Double mastectomy in May (hopefully)

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1

Hi,

Ive just turned 30 and was told in September 07 that I have BRCA1 gene - I have various family members who have / have died of Breast Cancer and my Mum died nearly 6 years ago of Ovarian and was also a BRCA1 carrier.

The Hospital have been great but it’s taken since September until now seeing different consultants / on different waiting lists before I’m on the home straight! I still have no date (consultant is now on annual leave until 14th April) but I hope to have a definite date not long after and my Breast Nurse opes my op will be in mid May. I am having reconstruction with 1 stage expandable implants and have decided to go from an A cup to a B cup - i am having my nipples removed too and will have nipple recon and tatooing later in the year.

Im very nervous now about my operation - ive never had an operation / stayed in hospital so even that is scary! Im most worried about how i will look after my operation and also worried about how my partner will feel (even though he is extremely supportive and says he doesnt care as long as i am well and we grow old together!).

I can see some of you have told others about your operations which has been really useful but i was wondering about the pyschological impact the operations have had on you - did you feel like crying everytime you looked down? (that is what i am expecting to feel like) as i think they won’t look like boobs as they wont have nipples. I think i’ll feel very tearful and self conscious but know i have to keep reminding myself that im doing this for a reason and its hopefully going to save my life.

Any comments / thoughts on this would be much appreciated and also if anyone else has any hints / tips for pre and post op it’d be much appreciated.

Lots of love xxx

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Hi Emma

I have had preventative mast and recon (one side, waiting to in for 2nd) and the psychological impact for me was nowhere near as bad as I expected.

I woke from my op with a HUGH feeling of relief that I no longer had this awful decision to make. Friends said before my op, and now afterwards, they think I am very brave to do this, but I think it would take far more bravery to do nothing.

I am in a new relationship (6months) and I was worried how this would affect everything. He has been very supportive and initially I said I would not let him see me naked until after both ops and nipple recon. But now I am totally comfortable, even without a nipple. I am quite the opposite to what you fear. I do not look down and cry but I sometimes find myself looking down my top as I have also gone up a cup size and feel very pleased. I cant wait to get second op done.

I read some of the other threads on this site and there are some entries which make hard reading and it acts as a remminder why we take this drastic action.

My hints and tips for pre/post op are;
Take a good book and ipod into hospital, also I found my mobile phone very useful. My poor partner got many a phone call at all sorts of hours when I was feeling a bit tearful or lonely.

Ask your BCN what type of bra your surgeon wants you to wear. I didnt do this and had to send my partner out shopping (if he sticks with me after this…).

Have tops that do up at the front, much easier than going over your head.

MOST imprtantly; do your exercises. The sooner you get the arm back in use the better.

Good luck. If you have ANY other questions please go ahead.

Jackie.

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Thank you Jackie, thats really helpful… I will make a list of everything I need to take in with me and also ask re: a bra, they have told me not to wear underwirse for about 6 months.

Ive got to say that the majority of posts on the forum all say that its not too awful and some like yourself say they enjoy being a bit bigger!!! Im just a bit concerned as Ive suffered with depression in the past and been on medication and don’t want to get depressed again. I too have told my partner he wont see me without a bra on until ive had the nipple recon but maybe i’ll feel differently too once ive had the operation?

Have you had expandable implants? If so did it hurt each time they were expanded? Also, are you a BRCA1 carrier? If so will you have your ovaries removed do you think?

I think the scariest thing is the unknown (like most things in life) and I hope that once ive had it done it wont be as bad as i thought it would be.

I just keep reminding myself that I am lucky as i havent got breast cancer and having to face this operation and know ive got to go through months of chemo too - i can hopefully have this operation and then get on with the rest of my life.

Lots of love xxx

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I had a double mastectomy 6 weeks ago, in my case it was because cancer had been found (in both breasts at the same time) so it was suggested that I seriously consider a bilateral mastectomy. Because everything happened so quickly I didn’t really dwell on how I’d feel about how I’d look at the time.

