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Genetic tests :/

4 REPLIES 4
Lulu34
Member

Re: Genetic tests :/

Hi katie

i have a brca 2 mutation. I have had bc three times with two prisey tumours one was ER posiive and one was triple neg and a recurrence to the chest muscle from the tnbc one.

I havent had mastectomy as i had wle for each op and now im undecided about having such radical surgery as not much out there on the risk of a third primary tumour. I did request bilat mx at the time of second diagnosis but wasnt known to be carrying the mutation at the time or im sure my surgeon would have done and afterwards it was hard for me to opt to have it done when i was feeling well. i have annual mammos every winter and annual mri every summer.... i have a brca1 friend diagnosed at 23 who has the same.

the guidelines are for non-affected carriers to have screening from 30 but you may be able to negotiate somethng locally before this as you are affected. (At my hosp only affected women currently get mri as uts not yet available for unaffected gene carriers due to financial restraints).

I discovered that the two brca2 cancers in my family both died by the time they were 45 one from panc ca and one from ovarian so i had my ovaries removed two years ago as i was 42. On the day of the op i requested a hysterectomy instead follwing a scan theday before which showed enometrial thickening from the tamox and decided that it would be one less thing to worry about.... But ifi was 20 years younger im not so sure i would have made the same decision.

it is a very personal choice but they should still offer the option of risk reducing surgery and to speak to a surgon even if you decide against the surgery. It might be useful to chat to somebody about your options.

if i had known i was a gene carrier i may have opted for bilat mx at the outset, but now i feel that i have had that increased risk of bilat bc So is there any point.... My mri last year picked up my recurrence.

i know my plastic surgeon was keen for me to have bilat mx and i said i would do that if i got another tu,our in the breast his reply was if you would consider double mx after cancer... Why not consider it before cancer? He does have a point but i wasnt in the right place or it at that time but its something i may still consider in the future.

Lulu xxx
Guest user
Not applicable

Re: Genetic tests :/

Katie,
Please find below a link to the Royal Marsden website where you can get a booklet on BRCA, which includes info on screening and risk reducing surgery.
http://www.royalmarsden.nhs.uk/consultants-teams-wards/clinical-units/cancer-genetics-unit/pages/brca-booklet.aspx
Please remember that only a small proportion of people tested actually come back with a positive result for a BRCA gene change.
The risk reducing surgery will always be your decision.
I have tested positive for BRCA 1, after being diagnosed with triple negative tumour at 34, and have decided to have ovaries removed as both aunts on the affected side have now had ovarian cancer, the youngest at 37 (and I am now 36). I have postponed my decision about a preventative mastectomy at the moment, and instead am having annual mammograms and MRIs.
For BRCA mutation carriers most ovarian risk is after the age of 40 for BRCA1 and after 50 for BRCA2, so it is likely that even if you came back positive for a BRCA gene change they would not necessarily recommend ovary removal before 40, particularly if you want children.
Also in my case, because I had eggs frozen before chemo, I am not having a hysterectomy, to allow the possibility of using the eggs in the future.
Hope this helps
Jen
Guest user
Not applicable

Re: Genetic tests :/

Hi Katie
I have recently been told I am BRCA2. I have already had a bilateral MX because I had cancer in both breasts, despite this I have only been advised to have my ovaries removed, as I am 44 and have already got two sons I have decided to ask my gynae consultant to give me a full hysterectomy, however, my oncologist said he wouldn't want to do this. I explained my reasons and the amount of cancers which have affected my family and she has now agreed to back up in my quest for a full hysterectomy. So I think you should consider what you want and discuss this with your consultants to agree what is the best road for you. I am also taking tamoxifen.
Good luck with your treatments
Little Nicky xxx
chance
Member

Re: Genetic tests :/

Hi
I was diagnosed with breast cancer in summer 2010 and have undergone a bilateral mastectomy and reconstruction. I have also had both ovaries removed as i am BRCA1. My 20 yr old daughter is also BRCA1 and has had a bilateral mastectomy too, preventive only. She could have chosen to have annual MRI scans but these were only available from age 30. There may be other monitoring options you could go for, depending on what is funded in your area. Also, they advised that she should have her ovaries out (not a full hysterectomy) but not until at least her late 30s as the risk comes later with ovarian cancer.
I hope this helps a little, good luck.
Jan

kt23
Member

Genetic tests :/

Hi ladies I have not been on here for a very long time.
I had appointment with genetics to see if I am carrying the brca genes as I was only 23 when I was diagnosed with estrogen posbreast breast cancer. What I was wondering is if I am already taking tamoxifen and they find out that i carry one of the genes if they will still advise to have a double mastectomy and histerectomy?

hope to here from someone soon

katie x