Son's girlfriend

[Guest user]

Good luck to Rae and to your son's girlfriend Jayne. I inherited a faulty BRCA1 from my dad and like PWC have strong feelings about this as was told twice by my previous GP practice in 2007 not to worry as cancers were on my dad's side of the family. If I'd been referred to a geneticist then I might have avoided breast cancer myself. My father and his 3 siblings all turned out to have faulty gene, one breast ca, one ovarian. ca, one prostate ca and one brca+ but no cancer. So far with myself and my 4 sibliings, I am the only one to test positive; two sisters BRCA- and two brothers not yet tested. One of my daughter's tested positive and other daugher and son not yet tested. BB xx

[raechi]

Lulu,
Thanks for clarifying on this. Addenbrookes have agreed to see me, so we will see what happens. 🙂
Rae
X

[Lulu34]

Can I just respond to some of the earlier comments about getting genes coming through your dad.....

Yes you can get the gene from him even if he doesn't have cancer.... Breast cancer in men is very rare. The risk of breast cancer in women with gene mutations is around 60-80% but for men although it is increased it is still less than that of women in the general population around 1-5% depending on the mutation.

It's is equally as common to get the gene from your mum or your dad and you can pass it on to your daughters and our sons.... Your daughter would be likely to get cancer at sometime in their lives before age 60 but your son would not be so likely to develop cancers.

Other cancers associated with the breast cancer genes are pancreatic and prostate.

I inherited my brca 2 mutation from my dad... He's 65 and never had cancer but does have the gene.

If you read all the genetic mutation info availble from reputable places like the ICR (not a gp who just do not have the specialist knowledge) you will see that it says first degree relatives or second degree through unaffected males.

Horace I think probably what your doc meant was not that the risk of BC coming from your dad was less significant but more that the relative was over 60.... Had she been under 40 this would have put you at considerable risk despite your dad not having cancer... Hope that makes sense.

Reaching your aunts lung cancer will not be relevant unless this was actually a secondary cancer from breast, ovary or pancreas.... The fact your dad had pancreatic and his mother had bilateral breast cancer at a young age makes it more likely.

The main criteria for being referred is young onsent cancers in three generations but there are other cases which would specifically mean you could tested and not just a referral... Many people who are referred to genetics do not fit the criteria for testing. But it's basically in families where there is....

1 triple negative BC under age 40
1 person with breast and ovarian cancer
Two ovarian cancers
Two breast cancers under age 30
Two men with breast cancer

The criteria for screening and testing can be found on the ICR website....
http://www.icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18705.pdf
http://www.icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18707.pdf
http://www.icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18708.pdf

Hope that helps a bit.

I'm a Genetic Breast Care Nurse so if I can be of any more help let me know.

Lxxxx

[21210]

Raechi,

I am being referred to genetics team, this has come about after i recently changed hospitals, at my original hospital genetics were never brought up but when giving family history at new hospital the Onc looked up straight away & suggested that i be referred to genetics team. My history is Dad, Uncle (dads brother), Grandad (dads dad) Prostate cancer, Grandmother ovarian (Dads mum) & me Bc. My Onc said there is a strong link between Pancreatic,Prostate & Bc for BRCA 2. Have also Pmd you a number that may be helpful.

Sarah.x

[Guest user]

Hi Rae,

I hope your GP is helpful. If you go to a group practice, maybe choose to see one of the GPs who you perhaps 'click' with better. I have to say the GP I saw was great. I actually got a genetics referral some time before I even developed symptoms of breast cancer (because of other cancers prevalent in my family). By pure coincidence the GP I saw undergoes regular screening for a family history of bowel cancer so he was especially switched on about the ramifications (he readily shared this fact with me).

I don't know where you are in the country but I found the Geneticist I saw at the Oxford Genetics Dept to be very thorough and efficient which I feel is important.

Best of luck.

[raechi]

Thanks PWC.
I'm struggling to get genetic counselling. Even though i feel i have family history on my dads side.

Dad - pancreatic cancer 44 (dead)
Auntie (his sister) - Lung cancer 52 (dead)
Paternal grandmother - breast cancer at 41. Double mx. now passed away.
Auntie - his sister. Suspect breast lumps, but no cancer.

May be there is no link - but i am worried about it. And i have a younger sister, plus i have no children yet and would be worried about passing something on.

I think the GP may be my best route, as my Onc is not being helpful.

I didnt think you were being stroppy by the way.

Rae

[Guest user]

Hi Folks

Just dipping in here again.

