Hi Girls
my sister and I were both diagnosed with breast cancer in the last two years, she is 46 yrs old and I am 51 yrs old, I went to see the Genetics Councillor on Thursday, she said that there was only a moderate chance that my daughter and neices would get BC, so I came home pretty cheerful, I have just received the news my cousin who is also 51 yrs old has been diagnosed with BC, and only has a 30% survival chance, so now I’m back to square one worrying that my daughter will also get it.
anyone else with a similar family tree.
Heatherellis
Hi Heatherellis
I have added a link to some information on genetic testing from the information section of the website that you may find helpful.
breastcancercare.org.uk/content.php?page_id=888
Kind Regards
Katie
Hi Heatherellis
Really sorry to hear about you and your sister having cancer and I really understand your worry for your daughter. How old is she?
Not sure if this is relevant or not.
Why did they say there is only a moderate chance? How do they know?
I found out in september that I have the brac1 gene fault as my sister died age 35 in march and my aunt died of ovarian cancer about age 51. It has travelled from my dad’s side but although my gran had throat cancer and cervical or uterine cancer she didn’t have breast or ovarian so not sure where it came from. Have you been tested?
My sister had some of her bloods taken before she died and about 5 to 6 months later I got her results and then got tested. I’m not sure how much you know about it but it meant that I am at 50 to 80% increased risk of breast cancer and up to 40% ovarian. After speaking to the breast care nurse and surgeon I have been advised to have preventative surgery as mamograms and MRI’s don’t work well for younger women.
I am having a double mastectomy with tissue expanders 31st dec and then permanent implants at a later date. I am so glad I got tested as I am 33 the same age my sis got diagnosed with bc. The other major worry is that I am wanting to start a family and I have been told about far too many cases of cancer being found during or just after pregnancy. I want to get on with my life without feeling like my whole future is in jepardy. I also will have to have my ovaries out by 40.
Not sure if this is any help or not?
Best wishes
katie xxx
Hi Heatherellis,
I’m 30 and recently had my genetics appointment. There are 4 cases of breast cancer on my mum’s side of the family but I was told there are only 2 they are worried about as these were early onset (28 and 38) which would appear to indicate there is a genetic element. My cousin tested negative for BRCA1/2 but they think it could to an undiscovered gene. I too am hoping to go down the preventative surgery route. Anyway, I was told that my mum’s BC at 55 is probably ‘by chance’ as she is in the at risk age group, so maybe that’s why your daughter and nieces are considered to be moderate risk, as BC is very rare before 40. Your cousin’s diagnosis may well change things, I guess it depends how big your family is. Could you contact your genetic counsellor and discuss this with them? They will probably be able to explain things better and hopefully put your mind at rest. As far as I am aware I think women at moderate risk are entitled to mammograms at 40 instead of 50. Hope this helps.
Katie - hope you don’t mind but can I ask you what you’ve been told about your ovarian cancer risk? I have noticed several people saying they have been advised to have their ovaries removed by 40. Is this because there is less risk before 40 or because it’s too soon to go through the menopause in your 30’s?
Zoe x
HI Zoe
Unfortunately it isn’t that rare these days to be diagnosed with breast cancer under 40 as certainly in our hospital they are seeing much younger women than they used to, some in their 20’s.
As far as I know (and I’m waiting for my genetic testing to come back) if you carry the BRCA1 gene then there’s a 50/50 chance of developing either breast or ovarian cancer (and any female relatives), if you have the BRCA2 gene there’s a 50/50 chance of it being breast or prostate.
I’ve agreed to have the test (as I already do have breast cancer) for my cousin as she has two daughters, my brother has a daughter plus I want to find out whether there’s any potential risk for my brother and my son regarding prostate (my brother has yearly PSA tests because of my diagnosis).
I think they sometimes recommend having your ovaries removed because there would be less oestrogen produced which some breast tumours tend to be fuelled by.
Your right, if you have a family history, you should be able to start having mammograms at an earlier time than 50 (soon to be 47 come April 2008).
Hope this helps.
Pinkdove
Hi Heatherellis
Now that your cousin has been diagnosed your situation has changed and therefore I would go back to genetics and ask for testing for BRCA mutations. I also suggest you delve into the family history and make a note of members who have been affected by cancer and at what age they were diagnosed. Cancers to be alert to are breast, ovarian, prostrate, bowel, pancreatic and gall bladder. If you have a BRCA mutation you have a 80% lifetime risk of developing breast cancer (not 50% as mentioned above ) so screening is absolutely vital for female members. I’m BRCA 2 and was told my life time risk of ovarian cancer was 65% ( about the same for BRCA 1 I think but not certain) therefore I decided to have my ovaries removed 2 years ago. If you have a BRCA mutation your children have a 50% chance of having the mutation, though of course they may not go on to develop cancer. I have relatives with the mutation who so far haven’t developed cancer, maybe they will one day or maybe they fall into the 20% group who don’t. Pinkdove mentions above the cancer risks for BRCA 2 are breast and prostrate, I would like to add that ovarian is also a big risk, my mum died of ovarian (she also had bowel) and an aunt of mine died from pancreatic. Please push for testing and in the meantime push for breast and ovarian screening.
Hope this helps xx
I wasn’t aware that ovarian is part of the BRCA2 so thanks for that information. My genetics counsellor was very good and it was her who told me the percentages - they do seem to vary!
A friend of mine has just found out she’s BRCA2 and already has breast cancer but has to think whether to have her ovaries removed and/or prophalytic mastectomy.
Pinkdove
Hi girls
Sadly every female member on my mothers side has had breast cancer. Obviously the older members have all died from the disease, as they obviously did not have the technical know how then. But my mum is 84 now and still alive. My sister has had very early stage CA in one breast but numerous areas of calcifications in both breast and has opted for double mastectomy in her 40s’. My younger cousins have also sadly died from the disease. (in their early 50s’). I have been offered gene testing as I’ve had BC twice now, but turned it down. My daughter said she really did not want to know! She is a Christian and said she did not want to live with the uncertainty - as other said, even if the tests are postitive, there is still no guarantee that you will definitely get the disease. She has been offered annual mammos since the age of 35 and is extremely breast aware - so that if anything untoward was to appear, it could be picked up early. And because of her Christian faith she is more then willing to put her trust in God - not a point I would wish to argue with, even if I do not agree with it.
At the end of the day, this issue is like a lot of the discussions here, we all have to make up our own minds and sadly nobody can ultimately make these decisions for us.l
Hi girls,
the decision to be tested is very personal and not always an easy one. Like wise the decision to have prophalytic mastectomy is difficult for some people. I had bc before I found out about the BRCA 2 mutation so had WLE and reconstruction. I’ve since had my ovaries removed because of the risk of ovarian cancer and also because my bc was highly er pos. I did discuss prophalytic mastectomies with my breast consultant but decided not to go ahead. I take arimidex and have regular check ups and screening so feel that if there was a problem it would be picked up straight away. What has amazed me is the attitude of some fellow BRCA carriers who think I’m mad not to have preventative surgery, they have chosen to go ahead with it and I respect that but I don’t feel at the moment its something I want to do or could face. I feel after surgery and treatment for bc, oopherectomy and hysterectomy I’ve had enough of being ‘invaded’. I will take arimidex for another 18 months then I will make a decision about prophalytic mastectomies. Whatever anybody decides about testing and preventative measures I wish you well.