Hello, I have had breast cancer and have had a masectomy and just completed a course of chemotherapy. During an appointment with the reconstruction consultant she questioned why I had been genetically tested. I have now looked into this and have an appointment at the beginning of March, I received a form in the post to fill out about family history and then realised while looking into the family history that my great grandmother had breast cancer. Does a genetic link go this far back and does this mean I have the breast cancer gene? I’m really scared as to what this is going to mean for my other breast and possibly my ovaries. Does anyone know anything about this?
*Sorry I meant hadn’t been genetically tested*
Hello Stickytoffee
Welcome to the forums, this must be a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
I have added a link to our publication on Breast Cancer in families, just follow the link to see or order the booklet.
www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32
You may also like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
June, moderator
Hello Stickytoffe,
Hopefully Lulu34 will be along soon, as she is knowledgeable about this area. In the meantime please find attached a couple of links. The first is a BRCA testing guideline, which might give you some idea if you fill the criteria.
The second is a booklet from the Royal Marsden which gives some good information about BRCA.
Can I ask if you are younger and had a triple negative tumour, as that was the main reason that I qualified for a test, the only linked cancer in the family that I knew of at the time was an aunt who had ovarian. It looks like my gene fault came down from my grandad via my dad, so no women in the line and no significant history of breast cancer. I had to ask for the test, it was not suggested to me by anyone.
I only found out a few weeks ago so am waiting for referrals to discuss my options.
If you have any further questions please ask.
Jen
icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18707.pdf
Hi sticky toffee
They want your family history so they can look and see if there is a likely hood that you may have a genetic cancer.
First of all starting with yourself… Most people do not fit the criteria for testing but you must have certain attributes that would make him consider that your BC could be genetic… To get a genetic test you would normally have been diagnosed with triple negative breast cancer under age 40, have a personal history of both breast and ovarian anger or have a significant family history of breast and ovarian cancer… Typically 4 incidences of cancer in 3 generations.
I carry a brca 2 gene and I have no history of BC on my dads side of the family where the gene has come from… This is fairly unusual to have a gene without a big family history but it can happen… In April 2006 I had breast cancer at 37 then again at 40 this one was TN and then a recurrence 5 months ago of the TNBC.
Yes gene mutations can go back many generations but it would be unusual if your great grandmother had daughters or granddaughters who never developed but her great granddaughter did… However if it was on the paternal line… Your fathers, fathers, mother… Then this could be genetic.
Now having a gene test is not a definite diagnosis… Firstly you may not actually fit the criteria for testing… If you do fit the criteria you do not have to have the test or to have the test immediately you can do it when you want or may decide never to have a test.
If you do decide to get tested then they do a full analysis and this takes many months to do usually about 4-6 months. There are three possible results… 1) they may not find any gene mutation… This doesn’t mean there isn’t one but just not one they have currently identified. 2) they may find a gene change called an unknown variant or of unknown significance… This is a change on the gene but it has not had any reported cancers associated with it… This could be because it’s rarer and it may accoun for cancers or I may not… So with either of these scenarios oh don’t know much more than you know today… And 3) a pathogenic gene change may be present this s one that I known to cause cancers.
Only 5% of BCs are genetic, only 20% of those who fit the criteria and get tested are found to carry one of the gene changes… So it has a higher chance of not being genetic or not being definitively genetic than moving back with a definite genetic fault.
If you do have a gene change then other family members can be offered a predictive test which is looking at the exact place on the gene where the fault is to see if they carry the same change.
If you or any family members are found to carry a gene fault you can opt to hav risk reducing surgery… Mastectomy and having ovaries and tubes removed ( bilateral salpingo-oophorectomy BSO). Or to have more intensive screening of the breast but unfortunately no accurate screening is available for ovarian cancer.
Even if no gene change is found then your lose family members may still be eligible or early breast screening.
Sorry for the essay!!!.. Hope it helps and the marsden booklet Jen mentioned is very useful too.
Lulu
Thank u so much for your comments they have been most helpful.
Yes my tumour was triple negative and I’m 28.
I have an appointment with the genetic department on 6th March so will hopefully find out more then.
Many thanks again
Tegan
Thanks Lulu for this answer,
I’m 30 and also triple negative… Like you Tegan my great-grandmother on my dad’s side had a double mastectomy. It has been mentioned to me about gene testing which my surgeon is recommending.
I’ve only just started fec-t chemo so a while away from it all yet. It does sound like it can be inconclusive as such in terms of making a decision about further surgery. Hmm, lots to mull over!
Sarah x