I am 45 years old and in July this year I was diagnosed with Stage IIC high grade serous tubo-ovarian cancer. My cancer was found in my left Fallopian tube and I had a 16cm cyst on my right ovary which was cancerous.
My operation consisted of a Laparotomy with bilateral salpingo-ophorectomy, hysterectomy, omentecomy, pelvic and para-aortic lymphadenectomy - complete resection.
I also have Germline BRCA1 mutation.
I am due to have my sixth chemotherapy infusion next week of Carboplatin and Taxol.
When I spoke with my nurse she said that I wouldn’t be entitled to go on a par inhibitor after chemotherapy, however as I have the BRCA 1 gene I thought that I would. Has anyone been in the same situation and if so what medication if any was offered after chemotherapy.
Thank you in advance for any replies
Katy
Written by
Buddyk21
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Hi, not sure why your nurse said that, I was tested at the beginning of my journey prior to chemo starting. I was told I did not have the Braca gene but it turned out it was there somewhere as I was told further down the line that I would be eligible for olaparib. I also wasn't initially offered surgery but again as things moved forward the MDT team looked at my case and thought I would benefit from that so I went ahead had mop up chemo and was started on the inhibitor 6 weeks after. What I'm trying to say is things do change as you go through the treatment. I would ask your oncologist why they don't think your eligible dont just take the nurses word for it. Good luck.
Hello, I would have thought you would be eligible for Olaparib but I believe there may be some restrictions around stage and timing. It has become usual for patients to be offered Parp inhibitors after first line treatment but only for two years.I would ask your oncologist to clarify what the position is in your case…don’t take anyones word for it. Even if you don’t get a Parp you might get Avastin perhaps?
I think the onc has to apply to Nice within 9 weeks of last chemo to fund your Olaparib so you should be starting it within that time frame. I also think your nurse is wrong. Ask your onc. I have just had la st chemo of 6 chemos and the op and am BRCa 2. My understanding is you are eligible fir Olaparib. The plan is. To start me on Olaparib just after Xmas. Go, girl, go!
I agree with the above and think your onco is the person who will make a decision. However there is a staging limit on parps. You were a low stage. I am brca 1 and did not get a parp because was 1c. However I have been fine without it and now, having been ned for 2 years am not so worried. Best of luck
This link is to the NICE guidlines and allows you to see the pathway treatment should follow depending on stage and brca status. You can tap on the box that relates to you to follow the pathway .
I think generally this is the guide Drs use but I guess personal circumstances will be taken into consideration too.
Hello, sorry to hear of your diagnosis, I hope you are coping ok ?I was put on a parp inhibitor (Niraparib) and despite many people in my family having cancer I was BRCA negative. I was diagnosed with stage 3 and was told being given a parp inhibitor was based on your staging and usually only offered to those at stage 3/4. This may be different around the country so advice would be to ask your consultant. Very best of luck and please let me know how you get on.
You are suitable for a parp inhibitor if you are BRCA 1 or 2. Insist on it or get a second opinion. I am BRCA negative but was given the only parp available to that group of women, Niriparib, which is wonderful. I got both second and third opinions from two other different hospitals and both agreed I should have it. My GP referred me for the second opinion and my cancer nurse for the third. Keep pushing for your rights. Best wishes x
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