Hi, I just wondered if anyone had some experience/knowledge of risk reducing surgey offered to prevent both breast cancer and ovarian cancer.
I was DX in Nov 2010 aged 31 with High Grade DCIS which required a MX of the Right Breast, to cut a long story short, I have now been identifed as having the BRACA2 gene.
I was planning to have a TRAM Reconstruction with my original consultant, but now have been advised to have a Left risk reducing MX with imediate recon,at the same time as having my delayed right recon. I am swaying towards using the DIEP method for both at Castle Hill, Hull, as i would get it all done in one op. However following my referal to the gynaecologist due to the BRACA2 result, he wants to me to have a Hysterectomy and ovaries removed also sooner rather than later, as risk is risk and to wait until i was over 40 would just give me 7 years of worry.
When will it end? I feel like they keep cutting bits off me?
Has any one had these procedures?
Hi there Jo,yeah my stories at bit similar to yours,I had a wle and full node clearance due to bc in early 2010,I had node involvment,I am 44 so I was advised and had 6 cycles of chemo 20 rads and arimidex for 5 years.My mum,nan and 2 aunts all had bc early in life,and before the brcaca2 gene was discovered some years ago I tested negative for braca1.after my dx I was dxd with the braca2 gene.to cut a long story short,i had an ovary removed mid 20111,then I chose to have a double risk reducing mx in Dec 2011,I have no regrets what so ever,I had expanders implants fitted which I am due to have changed to proper implants,later this summer,then I am going to. have tattooed nipples a few months later.To start with I felt like,when is this ever going to end,now it doesn’t concern me,I just say,that’s another one ticked of the list.I am really happy so far with the look of things.I only needed to have an ovary removed as I had a hysterectomy when I was 28,left an ovary as I was only young,but it never worked anymore,pointless really.I hope you find your decisions a little easier to make.mine was made easier by the fact my mum had bc twice,and I had a bone scare last year,so I thought I would be upset if I got bc again and I could have done something sooner rather than later.Hopes this helps Sandrae
I was diagnosed at 35 with bc and shortly afterwards found that I was brca1. About 9 months after having a lumpectomy I opted for a bilatal mastectomy with reconstruction. I had implants and have been very pleased with them. I also had my ovaries removed despite an initial reluctance on the part of my consultant who wanted to wait until I was 40. Like you, I didn’t want the worry. I know exactly what you mean about having bits cut off you, but I found that I adapted quite quickly and don’t have any regrets.
As well as the support you receive here it may help to talk things through with one of the trained members of staff on the BCC helpline. Here you can share your concerns and with someone who will offer you a listening ear as well as support and information.
The number to call is 0808 800 6000 and the lines are open Monday to friday 9 to 5pm and Saturday 9 to 2pm.
i had bc in right at 37 and and in left at 40 found out i had brca2 a year later and then underwent hysterectomy and bilateral ooph in sept 2010 when i was 42… had a recurrence of BC last year but not had mastectomies although am still considering it in a couple of years.
jo you are still young in terms of ovarian ca which is more common over 60 in women with brca 2. so i would say the breast surgery is probably the most pressing as you have already had abnormal cells in your breasts. maybe you would want to wait and see how you recover from one surgery before booking the next… they may still recommend you wait to have your ovaries out til you are 35… you dont need to have a hysterectomy you can have your ovaries removed laprascopically as a day case. having your ovaries out can cause long term effects like osteoporosis so they have to weigh up wen is best to do it… and there is now some evidence for taking HRT but not sure if your team would recommend it after DCIS but its found to help reduce cardiac problems and dementia from early menopause.
why not ask to go back and speak to the genetics team again to get all your facts.
Hi Jo ,This is my first post so bear with me , at 28 I found out I had the BRCA2 gene …and had yearly mammogram/mri scan last july (age 34 )I was diagnosed with breast cancer ,with lymphnode involvement (11/20) …had a right MX,chemo rads and now on tamixofen ,Ive been advised to have left MX, at the same time as a diep flap reconstruction to both breasts …however I have to wait approx a year (scheduled for 2013)to do so as they want the tissue on the right side to heal fully …next mammogram isnt till AUG …which im not happy about as last feb I had an mri which was clear !! and by july this had occured …theyve advised me to have ovary/fallopian tube removal within the next 12 weeks as it would half my risk of another primary breast cancer and obviously ovarian cancer …is this anything like what they have proposed for you ?? I just feel like I need to be proactive ,(as I really dont want to go through all this again ).
hi jo,
i had brca1 so had doublemx with ld flap recon in aug,ovaries removed 2 wks earlier and am happy i had them done. my 28 yr old daughter,tested positive for brca1 also is having double mx on 24th may and has been advised to have ovaries removed before she is 35,good luck
di.
