thank you so much for sharing your journey .
my genetics results came back on 22.1.2021 brac2. i had left my breast removed april 2020 after MRI scan and biopsy i had confirmed i had 2 tumors and my receptors was positive . After surgery they confirmed there was 3 tumors and took lymph nodes.
i was lucky at that time my lymph was clear and a oxy test showed i had a low percentage of it returning. But i have had recent core biopsy on the lymph in my armpit on the left side due to swelling . then i had my geneticists confirmed. my head is in a spin but i will make the right decisions for me . like yourself im 34B/C and now i will be considering reconstruction as i will be having the other breast removed and dont now much about implants etc .
How are you doing ? Been a few years since we spoke.
I didn’t have surgery the lady consultant really was against it and upset me so much that I went back to Mr Grover. I thought that 2 years had passed since being diagnosed and perhaps now that I was getting older just have the mammogram every year.
I suppose I really should have had it straight away after diagnose with Brca2 but at the time was waiting for a prolapse operation.
my daughter is doing great after having her double mastectomy 2017 she had to go back and have a second operation due to one of her replacements flipping in 2018. Every thing is going just fine now.
How are you doing now? How’s the family ?
love you hear about how your life is going .
I’m waiting again for another prolapse operation being waiting since August 2019 and its got a longer wait due to Covid.
Hi there, I’m also brca2 carrier and having only recently found out at age 35 feel I’m facing a similar outcome to you.
I have consultations re mastectomy and I know it’s the right thing to do for me, my predicament right now is deciding weather to try for a family first and then have the surgery? Due to covid it’s not looking possible for surgery for me until summer 2021 so I fear if we don’t start a family soon I may risk being able to have a family at all.
after going through the surgery do you imagine you could have done that after your children were born?
I just feel a little stuck time wise and not sure which is the best option for me
Happy birthday !!! I hope you are having a great day xxx
It is so confusing isn’t it? If you have the gene regardless of risk they should offer you the choice of surgery. My brothers counsellor told him last year that there was little to no chance we had the gene in the family and sent him away. Only that I persisted and tested positive did he get his test, now he is also positive for the gene. I’m absolutely gutted for him, but so glad I persisted in getting tested. He has 3 children so they now risk also having the gene which is so cruel for them.
My middle brother is not getting tested as he has no-one to pass it down to and my youngest brother refused to get the test even though he has a teenage son. Since my other brothers diagnosis he has changed his mind.
if I were you I would persist with it - it is your choice and your right!!!
let me know your decision
take care xxx
Found out last week whilst on holiday that my elder brother also has the mutated BRCA2 gene. Absolutely gutted for him as he has 3 children. He has an appointment with his counsellor next week so fingers crossed they can give him some positive news.
‘My 2nd surgery appointment is on the 5th July with the breast nurse specialist to discuss psychological impact etc. So ready for this and hoping for my surgery around October. It has been agreed a double mastectomy with dermal sling reduction implants. So ready for this surgery.
Hi, Im a 34 year old woman, last year i found out that I had the BRCA2 gene through genetic testing. Straight away i wanted to have the operation to have both my breasts removed and reconstruction, but i wanted to speak to someone who had gone through the operation before, before i made my decision. Unfortunately, no-one from the clinic wanted to speak to me about their experience, so i am still waiting. I would like to talk to someone about the operation. Is there anyone on here willing to have a chat and so i have all the information i need?
Sorry i have taken so long to get back.
It is awful when you have in your mind that you what to go a head with the surgery and the consultant says no.
The same thing happened to me in Feb when I saw my consultant she doesn't think that i am far away from the national average now and I now have an appointment to see a family history consulant to work out my percentage. I think that should have been done 18 months ago. She also said that my breast are too large to do implant reconstruction first , I would have to have a breast reduction and a year later do the double mastecomy with implant reconstructon.I was told by her registar that she perfers not to do implants.
I think every consultant have their own ways and preferences. If I had gone straight down the route of having the operation, I was orginally under a male consultant but was awaiting another operation and I decided to change consultant to a female, my operation would have been done probably last February.
My daughter who found out she had inherited the brac2 , saw the consultant June 17 again sept17 and had her operation Oct17. She is in her 30's and she had nothing else to wait for.
I think when the consultant doesn't want to operate , it does put doubt in my mind 'should I have this done'.
Have you had your ovaries removed yet? I have 7 years ago, I am 60 in June and I have to say since finding out I have the gene my life as been totally different, I am anxious, and feel stressful most days.
i have had a risk reducing double mastectomy with immediate skin and nipple sparing diep flap reconstruction
i don't think you need to be overly concerned with losing stomach strength as no muscle is taken with Diep
recovery is longer but it is classed as the gold standard reconstruction and is not likely to need much in the way of follow on surgery particularly like me it would be a double so mostly symmetry is achieved better .
where in the country are you?