I decided not to have reconstruction at all, I’m going for prosthetics.

my partner and I discussed it and I decided that we’d both look at the same time so I wouldn’t feel embarrassed or anything. I was really surprised by how nice and neat everything is. As was he. Turned out he was more worried about looking shocked than seeing the new me.

I’m actually very glad I made the decision I did. I also decided that I wasn’t going to wear the little soft prosthetics they give you if you don’t go for recon when out and about. I just wore baggy clothes for the first 2 weeks and slowly went for slightly more figure hugging to allow people to get used to my new body shape. I’m a fairly athletic build and was only a C cup before so no one really noticed.

So do what you feel comfortable with, but you might like to talk to your partner about what he’s most worried about with regards to how you’ll look because you might be suprised.

Post surgery everyone was worried about hugging me in case they hurt me. I just told them hug me gently and I’ll scream if it hurts OK :slight_smile:

I’m 6 weeks on, out walking with the dog everyday, weeding the garden, back at work and pretty happy all in all.

Now that I think about I cried at the idea of how I would look, but haven’t been bothered by it since.

I talked to my local health food shop about things I could do to aid with healing the scars and was told that making sure you take plenty of omega oils for a month before the op is a good idea as your skin needs it to help with healing and I took that advice and I think it has helped a lot so you might want to have a chat with your doctor about what you can start to do now to help you bounce back (if that’s the right choice of wording :wink:

I’ more upset about the tummy I’ve gained from sitting on my bum for a month but I’m working on that now :slight_smile:

Lots of love and you’ll adjust, but you can’t predict how you’ll actually feel, and that works both ways, you might feel better than yo think.

Angie

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Hi Emma

You sound as if you are going into this with a positive approach, I can understand your concerns about becomming depressed again though. I think as long as you keep up your attitude, but do not hesitate to seek help if you feel you are becomming to feel down. After all it could happen to any of us at any time and just because you have been depressed before should not influence you.

Angie has a good suggestion about looking at the same time as your partner, I wished for a while that I had done this. I tried to describe what my new boob looked like to my partner and I think I was causing him to worry, or build up an image in his mind, one day he said ‘why dont you just show me’. I instantly felt so much more comfortable with the ‘new me’ and it was no longer a mystery between us.

I have had silicone implants with lattissimus dorsi recon. My mum tested negative to BRCA 1 &2 but I was still put as high risk due to the high incidence of breast, ovarian, bowel cancers and also leukaemia.

After my mastectomies I plan to have my ovaries removed also. I am 40 later this month so I have been told I will have HRT until I am 50.

Try not to worry or be nervous about being in hospital, it really isn’t that bad. The best thing to do is tell those caring for you how you feel. I am a nurse and I have worked on surgical wards, yet I was also nervous beforehand. I decided not to let ward staff know what job I do so that I could ask questions and not feel embarrassed. Keep reminding yourself how lucky you and I are that we do not have to go through cancer treatment on top of surgery.

I hope you get a definite date to go in soon. Keep us posted.

Jackie x

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Hi Emma

I’m 33 and found out I was brac1 in sept 07 too. My sister died March 07 age 35 of bc and my dad’s sister died of ovarian cancer when I was 14 before the age of 50. We had no other family history of bc and if my sister hadn’t got bc would have had no idea. Coincidentally my husband lost his mum to bc and she died age 35.

It all happened so fast for me as I demanded to meet with a breast care nurse and surgeon and saw them 3 weeks after my result. They strongly recomended surgery before starting a family and by early November I got my surgery date booked for 31st dec.

It is about 13 weeks I think since I had my bilateral mastectomy with tissue expanders and I’m doing fine. It was a huge relief after the operation and the anticipation was the worst bit! I have had some discomfort but no really bad pain even straight after the op. I was very pleasantly suprised with the results even straight after the op. I had very small boobs so it was probably easier for me but I woke up with the expanders expanded to at least an A cup. I was glued together and had no dressings other than a thick cotton wool/ gauze laid on top of me. I kept my nipples and my scars are only 5cm in length and really weren’t scary at all.Many of my forum friends had theirs removed and are getting tatooed ones and they look fine. I am delighted to have gone up about 2 cup sizes (I am now between a b and c cup) and curently have very round and pert boobs but still have the expanders in. I found the expanding process uncomfortable but hilarhious changing size every few weeks!! I even tried all my bikinis on again recently! I meet with my surgeon in 2 weeks as I have completed all my expansions to arrange the next operation to replace the expanders with implants.

