BRCA: Just a little update for those that... - My Ovacome

My Ovacome

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BRCA

ZenaJ profile image
12 Replies

Just a little update for those that remember about my BRCA concerns. I've actually told my son and daughter now and they're not really very worried about it, thank goodness so all that worrying was for nothing. They're both going to take the test so I'll cross my fingers that they are both clear.

I sent some letters to other members of my family but as I was adopted I couldn't let as many know as I would have liked. I did my best.

Thanks for all your replies about the BRCA gene. It does look as if there's no connection to survival rates if you carry the gene or not.

Take care everyone, Zena xx

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ZenaJ profile image
ZenaJ
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12 Replies
Maus123 profile image
Maus123

Glad the kids took it so well, Zena, and fingers crossed for the tests. BRCA means a better chance for parp inhibitors being effective though, right? Xx. Maus

ZenaJ profile image
ZenaJ in reply to Maus123

Yes but I'd gladly have given that up for the children's sake. Still they may not have it. When I think of the months I worried over that. xxx

Maus123 profile image
Maus123 in reply to ZenaJ

Yah I worried too when my mom and I went for the BRCA test, in this case for my baby sister who is only in her 30s and still wants to have children. Looks like we don't have BRCA mutations though, so she should be ok.

Counting on your children to be ok too, Zena. XX. Maus

ZenaJ profile image
ZenaJ in reply to Maus123

Thanks Maus, I'm glad you had good news, it bodes well for your sister. My daughter is in her 30's and pregnant at the moment so she's got to wait until the baby is born before she has the test. My son, also in his 30's doesn't want any children. The good thing is that at least they'll get regular check ups. xx

Maxjor profile image
Maxjor

Hi Zena--Up until my father--and not knowing what was going on when my father got two cancers (no doctor back in the '90s seemed to connect BRCA with men/different cancers/etc.) no women in my family had breast or ovarian. I was the lucky first. I have two boys and the older told me that IF they find out they have the gene, it could effect their ability to be insured if our lovely President's plan to take away pre-existing conditions from a list of pre-requisites to get insurance comes to be. Sad we have to worry about it but we do considering if I did not have insurance, my bill so far would be over 2 million US dollars. I am so glad they took it well and before any testing, just make sure they know melanoma is a BRCA cancer so I tell them be overly diligent about sunscreen and skin tests and bythe time they would have to watch for anything else, I assume they would have been tested by then. My letters/calls to family members was also insightful! Many reactions and not all what you would expect! I wonder what you will hear.....

Thinking of you Zena and wishing you all the best. oxox Judy

ZenaJ profile image
ZenaJ in reply to Maxjor

Hi judy, I have a half sister in Ireland who said she wouldn't be tested. We've never spoken or met because she doesn't want to know anything about our mothers side of the family. I still informed her because she has 4 children that might have the gene. I can't get in touch with them so I'll have to hope for the best. I was told it's probably through my fathers side but as he was Polish and I know nothing about that side of the family I can't inform any of them.

I was told about the skin cancers and the pancreatic cancer risk but we're lucky here in UK that insurance company don't ask about genetic things and we don't have to tell them. I managed to get travel insurance when I was having chemo, and they knew I was, for worldwide cover for me and my husband for £20 which these days is probably about $18.

When I asked my genealogist if it was possible I was the first to carry the gene she said no but she said no one on my mothers side showed any signs of it. That's why she said it was probably on my fathers side. Someone has to be the first why couldn't it be me?

I take it you're not a fan of Trump? Things are not going so well here either.

Hope you are doing well. Where in the States are you?

Best wishes, Zena xx

Maxjor profile image
Maxjor in reply to ZenaJ

Hi Zena--I am in New York. We--and our boys--live in Manhattan (my youngest has been home for 2 years post-college and moving out by end of this month--sad and happy at the same time--I think he stayed this long because I was diagnosed right after he graduated college.) Nope--not a fan of our 45th--but since some on this site may be, better to keep politics out of it :-)

So interesting about not knowing your relatives on your father's side and what can you do--you tried. I agree also that someone has to be the first! May be another reason no one correlated my father getting prostate, then pancreatic cancer (3 years apart) while we kept asking for a connection to which the doctors said none. If I had known....

I am still in the glow of the words NED. My nervousness comes when I am about to get tested and that is not till mid-September so for now, I remain a happy camper. oxox

ZenaJ profile image
ZenaJ in reply to Maxjor

Same as me. You can't help getting nervous when the next appointment is coming up. Mine's nearly 5 years now. Lucky me.

I was in New York last November. We sailed into New York stayed a couple of days and sailed out at night. A beautiful sight. We like New York. We live near London, completely different cities.

I'm really pleased for you that things are going so well. Long may it remain. xxx

Maxjor profile image
Maxjor in reply to ZenaJ

Hope you tell me next time you "rush through" our city Zena! Would be so happy to meet (and maybe show you some sites you would not see otherwise). oxox Four years? Cannot imagine and I may this be forever for you.....oxoxox

ZenaJ profile image
ZenaJ in reply to Maxjor

Thank you. Won't be your way for a while as Hungary and Austria this year and India booked for next year. See, I still believe I'm going to be around. xxx

Solange profile image
Solange

Keeping my fingers crossed for your children not having the BRACA gene🤞The good thing if people do carry the gene is that they respond better to Chemo etc than non-BRACA people, my Onco says. Thankfully I don't carry it as I would have so many family members to worry about, being a fairly big family. Hope all goes well for you. Love, Solange 😊

ZenaJ profile image
ZenaJ in reply to Solange

Thanks Solange. I'm pleased you don't carry the gene. I have a massive family but only met 2 of them due to being adopted. I worry for the rest but can't help them. I have contact with a niece and a cousin on facebook and have managed to contact them with the details and will have to leave it up to them to pass on the information.

Hope you are keeping as well as possible. Zena xxx

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