. I surprised myself by thinking about it very little, especially considering this scenario was one of my greatest fears when I embarked on this whole process.

It's not ideal and my heart goes out to your mum - it's awful to feel that you're on the other side and then to have a setback like that but I'm sure she will cope fine, just as I did. And the time she has to wait before beginning the recon again will pass in the blink of an eye. All the best to her and to you.

That's a lovely post uwaga. Hope your new implant is okay this time round.

Thanks smee, me too!

Must have been a hell of a shock when they told you they'd found DCIS. Suppose it shows you were right to go for the mastectomy though.

uwaga and tired teddy I had a mastectomy eleven years ago and have never had reconstruction. It just never bothered me enough to put myself through surgery, though I know it is a personal thing and everyone responds differently, and it is a bit of an on-going nagging should I, shouldn't I. It actually doesn't look that awful, this is what I look like when I am not being the split of Julie Christie www.facebook.com/photo.php?fbid=471617519526697&set=a.402057853149331.92842.402044213150695&type=1&theater However the only time it would really be in the least bit evident would be on the beach and even then there is good swimwear available to hide it and my saggy stomach is the real problem but just wanted to say that there are loads of places to get nice mastectomy bras and swimwear. Even Marks and Spencer do mastectomy bras now, in the big stores and online www.marksandspencer.com/Post-Surgery-Bras-Bras-Lingerie-Underwear-Womens/b/1364733031?ie=UTF8&pf_rd_r=095MF1ACCZ3JY09Q3C5W&pf_rd_m=A2BO0OYVBKIQJM&pf_rd_t=101&pf_rd_i=43246030&pf_rd_p=475115433&pf_rd_s=left-nav-2

Also Amoena who do swimwear and prosthesis too, though it has all gone a bit cougar for me of late www.amoena.co.uk/

And Nicola Jane, though I'm not sure about quality www.nicolajane.com/

However the latter two are battling the habits of a lifetime of wearing M&S undies!

Hope it all goes well uwaga and hope it all gets sorted out for your Mum teddy

gigs I used to let little cop pick from big cops clothes, we have lots of pictures of interesting style combinations to laugh at now, together with the fact that everything had to be TUCKED IN, even dresses into tights..........

Yes, smee it was a hell of a shock, not least because I'd had a clear MRI a month before the surgery. It was a tiny amount (less than 5mm) but who knows what would have happened if it had been left to its own devices for another few years. I'm 36 so I thought I was well ahead of things - just goes to show.

Copthall since I lost the implant in February I have realised that I would probably have coped alright with being flat. Unfortunately after a failed implant recon you end up not so much flat but concave, with a kind of wrinkly skin crater and I'm not sure how I'd feel about looking at that for the rest of my life. But I would almost certainly just get used to it. Before my surgery I never considered not doing recon, partly because with a prophylactic surgery I think it's just assumed that you will. But the experience has definitely taught me that I am me, and feel like me, not matter what bits of me may be missing. As the ovaries will have to go in the not too distant future, that has been a valuable lesson to learn.

Uwaga, thanks for sharing your story. Mum and I are both brca1 carriers. I had also had a prophylactic mastectomy and recon with implants and strattice. Mine was pretty straight forward oct 2011. I had a nasty rash but it went and I'm fine. Mum had hers last oct 2012 and this wound has just never healed. I don't really know why. She is older 67 and overweight with high bp I don't know if this has impacted blood flow or something but now I'm just guessing. I think mum is quite scared of her empty breast and what it will be like. They have told her it will be at least 3 months until they try again. She hasn't mentioned a prosthesis yet I will ask about that. I remember it being my worst scenario too. Such a setback. Thank you again for your king words and I wish you good health and healing.

Copthallresident, again thank you for sharing your story. The photo of that women looks amazing. She's utterly feminine. I think one day when I'm older and tired of replacements I will do that. Thanks for the links about underwear. Mum will feel very safe at M&S I know.

Dad has gone up to be with her today. She's feeling better now just apprehensive about the results. It's first thing in the mornigi think, the op, at about 7am. Not sure how long it will take. I know everyone up there at St George's and they are all wonderful. I just pray that there are no more surprises. She really wants to still have breasts, I'm worried that it'll be worse when they look inside and they will have to remove her breast skin. Can't stop thinking about it all.

Thank you all again.

i hope it all goes well for her tomorrow tired teddy. I think it would be very unusual to lose skin because of an infection, hopefully removing the implant and cleaning the pocket will be enough.

I know that 3 months sounds like a long time to wait but it will go so quickly. I can't believe how fast my surgery date came around. I hope to be all done in 4 months and I'm sure that will fly past too.

I'm glad you had a straightforward experience with the strattice recon. Mine almost went that way but I had nipple sparing and as can sometimes happen there was a tiny amount of necrosis on the right side. I'm slim with not much subcutaneous fat and when the last little scab fell off there was nothing underneath it, just a hole. That was not a fun moment. My plastic surgeon was almost as gutted as me as up until then my boobs had looked amazing! Hopefully I'll get back to that point, this is just a slight detour.

Mine and mums are also both nipple sparing uwaga. I'm also young and trying to ahead of the game (33) I will be having the prophylatic oopherectomy (sp) in the future. I'm glad you sound so positive that it wasn't as bad as expected. I will hopefully share this with mum in a few days time.

