My sister died end of march this year age 35, I got married June and then I found out about 6 weeks ago i am a brac1 gene carrier. It was passed down my fathers side and my aunt had ovarian cancer.
Has anyone else a brac 1 gene carrier?
I am hoping to have a bilateral mastectomy with tissue expander and then permanent implants put in in by january.
Has anyone any advice?
Cheers
Katie x
Hi Katie,
sorry to hear you have a BRCA 1 mutation. I’m BRCA 2 but didn’t find out about the mutation until after I’d had bc. I see you’ve already started the ball rolling by looking into preventative mastectomies. You are also entitled to ovarian screening, you may at some point wishes to have your ovaries removed but in the meantime I would suggest you insist on screening.
Best wishes xxx
Hi Helen
I’m so sorry you got breast cancer. It is such a cruel and unforgiving disease.
Thanks for e-mailing me.
Yes I do feel that the staff at Nottingham who contacted me about all this could have saved my life. i am 33, the same age as my sis was when she got breast cancer.
I have to have my ovaries removed after I have my family so hopefully by 40. My surgeon recomended I didn’t get screened for Ovarian cancer as it is experimental and he feels it can end up being invasive and it isn’t wise to interfer with them as we are trying for a family. i didn’t fully understand but don’t want anything that could spoil my chances of getting pregnant.
Are you recovered from your cancer or still being treated?
Best Wishes
katie xxxx
Hi Katie & Helen
I have had bc last year and when I came to the end of my radiotherapy (after 6 months of chemo) I too was diagnosed with BRCA1, Mine too is down my fathers side and my Aunty died of ovarian cancer and my cousin, her daughter has had and survived ovarian cancer.
Its such alot to take on board when you are about to get on with the rest of your life after surviving and coping with bc,
I am having a hysterectomy after xmas and then the double masectomy and reconstruction, fingers crossed, June/July time.
I cannot offer advice, only a sounding board for you as I know what you are going through!! BUT give yourselves the best chance of survival and have the preventitve surgery, as drastic as it is girls,
Onwards and Upwards!!
Take care
Julie xxxx
Hi Julie & Helen
Thanks for that. I have my bilateral mastectomy, tissue expanders and implants booked for 31st dec!! That’s one way to spend New Years!! Hopefully it won’t get cancelled on me though. I just want to lower my 80% risk to 5-10% and move on with my life. My sister never got this opportunity so i know I am lucky.
I have been mainly on another forum site which may help you. This is the link:
phpbbserver.com/breastcancer
Best of luck with everything
Katie xx
hi katie,
nice to find someone in a similar position to myself, i lost my sister aged 35 to cancer and my gran mother, we too have the braca 1 gene in our family. i have decided to have my ovaries out and have breast surgery, with tissue expanders, it is scarey but i have been seeing my surgeon since april this year and still not made my mind up to take the big step, but like you said we are lucky to have the change as our sisters didn’t.
michaela
Hi Michaela
I’m so sorry you too have lost your sister at such a young age.
Sorry can I ask how old you are and when your sister got her cancer?
I really think you are making the right decision.
What really made me decide was the fact that we were trying for a family and I realized that if I find a lump now and have chemo it would probably make me infertile and so I want this doing right away so I can get on with my family. Also it is harder to be recovering from an op with todlers to look after.I think that it is more important to know that you have a future than to always have at the back of your mind that you may have cancer. I started to really think I had nothing in life to look forward to.
Doctors keep advising people to have a family first but my surgeon and nurse said the opposite as they had witnessed some awful cases of ladies getting cancer during or just after pregnancy with brac1 or 2. Since using another forum I have heard of at least 5 ladies that have had or know someone who has got cancer whilst pregnant or just after. I think it is very worrying
I am looking at my surgery on new years eve as an end to the hardest year of my life and a way forward to a long and happy future. I know all my grief , hurt and stress will catch up with me and I will probably be a bit messy but will be able to let it out and then pick myself back up again and start afresh.
You will know when the time is right for you.
Sorry to waffle
Good luck with it all.
