Have got a date for my mastectomy and have to confirm to hospital I will take the date. I cant bring myself to ring hospital as I am still in a state of disbelief about the whole thing. I decided not to have recon straight away, but now am having second thoughts. I dont know if I can cope with waking up with one breast. I went for that option because I just wanted to be in hospital the shortest possible time. The recon I would opt for means that I would have to go to another hospital a long way from home as the surgeons here cant do it apparently. Also this meant I would be in hospital for a week or more as its
major surgery. I feel I need more time to decide but when I asked for a few weeks before an op I was told it had to be done within 4 weeks of seeing the surgeon - because of government targets. Feel like just cancelling the whole thing and sticking my head in the sand. Finding it very difficult to think about having it done at all as have not been in hospital before and still have all the bits I was born with and have not had children so havent been through all that either
Hi, like you, i’ve had major wobbles about all of this…even to the point of having nightmares about it, where I refuse to go and have it done. The thing then dawned on me…do I want to live??and if the answer is ‘yes’, then I HAVE to be strong enough to face this thing.And yes, I DO want to live.I still harbour hopes that they will tell me the diagnosis was wrong, and each time I see my nurse, she tells me ‘no, I’m sorry, the diagnosis is not wrong’…and for a moment, I’m back to square one.This will be the hardest thing I have ever had to do…to willingly go to the hospital, to sign the form allowing them to perform this surgery and to go down to theatre, knowing what is to happen.I have opted for reconstruction immediately, because I simply cannot face the thought of waking up with my breast missing.For me, it is essential that I wake up ‘whole’ and complete.I have been told that I may need to lose my ovaries and if that’s the case, I shall actually opt for a total hysterectomy, something my doctor advised years ago, and which I was not ready for.Now, I am…and I so want to live.I have a great many things to do:I have children, all grown up, but i want to see their children grow up;I am on the second year of my degree…and i don’t want to be the first person to drop out of our course, I want to finish it; I want to go to many, many more gigs and enjoy the music and the sheer exhilaration of LIFE.And yes, I want to love and be loved, for a lot longer.I am sad about what is happening, of course I am…and getting my head around the fact that I am important to many people is a humbling idea, Of course, you think your family loves you, but sometimes, it takes the dark stuff to hit the fan big time for you to realise how much you matter to others.But ultimately, I believe you have to matter to YOU. Only you can do this, only you can make the decisions that need to be made.Do you matter enough to yourself to get through this? I hope you can…and i don’t think you should be rushed to make those decisions, unless time is of the essence.Talk to your breast cancer nurse again.Mine is wonderful, she never makes me feel my worries are foolish or unfounded, she takes me through everything honestly, patiently and with genuine concern.She knows I’m terrified and she tells me, it doesn’t matter how other women behave, it’s how I feel that matters, I am unique in every way and I should have the time it needs to make all the decisions that are right for me today.We can’t see into the future, so we must do what is right, for now.So, sod the government targets…you aren’t a ‘target’, you too are a special, unique individual, and you will make the right chioces…for you.Good luck with it.
Hi,
How insensitive to quote target times to you? The last thing you want to hear. I think these targets are a con anyway. During my diagnosis I needed an MRI scan which had to be done at the beginning of the menstrual cycle. I was at the wrong time of the month so there was a 2 week wait. I later found out that the clock was stopped on the 4 week target during this wait because “the delay was caused by the patient”.
I too had not been in hospital before, in fact I hadn’t been to my GP surgery for nearly a decade. I was totally unprepared for the tests, treatments etc. The whole thing was freaking me out more than the disease. I asked by bcn to talk through what would happen even show me a ward which she said she would do but this didn’t happen in the end. Perhaps you will have better luck. Once in hospital the time went really quickly and I had great support and companionship from the other patients (although it was a general surgical ward so no other bc patients). The booklet on this site “Your Operation and Recovery” is worth reading.
I had immed recon but had been undecided and the experiences of others on this site was a big help. I remember someone wrote that if you’re going under general anaesthetic you know nothing about it so it’s no worse to be under for 5-6 hours having mx and recon as opposed to 2 hours for mx only. There may be only one surgery required - depends on type of recon - what kind are you thinking of?
To give this the best shot you need to ready for whatever treatment you are going for. I know it’s hard but try not to be badgered into something you’re not 100% comfortable with. Have you tried the Breast Cancer Care helpline? I found it helpful to talk to trained people separate to the team treating me - it’s difficult not to feel your treatment will be compromised if you upset them.
