Hi rachaelr and all you other ladies,it is great to hear some good news as far as mx and recons,i am due to have my risk reducing bilatrel mx with expander surgery two weeks today,,i have been told my surgeon it can be cancelled even up until the last min,due to me not needing urgent surgery,i am dreading it,as you would,but i just want it over and done with,it is good to hear from ladies who have had risk reducing surgery,.hope all goes well for everyone,take care sandrae x
It is now 9 weeks since I had risk reducing surgery and I am so glad I screwed up the courage to go through with it! Although I spent the weeks prior to the operation feeling really anxious, the operation itself went well and I was up and about within a fortnight. I now feel completely back to normal and already forget about it most of the time. I am really happy with my reconstruction and because I had a tummy tuck to provide the tissue I now look better than I did before I started with a flat stomach and nice pert breasts ... and I never have to worry about breast cancer again!
Day 17 post surgery. All drains out now so its much easier to get about,still very sore back and front but nothing I cant cope with.very limited movement in my arms but getting a little easier each day.Had to have right boob drained last week as it was getting to `jordan` proportions but it didnt hurt.Go back on Tues for lab results so fingers crossed theres no cancer present.Im so relieved i had the op,hope all of you going thru the same thing are coping too.
Best wishes to you all,
boffy have either of your sisters had a genetic test for the known gene mutations?
with 2 sisters diagnosed in their 40s and no other family history this would make you moderate risk and they normally wouldnt consider risk reducing surgery unless you were high risk or had a mutation.... when you go for your genetic appointment they will look at into this and into the type of breast cancers your sister had as this helps to build a picture of whether its likely to be genetic or just a very unlucky coincidence.
let us know how you get on.
Di so glad your getting on so great after you surgery... well done you xxx
hi boffy,in the end its a personal decision but if you do carry the gene the worry is there noon till night,i feel so lucky to have been given the chance.its early days ,now 1 week after surgery,still very sore but i had 2 drains removed today,2 still to go but im up and about now,doing little things and exercising a little,went into work today to say hello and everyone was amazed at how well im doing,but i feel so good now about the future,its like winning the lottery,for life instead of money,yes its a big op but in the words of james brown-`i feel good`.
good luck with whatever you decide,
I am really grateful for logging onto this site.
I am starting genetic counselling in the next couple of weeks as both my sisters were diagnosed with BC at the age of 42 (both doing well thankfully) the younger one just a few months ago. My sisters have both mentioned preventative surgery to me as they don't want me going through what they and many of you have had to go through. I know it is very early days and no decision needs to be made right now, however I have been really confused, as feel I could never have piece of mind if I didn't have surgery, but also have been really worried about choosing the surgery route . Thanks to all of you I feel a little braver and know that I could be one of the lucky ones and to have this choice is a gift.
back home 5 days after double mx with back flap recon.have four drains in but hopefully 2 will come out tomorrow.First 2 days were pretty awful,then it got a little easier but the relief,mentally,is fantastic,I have to wait 3 wks for results but i feel as tho i have been given my future back and i am grateful that i had the chance of this surgery which my mum never had.Glad that i made the decision to have the surgery,best wishes to you all.xx
Harp,so pleased for you the chemo is over.ive seen my surgeon today,had flaps drawn out on my back ready for surgery tomorrow,they are much bigger than i thought theyd be.she also said i would feel like ive been run over by 2 buses and will look like the michelin man with tubes coming out of everywhere!!Feeling a bit scared now but know it will be for the best in the end.It will take 2 surgeons 5 hrs so thats a bit better than i expected.My eldest daughter was also tested for the brca gene and they said they couldnt find it,so that was fantastic news,just the younger one to go now,fingers crossed.good luck for your surgery harp and anyone else going thru this,will get back in touch when i come home and let you know how its going,love to you all,
hope your feeling ok after your op dib and good luck to both of you with your up coming mastectomies.
harp bet you cant wait to get that last chemo over with.... hope youll be feeling great again soon.
Well done dib and good luck xx
Had appointment with oncologist today and surgery booked for September 29th. Last chemo tomorrow! Hurrah! xx
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
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
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.)
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 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
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.
Good luck x x
You are definitely not alone!
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!).
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.
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
Posted for new user Jo.
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.
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 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
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
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,
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, 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
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.
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.
Best wishes Sam, BCC Facilitator
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.