I'm dreading the oopherectomy far more that I ever did the mastectomy. I plan to put it off for as long as possible, which will really just come down to when my anxiety about ovarian cancer overtakes my fear of early menopause. At the moment I'm not at that point. Have you seen this? brcatool.stanford.edu. I know it's no crystal ball but it helped me get a few things straight in my head.

uwaga One of my friends diagnosed at the same time as me has a strong family history, mother, grandmother, sister and though not BRCA she has been advised that it is a case of them not identifying the gene yet. Her original treatment did not throw her into menopause but she has just had a recurrence and has had an oophorectomy. Took time to recover from the surgery as you would expect but in terms of the menopause she has had no side effects. My chemo put me into menopause at 43 and any side effects that I could have put down to treatment / early menopause, some of my friends are experiencing anyway, indeed a couple had menopause at 45 anyway. People forget that two thirds of women do not have side effects from menopause even if thrown into it early, it's just the one third don't half winge

Wow, that tool is clever uwaga. Not sure if it reassures me about choices I've made or scares me about choices I'm yet to make. What scares you about the oopherectomy ? My counsellors so far have advised leaving it til I'm nearer 40 to reduce the risk of osteoporosis.

Thanks Copthall, that's good to know. Menopause is such a scary thought, more so because it seems so taboo - no one really talks about it so you start to think that's because it's too awful for words.

tiredteddy it's a pretty whizzy thing isn't it?! I hope it's reassured more than scared you. At least we know our risks and can make decisions to dramatically increase our life expectancy. Heavy stuff though eh. The oopherectomy scares me for reasons of vanity (I don't want to get fat and hairy and lose my teeth), health (osteoporosis) and relationship (loss of libido, mood swings etc..). Think that about covers it! Mastectomy was just about adapting to a changed exterior, oopherectomy represents something else altogether.

I can't imagine doing it until I'm 45 but then I didn't think I'd have the mastectomy until I was 40. Then last year I just decided I had to do it asap (and just as well considering they found dcis in the pathology).

Uwaga, Cop, It's actually really good to talk about this as I've been so busy living since my mastectomy that I haven't though about it all in a long time. It's all still there in the back of my mind though. It's a good tool. I suppose there is a lot to consider with the next op regarding the menopause. I think I've shelved it a bit as "in the future" .

uwaga, I'm like Copthall as chemo pushed me into menopause too. I was 44. Most odd to be through it now at 47 and not having much thought about it. Bizarrely I was really pleased it was happening as it was shutting down the hormones which fed my particular type of BC. I've had hot flushes, but that's about it - not nice, but was going to happen at some point. Am awaiting my first whiskers..

uwaga they may not talk about it in their thirties but by 55 they talk about little else!! Actually at 43 it was rather welcome, I had shitty periods, three days of the month out of my life, in pain, couldn't be away from a loo for more than hour, still had accidents, and all the attendant mood swings (another symptom of the high levels of Estrogen that probably gave me Cancer). Once I recovered from chemo I felt better than I had for years, definitely better without it, but then I was on Tamoxifen which probably eased me into menopause a bit more slowly. Are you going to take Tamoxifen? I saw the studies that are now saying it is effective as a prophylactic in those at high risk.

smee Since we have had discussions about whiskers I have been a bit paranoid, keeping plucking out hairs. I am very fair, they don't show and were probably there all along but now I have got a bit obsessive with the magnifying mirror, strangely satisfying though....

uwaga cross posted with smee yes I too had a strongly estrogen positive tumour so TBH would have welcomed menopause even with a full beard

Thanks for sharing your menopause experiences too smee. I can understand why menopause might have felt quite welcome for you. And no whiskers yet - that's good too!

I'm not going to take tamoxifen. It's now being offered to those at high risk of breast cancer but since I no longer have breasts it wouldn't do anything for me. There's evidence that the combined contraceptive pill provides protection against ovarian cancer so I may investigate taking that until I'm ready for the oopherectomy, though I'm not sure I'm comfortable with additional hormones floating around my body. I've had a mastectomy but they can't remove every scrap of breast tissue so I would worry that the hormones in the pill might trigger something to develop in the breast tissue that remains. I think I need to go back and talk to my geneticist. Mastectomy was always the most pressing thing for me (my mum died of breast cancer) but I do need to start thinking about the ovarian stuff. And I always feel better when I have a plan.

Topsy Well done to your DD. My friend in NI only woke up to the fact everyone was tutoring at the last minute, panicked that she had missed something, but her DD was doing well in the tests at school , and her DD aced it. They prepare them at school though don't they? Plus she had good back ups in terms of integrated schools? She laughs now at it all and that unknown to her the selected school was known as "the whores on the hill" , it isn't at all, they are all quite naive and sweet compared to some of the madams at DD's school, the one gigs alpha mums are stressing about!!

Good for your friend copthall. But calmer now as nurse called me and said that could be an infection as can get odd lumps where had radio etc but surgeon is going to check it out.

Just got to get MRI out way tomorrow

Hello to uwaga and tiredted. Sorry I've been awol. Concert last night and dd2's birthday today. My baby is 15!!
Nigty night lovelies.

Yoohoo to the newbies .
Welcome one and all !

Yes cop I too fell for the tutoring lark when DS was doing it .
Got him tutored for the last 6 weeks (got laughed at when I was phoning tutors at that stage , as everyone else had been tutored for 2 years previously !)
What do these poor kids do , when they get to grammar school and can't cope without a tutor ?
If my DC weren't up to academics , I would want them to be in a school that suits their needs , not my aspirations !!!

Anyhow , blizzards are apparently going to hit us overnight .
Dd will be bitterly disappointed as tomorrow is meant to be her Viking assembly , a d she doesn't want to miss out due to a snow day !

Off to bed now .
Night night my lovelies x

All the best girls have birthdays today Jane , my dd was 10 today !

hope topsy junior enjoyed her day.
The forecast I saw had rather a lot of snow in Yorkshire but tons in parts of NI. Will have a look to see if it has started. Dh is worried about work today as he is supposed to be at one of the highest points around here...