Breast Cancer Now Forum

Hi again No problem answering your questions. I was 39 when I had my op. I was phobic about hospitals, and had to have hypnotherapy to get me there! As for the pain - I was petrified of the idea of the pain - but I hardly felt any. I accepted the pain relief they offered (a bit of morphine straight after the op, and then I went onto regular paracetamol and dihydrocodine, and then just paracetamol). I wasnt "woozy" or disorientated on painkillers, but they obviously kept it away. The nurses were fab and clearly dont expect you to be in any pain, so I wouldnt worry at all if I had to go through that again. The main thing I remember feeling at the time was the effect of the expanders under my chest muscles. It wasnt in any way painful - but came as a surprise - it was as if I had a sandbag on my chest - heavy and a bit constrictive. This eases each day as your muscles stretch (and re-occurs as your implants are slowly filled over the next few weeks). But on the first morning after the op I didnt dare breathe too deeply because it felt so strange. But the physio came round and showed me some exercises to do and I was soon mobile and getting used to the new me. As for the results. Yes I am very happy. I can see slight differences in each breast as they were man-made by two diff surgeons at the same time, but I doubt anyone else can tell - I have pert B/C cup breasts, and have reduced my chances of having cancer. best wishes Jane ... View more

HI Kerin I am so pleased you are feeling less despair. It does ease as time passes and you realise that you are not a different person - just armed with more knowledge than before. The fact that you are being monitored and tested is good, as like you say, it wont prevent cancer, but should catch it earlier. good luck with your decisions Jane x ... View more

hello loopylis27 I can only comment based upon my own experience, as I am sure surgeons will have different approaches. After my first meeting with my surgeon she sent me away to think about it, and to have a meet with my breast care nurse, and then I went back after about 3 months. It was then left up to me how quickly I had surgery after my second meeting with my surgeon. I actually took over 6 months to think about it! but once I had decided, then she fitted me in around my own work and personal schedule. I think I could have had it done within about 6 weeks initially - but my own schedule meant I waited about 3 months. As for your nerves. My operation has been a "process" rather than a one-off operation (as you may have seen from your sister). I feel it took about a year to sort out my body, have "tidy-ups" and to adjust to my new self (I also had my ovaries out in the original operation so I am menopausal too - which has taken the most adjustment). I had expanding implants under my chest muscles, and later had nipple tattoos, and my implant ports removed, and am very pleased with the results. I no longer fear cancer in a paranoid way, and am getting on with my life. The waiting for surgery is the worst bit - you are bound to be nervous - but there is no need to be (easy for me to say after the fact, I know - I was petrified!) Feel free to ask any other questions. best wishes Jane ... View more

Hi Kerin Ask as many questions as you like. I will try not to be biased - but I have found the mastectomy to be a very positive experience and outcome!The relief I felt, and continue to feel, has meant I know I did the right thing for me, as my fear of cancer was immense after watching my sister die just a year before finding I had the gene. I thought about it long and hard and saw my genetics counsellor a few times, as well as my breast care nurse. I was 38 when I had the operation. I needed hynotherapy to get me to the hospital as I was a hospital-phobic. I am very pleased with the results and have also had a bit of "tidying up" done and tattoos for nipples. I had a brilliant, caring, surgeon and so felt safe that she would do the best she possibly could. It is a very personal decision - you shouldnt feel rushed to make up your mind. And should you opt for surgery, take your time and weigh up all the options as you have to be happy with the size, shape, and aftereffects of the surgery. I know of many girls around the age of 30 who have had it done, and dont regret it one bit, but I also know that it is often not a one-off operation. Many have to have "tidyup" ops, and things can go wrong. It may be fair to say that it will take up to a year out of your life - but for many of us that is a small price to pay for the feeling that we are taking control of our future. Unfortunately it is your decision, but I would make one suggestion to you - Whilst you are making your decision, please do what you can to take advantage of the monitoring available to women like us : not sure what is avail to the under 30's but stuff like MRI scans, mammograms etc are vital to ensure any changes in your breast whilst you are deciding on surgery are spotted. Jane x ... View more

