i have considered having a mould of them done and also spoken to an italian photographer who takes pics of ladies after mastectomy with intention of possibly doing a before and after. i think what is also hurting is i feel others dont understand and i know i should forget about them but im such a sensitive person i let it bother me. for instance i am on a menopause forum which has been a lifesaver and feel i know the ladies so well its like this thread a few of us check in everyday to check everyone is ok. but there is this lady on who had cancer years ago and she asked how i was feeling today and i admitted i have been down and crying today as im scared and she simply replied “what are you scared of after all this is preventative its not as though you are ill”. she has made me feel as if nothing is wrong with me i know i dont have cancer but sick of justifying myself to others. i have 85% risk and lived with this for 2 years worrying cancer will get me 1st. i replied it doesnt make it easier for me i should be a happy 32yr old not a sad menopausal one having to decide on dates for a double mastectomy. this would not have been offered if nhs thought i would be ok. oh i could scream. sorry to moan need that of my chest pardon the pun xx
Go ahead and moan! I would feel exactly as you do and would be a total mess from the fear of BC for the last 2 years and now the fear of losing both my breasts! What does she mean - its not as if you are ill!!! Is she suggesting you wait UNTIL you get BC and then get them chopped off!!! The way you feel about how you look is no different whether your breasts are being chopped off because you have BC or are very likely to have BC or loose them in some horrendous freak boob amputating accident!
There I’m angry at her too! Grrr!
she has actually made me a lot worse i dont need that attitude. i did at 1st feel “fake” when at maggies centre and even seeing surgeons as there were ladies there going through kimo and i felt there was nothing wrong with me and i feel i had moved on from that but she has made me go back to that thought. it must be awful for any lady to loose a breast/breasts but she has made me feel silly. i just want to ensure i can say i knew my risks and acted on it.BRCA2 affects breast, ovarian and a few other cancers so i dont know how she thinks i got off lightly. i am so quiet and dont like upsetting people but if i met her now i would whack her. i wish people who didnt understand a situation would keep their opinions to themselves xx
Go girl!!!
I have just posted a long winded winge called “irony or am I just unlucky?” under undergoing treatment for BC which just about sums things up for me right now!
Morning girlies!
Hope everyone is okay today.
Dot, have you left for your weekend of fun yet?
Lainey, I noticed that the moderators have put a post on the “live discussion tonight” thread with feedback for you and an additional phone number you might find useful.
Jenny, long time no speak. How has going back to work been? I have just joined another forum (I just looove to talk) and there is a specific topic on there about phyllodes tumours and lots of posts in the thread. It might be of use to you. Let me know and I’ll get the address to you.
I am feeling better today, still liable to cry at the drop of a hat but more optomistic as I have found out that depression is another side effect of chemo in that you can and often do fall down a horrid dark hole after each dose. I feel more reassured that I am not going nuts! I don’t think the smoking/back wound/period helped but the hole was so horrid its reassuring to know what might have made it worse. I am going to go to the doctors next week and get some happy pills as I don’t want to feel like that again!
I had a brilliant night last night. My friend who was treated for BC last year came over and we tried on wigs, bangs and hats, scarves etc, drunk lots of vodka and coke, laughed till we cried about the wigs, joys of chemo etc. Just what the doctor ordered. I am soooo lucky to have her as a friend. Its such a shame that we weren’t so close last year and I couldn’t be there for her the way she is for me but as she says, I wouldn’t have understood.
xxx
hi ladies, hope yous are all well. i feel shit everything is scaring me now hospital went bad. dont know what im doing anymore. cant have op i want need to choose between 2 others. fed up with it all. i have had loads of double vodks this afternoon. having friends up tonight. will report in tomorrow as i cant even begin to get head round this. sorry ladies going to have a drink and think clearer tomorrow. hope yous are all ok lots and lots of love lainey xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Oh Lainey, poor you. I hope the vodkas and friends helped.
What were you looking at, sorry I hadn’t asked before, tram, DIEP, LD? Why can’t you have the one you wanted? Did you get any idea of a date?
