Hello everyone. I found this forum on Friday and I can’t tell you what a relief it is to have access to real people that have the same worries and concerns as me! I live in Cornwall and since testing positive for BRCA 1 about 18 months ago I’ve had no-one to talk to.
My mum was also BRCA 1 and I lost her to BC 6 months ago. Following her death I decided to have my ovaries removed and this took place last week. I am 41 and of course it means I will now go through the menopause. I saw my consultant neither before nor after the surgery (the appointment was set up through my GP) and I have had no advice about HRT. My GP has prescribed me Livial but I have no confidence in his understanding of the gene mutation and, having read the information leaflet that comes inside the packet, I notice a number of alarming references to increased risk of BC.
Am I crazy to put this stuff inside me, considering the lengths I have already gone to? Will I suffer with intensified menopausal symptoms if I don’t? Is there an alternative therapy? I’ve read about FXMenopause on the internet - does anyone have any experience of it or is it another crackpot moneymaker?
I would be happy to hear from anyone with even remote similarities - just knowing there’s someone who understands would be good. I miss my mum.
Hello Sam,
I dont know if I can help specifically with HRT but thought I’d say hello. It must be so hard to have lost your mum to bc and so soon and now to have had this surgery. I am BRCA1 too and got this diagnosis post breast cancer diagnosis. Now gearing up to masectomies and ooph…(cant spell it, next year). I am 42. I have been very clear that I would only have my ovaries removed if I could have HRT as I suffered alot with the temporary menopause brought on by chemo. My breast surgeon says no to HRT due to cancer risk, not before masectomies.But I know genetics say that some women CAN take HRT and they are not an increased risk of breast cancer. Confusing? My GP says that they would not want to prescribe HRT but they would if the symptoms were severe. I am not sure if this helps because everyone’s risk seems to be very individual. If you really dont want HRT there is a really good book (I will need to get title) with lots of advice on how to manage symptoms naturally.
I am sure that there will be other women on this forum who can help more than me.
lol, Rattles xx
Dear Sam,
I can perfectly understand how much you must miss your Mum, it is only a short time ago, and now you have to make up your mind about all this stuff.
Could I suggest you ring the helpline tomorrow to discuss this? They are really well informed and very kind and helpful.
It doesn’t seem quite right for you to start on HRT without guidance from either the gynaecologist under whose responsibility you had the oophorectomy, or from a geneticist or breast surgeon whichever first saw you re BRCA testing. Do you have an appointment for follow up post operatively?
There are situations in which people with breast cancer are prescribed HRT, but it is a specialised area, and just as much so for someone with BRCA problems as for someone who has not had breast cancer but has a family history and BRCA problems.
Like Rattles, I hope you get some more replies from other people in the same boat
but in BRCA positive women having your ovaries out premenopausally and then taking HRT is less of a risk for BC than having your ovaries in and not taking HRT.
if you chose to keep your ovaries nobody would question this choice so given the fact you would have less after they come and take HRT you def have a place to argue for it.
if your having your having mastectomies too then your risk is less than the general population.
Hi Lulu,
Im glad you posted this reply as I told my breast surgeon this when I went back after getting views from the forum. Maybe its where my cancer as an individual realtes to my brca1 status??? Although genetics say exactly as you do (ie risk of ovary removal and then HRT is much lower than keeping ovaries and no HRT), he was very definite about me not taking HRT without the masectomies first as it was too risky. These slight (but important) differences in opinion are difficult to make sense of.
Sam, Im not sure if any of this will help you with your original post, except that you may (like me) get some comfort from knowing that there are others grappling with the same dilemmas and what best to do.
Lots of love to all, xxx
Hi Sam
I’m 40 and found out almost 2 years ago that I have the BRCA2 gene. I’m still considering preventative breast surgery but had my ovaries removed in October last year. HRT wasn’t really discussed with me before the surgery and it was my GP who prescribed it initially about 4 weeks after my surgery. However, when I went to see my consultant/surgeon for a post op a few weeks later he was understandably more knowledgeable and he prescribed a different type called Kliovance. It’s a continuous combined HRT and I’ve been on this ever since. It’s a lower dose (1mg)than I was originally prescribed by the GP, although he did say that if my menopause symptons got too bad ( which fortunately they haven’t) there is a 2mg version called Kliofem. Like yourself I was worried when I read the literature inside the packet about the links between HRT and breast cancer but I understand that just by having your ovaries removed that massively reduces your risk of breast cancer and I’ve been told that the hormones in HRT are much less than your body would produce naturally if you didn’t have your ovaries removed.
I’m not sure if this will help you but I wish you well. If your GP isn’t too helpful it may be worth contacting the hospital where you had the surgery and maybe see if you can see the consultant.
