New member: Hi dear ladies I wanted to share my... - My Ovacome

My Ovacome

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Christina87 profile image
3 Replies

Hi dear ladies

I wanted to share my story here.

I had ovarian cancer 10 years ago stage 1, I did 4 rounds of taxol, and never had problems anymore until now I'm diagnosed with breast cancer Lobular carcinoma . I'm very nervous because my doctor didn't recommended me never to check for gene mutations as I didn't have family history. But my brother he lives in America and now he is diagnosed too with breast cancer he did the BRCA1 and BRAC2 he told me it was negative, I live in Europe so I decided to do by myself the test without insurance . I'm estrogen positive. But I want to know what other genes to test too . I will consult with genetics doctor but I want to be my own advocate .

If you know any information what genes can develop ovarian and breast cancer please tell me. Or if anyone has similar situation.

I want to know maybe I can be a candidate for Parp inhibitor ...

Thank you . Hugss 🌹🌹🌹🌹🌹

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Christina87 profile image
Christina87
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3 Replies

Hi Christina

Sorry to hear about your new diagnosis..........

I had genetic testing done with a company called Oncologica in the UK ( I'm in Ireland). My oncologist organised this after I had failed my third line of chemo. The results showed that I was BRCA positive in my tumour - this is different to having it in the blood which is genetic. So I'm now taking a parp inhibitor called Olaparib for the last 5 weeks and my tumour markers have dropped from 1900 to 1400.

I also had breast cancer in 2001, and it returned to my supraclavicular in 2004.

I hope this helps!

Juliet

Lyndy profile image
Lyndy

Hi there

There are other gene mutations and unknown gene mutations that are being linked with these cancers. So just because you are BRCA negative doesn't mean it can't be genetic. But this research is very new. I would start by ringing one of the help lines (ovacome Target or Macmillan) and talk through what to do next.

I was BRCA 1 and had an interview with a geneticist at Addenbrookes which was really informative...I suspect you might benefit from a similar chat but if you are not going through NHS I am not sure how you would arrange this.

Also look at FORCE (facing our risk) website which is largely US but they have an annual conference with international contributions from geneticists working in this area. Best of luck L xx

85live4ever profile image
85live4ever

Hi Christina, I am so sorry you have a second cancer it's bad enough dealing with one now another cancer must be really hard.

I am very interested in the gene side of this disease & breast cancer. I have 5 members of my family that had oc & bc with me makes 6. My mum, her sister, my cousins had oc & 2 cousin's had bc & I have oc.

Other than my mum we have all bend tested for the BRAC 1&2 gene but we are all negative. I know the gene clinic have been investigated my family for many years. They haven't come up with any connection in the genes that give us any answers. They are confident there is a fault but just can't find it.

I have looked up other genes other than the BRAC genes that are connected to oc. I am not too sure if they are also connected to bc but any way here they are; RAD51, BRIP1, PAIB2, AKT1, BARD1,CDH1, CCHEK2, CTNNB1. I hope this helps.

I am in the UK so I don't know how you would access gene testing from some where else. Good luck in finding some answers. Take care Cindyxx

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