Much love, xxx
hi ostrich i had hoped recently to have implants one of the reasons was it was a less recovery time etc and less invasive. i know a mastectomy will still be hard but this was a better option for me. but today she said it wont look right at all as im 34jj just now so have far too much skin as im going down to a 34c/d. so options are either using my stomach or back. i just hadnt considered that at all. she asked when is best for me because no matter what she has to do it within 18weeks due to our guidelines. so i have agreed to see her on 12/12/08 and tell her then which recon and she will do it 2nd week in feb. i was offered it b4 xmas but now i need to make sure i can have people here to help and be with me and i need time to get my head round it. its now 14 weeks ago which is not long.love lainey x
Aw honey, I can relate to your feelings from the other side. With all my issues with recon I have wondered why no-one suggested an implant cos it would have been so much less hassle! That being said I have read enough other posts to know that implants have enough issues of their own! The non implant ones are more natural looking though if its any consolation.
Once your feelings have subsided take your time to thoroughly research all your choices hun. I believe there are two types of stomach - DIEP and TRAM but don’t know much about either except one uses less muscle. I did also hear today about a whole new type of recon which everyone was raving about but I didn’t read much further. I will look into it for you if you like and see whats involved so you could research it further if you’re interested.
xxx
hi ostrich, i would appreciate that thanks. my issue is i never gave it much thought about my own tissue esp when she said one of the ops using tummy involes breaking a bit of the rib cage. oh cant go there. i feel better that i know when its going to be i feel very very confident with my surgeon which is a bonus i can deal with the rest. 5 weeks of research now. oh well time for bed its been one long sad day but tomorrow is another and i am aware it could be worse. i hope your well thanks for listening to my ramblings love lainey xxx
Hi Lainey,
I have sent you an email with the link on it and a bit from the post of the lady who mentioned it, x
hi ostrich i got it thanks i have messaged you back, thanks again love lainey xx
hi ladies - Im so sorry I have not been here to give you some support - feel rather selfish having read back on everyones news - sorry 
Ostrich… big belated hug for you - so sorry I am late in sending some love your way - sounds like you have had a CRAP week and I hope things start improving for you
Lainey… I had been booked in for a DIEP flap but apparently a vein was in the wrong place so they did a TRAM flap whenI was under - never any mention of rib breaking … I have a nice flat tum where once hung a muffin top, so there is a silver lining! Please be strong … remember how scared I was? hey look at me now - I just got back from a fireworks evening at a friends where all the ladies wanted to look at the scars and new boob etc. I gladly flashed my new boob to cries of ’ its amazing’ and ’ wow’ etc etc HANG IN THERE!
Well I have done a week at work - am exhausted, but that may also be due to the fact that I have been to the cinema with daughter to see High School Musical 3 ( quite good!!) and two lots of fireworks displays… I usually only do a day at work, come home , dinner and bed - so to cram in extra social engagements is a but wild for me…
Could quite easily sleep til about midday everyday but thought it made sense to try and get back into the swing of things asap. Wish Id taken an extra week or two off now - but Im back so better keep going now!
I met a lady for coffee the other day who was in the bed opposite me at hospital and we compared scars etc which was funny ( funnier still that we both were in shock seeing each other dressed and with hair and make up on!)
Am still waiting for oncologist appointment to discuss radiotherapy.
I promise I will check in on a more regular basis and I only wish we could all get together in person…
Love Jenny xxx
Hi Jenny,
Its really good to hear from you and news from the outside world of work/socialising etc! Glad you are out there again, enjoy it honey!!
I have determined that I am going to force myself to live it up this coming week before the next chemo and plan in lots of things for the one good week it looks like I’ll have each set. Want to have nice stuff to look back on - after all life is for living!!!
Its funny isn’t it how easy it is to flash your new boob. I have no problem in getting mine out. I don’t know if its because it has no nipple or because I am subconsciously wanting all the “WOW, it looks great” that you do get. I suppose for them they have a vision of what a mastectomy and reconstruction looks like and are surprised that actually it looks the same (minus the nipple and plus a bit of scarring). Having just written that I have realised - its true - its not that bad at all! Another tiny step back up the self confidence ladder!!!
Have you any idea on how long you will have to wait for the Onc appt?