Hi Kez I am sorry you find yourself having to ask for advice on this issue. It is probably still a bit of a shock that you are a mutation carrier, and are having to think about preventative surgery. I was in the same position as you in 2007. It felt like a real blow to have to think about such things. I spent the immediate 6 months finding out as much info as I could - from my medical staff, breast care nurse, and websites such as breast cancer care. My breast care nurse was fantastic, and saw me on a couple of occasions to take me through all my options, and show me photos, and actual implants. The problem is, this really needs to be your decision. Some people find that regular monitoring is all that they want, others find that they want to be more proactive and choose surgery. It will depend on your own situation. I also joined in with a BCC telephone support group - though they didnt come into being until a lot later - but others on the support group had only just found out about their mutation, and we all found it a great help to talk to real people in the same boat (I note that one is about to start so you may want to think about joining in). In the end I had preventative surgery (including my ovaries out). I had a double mastectomy with immediate reconstruction using expanding implants. I havent regretted it. I am such a worrier that to get rid of my breasts was the most important thing for me. I will leave it at that for now, but feel free to ask whatever questions you want. take care Jane ... View more

Hello there. Sorry this is a long post!! I know it must seem scary at the moment, but I am writing to reassure you that being BRCA is something you can live with, and still have a relatively normal life. I was confirmed as BRCA2 almost 2 years ago. When I was told I thought my life was over - I was so scared. My sister had just died from cancer at 42, and I was 39 - the age she was diagnosed with terminal cancer. I felt history was repeating itself. With the support of my husband and friends, and some wonderful people at my genetics clinic (I rang my genetics nurse in desperation on more than one occasion) I slowly came to terms with the test result. I was referred to the breast and gynea consultants at my hospital, and was then on a bit of a rollercoaster of finding out as much info as I could, and making the decisions on what to do. My first decision was that I wanted to know the worst - as I was under 40 I did not qualify for a free mammogram or MRI (I think this is different now), so I paid to have an MRI done(they are far better at scanning younger dense breast tissue than mammograms) to see if I had cancer already. Luckily I didnt. Then I spent the next few months coming to terms with the fact that as I was a worrier the best thing was to reduce my risk as much as possible. This meant preventative surgery. For a hospital-phobic this was a big decision. I had to have hypnosis to get me there! A year after finding out I was BRCA I had my breasts removed, and reconstructed, and my ovaries out, all in one operation. It has been a long recovery - both mentally and physically. I have been put into an early menopause with the problems that brings - sweats, memory seems to be rubbish, change in body shape, tests for osteoporosis and heart disease to name but a few. The thing I have realised with being BRCA is that no two person's experiences are the same. Physically we react differently to the operations, and mentally our "baggage" and needs are different. Amazingly I knew straight away that I had done the right thing for me - my relief at losing my time-bomb breasts was quite real. But not everyone goes through this. Having breast surgery can have lasting problems - I have had 2 "tidy-up" operations since (quite willingly!!); but I know of people who arent satisfied with the results of their surgery and regret having it done. It may change your body image and sexual relationships. I dont have the life I had before - I am vigilant, I read anything I notice about breast and ovarian cancer - it is still a big part of my life - but I have amazed myself with my strength to go through surgery, and have found lots of companionship with other BRCA people - my closest peer I met through the BCC phone-support group. I wont tell you what to do, but I will give answers to any questions you have if I can. But please can I offer one piece of advise - be persistant with your medical practitioners - I (and my peers) have found that no-one cares as much about your health as you do - if you are a passive, quiet patient - you may find time drags and you dont get help/treatment when you need it. My gynea consultant had a massive waiting list - but at just under 40, and having had no kids, I knew that it was imperative I had my ovaries removed asap - I had to persist to get seen - and that took nearly 6 months! sorry this is so long. take care Jane ... View more

Or digital mammogram - they are meant to be more revealing on younger women. I believe there are some women who have had the surgery even though they are negative for BRCA1 & 2, I believe the history is so strong that their genetics teams believe they have a mutation yet to be found. Have you spoken to your genetics counsellor about a mastectomy? Best wishes Jane ... View more

Kerry I am glad that your GP took you seriously and gave you information that was helpful. I hope you feel abit less stressed by your situation. My experience of my Genetics Clinic was good, and they are the best people to give you advice on your actual level of risk, and will perform tests if they think it necessary. Not sure how long your wait will be, but at least you can focus on something being done - though dont be afraid to chase up the referral if you get anxious! best wishes Jane ... View more