I know that feeling about having all these parts cut out…
I was diagnosed age 36 and found out I was BRCA1 soon after so I immediately went for a bilateral mx plus immediate recon (instead of the wide local excision I might have had). Long story after that but have got to the point where I am having ovaries removed this May, age 38.
As Lulu says, it is not necessary to have full hysterectomy and as this is bigger surgery, many doctors think it is enough just to have ovaries and fallopian tubes removed in order a) to reduce your ovarian cancer risk and b) reduce your BC risk by cutting off your main oestrogen supply.
There are real disadvantages to having an early menopause. I think the main risk is to bone density and it is very clear to me that, now that I have been on ovarian suppression medication (Zoladex) for 9 months, that my bones and joints are quite painful already. Ovarian cancer risk only really becomes more significant age 40 so it is a question of balancing that risk versus the side effects of early menopause. For some women having or completing their families also plays a part in their decision making. There is no real point in me waiting until I am 40 because I had a recurrence after my mastectomy so have switched to Zoladex which is a real hassle and does not protect from ovarian cancer. But if I had not had the recurrence I would have waited until I turned 40. Also worth remembering that it is a lot for your body to deal with all at once - I wanted to take it 1 step at a time.
I am no expert but I think that bRCA2 is lower risk for ov cancer than BRCA1.
If you want to see what it is like to be in early menopause you could try Zoladex injections for a few months to give you an idea.
Hi, Firstly thank you all for your responses and support. I have had my meeting today with my original consultant and the consultant i would be refered to for the left mx and immediate recon and delayed recon of the right side using the DIEP technique. It was a very positive meeting and could well have two boobs by xmas, which i am nervous and excitied about all at the same time. The breast consultants and the and gynaecologist have discussed my case and agree the Hysterectomy and ovaries removal should be completed first. As i have said i am identified as BRCA 2 and have a strong family history of Ovarian cancer on my fathers side and Breast cancer on my mums side, (ironically my mum was actually dx 7 months after me with invasive BC and has just finished all her treatment) i have two beautiful happy children and no desire for any more, afterall i have responsiblity to them to ensure im here for as long as possible. hence the decision to have all the rick reducing surgery at 33, (realatively young) To only have the ovaries would require a type of HRT not beneficial to the reduction of breast cancer risk, hence the full hysterectomy. I would be required to have another type of HRT to maintain my bone health etc. which the breast consultants are happy with. To sum up, i worry every day about it coming back somewhere, so wait seven years until im 40 and worry for the next seven years or have the procedures now and remove the worry. Thank you all once more. Jo.x
Jojo glad your happy with the plan of action… Does the gene come from your dad? My mum had bc the year before me and we thought when i tested positive for brca2 that it would be her that was positive but it wasnt it came from my dad.
Hi Lulu Thanks for sharing your experiences. We are still waiting for test results to establish which side of the family the BRCA2 is on. One thought i have had is could it be possible to have both genes faulty? As i understand it we all have pairs of genes, one from each parent, so what if? both my mum and dad carry the fault and i got two faulty genes? glass half empty I know, but i cant help wondering? Take care Jo.x
Jo jo its is possible to inherit a brca1 gene from 1 parent and a brca2 from the other… It is also possible to in herit brca1 from them both and brca2 from them both as there actually hundreds of different faults within different parts of the gene… Some are common genes such as those that are frequent in the Ashlenazi Jewish population but others are less common… I dont know anybody with my mutation which is brca2 c.2409T>G… Although getting two gene mutations is possible its not very common but i have heard of it.
help. I don’t now how to post with this new system. OK seemed to have managed
I was wondering if, once they had found a gene mutation, they would not bother looking for any more.
I have the brca1 mutation, and was the first one of the family to be tested. When they test the rest of my family, would they look for any other mutation other than the one they found on me ?
Maria if you are the first person in your famiky they will do whats called a full mutation analysis… This is where they look at the whole gene for any changes.
Some people will get tested through research trials and im not sure if they do a full screen or just until they find a change as the reason thay are testing is to rule you out of their research as anybody with an existing gene mutation cant take part.
If you have a gene already identified in your family they do whats called predictive testing and that is where they just look for the specific change they know about in people who may not have cancer.
Not sure what they do overseas though Maria and it could be they do things differently and stop after they find a gene.
Thank you Lulu for your reply, here to help as always. I do hope you are keeping well.