Best Wishes
Misha
Hi Horsemad. I have’t had a mastectomy or a reconstruction so maybe I shouldnt give my opinion. But I found my lumpectomy a big ordeal mainly because of the whole thing of hospitals and surgery. You are going to be petrified and bewildered whichever procedure you chose and also feel mutliated for a while, whether you have a mastectomy or reconstruction, so you have to ask yourself if you really want a reconstruction. If you do, what are the pros and cons of putting it off to another time - if you get it done now, it will be one lot of anaesthetic, one hospital stay etc and one lot of recovery time. If you have it done later, I guess it will still be this hospital that does it so it means another journey, going through more surgery and more time off in the future. Is there any benefit (apart from psyschologically) to leaving it to a later time or are you just putting of the inevitable?
I wish you well whatever you decide
Cathy
Hi Horsemad,
I had a mastectomy in January after 5 months of chemo &, like you, had never been in hospital before & don’t have any children. I wasn’t offered reconstruction (think it was due to the amount they were going to have to take away & didn’t know what they would find when I was operated on) but had decided I wouldn’t even if I was offered it.
Thought I would be terrified going into hospital but strangely enough I was perfectly calm in the lead up to it & the day of the op. I went in at 8am & they didn’t operate til 3.30pm & I was in a room on my own the whole time. They wanted to keep me separate with having had the chemo. I was out of surgery by 6pm & having a shower on my own at 10am next morning. I then had a few paracetamol for about a week & that was it.
The scar has healed really well and is almost invisible & I can honestly say being lop-sided doesn’t bother me. I have a prosthesis I put in a pocket in a sports bra & no-one would ever know. I even went on holiday in June & wore a bikini on the beach without using the prosthesis & trust me, no-one looked !!
I just work on the basis that the cancer has been removed & if there is any chance of it coming on the other side, I will ask them to do a mastectomy there as well.
Having rambled on like this, it is ultimately your choice & like others have said, DO discuss it with your nurse or ring the helplines. I have to say I just went with what the medical people said but I have always felt confident in their judgements & been able to talk to them.
Good luck whatever you decide,
Liz
Thanks for your advice. I think im going to ring the breast care nurse and have a chat before confirming my date. She is very good but the decision is ultimately up to me I suppose. I have been put off recon somewhat by a lot of the experiences of people on this site. Cant sleep at the moment head spinning all the time. On one side I think, well I dont go out very much anywhere where I dress up, its only the summer that I want to wear tighter tops, the winter Im in fleeces and trousers as Im outside a lot,. I think its not what other people would think its what I feel about myself. I think all you ladies are wonderful you seem to be coping so well.
Hi Horsemad - just to add my tuppennyworth - I was told needed mx because of high grade DCIS - had big boobs and would lose more that half including the nipple. Was offered immediate recon (And reduction other side)and dithered about for a week before deciding I would go for it - fancied just stuffing rugby socks down the empty side initially- I had to have sentinel nodes removed to check they were clear as if radiation might be on the cards it can spoil the implant I was having - all clear so went ahead - didn’t find op too sore or stressful - delighted with results - from 36FF to 36D - got a bit of a bombshell a couple of weeks later when i went to see my lovely consultant - they had found a small but very aggressive (grade 3) tumour in the removed boob - that was the only time I burst into tears - not cos of what they found but because had I not had mastectomy it would not have been found. Anyway was told that sometimes if person gets news like that they become very bitter and regret having the recon implant - I quickly said that if I was totally flat on one side with a ruddy great udder on the other then I would be free falling down…down…down! I said I was so pleased i had it done - I felt good about myself - I looked good, no longer weighed down with big boobs - great improvement in my posture and general self-esteem.
Have been having 6FEC chemo - last one on 29th Oct - yippee! Not had bad effects - mainly fatigue - so I am one of the lucky ones. Will be starting 5yrs of Tamoxifen/Arimidex.
Just thought I would let you all know on here that something positive can actually come out of something totally crap!!
Let us know what you decide - meanwhile love and hugs xxxxxx
Wow Narnia, I just wanted to salute you for your wonderful rant! I would like to keep that somewhere and bring it out from time to time to show people who need to find some courage. I found it really inspiring, thank you
Jacquie x
well Jacquie, thankyou…like ‘horsemad’, i have good and bad days, but what i wrote, i genuinely feel, and it all sort of came out in a big rush of emotion!
