Breast cancer - genetic link. Anyone know much about this?

[Tinker]

Hoping somone on here may know a little more about this. My mother has 4 sisters, 2 of whom developed breast cancer and subsequently died. Now the daughter of one of my aunties (my cousin) has developed breast cancer in her early 40's. Her sister rang my mother to alert her to this.

I know some breast cancer has a genetic link and I also think that the risk is much higher if you have a direct relative who has contracted cancer. I think, but am not sure, that the cancer which has a genetic link is also quite rare.

Does anyone have more information about this? Should I be concerned about myself?

Thanks

All I know is that you are right to say that the genetically-caused cases of breast cancer are pretty rare, Tinker. I'd honestly get yourself checked out via your GP, or maybe get some advice from one of the breast cancer awareness campaigns, just to put your mind at rest about the genetic factor - for you and for dd I guess. Does your mother qualify for any additional screening on the basis of her family history? Hopefully someone who does know more about this will be able to add more or suggest some other sources of information.

Tinker, as you have THREE close relatives who have developed breast cancer early then you really should be being monitored. There is some kind of marker for one specific kind of familial breast cancer, which is quite uncommon, but with your family history you want checking out urgently. You should be getting an annual mammogram at the very least. Make an appt to see your GP ASAP!

I agree with janh. It certainly won't hurt you to have regular and thorough screening for breast cancer given the family history. And it might just save your life. Breast cancer can be dealt with a relatively high success rate if it's caught early. If your gp drags his/her feet or if it takes forever to get tests, I think it's probably worth paying to have both the genetic testing and the mammograms done privately. If nothing else it will put your mind at rest.

Only about 3% of breast cancer cases have a genetic link but it is linked to early breast and ovarian cancer - around 40. YOu can be tested for the gene - see your GP and be persistent. If you do have the gene then you can be regularly screened.

My grandmother died of breast cancer, my mother contracted it relatively young and my elder sister has just been diagnosed at 39. Naturally, this concerns me as I know a little about the genetic link thing. My doctor is spectacularly uninterested, and each time I ask the question I am fobbed off.

Any advice anyone?

Hi there! Have had a quick chat to dh the doc!

Tinker - he says a lot depends on how old the Aunties were? If they were pre-menopuaasal, the type of cancer which is genetically linked, then you should ask for genetic screening to assess your risk. The genetic counselling will include advice on what to do.

AliH - his advice was get a new doctor then get genetic screening. You might be genetically safe, but it is certainly worth knowing. Liek Tinker, the screening service should include advice about what to do if you come back positive, but the big question is would you consider a protective mastectomy?

Hope this helps - do keep us posted!

Sorry, meant to say AliH that your doc is totally in the wrong to be fobbing you off like this - it is a real risk to you and you are entitled to the screening. That is why dh said get a new doctor. Is there someone inthe practice who is more sympathetic and would be more likely to refer you? Hope it works out OK, and our best wishes to your sister.

Thanks susanmt, and your dh. That is really useful, and I will give it a go.

Thank you everyone for the information and advice. One auntie was over 70, however I think that other may have been pre-menopausal. My cousin certainly is. I should add that I have about 30 cousins so, guessing 50% are female, I'm wondering if, statistically, this kind of thing may happen anyway.

I shall make an appointment since I have mentioned screening before when the second auntie died. Fortunately, my mother has never had a breast cancer scare.

Tinker, there's some good commonsense advice on here. Do get it checked out but don't worry too much, the emphasis is usually put on first generation relatives eg sister, mother when totting up your points for your own personal risk. I can't remember where you live..are you in London?

bundle - I'm in Manchester, very close to the Cancer Research Campaign building. And, that's what I thought, that it was direct relatives rather than cousins and aunts who were the indicators of risk.

I'm not to worried at the moment but I am worried about my cousin who has now had a mastectomy and is receiving the new anti-breast cancer drug (tamoxilin ?, something like that)

Forgot to add, and this is outrageous I think, that first doctor she saw dismissed her concerns becuase the lump hurt. He said 'if it hurts, it can't be cancer'! Few weeks later she requested a second opinion, diagnosis confirmed. 1st doctor has since apologised (to her husband - why?) in private!