Emotionally I didn’t cry once about my scars or new boobs and was prepared for the worse! You have to just think of them as work in progress straight after the op. These days the surgeons can do amazing things! I If you go on the bcpals forum you can see photos of post op pics.post on the genetics bit and I will tell you how.
I have been fine about my operation and recovered very fast but am still grieving for my sister so have had a few up and downs from that. I also have shed quite a few tears recently over friends that I thought I was close to that turned out to be ‘fair weather friends’. I have also put on a few pounds since my op (mainly from eating too much) as I used to go to the gym at least twice a week! I would say the one thing I am least paranoid about are my boobs I am more bothered about needing to tone up the rest of me!! I have always been fairly vain but love my scars as they make me feel proud that I was brave enough to sacrifice my vanity for a long healthy life!
I really loved being off work for 10 weeks as it was great to have a rest emotionally and physically. If you stay positive about the whole thing after the op you should be fine.

It is extremely hard before the operation is booked and you will feel some relief even from booking the date. It is very natural to be very scared about the op. I too had never been in hospital before but it really honestly was fine. I was strangely so calm as they wheeled me down to surgery and shed no tears. I suprised myself.

You are 100% doing the right thing and at least you can live a life where you can feel like you actually have a future and that dark cloud isn’t at the back of your mind expecting to get breast cancer.

I want to wish you the best of luck with it all and say that I am always happy to help with any questions you have or even just to be here for you if it is all getting hard for you. I was all over the place before my op so I know how hard it is.

Angie
I’m so sorry you had to get cancer first. I know what you mean about the tummy thing that is all I keep worrying about! You were very brave not to get them reconstructed but at the end of the day there is more to us ladies than a pair of boobs! Someone came up to me before my op and said oh no you can’t remove your boobs as that is what defines you as a woman! What complete nonsense! There is more to me than 2 lumps of fatty tissue!! Obviously it is a very hard decision and is a major thing but a long and healthy future is more important!

Jackie
I agree with all you said and it is braver (bordering on suicidal) to do nothing! I too have read alot on these forums and having watched my big sis die within 18months of getting the disease know that this really is the only safe option.
i’m so glad your new partner is supportive. Times like this really sift out the good blokes from the useless ones!! My husband has been amazing too!

Take care of yourselves

Katie xx

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Thank you so much to you all for commenting on this - I feel better already just knowing that you have all gone through it and are fine. Jackie - I think youre right in that even though ive suffered with depression before I may be OK and if not then to get myself to the Doctors and get some help… i suffered with depression after my Mum died which was probably a different type of depression - more grieving i suppose?

I am having a 1 stage operation with saline and silicone implants so will have valves in my sides (in my ribs i think they said) and the implants will be ‘pumped up’ like yours katiecat but they will stay in permanently (and the valves too unless they are very uncomfortable).

I think Angie’s advice re: my partner looking at the same time as me is a good idea - i’ll just keep worrying about it otherwise and like you say hopefully it won’t be as bad as both of us think.

I havent seen any pics post op - just ones a few months on when nipple recon has also be done so not at all sure what they will look like immediately after the op - imagining all sorts (a bit like they’ll like frankenstine ish!).

Thank you and if I think of any more questions I’ll be sure to ask… I’ll let you all know once I have my date and I start the count down.