Best wishes
Debra
hi all
not sure this is the correct post to discuss this. dx 2large tubular ductal invasive bc mx and rads followed but thankfully no chemo. felt we were coping . went to genetics and told my daughters 15/17 would be mod rik [up to 33%]and would start screening at age 40.
have been back today with OH whose mum died of pancreatic and breast at 66 and aunt who died bc at 36
as blood wasnt collected from affected family before they died they have suggested that my OH and his two ssters are entered into a pilot trial where they are able to have their bloods taken in nov to see if they have the BRACA 1/2 gene.
my oh will then be able to be screened for pancreatic and prostrate if he comes up positive.
we have two daughters and three nieces who may be affected also.
I feel really anxious now as I can see how this may have far reaching affects . the consultant was great and said that she was acting intuitively for my daughters as realistically they had had greater risk to them on both sides- I feel powerless to protect them and this has awakened my greatest fears-any thoughts on putting this into perspective would be appreciated x
hello enaid… my friend had tripple neg breast cancer, she was tester for the braca gene. and unfortunatly she proved possitive for braca1 all her family brothers /sister and father tested negative, but her mom tested possitive. so it seems the gene follows the female side… my friend has a 21yr old daughter. who was also tested… she is NEGATIVE. so the gene stops with my friend…hope this helps xx angie
we all want to protect our children and we do worry about them. even with a strong family history testing affected individuals 80% will be negative for the genes.
testing family members who arent affected is not likely to give you much information… if your OH tests negative you wont know if that is because there is no gene in your family in which case their risk wont be reduced or if there is a gene but you OH hasnt inherited it in which case your daughters risk would be less.
they are very young at the mo and wouldnt be offered testing themselves until 18 even if a gene change were to be found.
unfortunately there is nothing that will stop people developing breast cancer but you can educate them to lower their risk and be breast aware.
my gene change came from my dad… but my mum had BC the year before me so we thought it would have come from her but it didnt… my daughter is 20 but doesnt want to be tested yet… even though i was diagnosed for the 3rd time she still doesnt want to know.
thsanks for the responses-they have helped.when we went on friday I thought they would have said the same as they said to me -I was shocked when the consultant said they wanted to put OH on trial with two sisters in nov. the rationale if I have grasped it right was that probability would state that if the mutant gene was present as there were three siblings 1 would show . thinks it may be comming down OH paternal line.
one sister very reluctant to do it ,OH and elder sister want to . I can see this causing some upset and I would only want it if it could help our families . we all run the risk -as I know as i was struck with no family history at all!
what I dont want is that we may have a chance at preventative interventions for all our girls if we are able to find out.
ovarian is an awful cancer [as is breast when it runs amok]the trouble is it is silent until it has caused devastation.
am i selfish in wanting answers ?? I feel prearmed is the best way maybe i an selfish as I can cope for myself but not for them.
many thanks dx
Hi, this is my first post,sorry if its a bit jumbled but i’m trying to piece all this together to see if i can make any sense of it… I had lymph and lumpectomy the day before yesterday, awaiting further results on 7th Sept. My mum died from BC when I was 7yrs old (i’m now 48). I have been diagnosed with invasive tubular 7mm so very slow growing low grade.But last October I had a 24cm cyst on my ovary removed along with both ovaries, all tested clear
.Regarding HRT, I was taking it prior to the ovarian cyst,which grew very quickly, after the op I was given a 30mg oestrogen patch,I had awful hot flushes, moved house, changed GP, who increased this to 70mg, I then had a routine mammogram and the BC was discovered. I am considering the BRCA test as I have a 20 year old daughter. and also curious to know if anyone else has had any probs with cyst on ovary like myself…
Hi everyone and thanks for posting your replies. Although a confusing and worrying subject it is a comfort to know others have been there and got the t-shirt!
Jude48 - I had multiple cysts on my ovaries prior to them being removed a short while ago. Not sure if it’s related but I took the contraceptive pill initially to keep them under control but had to stop under the guidance of the genetics clinic - my cancer risk was too high to continue apparently.
Enaid46 - The genetics team tried to contact my extended family - aunts and female cousins - regarding BRCA testing but they all declined, can you believe it? Given our family history and my mum’s recent passing you’d think they’d be desperate to know. Guess some folks prefer blissful ignorance. At least your daughters have time on their side. Let’s hope there’s a breakthrough cure soon. And good that the docs are being pro-active with your family - you can feel you’re doing your best and that’s all anyone can ask. Keep positive.
Hi Sam,
Very interesting to read your reply regarding ovarian cysts. I think I will definately ask for the BRCA test, but have no surviving relatives on my mum’s side that I can contact as she had no brothers or sisters and my Gran’s brothers and sisters were all lost in the war. I do have a cousin on my dearly departed Dad’s side who is currently, coincidentaly awaiting mammogram results for a lump and also experiencing bleeding at 55 and having this investigated too, so that makes me wonder could it be in both sides of the family? Not worried so much about me as I am now in the system, but very concerned for my daughter who is 20, at least if I test negative I assume she could not have inherited the gene from me?? Does anyone else have much knowledge on the BRCA genes testing?
