Hello,
I am new to this website but need anyones advice if possible as I am very confused. I have recently been told I am a carrier of the BRCA1 mutation and have been given the option of a double mastectomy and reconstruction if I would like as a pre-emptive measure. I am 29 years old and really do not know what to do for the best and I am getting myself in a tiz wondering what is the best. Any helpor advice would be very much appreciated.
Kez
I am so sorry you are in this position. If you don’t get any informative replies soon, perhaps it would be a good idea to ring the helpline for a chat. Did the doctor/hospital put you in touch with a breast care nurse? If not, perhaps you could ask to speak to one next week.
Ann x
Hi Kez,
You might like to visit facingyourrisk.org and BRCA umbrella. These sites have a wealth of information and very knowledgable members. The first one is american and there will be plenty of advice for you there. personally I don’t think you should rush into making a decision just yet, not whilst your still very confused.
Best wishes x
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
Hi Kez
If you’re interested in joining the support group that janew5 mentions do give the helpline here a ring and they will explain how things work to you. Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 9-2
Kind regards,
Jo, Facilitator
Thank you so much for everyones advice I really do appreciate it - it is all I am currently thinking about and is driving me crazy. I shall look into the support group I think I need someone who is not my mom (who is also BRCA1 carrier and ovarian cancer survivor) as she feels alot of guilt as I have got the gene mutation from her.
Jane - may I ask how old you were when you decided to have the preventative surgery - I know it makes no difference to my decision but I just wondered.
Kerin
Hi Kerin,
I’ve only just joined this today but I am 26 and 6 weeks ago had a double mastectomy and reconstruction with tissue expander implants. I would never go back! The result is excellent and I am feeling really well.
On the other hand though the decision came about after a lot of genetic counselling and meeting surgeons and breast care teams after finding out I had the gene 3 yrs ago. My mother and grandmother had died of cancer and I saw how I wanted to change the story, the decision shouldnt be made lightly and the support of your friends and family is the most important.
In my situation I felt so much better knowing that I can concentrate on my life, having children and being ‘normal’ until I have to think about the ovary situation.
Where abouts are you based? Is there a good genetics team near by?
Rachel
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
There is MRI and breast check available for under 30s (or there should be). The MRI would be onece a year as would the breast check. The Mamo is only for other 30s.
Jane and Rachel,
Thank you so much for your advice I realy do appreciate it and I think I am slowly coming to terms with the long term affects this will have on me. I am based in Tamworth (so come under Warwickshire) and I do have a lovely genetist but haven’t contacted her since my diagnosis in February and do not know who else to contact really. My doctors surgery are very good (particluarly on the Ovarian Cancer side) and have recently been for blood test and and Ultra sound to double check (and will have blood test every year for life) and I can start having MRI scans from the age of 30 - but these obviously don’t prevent cancer just catch it before it spreads too far (hopefully. I am feeling much more positive about things and it now doesn’t seem like such a pool of despair!!! x
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
Hi,
I have BRAC1 gene, and have had cancer 3 times now, twice before I found I was a carrier. My daughter was gene tested, and counselled around considering an elective mastectomy soon, and ovary/tubes removal after she had had children, with an emphasis that she should not leave it too long. She was 26 at the time, and I first had breast cancer at 34.
Because she has seen my reconstruction work, which is very good, she said she would go for the double mastectomy, and consider the ovaries after having a family. as it happened she does nt need to as she is nt a gene carrier.
I had my recon done via a tram flap-ie they use your tummy-fair bit of raw material for them to work with there! Another friend had the same, and hers is better than mine. Only tip i would say is dont bother to get a nipple reconstructed, it has all but disappeared. But the tattoo is excellent, and makes it look like the nipple is still there, by shading.
I do hope that you get the support you need to make this difficult decision.
If you cant talk to your Mum, can the hospital put you in touch with someone who has been through it and could offer you some insight into their thought processes.
I live in Kent and had all my tram-flap done at East Grinstead-Royal Victoria Hosp-tattoo as well.
Take Care