As you know I’m not in the UK, but most of my family are. My niece was found to have my gene, but my nephew was negative. My Mum died before she could be tested, but we think the gene came from my Dad, but what if my nephew has got the one my Mum might have had. Am I making any sense ?
PS did you have to re-do your profile, mine seems to have gone
PPS sorry Jpjpmumoftwo. I did not meant to hijack your thread. I am brca 1, had double mastectomy (bc in 2003 and 2010) and prevention oophrectomy. Being nearly 2 years down the line, I can say that I am fine and still feel like a women, dispite having most of my womenhood taken away bit by bit. Take care of yourself.
Hi maria…
What makes you think it was from your dad? Have any cousins or their children been tested? This might be another way of identifying which side of the family has the gene.
Its rare to get 1 gene mutation and it would be extremely unlikely to have 2 but as i said i have heard of it… I couldnt say 100% that your nephew doesnt have a gene but its highly likely he is lucky and hasnt inherited it. My dad has it his brother doesnt, i have it my sister doesnt, my kids havent been tested yet but im hoping and praying neither of them have it.
Why not speak to your genetic team and find out if they did a full mutation analysis, which im pretty sure they would do, but it may put your mind at ease.
Hello. Have been reading all your posts with interest as I have found out that I have an alteration on BRCA 2 gene, as does my mum. There have been 10 cases of BC in Mum’s family (all under 50) and Mum had BC at 29 and again at 34. I had BC last year and have had bilateral mx without recon, chemo and radiotherapy, but am now considering hysterectomy. My mum had a hysterectomy after recurrence of BC, and she is still fit and healthy, and very active at 69 (40 years after her first cancer) However she is the only one of our family who made it! My consultant says not to rush into a decision, but I just keep looking at mum and thinking how well she has done. I just want to be here to grow old, and have had my children so no concerns there. I’m now 41. Any advice welcome Thanks ladies
Hi this is a tricky decision. I had a family history of ovarian cancer, but am not brca. My genetics consultant and psycologist agreed that for me a hysterectomy was a good idea. I had it done in May and despite an infection I have recovered quite well. I am not 41 until october and weighing up the pros and cons was tricky. My gyneacologist was happy to do it any time in the next two years, but I was keen to get rid of them early as I need further breast surgery and the screening for ovarian cancer is not proven.
I have had some side effects. My hot flushes are not too bad, but my sleep pattern has changed and my adrenal gland is frantically trying to make up for the estrogen loss. This can lead me to being nauseous, but then I was prone to that before all this.
My sister who is older with no cancer dx has just had her ovaries removed. I decided to go for the full hysterectomy including cervix. Uterine cancer is rare, but so is bc at my age so I decided to get rid of that. I dont need smears anymore now without a cervix and really the most significant factor for me was that if the surgical menopause was horrific, without a uterus, I could have hrt that would not increase my chances of bc as much as the hrt needed if you have a uterus. I think its something like a 2% versus 6%increased risk and depends on how long you are on it.So far I have not needed it and I am hoping that continues.
I think you need to talk to as many professinals as possible to get the full picture. we are all different. Losing my estrogen supply is not something I took lightly, but trying to get on with my life was proving v tricky carrying my ovaries around.
It took me about 6 months to find everything out i needed to know, but only 3 wks from telling my surgeon I wanted it done to him doing the op becaue he works on the cancer lists and so it was very quick. I was home after 2 days.
I am not pushing you towards this decision as there may be other health issues that may mean its not a good idea for you and Iknow that ideally I should have tried to hang on to them a bit longer but my fear of a cancer that i could have done something to reduce the risk of getting to 1% was to strong.
Just my experience.
good luck
dx
Im a brca 2 carrier inherited from my dad. Had bc at 37 and new primary in other side at 40 and recurrence at 43. I found out I had the gene when I was 41 and had full hysterectomy at 41. We don’t have any family history of bc from what I have researched but there is pancreatic anD one case of ovarian in a distant relative. She died at 45 and when I found this out it prompted me tohave my op. the hot flushes are intense but not life threatening so I can easily put up with them. Some joint pain particularly in my neck started a few months post op but it’s not bad enough to need pain killers just a bit crunchy sounding at times.
It was a bit of a shock to the system finding out I had a mutation as had planned on trying for a baby with my partner as he doesn’t have kids but that all went by the wayside. And I have two big kids 21 and 18 anyway… And it turned out I got a recurrence of the bc too. I don’t regret my decision to have the hysterectomy but do feel sad sometimes that the plans we made never happened.
Its a hard decision and a very personal one and nobody can make the choice for you, but what ever you decide you have to be able to live with. Incidentally I also got an infection but it was five months after my op I ended upseriously ill with peritonitis but this is rare.