Lots of Love xxxx

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Hi Emma

my sis and i ahve had the same sort of cancer invasive lobular within a year of each other, so we are worried now whether we are starting a genetic trend.

i opted not to have re-con at the time of the mastectomy in case it affected or might be affected by rads later - i have v pale skin and burn easily. i think i may well go for re-con later because i find the prosthesis quite hot to wear.

i first looked at myself with the surgeon who woke me up to check me post op. he asked if i had looked and i hadn’t because my gown was tied with witha double knot and lil ms dopey couldn’t work out how to undo it!! so he undid the gown, said ladies first and asked what i thought… hmmm it’s flat i said!! As bright comments go… not the best!! i now can’t remember what i looked like with 2! For me, anything is better than having a tumour. i have been on anti depressants in the past and was anxious that it might return but i think i have some sort of post tumour removal euphoria!!! if you do start going down in mood, please go for help before you go down too far - there are peopel out there to help.

my bloke lives 5 hours away and couldn’t see me till a week post op…when the time came i just said…ok… you show me yours i’ll show you mine. he was fine - relieved i think that it was just a neat line.

I admire those of you who have had to make the decision to take action now, i wish you all the v best.

i was in a room with 4 other women - they were gynae patients but lord - 3 of them snored!!! The one who didn’t had no hearing so she was the only one who got good sleep!!!I know i snore too so they were probably cursing me as i was cursing them but i’d take some of those yellow foam ear plugs into hosp next time!!

take care Jennifer

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I was in a bay with 5 other women and we had a daily, morning disscussion about who had snored the most, got up to the loo or talked in their sleep. It is amazing what you talk about in hospital. We had a celebration everytime each one of us had our bowels open for the first time since our ops.

Jx

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Jennifer - im sorry to hear about your cancer - i know that i am lucky in that i dont have this added worry and can just concentrate on getting over the operation and not having radium / chemo at the end of it. Thank you for your snoring story - it really made me laugh! I will definitely take some yellow foam ear plugs with me as I get very grumpy when i havent got much sleep!! :o)

Thanks for all your comments xxxx

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Take an eye mask as well as they seem to just turn lights on in the middle of the night when new patients come in! I was on a ward where I was the youngest by 50 years! Felt like I was in an old peoples home!!

I have a list of top tips and things to take that I compiled for someone else if you need one

xx

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hey Emma - it’s ok - better to just notice a funny nipple and have to do it in the space of a few weeks sometimes… from what i see on here most people just get on with it. I

OH LORD… other people’s bowels!!! am laughing

Drink lots of water in hospital - it does make you feel better - flushes the anaesthetic out of the system? Eat the food or have some brought in - the more you eat and drink the sooner you will get home and you will recover faster at home. same as get out of bed as soon as you feel able - mobility is regarded as a plus by staff - ideally get up and go for first wee in cardboard hat in the bathroom rather than having to do it in bed!

oh and don’t be suprised to walk down to theatre - i hadn’t been in hosp for ten years before this and hadn’t expected to be told to put my slippers and dressing gown on and walk!!! it was fine and my younger son came to the door… actually there was another reason… which may make you smile.

ok i’m 49… 2 sons 19 and 21 at uni. my elderly mum was staying at Christmas and i left it to the boys to decide which would take me in to hosp with a 5.30 getting up time and who would later take mum home. Younger son opted to take me to hosp, so the day before i gave him ample change for car park (hideously expensive and pay on exit). So… we all go down in lift and at exit floor the theatre person said ok - i’ll hold the lift, say goodbye till later… he says no i’ll come with you…walk to the operatign suite and he gives me a huge hug and i say ok bye for now… and go in. a few mins later a laughing theatre technician comes over and says ummm…your v embarrassed son has no money to get out of the car park, he spent it when he went out for a drink yesterday…

i am nonplussed…my cash etc is locked in a cupboard upstairs… i have a venflon being put in arm… what am i supposed to do??? I am tempted to say let the ratbag wait till i am on the ward… they v kindly sorted him out but i think it was cupboard love that took him to op suite doors! he is always v charming but ALWAYS the one in trouble.

hey… the mri tale can wait for another day!!

keep talking to people!! by the time you have your op i’ll have hit the 5-0. You are young and have loads to do yet and enjoy - i’m glad you are making the most of your chances.