Katie xx
Ps. You may find it useful to know about the other forum I use.It is mentioned in another of my posts. When you have made about 20 posts you can get on a private forum for people who are having ‘preventative sugery for those at high risk of bc’. People have posted photos of before and after surgery that I have found useful.
hi katie
i have now got a date for surgery, i will be having mine done in exeter on 17th jan, where abouts are you? but my bc nurse has put me in touch with a very kind lady who i will meet with after xmas who has had the same op as me, just so we can chat and she will let me see her end results. i have decided to keep my nipples and the surgeon will cut under the breast crease, the plastic surgeon will then take over and reconstruct. hope all goes well with yours, it is a big worry. my sister was 34 and died a year later, i’m now 41, this hapened 4 years ago. my mum has the faulty gene but at 63 (fingeres crossed) is fine and not having any surgery. i will check out the other site
michaela x x
Hi Michaela
That’s great news that your surgery is booked. I am based in Nottingham. It’s a shame I keep meeting lots of lovely ladies in the same position as me but everyone is always far away.
I will be terified no doubt as soon as xmas is over. It is a week on monday. Scary stuff!!
It is so weird preparing for xmas without my sister as she was such a big kid and loved presents. I really miss her.
I hope you have a lovely xmas and new year
katie xxx
Hi katie,
I tested positive for BRACA1 gene, and lost mum 2yrs ago to ovarian cancer, she had breast cancer at 32 fortunately she survived BC had a mastectomy & recon, but OC got her. She carried the gene and passed it on. Her mum also had BC and died at an early age 30-40’s.
I am thankful in one way that mum didn’t know she had passed the gene onto her daughters, as i think she would have been devasted. I had prophylatic mastectomy 3 months ago, and am still recovering now… Still not able to work, have had a few infections etc… But like i mentioned on another thread I am finally starting to come through the other side as they day… Although I am up at this rediculous hour (3.55am)
Have not been sleeping, doc gave me sleeping pills, did not take one last night… Oh how i wish I had taken it now, got a funeral in the morning of a family freind who paseed away of cancer, and i know i am gonna be exhausted!
Hope your feeling better after your op katie.
Tracey xxx
P.S What is the difference between BRACA1 and BRACA2 gene?
Hi Katie
You are welcome to use our ‘Ask the Nurse’ email service for information regarding your query. You can access this via the ‘Support for you’ tab and the specialist nurses will be able to provide you with the information you need.
Best wishes
Lucy
hello there folks,
Im 18 years old and i sadly lost my mum to breast cancer at the age of 44 year old in Aug last yr … she had the BRAC1 and i am currently on the waiting list to go to the genetics to find out if i do have the BRAC1. its something i do want to find out but then again there is a part of me that doesnt. I just feel as if its just getting younger and younger.
xx Amiee
Hi Amiee
I am so sorry about your mum and really hope you aren’t brac1 too. It is such an awful thing to have to go through at such a young age. You like me must still be grieving as I lost my sister in March last year too age 35. It all seems so dark but you will come through it all.
You probably saw my previous posts but if not I am am 33 and found out I was brac1 in september. I just got out of hospital after having a doube mastectomy and tissue expanders so if you test positive and ever want more info on sugery I can offer you lots of advice if you want it.
I presume that as you are only 18 there is no rush anyway even if you did decide to have surgery.
I would like to give you info on another very useful forum that I use all the time but the moderators keep blocking it. The only other way is if you use Facebook you could contact me through it.(edited by moderator) ( I have blonde hair, a strapless top and am standing infront of a black long canvas with 5 flowers on it). They may block this too!!! GRRRR
Anyway if you need any info at all or just a friendly ear please don’t hesitate to contact me.
Take Care hun
Katie xxx
Hello all
So sorry for everyones losses. I can’t imagine how it must be for you all.
A brief introduction about me is that I am 33yo with BRCA1. I found out I had the gene 1 month after being diagnosed with breast cancer (September 2007). I am starting chemotherapy on Tuesday after a lumpectomy and lymph node removal. Unfortunately my mum has also just been diagnosed with primary and secondary cancer but her story is a lot more complicated than mine.
Katiecat, I am sorry about your sister. It seems so unfair.
I was really interested in your reply. I am having 6 cycles of chemo and then would like to have bilateral prophylactic surgery with immediate reconstruction. I would be really interested to hear any advice you or anyone else may have, where you went, what you had done. You seem to be ahead of me and it’s good to meet someone the same age who has been though what I will need to go through.
BTW, I am going to a BRCA1 carrier clinic at Guys Hospital on the 24th Jan, are you or anyone else going to it?
Also interested in the other forum. Is your name the same on facebook?
take care all
Nadiya x
Hi Nadiya
I’m so sorry you found you had breast cancer. I Really hope you manage to keep strong and keep positive through your treatments.
My sister kept very positive and was fascinated by the strange side affects that the chemo gave her. She managed to go out and have drinks with friends throughout her treatments by getting really used to the timings of it all. I really hope it goes as well as it can.