Hi J - big hugs. Having this mess around is not good. Go with your gut, and don’t let anyone change your mind for you. This is your life they are talking about. Is there any way they can do it sooner than a year
? I hope they will for you as this whole process is very stressful.
my gynae appt is next week and think they will offer me a full hysterectomy. Before the BRCA diagnosis they offered to remove my ovaries laperoscopically but wanted me to lose weight for that. Started in jan and lost 20 pounds already, but now I know I have the gene I am so focussed on losing a lot more. Speaking to the medical secretary who was extremely helpful, she said they will probably not do it laperoscopically as my surgeon doesn’t do that but there is another really good surgeon that may, so hoping that that is not the case. I have also had my Breast surgeon referral made 4 months earlier than they suggested as they realise I am not going away and agreed to see me earlier. Just waiting on my call with an appt date. I want to get all my surgery appts before I go to Thailand at the end of may, so when I get home I am ready to go.
I am 50, my mother developed Breast cancer at 53 and ovarian cancer at 56. The ovarian killed her at 59 so no time to waste.
keep in touch and if I can help in any way I will. Big hugs xxxx Clare xxxx
I’m hoping for some help to sort out my spinning head!
I recently had Breast reduction surgery and the tissue test revealed I have atypical ducal hyperplasia. As I I have a high risk of breast cancer I have been advised to have a double masectomy. Having just gone through breast surgery it’s a pretty traumatic thought having to face it all again.
Part of me thinks I should just get rid. I always hated them and despite a 6 size reduction I’m still a D cup! Another part of me thinks having had boobs how would I cope without? Also is my chest going to be a mass of scars?
Then there’s the tissue issue. I don’t want implants as I’m concerned it will prevent detection if any tissue is left behind and I develop cancer but the option of using my own tissue means that recovery is longer and I might lose muscle strength. I’m active and happy to work at regaining it but don’t want to compromise future activity.
I’d rather get whatever I have over and done with in one go rather than consider yet more surgery in the future.
I just keep talking myself around in circles....
Mammogram all clear, breast surgery referral sent and gynaecologist appt booked for the 23rd. Onwards and upwards xxx
I live in South Wales (Bridgend) but was tested in Cardiff. No children, and post menopausal so time is off the essence for me. Already decided double mastectomy and implant reconstruction. I just need to get my letter detailing next steps. Updated mammogram already booked for feb 14th xxx
Let me know how you get on with genetics consultant and Brest consultant.
I will let you know what happens at my next appointment with my consultant.
I think you both lost our mothers young and like you say we don’t want to go through it too.
Are you married with children what do they think regarding the Bcra and do they have comments .
What health authority are you under.
Thank you so much for your reply. I am 50 and waiting for my letter from genetics to outline what can be done nd when. I m definitely having the ops si hve no intention of suffering like mum did. reconstruction is probably the option I will go with xxx
Just had my confirmation that I have faulty BRCA2 gene after 20 plus years of fighting to get answers. My mum had Breast and ovarian cancer and sadly died of ovarian cancer 21 years ago aged 59. Always been adomant that I want a double mastectomy and have my ovaries removed. Been told will have to wait another 6 months before I can be put forward for surgery. What are people’s thoughts on double mastectomy with or without reconstruction? All advise very welcomed
I found out I was Brca 2 October 2016. I saw a consultant in the November but put it on hold as I had other medical issues.
My daughter was tesed in April 2017 and she too carrys the gene, she saw the consultant in June and 2nd apointment in Sep 2017, he gave her a date then. She had her operation 26 Oct nearly 4 weeks ago now.
I can understand you bing anxious and worrying, her operation went well. She had implants and at the same time. The first few days she felt rough but after 2 weeks she felt good. I have seen her breast since her operation and now the look normal no bruising no swelling and we are pleased with her out come. I will go down the same route next summer.
I can,t believe how well and how quick brusing as gone. I think the worse part of any operation is waiting for it to happen, I had a prolaspe op earlier this year and thinking of an operation is frightening.
Kepp in touch and let me know how ou are.
Thanks , yes I did call them but they didn't manage to find anyone to talk to me.
Does anyone know of any BRCA groups in London.
I would like to meet others like me as I do feel I need to talk to someone who has had this surgery before
I know how you feel I have known since last October that I have the faulty brca 2 gene but I needed a prolapse operation first. Since my daughter as found out that she as inherited too. She is having surgery 26 th October to remove both breast and have implants. She is in her thirties.
I know its scary as I feel like that too.
I go for my yearly mammogram on Thursday and to discuss if I have decided what to do.
Please keep in touch
How do you feel in your self?
Have you been given support from your family?
i am 48 and six weeks ago had risk reducing double mastectomies nipple and skin sparing with diep flaps reconstruction.
i only wanted to use my own natural tissue and wanted a solution that was not going to need repeating in the future.
it is a daunting thing to do from expierience but I am very happy with my decision.
i hope you all have good outcomes
Did it come back postative and what did you decide to do if it was?
I have read your email and I found out this time a year a go I was carrying the BRC2 faulty gene.