I do of course realise that if someone hasn't inherited a gene variation, he/she can't pass it on the their offspring. This girl's father could have inherited the gene variation but not got breast cancer (like my dad). His siblings could all have individually inherited it, or none of them, or a few of them. If it's proven that 2 siblings in a family have a inherited a gene variation it doesn't follow that a third probably won't, the third has an individual 50% chance, just like the rest of them.

Many people are probaby a lot more eloquent than me on this thread but it does concern me that people assume that a father's family history is not just as important as a mother's when it comes to breast cancer (or ovarian cancer for that matter). A man has just as much chance of inheriting a gene variation from one of his parents as a woman does. If he does inherit the gene variation that man may or may not develop breast cancer and cannot develop ovarian cancer but each of his offspring (boys or girls) individually has a 50% chance inheriting the gene variation.

I apologise if I came across as stroppy yesterday but this is something I feel strongly about as all the cancers amonst my relatives (primary brain, lower bowel and ovarian) are on my father's side of the family and it's now also proven that my BRCA1 variation came from that side too.

(It also scares me that there are people out there who think men can't get breast cancer, but that's another discussion all together!).

[Guest user]

Thank you Eliza. Im sure she will bring the topic up again at some time and at least I will be better informed than I was.

Jayne x

[Eliza]

Sorry, I meant to say a chat with the GP and armed with the Macmillan info.

[Eliza]

The decision about whether or not to have genetic testing is a very personal one, but if you are at high risk you can usually have early screening without having to go through testing. The Macmillan site has a very basic risk assessment tool (called OPERA) which you can use to form the basis of a discussion with your GP about referral to the genetics service.

Sometimes a family history on your father's side is actually more significant. This is because many men who carry the gene don't develop breast cancer and so can pass on the gene without appearing in the list of affected relatives - and they don't get ovarian cancer. They do get prostate cancer, of course, but that is a bit more complex in terms of assessment and age is relevant here.

Val is right that breast cancer after 60 isn't so significant but it does still count in the assessment of risk, and having a substantial number of them in a family is significant.

If she really is worried then I would have thought that a chat with her GP is a good starting point. S/he could then say if they thought it might be a good idea to take things further.

Eliza

[Guest user]

Thanks everyone. My son's girlfriend and I have actually talked about it and I know it worries her and that's why she tried approaching the GP. If I got any death certificates it would just be my helping her find out what she wants to know.

Thanks for the links to the information and she can have a read of it before deciding if she wants to persue it. I suppose I just wasnt sure whether this history sounded as though it should be investigated. How awful if in a few years time she was diagnosed with bc and I hadnt at least mentioned it to her.

[Lemongrove]

I don't know if your sons girlfriend has a genetic pre-disposition to BC, because I'm not qualified to say, but I think if you're concerned enough to be considering the access of birth certificates, then you must believe there is a risk. So I would say, have a heart to heart with her, and see if you can get her agreement to access this information(even at the risk of the girls mum thinking you're an interfering busy body). The fact is, if she turns out to have the gene, her mum will thank you, because you may have saved her life, and if she doesn't, at least she will know for sure.
Having said that, there is a saying that you can lead a horse to water, but you can't make them drink. If she says she doesn't want to know, then I think you will have to leave it until she decides otherwise.

[Guest user]

Hi,
The link below is to a site where a beginners guide to BRCA 1& 2 can be downloaded.

http://www.royalmarsden.nhs.uk/consultants-teams-wards/clinical-units/cancer-genetics-unit/pages/brc...

Hope this may be of help to some of you wanting more info on the genes.
I was diagnosed with BRCA 1 in January, believed to be passed down from my paternal grandfather.

[Guest user]

PWC-if the girlfriend's father doesn't have/didn't have the gene, he couldn't have passed it on to his daughter. Like Horace, I also qualified my comment by saying "the likelihood is....".As there is doubt as to the father's situation, I qualified my statemnet accordingly.

[horace]

I did say 'may be less significant'.I was quoting what I was told when I had genetic counselling [ironically before my dx].I have a muddled family history.
My mum's sister dx at 75 died at 78
My mum's brother's daughter dx at 49 died at 53 and her younger sister died of ovarian cancer aged 45-BUT-their mother also died of ovarian cancer[in her late 60's]
My dad's half brother's daughter dx with tnbc at 62 and still NED now aged 73.
My letter said thet dx post 60 was not statistically relevant and the cases from the paternal side may not be significant.
Two years later I was dx with tnbc but refused testing as they referred back to the letter and I was 62 at dx.