Hi Kezibell Just thought I would put my oar in here!! It must be a worrying time for you, and you are right to be "assertive" in your own health care. I agree with everyone else, the receptionist shouldnt be deciding your treatment, and that if you are worried, your GP should allay your fears either by referring you on, or referring you for a private appointment. I would offer a couple of words of caution. Many NHS Trusts do not routinely offer mammograms to patients under 40, as there is a risk from early sustained radiation exposure caused by starting screening earlier, and because younger breast tissue is denser mammograms might miss more things. Your GP might be acting on this information but not explaining it to you. An alternative might be an MRI scan - but again many Trusts cannot afford to offer these free (even with a BRCA mutation confirmed I had to pay for mine as I was 38! (£400)) YOu dont say how old your mum and grandmother were at diagnosis, but it might also be co-incidence that they have both been diagnosed - tragic though that is - and you may need to do more research to confirm or deny a family history. I have found that the only person worried about my health is me, so assertiveness is the key unfortunately. Dont be fobbed off by your GP, and good luck with your appointment tomorrow. Jane. ... View more

Hi Emily I do have the Brca2 gene - so in some respects I was lucky and could take action accordingly. But the testing in our family -even to find a BRCA gene - took a long time. My sister was the first to be tested, and after almost a year they came back and reported that no gene had been found - It was only another 6 months after that that we were told she had the BRCA2 gene, and so our parents and myself could be tested. So, despite your long wait so far, because they havent found a gene quickly doesnt mean they wont find one of the common genes. And if they dont find a common gene, I know of many women who are considered and treated as high risk even though no gene has been reported - this is based on family history and/or the belief that they have a genetic mutation which hasnt been discovered yet. I would recommend that both you and your sister A) await the test results; B) if they show nothing - persue the genetics service at your hosp for all the help and advice they can offer. best wishes Jane ... View more

Hi Catarratto Do look at the BCC sheet that Lucy mentions because their pubs are really informative. As far as the family history unit are concerned, I would advise that you go along to your appointment armed with as much info about your family as possible - including people that werent asked for, as the more info you have the better they are placed to make a decision on your possible familial risk. The whole process should be done at your speed though, so dont feel rushed to have a test or any other things done until you are ready - but having them check out what the info tells them may be useful to you. They should also Counsel you as to the implications of testing, and what a family history may mean for you. YOu can stop or pause the process whenever you wish (i had 2 "talking" appointments and then decided I didnt want the test then, so didnt go back for a year.) A good family clinic shouldnt do the test until they feel you are ready to deal with the outcome. Best wishes, and get in touch if you have any other questions. Jane ... View more

Hi C You sound very calm about it all, which is good. I believe there are genetic links to many cancers - being BRCA for instance means a supposed higher risk of bladder, pancreatic, and skin cancers as well as others - depending upon who you choose to believe. However, i think the research for these is still in its infancy, so no firm recommendations apply. I would suggest that if you are concerned, then push for an appointment at the genetics service - because they will at least be the ones who have the most up to date information, and can prepare you for the pros and cons of counselling/testing, what to do about your children etc. It might be that there is no evidence of links and there is nothing they can do at present, but at least you will know for sure. best wishes and good luck with your lumps on Friday. Jane ... View more

Hi Leslee Check your inbox, I have sent you a message. jane x ... View more

Hi Leigh-Ann I am not a member of a support group, because there isnt one near me. I hope to be involved in setting one up at some stage, but dont really know where to start. best wishes Jane ... View more

Hello I have got BRCA2 from my Dad - this has been proven by genetic testing. I too wanted to know, rather than not, so that I could have prophylactic surgery. It is very individual as to testing etc, because you do have to be prepared to be confirmed as having the gene - not just hope to be confirmed as not having it. best wishes Jane ... View more

Lisa you are welcome to but in! you seem to be calling yourself a major baby, but what you have been through already seems to contradict that. I dont know as much about BRCA1, but I think there are similarities, but at different risk levels. If I can be of help then please get in touch. best wishes. Jane ... View more

