BRCA and recurrence.: Talking to Lily-Anne there... - My Ovacome

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BRCA and recurrence.

ZenaJ profile image
29 Replies

Talking to Lily-Anne there doesn't seem to be any sort of pattern to recurrence but can I just ask the ladies that carry the BRCA gene if they have had recurrence? I'm wondering if there's less chance of recurrence if carrying the gene.

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ZenaJ profile image
ZenaJ
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29 Replies
Jen85 profile image
Jen85

Hi. From my understanding the BRCA genes make it more likely you will get ovarian/breast cancer but reoccurance is possible and sadly fairly common regardless. I suspect stats will become available with time but as BRCA is relatively new finding to be routinely tested for I doubt there is much conclusive dat a available now. I'm BRCA negative and been given same reoccurance odds as everyone else.

ZenaJ profile image
ZenaJ in reply toJen85

Thanks Jen85. xx

Yoshbosh profile image
Yoshbosh

Hi Zena,

I’m BRCA negative, but from the reading I have done, there is some evidence that those with the BRCA gene respond better to treatment options, and of course, have a far better response with the PARP inhibitors. So whilst the risk of getting cancer is higher, the treatment options are more effective. I know that doesn’t exactly answer your question about recurrence, but I hope it helps.

Vicki x

ZenaJ profile image
ZenaJ in reply toYoshbosh

Thanks Vicki. I'm interested in all the info. Whatever the responses it doesn't really affect any of us really as it all seems so random. I just live for today (and tomorrow). Hope you are feeling well.

Best wishes, Zena x

Katmal-UK profile image
Katmal-UK

Hi Zena. Yr probably already aware Im BRAC2 and have had 2 recurrences in 11.years xx Hope your doing ok. Kathy xx

ZenaJ profile image
ZenaJ in reply toKatmal-UK

Same as me Kathy but without the recurrences. Sorry you've had them. It doesn't seem to make any difference if our oc was caused because of the gene or not. I was just wondering.

You take care, Zena x

WorriedHusband profile image
WorriedHusband

Here is a link to the most recent study on this question.

journals.lww.com/md-journal...

Yoshbosh profile image
Yoshbosh in reply toWorriedHusband

I knew I’d read about it somewhere!

ZenaJ profile image
ZenaJ in reply toWorriedHusband

Thanks so much. I've looked through it and it's very interesting. Thanks for replying.

Suzanne333 profile image
Suzanne333

Hi Zena. I’m BRCA2 positive. I’m on third line in two years. I think it’s pot luck. Or pot unluck xxx

ZenaJ profile image
ZenaJ in reply toSuzanne333

Completely agree Suzanne. It does look that way. xx

evemaria52 profile image
evemaria52

Hi, I am BRCA II positive and have had one recurrence since my original diagnosis, surgery, and chemotherapy treatment.

ZenaJ profile image
ZenaJ in reply toevemaria52

Thanks. It doesn't look as if it makes any difference with the recurrence whether we have the BRCA gene or not. xx

Lewisriley47 profile image
Lewisriley47

Hi I am braca negative and on 3rd recurrence in 5 and three quarter years, so I don't think there is a pattern to it.Best wishes Pam x

ZenaJ profile image
ZenaJ in reply toLewisriley47

I don't think so either Pam. Thanks for your reply. xx

Boot1947 profile image
Boot1947

BRCA1 positive, Stage 3a, no recurrence in 4 years (fingers crossed!). Deb x

ZenaJ profile image
ZenaJ in reply toBoot1947

..and toes and legs.

Great news Deb, long may it continue. Zena xx

LittleSan profile image
LittleSan

BRCA negative diagnosed 7 years ago with one recurrence and just about to be treated for another. Xx

ZenaJ profile image
ZenaJ in reply toLittleSan

Oh no, Little San. How did you know it was back? xx

LittleSan profile image
LittleSan in reply toZenaJ

I'd had niggly pains in my pelvis but it was routine ca125 and then CT that confirmed both recurrences. X

ZenaJ profile image
ZenaJ in reply toLittleSan

Lucky you had the niggly pains. It's been a worry to me how I would know if I had a recurrence as I had no symptoms last time. Mine was found by luck. I had something else wrong and it was found during the examination for that. As I had stage 3C I'm lucky I'm still here. x

Bubbles-1 profile image
Bubbles-1

Hi there.. brca1, diagnosed Jan 2015 3c.

1 recurrence after 20 months, now on parp inhibitor.

Michelle xx

ZenaJ profile image
ZenaJ in reply toBubbles-1

Thanks Michelle, sorry to hear you had recurrence. Best wishes for a good recovery. xx

grammeejill profile image
grammeejill

Hi, ZenaJ. Good question, but I really have no clue. I'll need to read that article WH posted. I am BRCA negative. 3B .No recurrence after 3 years. Fingers crossed, of course.

ZenaJ profile image
ZenaJ in reply togrammeejill

I think we've all got everything crossed. It does look as if if makes no difference to recurrence whether we carry the gene or not. Perhaps further studies over a longer period will come up with the answer. I sometimes think there are no answers. It's just luck. xx

GINI-54 profile image
GINI-54

Hi, I’m brcca 1 positive and 3 months after my treatment for ovarian finished they discovers on my scan that I had 2nd breast plus the ovarian is back in my lymph nodes. I think I’ve just been unlucky though.

ZenaJ profile image
ZenaJ in reply toGINI-54

I'm so sorry to hear that. You certainly have been unlucky. It's so random. I'm wondering if life style makes any difference but that would be really difficult to find out and there are no real answers to the BRCA question. Come to think of it there are no real answers to why we get it in the first place. I'm going to contradict myself now as I was told it was the BCRA gene that caused my oc.

Wishing you luck for the future. Zena x

JanePW1965 profile image
JanePW1965

Hi Zena. My mum had her debulking and chemo (Carbo/Taxol) in 2014 and recurred quite quickly by Jan 15. She had Caelyx and then was quite steady for around 18 months then the beast woke up again and she had Carbo/Taxol again and the first three month check was good then the second. It is now 10 months since she finished her last chemo and she is seeing the onc this morning. I'll be on the edge of my seat until I hear from her. I'm praying the beast is still asleep. She doesn't seem to have any symptoms but she didn't when she recurred the first time. She took part in the genetic testing and found she didn't have the BRCA gene. Jane X

ZenaJ profile image
ZenaJ

Thanks Jane for replying. There's no logic to this recurrence as far as I can see. Sorry to hear about your mum. Let us know how she gets on this morning. Think positive thoughts.

Zena x

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