Good luck with your op. can say i was soooo scared the nurses even let me out the night before surgery for a few hours, they could see the look on my face, even with pemeds couldnt sleep at all. The stats might be what they work to but where I am (back of beyond), they changed their mind frequently for masectomy to lumpecotmy to mast. and recon and finally cos of rads just masectomy, I was sooo bad as since dx was determined i might have a slim chance of handling it if woke up with new boob. I didnt get that option and to be honest now, for me, probably came to terms easier than having to look at something I might not have liked. how I will make myself go in for surgery for delayed recon I dont know but although awkard I deal with just one boob and believe me being a 42E ain that easy but its sooo doable and in the long term if it means the cancers gone everybit is worth it. had chemo and finished rads today. Due to family history have to have ovaries removed soon but didnt want to do hysterectomy as wasnt necessary. I think I will find this harder as widowed, 35, and no kids. Oppps sos for taking over thread. Hope you talk to your nurse, mine was fab!! You are stronger than what you think, I am amazed at how much I have dealt with over last 9 months when before this I cried about going to dentist as so scared and terrified of needles.
xxx
Horsemad,
I really feel for you and the pressure you feel you are under. But, as Narnia said, the point of this is to carry on living! Ultimately that’s what all this is for. I personally wanted the cancer out of me as soon as possible, and quite appreciated the speed at which everything was done, because I didn’t have time to think really!
I’m sorry you have been put off by the stories of some users of the website (probably including myself). Many of us have no problems at all, or only little ones. We are looking for support and tend to forget that newbies may find it all very intimidating. I know I’ve come through some easy times and some hard times over the last year - but the important thing is I’m still here for my teenage children and OH. The best tip I can give you for that is don’t read this website too far ahead. Take each step as it comes. It’s all do-able if you take it in manageable chunks. Honestly!
All the best to you - and I’m sorry you had to join this particular club!
Westie xxx
Hi,
I totally agree with Westie…I wanted the cancer out of me as quickly as possible. I felt like I was living with an evil entity inside me and couldn’t bear to look at my boob during the days leading up to my op. The releif when I woke up and realised it was gone was immense. I must be ‘different’ but I didn’t give recon a second thought…there was no way I was going to have another op. I hadn’t done any research ot heard any bad stories, I just knew in my head that I didn’t want to go through more sh*t…I didn’t care that I had lost a boob. People who are special to me and love me, love me for the person I am inside, not the shell that is what you see. Corny I know, but it’s true.
I haven’t regretted it once…in fact, I met the mostly lovely man since my dx and it hasn’t made one bit of difference. Life goes on and can get better.
Sheana x
I am posting this on behalf of new user Lea
Kind regards
Lucy
An understatement to follow…Its very very hard when faced with loosing two of the things which emphasise feminity…hair and boobs. I’ve nearly lost all my lovely (I do say so myself!) long hair and will loose one of my boobies next year after my chemo. I can really emphasise with how you must be feeling. I’m treating the loss of both as steps to getting better and seeing them as such is helping me treat the losses as a positive ones.
I have had great fun (yes!) having my hair cut to a fab bob, to a great crop and to an even shorter short back and sides (I really don’t want a GI Jane). And I know when I get near to my Mastectomy I will be absolutely terrified but I console myself that it’s hopefully a final nail in my cancer’s coffin rather than in mine! And all the jokes about free boob jobs can’t help but make me smile…
Everything (thankfully) can move so fast following diagnosis its hard to think and take stock. I do hope that you find the help and support that you need. Sending you a warm hug and love
Lea X
Hi Horsemad
Have been reading your thread whilst waiting for some advice on the “reconstruction” section. I was in your shoes in May 2006 although I couldn’t have immediate reconstruction because of where the tumour was postioned on my breast bone. I’m now at the stage where I’m going in for reconstruction in November. I’ve found the last two years without my boob very bearable. I even wear bikinis on the beach with my soft boob inside my bikini top. I’ve been swimming in the sea like this and lie on the sunlounger (under the sunshade).
You must confirm your date. You’ve got a whole lot more living to do and it is bearable one boob or two.
Good luck - will watch out for your posting.
Anniemay
Sorry, still wobbling!
