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[Mum8757]

Hi Everyone,

I'm writing on behalf of my mum. Aged 60iagnosed HGSOC stage 4 Feb 2022. Initial plan was debulking surgery 1st, went for surgery too much disease( closed her up) so decided to have chemo first, with the plan to retry after 4cycles.

A lot of waiting finally started chemo May 2022. Repeat CT and review with oncologist after 3 cycles show no real response, no progression but minimal improvement. CA125 148 FEB, now 410.

lookslike she is platinum resistant, just wondering has anyone had similar experience? aying they are not re attempting surgery

[LouieB123]

Hi Mum8757, I’m no expert on this but wondering if they’re offering her a different chemo option? I know they sometimes offer just the one drug (taxol etc) if resistant. I also just wanted to say I’m also a daughter in this forum who often looks for advice and support in relation to my mum. She is 65, was diagnosed at 63, stage 3 HGSOC. I understand how hard it is… sending you love and positivity, Laura xxx

[Lyndy]

I think your Mum might benefit from a second opinion at a specialist centre and maybe a visit to a specialist surgeon too. I am sorry that you and your Mum find yourselves in this position but I think it would be good to give her more options now if you possibly can xx

[Suziejasp]

Hi,I’m also supporting my mum on her journey who was diagnosed high grade 3C in January 2021.

My mum was told she wasn’t suitable for surgery after 3 rounds of chemo at the centre she is being treated at, but after much research on this forum we found an amazing surgeon who attempted the surgery and was able to remove all visible cancer. She is excellent, it’s worth contacting her to see if she can help - Christina Fotopoulo. I emailed her and received a reply the same day. We had a private consultation with her, followed by NHS referral for the surgery.

Sending love x

[Mum8757 in reply to Suziejasp]

Many Thanks, we have a private review with Christina arranged, did she do the surgery on the nhs?? Thank you x

[Suziejasp in reply to Mum8757]

Yes she did the surgery on the NHS. Once she had seen us privately and agreed to do the surgery, we asked our current team to do an NHS referral x

[win_56 in reply to Mum8757]

Christina is amazing. She did my 2nd surgery when my surgeon said no. I tried the Royal Marsden and Christie's Manchester and they said no to surgery as the cancerous lymph nodes to close to the aorta, they were deep Infront of my lumber. Christina and her team successfully removed them last December. Ive had post chemo to mop up and at the moment I'm NED. She is an amazing surgeon and we are so privileged to have her in this country. Wishing your mom all the very best. X

[OvacomeSupport Partner My Ovacome Team]

Hello Mum8757,

A very warm welcome to our online community. I can see that you have already had a number of informative and supportive responses from forum members which I hope have been helpful.

Please know that we are here to support you and your Mum so do get in touch we can help with any information or if you would ever like to talk things through. Our support service is available Monday – Friday 10am – 5pm and you can contact us by calling 0800 008 7054 or by emailing us at [e-mail]. We would also be very happy to arrange a video call if you prefer.

I also wanted to let you know that we have a friends and family support group that is held on the last Tuesday of every month over Zoom. The next meeting is on 26th July at 5pm. Here is a link to some more information about this if you would like to find out more: ovacome.org.uk/event/family... . If you would like more information about our groups and workshops at Ovacome, please do let me know.

Best wishes,

Cathryn

Ovacome Support

[NewtonEmma1900]

Christina Fotopoulou did my surgery too. Just look her up on Google - she does amazing work!

[Cumbrianlass5]

I was diagnosed over 2 years ago stage 4 high grade and also had chemo in hope of it shrinking cancer enough to operate. When I was told I was inoperable I thought my time was almost up. But here I am still going strong. I was on nariparib parp inhibitor for 9 months until it stopped working. I am BRCA negative and there would have been more options of different parp inhibiitors if i had been BRCA 1 or 2. However, am delighted I am BRCA negative which means my daughters will not have inherited a faulty gene.Ask about avastin (an imunotherapy drug used in OV cancer) or about a parp inhibitor. If your oncologist is not being helpful ask for a second opinion. I had second and third opinions on NHS and my original onc did not get offended. He is giving me second line chemo at the moment as his hospital is more convenient for me.

Don't be donwhearted. There is still a lot that can be offered. Best wishes to your mum and to you x

[Mum8757 in reply to Cumbrianlass5]

Thank you. She has a review with Christina tomorrow and Oncologist Monday. Thanks that gives us a lot more hope than we have had this past few week xx