My daughter was tested in April and she too is a carrier. She is due to have a double masectomy 26 October.
I didn't go straight to have the operation to have my breast removed and implants due at the time I was waiting for an operation for a prolaspe which I had done in February 2017. Then with my daughter finding she was carrying and wanted an operation I thought it best, she have it done first being younger.
I have seen tow breast consultants one a male who I thnk would have done it straight away if not awaiting my other operation and I have since switched to a female consultant and she feels there is no rush to have them removed as the chances come down each year, and I will never feel the same.
My daughter was told the chances go up.
I will have it done next year.
I am a similar age to yourself and I was concerned about recovery time. Did you have implants and did you come out of hospital with breasts?
Did you keep your nipples my daughter is going to but there is 1/10 that they will dye and drop off.
I have felt calm these last months but now with my daughters operation approaching i'm worried about her operation and worried about my self, like you say I would be devasted if I should get Bc between yearly mammograms. I have my next 7 November but as I write this email the hospital have telephoned to give me an appoinment 19 Oct.
How are you feeling now after all the months have gone?
Are you happy with your self and do you feel so much different?
Hi, thank you for letting us know your story. It was a bit scary but I think this type of can be treated as seen in the television or internet of their confession. I just have my concern in breast, I can a little pain in breast sometimes in a day but when I checked them I see any lumps and it's seems like very fine. Well, I don't wan't to bother myself about BC but it worries me. What do you think is the first step does the doctor will do? any laboratory test? I am certainly scared of needles. Thank you!
I too am a BRCA2 carrier, passed on via my dad. I'm one of 5 siblings and 3 have it, one not and one not tested. I have many first cousins in the netherlands, 10 of our generation are carriers, 4 not tested, 6 negative, so much for the 50-50 percentage! Thankfully my two children (adults) have tested negative.
I had my ovaries and fallopian tubes removed end July 2016, no problem. Then I had a clear mammogram, saw the breast specialist and, contrary to what is advised in the netherlands where even my cousins who are a carrier and had breast, ovary or uterus cancer were told a mammogram every other year was all that was required... As my treatment to date had followed that of my cousins to the letter, I was rather taken aback when my surgeon strongly advised me to have bilateral mastectomy. If I chose not to, they would offer yearly mammogram and MRI, even though I am 61. After careful thought I decided to opt for bilateral mastectomy and reconstruction. The reasons being that I am well and fit at present, a good timeto have surgery. The chance of getting breast ca increases year by year and if i should get it, both breasts will be removed at a time when I might need radio and or chemo. If I did not take this chance and were to get cancer, I would not be very happy with myself for passing up this chance right now. I know that I would start fretting a few months before the mammogram/MRI, plus, as the doctors said: there might be something there that has not yet shown up which then has the chance to develop during the next year.
So I've gone ahead and had my operation on 8th December 2016. I've been overwhelmed by the kindness and care of the breastcare team. I am also blessed by loving family and some friends even got together and brought in lunch and dinner on week days for two weeks post op so my husband did not have to cook after a long working day. I'm now nearly 5 weeks post op and doing well, I'm getting used to my new breasts, I asked the surgeon to keep me looking the same as I used to with my bra on and she's managed that beautifully. I aim gradually to return to work from next Monday, 5 1/2 weeks post op. My biopsies from the abdominal op and this one all came back clear so I am greatly relieved that I am a step ahead of the Big CA. So, that's my story, hope it helps you/anyone else facing this dilemma. I am grateful to the cousin who set the genetic investigation ball rolling and to all the people involved in my care, it has been and is second to none. VIVA NHS I say.
I have brca 2 and I am having to decide what to do, I had my ovaires taken out 5 years ago before I found out about the brca 2 faulty gene.
I am scared of the out come either way .
What did you have done and how are you now.
How are you now down the line after a few years.
Im also have the questions , I have brac2 and dont know what to do, should I have them removed and implants. I would love to hear from someone whos been through this.
Hi T and Angie, I'm really sorry its taken me a while to reply. I haven't been on here for a while. There was a bit of a lull in September while I was waiting to see my breast surgeon and to be honest I tried not to read too much. I had a bit of a tough time but have made the decision to have the double MX and recon so am back in the full flow of hospital appointments all over again. I think the breast surgery will be first for me as everything seems to be happening more quickly in that area. I have had a pelvic scan though so for now feel OK that nothing is going on in the ovary department to worry about. Its good to hear from you Angie, I hope you recovered well from the rt? I can understand how you feel Teresa, it is a very personal decision. I'm scared to death of what the reconstructed boobs will be like. However I had a mammogram and MRI on Monday and that every year until I'm 70 is my reality if I chose not yo have surgery...plus all the worry that comes with it and I know that I can't live like that I a constant shadow (not to mention I would have to have rt on my right side if I don't have surgery). Its been a really tough year but I know what I have to do. Do you have surgery dates yet t? Xxx