As date getting nearer find it all unreal. I think if I thought that woudl be the end of it it might help but all the other things come after, rads. tamoxifen, maybe chemo. Feels like the end of the world. Think that because diagnosed with DCIS and its an unknown I feel its not really cancer. Know it can be in the back of my mind, and take my hat off to all you ladies coping with worse but still feel the same.
Don’t apologise for wobbling! We all wobble at times on here, well I certainly do and I’m over 2 years since dx…it’s allowed!
I know what you mean about it being the start of things…you feel totally overwhelmed by it all at the moment and I understand, really I do. I felt the same…but, you DO cope and you DO get through it. Often in life, the thought of things is worse than the reality and you build yourself up, always imagining the worst scenarios. Lots of women sail through the treatment so why shouldn’t you be one of them? I think this is where the internet/media/magazines etc can make things worse. We are bombarded with informaion about breast cancer and generally on the TV anyway, the dramatic cases are what make interesting news…you don’t hear of the many woman who have treatment and then just carry on as before. It’s not quite that simple but I hope you see my point.
Anyway, you are at a very difficult point in the ordeal at the moment but it will pass…you will get on with treatment…you will get through it. Just you wait and see.
Sheana x
I hope you are right ! During the day when Im out and about I tend to push it to the back of my mind, but in the evening it keeps hitting me. I still feel like walking away from it all and not having treatment. I think because I have been having such domestic/marital problems over the past year I am in a very depressed state to start with . If it hadnt been for the credit crunch etc I would have moved out by now. Perhaps its just as well I didnt as other half is only family Ive got. Hasnt helped as every time I open a paper its full of people with breast cancer ! Athough my life is pretty boring, I would give everything to going back to that now as this is overwhelming me. Feel like life will be on hold for ever as next step to be overcome. I admit I am a physical and emotional coward, never been brave at all. I wonder if this wil change my mindset and make me brave and decide to go hang gliding or bungee jumping. Never done anything risky intentionally in my life !
Hi there,
please please phone your hospital, and arrange a meeting to discuss your fears with them - they are trained in this and will know exactly how to help and advise you and do tell them of your emotional state as regards your domestic/marital problems so they have the whole picture. This is a very difficult time for you with all you have going on and I just want to give you a big hug and tell you that like all of us - you will find the strength to get through this. Maybe by going to a hospital further away and having to stay in a bit longer may be beneficial to you as you will be away from the miseries at home and that may give you time to sort those things out in your head? from what you have said I feel that your self esteem is low right now and maybe coming round from the op with no boob would be too much for you so you need to make sure that whatever you decide is right for you and no-one else - its time to put yourslf first now and sod everyone else. You are already brave for posting on here and should be proud that you were able to do that. Keep posting no matter how small a thing and we will keep replying - we are all here to help one another and in a few months time you will be on here advising and helping others too - you just wait and see! If your evenings are the worst then I guess this is when you have nothing to occupy your mind so go find something to do to take your mind off it all or get blind drunk that usually works for me lol!
Take care, make that appointmet and stop worrying
Love hugs and support
Clarabelle
this isn’t risky…this is about YOU.I’m with you on the wobbleboard, so how about we try to keep it steady together eh??You aren’t doing this for your OH, this is about you and no-one else, and you deserve to be fit and well again.I’m absolutely bricking it too…i don’t know what my future holds, and i have days when i sit here and think…oh s*d it, is it worth all the pain, the chemo, the radiotherapy, the hair stuff and not being able to do the things I want to? Well, I am about to find out!! But I am certain really deep down, that the answer is yes, yes and yes again.There is a life to be lived and you will absolutely get through all of it, marital stuff as well, I promise (and I never intentionally tell a lie!)…today, to cheer myself up, I went out and bought a sexy new bra…ok, i won’t be able to wear it for long, I may never wear it again, buy my gosh it made me feel better.i’m going to wear it on Tuesday to my appointment with my surgeon and I know it’s silly and I know it’s vain…but I want to show him how important these two little bumps are to me…does that make ANY kind of sense at all???At the very least, it makes me feel good and womanly…and I fully intend to feel that way again soon, even if ‘soon’ is a year away.Come on, let’s make this bungee jump together!! 
oh and by the way, I got my lovely gp to prescribe a very mild sleeping pill for me…and it really makes a difference…i was waking up 6, 7, 8 times a night and all i could think about is my op.Now, I sleep like a baby…a very noisy one though, i’m waking the whole house up with my snoring, but at least I get a good night’s sleep!!