Lainey and Dot are in Scotland, I’m in Somerset - where are you?
xxxx
Jenny,
Did you see my bit a bit further up about somewhere I have found that has a topic devoted to phyllodes tumours and threads and posts in it on the subject? I can let you know where to find it if you’re interested, x
oh yes please - that would be good.
Im in Worthing - near Brighton on the south coast.
I should be getting an onc appt soon - and then theres a waiting list of about 7 weeks I think. WOuld have been nice to get this all out of the way this year, but never mind.
Morning Ladies,
Hope you are all well.
Dot, how was your weekend of pampering/quad biking etc? Did your “friend” make any other unhelpful remarks 
Lainey, how are you feeling? A bit brighter perhaps?
Jenny, hope you have recovered from your whirlwind social life?
My hair is coming out big time now. Not just on my head but under arms, lower down etc. It was slowly coming out over the last few days but from yesterday it seems to have cranked up a gear. Thankfully it is organised in its departure and much as I can run my fingers through my hair and have about 10 - 15 hairs jump ship there are no obvious bald patches (at least not at the front but I can’t see the back!).
My head itches and, as I know its only got a short shelf life left I tend to be sitting here running my hands through my hair and then staring at the furry animal that has accumulated on the desk in front of me. Part of me thinks, LEAVE IT, and you may have enough hair to look normal for maybe even a week and the other part thinks - JUST GO - I have to get used to it so just hurry up and be gone!
Won’t miss the hair down there though so it can fall out as much as it likes LOL!
I thought I was going to be ok with hair loss but having tried a couple of the hats and caps I have today tucking my fringe and long back bits in I look OLD and WEIRD! Made sure I had a cuddle from OH this weekend as struggling with feeling sexy what with boob, back wound etc and just KNOW its gonna be worse once I am a shiny hairless thing!
xxx
Hi ostrich yes im a lot better thanks. just trying to get my head round things now and accept its all go now. i too don’t mind hair falling out from down there as it would save me prepping myself. ostrich when i found out about all this genetic stuff i lost around 70% of my hair at least. the gp advised it was stress related. i had an occassional amount here and there. at that point my hair was lovely,long and thick. and where there was a gathering of hair there was also a bald patch. i know slightly how you must be feeling . i hated it and at the beginning cried when i saw myself. but i bought loads and loads of bandanasas i couldnt get used to a wig. but i got all different colours and often matched colours with my clothes and after a while it began to be part of me as where i would automatically get dressed i automatically put one on. please dont think i think everyone should have my attitude as you are dealing with it due to cancer and it must be awful. but i have a photo which i wish i could show you and its with me and hubby cuddled together in a tent and im bald and i love that pic as i still look okay it doesnt upset me . i just wanted you to know i do understand how you feel about your hair. i know though you will get through this but try different things along with the wig love lainey xxx
Thanks honey. I have lost hair before due to alopaecia from stress,though not as bad as your stress alopaecia, resulting in a 4 inch bald patch at the front of my head at its worst and occasional patches since but am struggling with the whole NO hair idea. Don’t have a lot of choice though do I?
I do wish you would stop apologising for NOT having cancer when you are still going through exactly the same as us - treatment, fear of cancer, loss of self esteem etc. I guess with your genes you too run the risk that you could later develop cancer around the site of the breasts or skin so there can’t be a lot we face you dont so please STOP.
xxxxx((((((((()))))))))))))))xxxxx
hi ostrich, i will stop saying sorry think im too used to people in work reminding me i dont have cancer ( stupid managers). yes i am still at increased risk there are a few other cancers im at risk of also such as skin and bowel etc so yes my risks are high there too. dont really fancy peeling skin off to prevent it though lol… im having a do nothing day today except housework which is already done. i was extremley tired after 12hr shift last night but had a great sleep and feeling better today. had to speak to genetics today to help compose a letter for work as their silly comments are getting worse my manager stated yesterday in life where there is a negative there is a positive and mine is when surgery is over with i will have a nice set. they are playing this down all the time which is difficult so need to reinforce things to them either that or i will really lose it. this is the same one who asked when i get sticker nipples can she have one to put on her head as a joke. i tried to complain to her manager and was asked if im over sensitive? buy hey such is life and every dog (literally) gets their day. love lainey xx