Hi Mariead I have the gene, and had both operations by my 40th birthday. I havent had cancer, but my sister died of it at 42. Even knowing I had the gene didnt make it an easy decision to make, tho knowing I had an 85% risk of cancer helped. No one knows for certain what is around the corner. Many women have the operation(s) based on just family history alone, I think many of them assume that they may have a gene that hasnt yet been found. Your sister will have to make her own decision, based on what she knows at the time. I decided that no matter what happened (ie a miracle cure in 2 years time!) I would have no regrets having the op, because I made the best decision I could based on what I knew at the time. I still know that was right for me - my fear of cancer was greater than anything else. I am not sure what I would have done had I not got the gene, as I felt it sort of left me no choice - but with hindsight, I hope I would have still had the operations, because my relief at lowering my risk is very tangible. Best wishes to you and your sister. ... View more

Hi Mandy I havent had cancer, but am a BRCA2 person, and have had bilateral mast. I have found buying bras a nightmare since my op. My local shops dont stock any postmast lingerie - except my local M&S. I had a lovely appt with one of their fitters, but couldnt find anything to fit and be comfy - I am a 38A now, and they stock very little in that size. I ended up buying a maternity padded bra ( the most comfy one i tried on by far), but its padding after two washes squashes inwards as I dont fill it. I have recently discovered Nicola Jane online (they also have a shop in the South). They have been fantastic as they do free returns, and offer lots of advise. I will now buy any lingerie or swimwear from them in the future. Jane ... View more

Hi Jane I was very lucky that my workplace was very supportive and allowed me a lot of time off work, and a very gradual re-introduction to work. I know many people who go back far sooner than me, but it is incredibly tiring - especially as I went through the menopause at the same time. I will be honest and say that being menopausal as well probably lengthened my recovery quite a bit. In all, I had the op at the end of November, and was off until the following Feb - but tried to do too much too soon and went off again after two weeks trying to do 5 hours aday. I then had another month off and tried again in the late march - this time doing two mornings aweek, then 3 mornings aweek, then four etc , then 2 full days, then 3 full days and so on. I then had so much holiday to use up that I didnt actually return to work full time until Sept. But now am fully fit!! hope this helps Jane ... View more

Hi Jane I realise that different surgeons, and different parts of the country, offer slight variations on what is available to their patients, but I am happy to tell you what my surgery was like. Not sure how much detail you want, but feel free to ask any questions you wish once you've read it. my oopherectomy was done by my gynae surgeon first. Very simple, keyhole, 4 small scars, barely noticed it. Then my breast surgeon and her team moved into theatre. Overall I was in theatre for five and a half hours. I was previously large-breasted (EE/F cup), so my surgery was fairly extensive compared to some (if you r below a B/C cup, you may find your surgeon does far less invasive surgery, and your original breast "envelope" is retained). My surgeon also removed the nipples (large breasts means retaining the nipples is difficult because they end up in the wrong place! and my surgeon doesnt like the bc risk that nipples present). My breast surgery began similar to a breast reduction - W-shaped incision - but then all the breast tissue is removed - and I had expanding implants inserted behing my chest muscles into a breast envelope made from remaining skin. Where the envelope is stiched back up, my surgeon also created a nipple-shaped "scar" on each one, which is the basis for my nipple recon. (I have since had these tattooed and they look good). After a few weeks the implants had regular doses of saline injected to stretch the muscle and skin to a B/C cup. My hot flushes began after about 5 days, and quite frankly were unbearable - the lack of sleep from the night sweats, combined with discomfort from having to sleep on my back at first, drove me to the docs! My GP refused me HRT until 3 months after the op (risk of DVT), but then put me on Tibolone - recommended for BRCA women as its steroid-based, not hormone-based. that has been very effective. I am very pleased with my results, but I have a friend who had the same op as me yesterday, and recently she asked if she could look at my breasts to see what she was letting herself in for - very understandable last minute nerves! she was pleasantly surprised by my end result - which I think says more than I could ever say about it. I am very positive about it, but I have spoken to women who had infections, poor surgery, and other issues. There is much emotional turmoil after the operation, and intimate relationships are tested - mine has ended up very strong - but there are times when I want reassurance that I am still attractive. But for me these are small concerns compared to those of the many women who have cancer. I dont envy you having to make all these decisions, if I can give any other info, do ask. best wishes Jane ... View more