[raechi]

Thanks both. I will have a read of the guidelines.
x

[Guest user]

There are NICE guidelines for this available.
http://www.nice.org.uk/nicemedia/pdf/CG41NICEguidance.pdf
Choosing to be referred for genetic testing is a very personal decision. If I was in this position, I wouldn't influence in any direction. My husband and I are carriers of a rare genetic metabolic (life threatening) disorder and after our first son was born with the condition, our genes were checked to map the specific defect, informing our siblings and parents was a very delicate situation, and some siblings chose not to know. The decision should be hers.

[Guest user]

Sorry Elaine D - I also disagree with you. There is a 50% chance of inheriting the gene. Statistically speaking, all siblings in a generation could inherit it, or none, or a few. Also, not everyone who inherits a pathogenic gene will develop the disease but they could still pass the gene on to their offspring who may or may not develop the disease.

Rachael - oncologists may be great at what they do but they are not geneticists. If I were you I'd go to my GP and ask for a referral to a geneticist.

[Guest user]

Has her father died from BC? If not, then the likelihood is that he doesn't have the gene. 2 siblings affected out of 3 (if that was indeed the case),is probably as many as would be found in that generation.

[raechi]

Hi Ladies,
Do you know where i can find the rules on genetic testing?
My paternal grandmother had breast cancer and my dad died of pancreatic cancer at 44. (i'm 37). My dads sister has also had suspect lumps but nothing has been found. His other sister died of lung cancer.
I do wonder if there is some genetic link my family. Right now my onc is being evasive.
Thanks,
Rachael

[Guest user]

Permit me to disagree on something you have said Val - "Although as it is the paternal side it may be less significant" - this is factually incorrect (sorry if that sounds blunt but I do get a bit wound up when I read stuff on this forum which I know is factually incorrect). It is just as relevant whether it is the maternal or paternal side. I know because I have been through the process and know I have inherited a BRCA1 variation from my father (who has not had breast cancer) and this certainly has been recognised as significant by the GP, geneticist, breast surgeon, oncologist, gynaecologist and radiologist.

Jayne - if your son's girlfriend wishes to pursue this could she not ask her GP for a referral to a geneticist who will be able to give the correct assessment and relevant advice? Obviously it will have to be entirely her decision whether to go along this path. Believe me, it can open up cans of worms in families (e.g. questions about biological paternity, people who do not know that they are adopted). Furthermore, there is certainly no guarantee of any definitive conclusions. As you probably know, in the UK, armed with the relevant information it is possible to apply for a copy of a death certificate whether or not you're related to the deceased (I know because I've done it twice). If you choose to find out what your son's girlfriend's (and her sisters') paternal aunt(s) died of that's your perogative but can they not do this for themselves if they really want to know? It rather depends on what your son's girlfriend might seek to achieve with a referral to a geneticist. If she wants enhanced screening has she asked for it on the strength of her own medical history of breast cysts?

For me the genetics referral has lead to a useful, if painful and inconclusive process which has lead to relevant prophylactic surgery and enhanced screening. However, I have also had to accept that my siblings (who have children themselves) do not want to know about the genetic evidence of various cancers in our family. If your son's girlfriend and her sisters don't want to know you may have to accept that too.

[horace]

I know that a dx post 60 is not regarded as relevant. With regard to the others you need to be sure the girl concerned wants to know. If she does then certainly with the possibility of two close relatives dx in their thirties there may be some reason to look for genetic counselling. Although as it is the paternal side it may be less significant.
I do think you need to be careful,this really isn't for you to do. I would certainly see why the girl's mum would object-any 'waving the death certificates is for the family to decide on. I don't really think you should make any application without their consent.

Valx

[Guest user]

Im a member of the forum after receiving a DCIS diagnosis, which for which the treatment has thankfully finished, but this has raised in my mind my son's girlfriend's family history and I would really like to know where to go with this.

Her paternal grandmother died at the age of 62 from breast cancer in 1986. She had two daughters and a son (who is the girlfriend's father). Both daughters seems to have died young (Im a family history enthusiast!). One aged 31 the year after her mother (we think of breast cancer) and the other aged 38 in 1992. There is no contact with the second family so the only way I would definitely know if this was breast cancer is getting the death certificate.

My son's girlfriend has already been diagnosed with cysts at 25, but the doctor isnt taking this connection seriously. What I really need to know is should she be insisting on genetic testing? If so I will get the death certificates for her to wave under the doctor's nose. She would really want to know, although Im sure her mother would think I was interfering! She has 3 sisters too!!

Any thoughts would be gratefully received!

Jayne x