Wishing you all the best, jude x
Hi Jude I’m a breast care nurse in genetics and do some initial assessments and counselling if ladies with a personal and family history of breast and ovarian cancer. Unfortunately we do not just test people because they wish to be tested. Like many things you have to fit into a criteria and although your daughters would probably fit the criteria for early screening from age 40 it is unlikely with just 2 cases of breast cancer occurring over age 48 that this is genetic. Normally you would need 4 cases of breast cancer in 3 generation occurring under age 60 to be able to be tested.
There is a research study which will test individuals where there are 3 cases of breast cancer at any age but from you description it doesn’t sound like you would fit their criteria either.
You can go privately to have the test done and although the price has come down for this over the last few years I think it’s still quite pricey around £2-3000… Hence the Eason not everybody who wants one gets tested.
Your genetic team will be able to offer you advice and support with regards to screening and testing though.
Hi Lulu,
Thanks for the response, nice to have some more info on the situation with BRCA. My Mum had a double masectomy and died at the age of 46 from what I remember as a child she was ill for several years, both my grandmothers died from cancer(not breast though) but later in life, and I believe my maternal grandmother’s sister also died from breast cancer before I was born, but unfortunately there’s nobody around to give me anymore info on the family. As I said I’m not so worried for myself as I am in the system, but it would perhaps be more cost effective for my daughter to have some private screening( i e ultrasound) as she gets older, that’s if she wants it…ultimately its her decision, but would sure put my mind at rest…perhaps private medical cover may be the way for her to go as it would probably be reasonably priced at her age.
Thanks again for your advice,
Luv Jude
If mum had bilateral cancer or grandmas sis had BC then you would fit the criteria for the research trial. There are some other cancers that can also be related so maybe if you can find out more info that would be helpful. Things like fullnames, date of birth, date of death and where they had treatment as this all helps with the assessment. The genetics dept can contact the cancer registry and get death certs to confirm diagnosis so they have a clear picture.
The research trial is called the genetics of familial breast cancer and if you have 3 breast if ovarian cancers in the family they will take a sample of blood from an affected person. They analysis it for brca1 and 2 and this takes around 9 months. If no gene change is found they put the sample forward to the research part of the trial which is trying to identify new gene mutations and because of this the trial is often called brca3.
There is another trial going on right now which may make screening mote available to younger women. It’s called fh02 and is examining annual mammography of 35-39 yr olds with a family history. The results should be avail e well before your daughter gets to 35.
Ultra sound as a screening tool isn’t very effective. It is useful where something is seen on Mammo or MRI or somebody has a lump or symptom. If your opting for private they would prob recommend MRI but screening firing usually start till age 30 even in families where cancer occurred in the 20 and known brca carriers.
Hi Lulu,
Thanks so much that’s all really great, interesting stuff. I really appreciate the info.Will certainly try to find as much detail as I can. I think my step-mum may have some info on dates of my Grans deaths as she is very good at that sort of thing, keeps all sorts of dates in her diary every year. I was only a teenager when I lost both my Grandmas within a couple of years, so hard for me to remember the dates.
Thanks again for the time you have taken to explain all that for me.
All the very best wishes to you.
Jude xx
I know you know a lot about breast cancer etc and have a question for you. I too have tnbc and have an appointment with genetics next week. Do you know if any other types of cancers may indicate a family gene. My mam died at 43 of hodgkins lymphoma and my paternal grandmother had breast cancer later in life, I wasnt sure if the brca1 & 2 genes were purely relevant only if family members had either breast/ovarian cancer? hope this makes sense
there is a consortium looking at other linked cancers but there isnt enough evidence around to show that things like lymphoma are connected… however when somebody dies at a young age we wouldnt know whether she would maybe have gone on to get breast or ovarian cancer had she lived to age 50 for instance… other cancers that are linked and are actually taken into account are pancreatic cancer, male breast cancer and prostate cancer (these 3 mostly associated with BRCA2, whereas ovarian is more related to brca1), in the US they offer a lot more screening for other types which they deem to be associated but in the UK we dont consider others… but its thought that malignant melanomas and bile duct cancer could be related to brca2 and colorectal cancer associated with brca1… but as i said there is not a strong enough link at the moment to consider a family at increased risk based on these other cancers.
As for testing yourself much will depend on the age you were at diagnosis as you get points for the age of onset… if you are in your 30s then its 8 points for your age plus 4 for being TN and your pat Gm would get 2 points if she was over 60.
however some places have a set criteria if under 40 and TNBC they may test regardless of family history.
my own family is not a typical of a BRCA family as nobody else had had breast cancer except me on the side the gene came from and only a very small handful of cancers… i only fitted the criteria to be tested cos mum had BC at 57 but the gene didnt come from her it came from my dad.
thanks lulu for your reply, its a minefield all the genetics etc. I was diagnosed at 41 so I’ll see what the genetics people say when I go next friday. I had an appointment with my onc today and she said she’d see me in 6 months time and then not again. i find it so hard to believe that they just expect you to get on with your life and dont carry out any further tests or scans to make sure it had defo gone away. She told me today that I had an 80% chance of surviving 10 years and beyond and she reemed off some other figure but I cant remember as the chemo has put paid to any brain cells I ever had!