I am scheduled to have a bi-lateral mastechtomy and reconstruction on both breasts on 31st August. The operation will take 9 hours at St Thomas’ Hospital.
I have loads of questions and I am really scared about how will manage to cope with my feelings in the run up to the operation, how I will feel immediately afterwards and what will the results be like in the end.
I really want to back out because I am afraid of the operation but, nonetheless, I think that having the operation is the right decision - although I don’t have BRCA 1 or 2, I have 17 family members who have had BC, including my mother and my sister who have both survived… but then I keep on thinking ‘what if I regret it?’ ‘what if something goes wrong?’. Can anyone advise me? I would very much like to hear about other peoples experiences.
I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
That is a crap thing to have to go through. I have to have a mastectomy because I have breast cancer. I am going to ask if I can have a bilateral mx because I don’t want to live with the fear that the cancer could return in the other breast. I also don’t think that I want reconstruction. But I don’t know how I will feel as it get closer to the time.
9 weeks is a long time - try not to let this spoil your days until then. Allow yourself a small amount of time each day to think about this and then put it away and get on with life. Meditation and visualisations can help a great deal, maybe you could join a local group or visit a library and get some books out.
I am sure someone who has been through what you are facing will be along soon and give you their story and support.
In the mean time please accept a huge hug from me.
Hi Rachael, Have you visited BRCA Umbrella and FORCE websites? Their advice/experience is just as relevant to your situation even if you don’t have a recognised gene mutation. BB
It is obviously your choice and even if you did inherit a BC gene it doesn’t necessarily mean you will get breast cancer…or you might not get it until much older. But I just wanted to share my experience with you.
I am 33. My mother and grandmother died from breast cancer and my aunt currently has it. I have been worried for years that I might get it and have talked to various GPs and even a genetic specialist about scanning and preventative surgery - all of whom told me I was too young and not at a higher risk, but that I could get screening from 40 onwards. This may be true, statistically, but I always had it at the back of my mind and was always worried about it. I also know a few people who have had preventative surgery and immediate reconstruction and their boobs look fab and they are really happy with them. However, I decided to put my worries aside based on the experts’ advice and concentrate on having children first, breastfeed them, and then look into preventative surgery as it seemed that a matter of a couple of years in my early 30s wouldn’t make too much of a difference.
I was diagnosed last month with breast cancer just as my husband and I were looking to start a family. I have now been told there is a 50-70% chance that I will be left infertile - that is, if I get through the cancer bit. And the treatment itself is an emotional and physical rollercoaster. I really wish I’d stuck to my guns. I’ll now have a double mastectomy, but I will have to live breast-free for at least a year, and will then have reconstructive surgery that will not look nearly as neat and as nice as my friends who had the preventative surgery in their 20s.
It is obviously a HUGE decision - and, for me, hindsight is a wonderful thing! But with such a strong family history, I bet you are the same as I was, worried that breast cancer would come and bite you on the a*se at any moment. This surgery will take this worry away and let you live your life.
Have they offered you counselling? And have they shown you pictures of what the results should be like? Practical questions such as these should be very easy for your surgeon to answer. The eomtional and psychological side can be helped through counselling and weighing up how you would continue to feel if you did not have the surgery (constantly fearful that you will get breast cancer?) and how you would deal with it if you did get it to how you will feel with replacement breasts (like you have lost part of you).
It’s a tough and brave decision. But I absolutely know what I would have done, given the chance!!
hi rachael,
I am due to have to have a double mx with reconstruction on 24th aug at nottm city hosp.I had a lumpectomy last aug but then discovered i had the brca1 gene.i will then have my ovaries removed.I am 50 yrs old so its an easy decision for me,i will be relieved when its over as i feel like a ticking timebomb at this present time.My biggest fear tho is that i have two daughters aged 29 and 27.They have both been referred for genetic testing.I will feel so guilty if they are positive.when i first used this site when i was diagnosed last august i found some wonderful ladies who had been thru the same thing and their comments really helped.keep chatting,rachael,theres always someone who can reassure you,best of luck honey,
dib.xx
sandytoes,
Im so sorry you didnt get your surgery before diagnosis.I too asked for genetic testing many years earlier but it couldnt be done.I feel that i wouldnt have had to go thru chemo and rads if i had had preventative surgery.good luck honey,i will show your post to my daughters if either are tested positive for the brca gene,im sure it help in the tough decisions they may have to make
dib.xx
Hi there, i had bc 14 months ago,had a lumectomy chemo rads and arimidex,i have since found out that i have thebraca2 gene,my mum, grandmother and 2 aunts all had bc before the age of 45,i was 45 when i wad dx,it was recently thought that i had secondaries in my spine which luckily for me turned out not to be,i am due to have a double mx in september time,i wish the time would fly by,as the secoundary scare i had last month made me realise i was doing the right thing,by having risk reducing double mx with expanders fitted,this was my option,as i have tough left breast tissue due to having had 20 rads,i hope all goes well for all you ladies,take care,sandy x
i had BC at 37 and again at 40… my mum had it at 57 and her grandmother in her 60s. i was entered into the brca 3 research trial and found not to have any of the gene mutations they test for after the first tumour. i had more rigorous testing through the diagnostic laboratory following the second cancer and was found to have a brca2 mutation… mum was tested and didnt have it… came from dad with no BCs on his side of the family in 5 generations.
i had a lumpectomy and rads after both diagnosis and chemo after the second one.
i had a hysterectomy and ovaries out last sept… was due to have bilateral Mx around xmas last year but changed my mind… just couldnt face it at that time. went back for more counselling and will probably have surgery about feb next year although unsure what type to go for… keep changing my mind every time i think about it.
if you dont feel in a good place about having surgery right now you can ask to defer it and even have some counselling before you go for it.