Jennifer xx

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Ah bless him - I hope my partner will be allowed to come and see me before my op - i have to go in the night before and stay so not looking forward to that as know i wont be able to sleep with the nerves - may ask them to give me a sedative!!!

Katie - ive seen a list of your things to take with you on another post and printed out! I had missed off a dressing gown though so i’ll make a note!

xxxx

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Hi everyone

Jennifer you make me laugh! I guess whatever happens you have to try and see the funny side!! It is such a surreal situation hospitals!

Emma

I went to the hospital the night before, claimed my bed, upacked had my bp checked but went hope and returned the next morning. You can ask and see if they will also let you do this. I live quite near the hospital though! You have to wash with unscented soaps and wear no moisturizers on your body etc but you can do that at home.

This is probably a bit in advance but here are a few things you may want to take:

Things to Take:

Front fastening pjs(zip or button down)- I took 3 pairs: 1 velour one, a silky one which was good if you get too hot and a button down one.

A soft towel

freshen wipes / flannel

moisturiser lip balm, and handcream

Eyemask and ear plugs (helps heaps)

Ipod

books/mags

mouthwash

don’t forget to remove all nailpollish before the op and wash with unscented soap and wear no make up before your op

I borrowed a hairdryer from the nurses

slippers and bed socks if you get cold feet

Here are some tips:

If you have a cannula (a plastic port in the vien in your hand) and it is no longer being used ask them to remove it as it really aches after a while)

The antibiotics and antiinflamitaries can give you really bad tummy ache, dizziness etc. Don’t panic it isn’t an infection! I got them to swop one for ibuprofen and that helped.

Coca cola and salty crisps seemed to make me feel better if I felt a bit rough! Think hangover food!! My husbnad got sent for a big mac meal one night!! Water is better for you though! Also maybe get some probiotic yogurts or take tablets (check with nurses first) to prevent thrush and help protect tummy.

Hope this helps

Katie xx

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hey… one of my roles is to laugh - it makes stuff feel in more proportion… hmm maybe we do a new thread! oh the MRI thing was funny…

Emma - i’m thinking i want katie to pack for me when i go on hols - brill! Katie - do you do ironing and cleanign too???

Jennifer

xx

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I know - its all very organised, im the type of person who always forgets something though however organised i try to be!!

Jennifer - whats the MRI story??? I may be having one before my op.

xxx

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ummmm MRI IS HORRIBLY LOUD, i knew that… but it is loud - if you have one try and think music

am taken in and they pop thing in arm…

in my innocence i thought you lie on your back. no… on your front and i am doing my best as not well co-ordinated person. finally they say you need to put breasts thru the holes.

ok if you said at the beginning i would have done that!.. so breasts thru holes and they say just popping nipple caps on. at the end of loud thing, they say ok - u can sit up. gah i do inelegant sitting - def no cleopatra. look down at nipple caps and say - oh that looks like codliver oil capsule.

it is she said

i’m laughing like a drain as she says oh - u can get down now but it was too high… and i am sat there failing and then realise the door is open for next MRI person who was poorly sick because he was in a bed… but both he and porter are enjoying seeing a full frontal… i may have put that poor man back MONTHS in his treatment.

i still laugh about it - i lept of bed and fled - bright pink and doing ohmigod…

jennifer

xx

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Oh no!!! How embarrassing!!! (but very funny!) you poor thing - i’d have been mortified!!! Thank god for lifes little ‘moments’ to make us laugh at times like this!!! I will prepare myself if I do end up having one then and try to keep my modesty covered!!!

xxxx

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One thing i learned v fast is that like having baby there is no modesty!!! I reckon my chest has been seen by about 42 ‘strangers’ since November!! if a yob in the street ever yelled ‘show us yer tits’ I probably would!!!

Keep us posted on your op date

Take care
Jennifer xxx

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That is funny but embarrassing!! I actually feel like I could get my boobs out at any point too!! I used to be a bit of a prude but when surgeons, nurses etc etc have looked at you, you do get numb to it all. As they aren’t really my boobs it doesn’t bother me! They look great though too which does help!

Take care all

Katie xx