In terms of having a bilateral mastectomy, I haven’t found it not too bad at all. I had tissue expanders and will have them replaced in 3 to 6 months with a permanent implant. You have probably looked into this but expanders are like empty implants that they gradually fill with a saline liquid into a port under the skin to stretch the skin and muscle. I decided to have expanders as I didn’t have enough body fat to have it taken from my stomach or back. I am a size 8/10 and had a small 32b boobs. I am hoping to go up a cup size.
I had mine done in Nottingham City Hospital.
It was frustrating more than painful after the op as you can’t reach or move much for a few days. I felt very tight in the chest and numb but not in pain. They keep you dosed up on pain relief. In anwer to your final question Leeming. The thing that annoyed me more was the anti inflamataries gave me really bad stomach ache. I got them changed to ibuprofen which was much better.
I am finding now 2 weeks after my op the most annoying thing is that I get an extremely sensitive nerve knitting feeling under my skin when anything goes near my boobs. It is more discomfort than pain though. The expanders fel very alien as though you have a couple of solid rocks under your skin stretching the muscle.
I went for a check up on friday and she expanded me more and it really hurt ( wonder if it was too soon as they noramlly do it 4 weeks after op). I now feel very tight and uncomfortable. It is ok when you sit still. I managed from 3 days after my op to shower and dry my hair lift basic things etc. You just have to be careful lifting anything heavy. Everyone is different and I was quite fit from the gym so have found it all relatively easy.
I can’t help with the other forum as the moderators keep blocking it but I hope you make lots of (edited by moderator) on here.
Take Care and Good Luck
Katie L xx
nardy
What happens at the BRCA1 carrier clinic?
D
Hi Katie and D,
Blimey Katie, it’s a mammoth op really. Thanks for all the info. I can understand the limitations must make it very frustrating at times but I am amazed that you can dry hair and shower so soon after. Maybe you should ask why they expanded so soon. It might be that younger skin can take the strain but perhaps you should ask for peace of mind.
I think I can have the op in Hasting but they will only do one breast at a time and due to having so much time off of work it makes sense to me to get them done at the same time. I have read about skin saving mastectomies and think this is what I would like to do if possible as it looks like there won’t be too much scarring.
My mum had breast cancer 3 times so has had both breasts reconstructed but due to previous scarring they look quite messy.
I too hope to socialise during my chemo and I have had some really good advice from other posters on here.
D, the clinic involves speaking on a 1-2-1 basis with a counsellor, a breast surgeon, learning about clinical trials, a genetics nurse, oncologist and ovarian specialist. Something like that anyway. The clinics run on the last Thursday of every month. It is a trial project they are running for 2 years. I can keep you posted on how it went after my clinic on he 24th. (I’m assuming I will be able to attend altho the chemo might have different ideas).
Thanks Katie, good luck with the progress and let me know how you get on
Take care Nadiya x
Hi Nadiya
Best of luck with the clinic and your decision. I have heard of other people having a skin sparing mastectomy and it working well for them. If you look at my post on this thread dated Nov 10th it may be helpful to you.
Good luck
Katie xx
Hi everyone…
All of your stories are really sad :o( sorry to hear you have all been thru so much already…i am just curious how did you find out that you carried the brac1/2 genes??
Is there some sort of test you have had!?!
Big hugs xx
Thanks
S4mm13 :o)
After contacting my gp to tell him about my sister having cancer they updated my family history of cancer. My gran on my dad’s side had throat cancer and uterine or cervical cancer, her daughter (my auntie died) of ovarian cancer and my sister got breast cancer age33. The genetics people at the hospital have been doing research into brac1/2 and must have been given access to my files and noticed I had ovarian and breast cancer in my family so wanted to spaek to me.
As far as I’m aware they look for close relatives with breast or ovarian cancer especially mother’s and sisters but also other relatives that have been diagnosed with cancer before 50. Some people have heaps of relatives with these cancers and people that got it in their thirties. I only know beacause of my aunt and sister.
I spoke to the genetics team and they create a cancer family tree and assess your risk. Then I had to get my sister’s blood tested when she was alive and had cancer. Those results came back positive for brac1 and so I then got tested and was also brac1. It has been passed down my dads side of the family.
I have had double mastectomy and reconstructive surgery and yesterday got my results from my tissue that they removed and they came back clear. I have no cancer and now am at no increased risk. It was defiantely worth it!
Are you worried you are brac1/2? How old are you and do you have history of breast and ovarian cancer in your family?
I noticed in your other post that you are not very trusting of your mum. Hope she is honest with you.
Take Care
Katie xx