We were just talking about this last night. my SIL's mother's side of the family seems to have a genetic propensity to early and aggressive breast cancer: a number of her cousins have died/just been diagnosed with cancer in their 30s. It does seem to be from her grandmother and doesn't seem to have "hit" my SIL's side of the family, but Dad was saying that the geneticists should be checking it out. Dad is an ex-radiologist, but is very anti unnecessary screening and procedures (and usually has a low opnion of geneticists!).

Especially with breast cancer, there are drugs that can be taken to help reduce the risk and in the worst case scenario (when it is confirmed that someone IS carrying the gene), mastectomy to take away potential for the cancer to develop.

Tinker, it was just that I've met a primary care geneticist who sort of 'bridges' the gap between general practice & hospital genetics (he used to be a GP, he's based at Guy's hospital) but I think he's the only one at the moment. Here's some info re: \www.royalmarsden.org/patientinfo/booklets/tamoxifen/tamoxifen2.asp
url\tamoxifen{} from the Royal Marsden's website which explains how it works.
That's really terrible about the way your cousin was treated, there's still some very bad communication going on out there. A mother whose child died at a London hospital some years back told me she was influential in changing some of their policies by complaining about how news was given to her/her family eg they escorted families right to the front door when they left the hospital, not just letting them wander round once their child had died.

susanmt - to answer you last point, yes, I think I would consider a mastectomy. Since having a child, I would consider anything that would keep me alive, for her, longer. Plus, I would also need to consider her risk of breast cancer, which is not nice to think about.

whoops!
Tinker, it was just that I've met a primary care geneticist who sort of 'bridges' the gap between general practice & hospital genetics (he used to be a GP, he's based at Guy's hospital) but I think he's the only one at the moment. Here's some info re:
tamoxifen from the Royal Marsden's website which explains how it works.
That's really terrible about the way your cousin was treated, there's still some very bad communication going on out there. A mother whose child died at a London hospital some years back told me she was influential in changing some of their policies by complaining about how news was given to her/her family eg they escorted families right to the front door when they left the hospital, not just letting them wander round once their child had died.

bundle - thanks for the link. Unfortunately I couldn't get it to work. But you've given me the correct name of the drug so I'll have a look myself. Thanks

hi tinker, excellent advice here. sorry to hear about your cousin - hope you have found something useful to pass on.

all the best.

Just stumbled on this thread whilst looking for something else ? wondered whether you'd got any further with this Tinker.
My sister was diagnosed with breast cancer at 33, and since my father died in his early 50s of prostate cancer, and my grandmother of breast cancer (and we've jewish ancestory, which seems to count, too) my GP has referred me for genetic screening, which we're doing. It involves my sister having a blood test, which takes about 6 months to analyse for the faulty gene. I'm also having annual mammograms, although I'm told they're not totally reliable for younger women.
Yes, aloha's right, there is only a very small percentage of breast cancer that is thought to be a result of the BRA1 and BRA2 genes, but with a family history, it should be checked out. Ovarian and (early) prostate cancers are also thought to be linked.
If you'd like me to pass on any info about this, do get in contact ? I'm afraid I don't have much time to look at the site these days.
All the best ? and I hope you're cousin's doing ok.

Frieda - thanks you so much for reminding me of this. I've not done anything yet (which is bad I know) but have been waiting until I had a 'good' reason to go to the doctor's in order to bring this up at the same time. I will get in touch to find out more, thank you.

Saw my cousin the other week at a funeral, looking well but taking it one day at a time. She has had a breast removed though.

I have a very strong family history of breast cancer - both my mother and her sister are in "remission". My mother's 2 aunts and 1 cousin have all died from the disease.

However, absolutely NO-ONE is interested in monitoring/referring me for mammograms - and believe me, I have been round the houses. My GP first brushed me off by saying that I was too young for mammograms (I'm almost 32) and that my breasts are naturallly lumpy at this age and therefore scanning would be inconclusive.

I then decided to contact a private health clinic locally - who have said more or less the same as my GP. My GP did say that he would refer me for monitoring when I'm the age my contracted it then minus 10 years (so my mum contracted it at 48 - he would refer me at 38).

I have been shown how to check myself regularly (and this is important as this is how my mum and aunt found theirs - as they were both under the age of Mammogram screening).

I'm unsure whether I would like to have the Genetic testing done as part of me thinks that if it is positive, I'll then be like a "walking time-bomb" and constantly waiting for it to happen (although I have to confess I'm like that now anyway).

Think I'll tag along with my mum at her next Consultants appointment - who I have to say has been first class