Hi Rachael
I am 32 and had breast cancer four years ago - dx at 28. No one in my family had had breast cancer before so the medics thought it was a nasty ‘one-off’. Since then my younger sister was dianosed, also at 28. The family has now been tested and we all (Mum and four children) carry a faulty BRACA1.
Although I am healthy at the moment I am scheduled to have a double preventative mastectomy and reconstruction on 27th July. My sister who has not had it is also due to have one later this year.
I am terrified of the surgery and the recovery - especially as I have two boys aged 4 and 6. All I can say to you is that if you gave me the option of having the surgery or of having another diagnosis of breast cancer I would not have to think twice about it. The thought of going through another horrific year and putting my family through it again is just not an option for me.
As scary and as unfair as this is for me it will be a walk in the park compared to living with this every day.
Sending all my love to you. Think about it carefully and don’t rush if you are not ready. It is never going to be an easy decision.
hi ladies,im due to have double mastectomy on 24th aug but am having ovaries removed on aug 9th.has anyone had this procedure done,would like to know what to expect recovery time,being able to drive etc
cheers,Di
It’s a few weeks since I first posted my worries about having risk reducing surgery at the end of August. I actually lost my post and have only just discovered all your responses. I was amazed and really touched by all your support, especially by the experiences you have shared, the advice and the virtual hugs! It makes so much difference to know feel that I am not the only person going through this process. Your experiences have made me realise that I am actually really, really lucky to be able to make this choice and hopefully avoid breast cancer. I have decided that I am not going to waste too much time worrying about it in advance. I shall just have to deal with it as it happens and remember that it is a positive step forward.
Good luck with your ops in the next couple of weeks Jo and Di. I wish you a quick recovery. Jo, I also have boys aged 5 and 6. I hope yours will be gentle with you! I will be thinking of you.
Have you had some counselling yet and talked through your fears? To lessen your worries over the years will be fantastic. You’ll hopefully be able to put the fears of breast cancer behind you in a month’s time and move on feeling freer.
I really hope it all goes very, very well and the results are better than expected (as I said before - I have friends - 2 sisters - who had preventative surgery and are over the moon with their new boobs!).
I’m a 41 year old mum of 3 with BRCA 2, who had a bilateral mastectomy with DIEP flap reconstruction surgery 6 weeks ago, and fully understand your worries and concerns. Unfortunately a few things went wrong for me, but I strongly believe that it was just really bad luck, and I don’t regret having the surgery, as I am now pretty much risk free (I also had my ovaries removed a few years back). Just keep focused on why you’re having the surgery done, and try to stay as positive as you can.
I am a 40 year old mum of two girls with 10 female relatives having had BC, including my mum at 29. I wanted to have double mastectomy after my youngest daughter was born but was dissuaded by breast surgeon. In January I was diagnosed with BC and asked again for double mx but was not allowed until I had seen a psychologist, which would have taken too long at the time, so I had lumpectomy and am currently having chemo. I have now seen psychologist and am due to see the surgeon next week to discuss when (not if) I have the operation. I really wish i had stuck to my guns earlier and had the op 13 years ago, because that would have been preferable to going through BC. chemo and all that stress.
Good luck to you xx
If it’s any help, I had diep surgery at St Thomas just over a month ago. The usual ward to end up on (although they can’t give any promises just in case there’s a bed shortage) is the Alan Apley ward on the 11th floor. I was really impressed with the standard of nursing there - and several student nurses and doctors said that it was one of best-run wards in the hospital. I was also impressed by the surgeons. There were four other women having similar operations when I was there and we all came through it very well (we all had follow-up appointments at the same time). If there are any other questions, do PM me.
I saw onc yesterday and he recommended i had the bilateral mx before radiotherapy to chest wall. I’m pleased about it but suddenly it all seems very close and i have to admith to being a bit scared! But I know I made the right decisions and am glad it is going ahead soon (probably mid September.)
hi,
should have had my ovaries out on 9th but after sitting in the hospital waiting room all day at 4.45 i was told they were running late and my op was cancelled,grrrr!!it is now scheduled for tomorrow,12th.Hoping i feel ok on saturday as i have a leaving do for my daughter who is off to afghanistan for a 6mth tour on 26th(2 days after my planned double mx(if thats not cancelled too)good luck to all my fellow fighters out there,back soon.xx
hi all,
had ovaries and tubes out on friday,feel ok now,having double mx with reconstruction next wed 24th,feeling a little nervous but know its my only option,will post again when its over