Decisions

[Fizzgirl]

Hello, I have HGSOC now grade 4 spread to liver abdomen and bowel and have just finished 6 months of weekly taxol with a week's break every 3 weeks. CT scan shows good result with nodules stable or have shrunk. I have been given a choice to continue taxol indefinitely or to watch and wait to have chemo break for 3 months and then be eligible for a clinical trial as the cancer will have spread. CA125 currently 21. I work three days a week sick pay now all used up so my decision also has financial implications since I'm single and there is no other income coming in. Asked oncologist for SR1 form so I could access my pension but she said I'm not at that stage yet. Has anyone else faced this decision ? I'm just in meltdown. Thanks for any advice xxx

[candyapplegrey]

So sorry to hear about your situation. Wish there was something I could do. I notice your CA125 is low. Do you have clear cell? I would definitely take a break from chemo. Some studies have shown that this can work better than having it all in one go. Better still if they use a different drug. Must stress I'm not an expert, however.

Has your oncologist got a clinical trial in mind?

Yes. I work for myself so no work, no pay, and naturally, no sick pay, no holiday pay, etc. but have savings to use up. If you have money worries, Macmillan can provide advice over the phone.

Also single but have the help of my sister. Do you have family/friends to talk to?

Sorry not to be more help but just wanted to send you some virtual hugs. xx

[Fizzgirl in reply to candyapplegrey]

Thankyou so much for your reply. My cancer is high grade serous, CA125 was 9 when I was diagnosed so not a good predictor but since the cancer has spread it is a better indicator. I asked to be referred to The Christie for a clinical trial and visited last week. Can only be referred when cancer has spread unfortunately.

I have a fantastic family and great friends so a good support network thankfully.

Since CT showed disease is stable have been advised that a break would allow recovery from the toxic effects of chemo and that seems my likely course of action since I could go back to work even if its for three months or so depending on symptoms.

Wishing you all the best for the future, I too have a sister who is a great support.

Thanks again for the reply I don't think people appreciate how difficult it is to navigate this disease and the financial implications when your single, man or woman

[Newbery3]

Hi👋 Just on the money worries, have you applied for any benefits at all? I am stage 4b in Remission but I was awarded Esa and Pip as soon as my sick pay ran out, I had help with the forms from "Catchup" a charity that supports you in claiming what your entitled too. You can still work and claim some help. I also claimed my pension early with help through my HR and occupational health, I think you need to speak to your onc again about supporting you on this too. At least then you don't have the money worries on top of everything and can concentrate on your health choices. Good luck xx

[Fizzgirl in reply to Newbery3]

Thankyou for the tips will get on it straight away. All the best to you xxx

[Newbery3 in reply to Fizzgirl]

The tip is when filling in the forms to write how you are on your worst day's. You are entitled to it, unlike a lot of people in the UK fiddling the system! That's what my cns told me as I felt like a cheat. We are after all fighting the big fight 👊💪ring today and get it sorted x

[Fizzgirl in reply to Newbery3]

Thanks will do xxx

[SopSinger]

Sorry to hear you are going through all this. I definitely recommend Macmillan for help with applying for benefits and the various forms you have to negotiate. Sending hugs!

[Kieran2018]

Morning,

Your journey is very similar to my own . I have oc now spread to my liver and small bowel. They offered me taxol and avastin . I asked you all for advice weather to continue with the treatment and I decided to go with it . However I had dental treatment and they can’t give me the avastin now for six weeks . As for work I gave up as I physically couldn’t do the job . I was a nurse and once they heard oc they wanted rid of me . I had a work pension which isn’t great . I came out on a tier 2 which is supposed to be better however the stress of it was terrible. They usually terminate your contract that is the trust. But they forced me to resign which saved them thousands. They said if I didn’t I would loss the tier 2 . I asked my consultant for a letter to give to occupational health . The letter wasn’t helpful at all saying to wait and reassess . However I got supportive letters for the consultant who did my surgery and my Gp. I really feel for you I hope whatever decision you make is right for you . I know I physically couldn’t work now . I do miss work my life was turned upside down . McMillan provide financial support . I really hope you get the support and help you need to make your decision. Xx

[Fizzgirl in reply to Kieran2018]

Thankyou so much, it is very stressful. I wish you well in the future sorry that you too have had to go through this when like me you work in the health profession you would expect more empathy xxx

[Kieran2018]

Hi Fizzgirl ,

I worried so much but it turned out okay . I know it will for you to . A lady In McMillan helped me to get PIP . Contact them and I wish you all the best.

Xx

[OvacomeSupport Partner My Ovacome Team]

Hello Fizzgirl,

Thank you very much for your message. I can see that you have had lots of helpful replies from the forum community above sharing their experiences.

A number of these responses refer to Macmillan and I just wanted to send a quick message with some further information about the support that they provide. They have a welfare rights service who can give information about any benefits that you may be entitled to. I will put a link to more information about this here: macmillan.org.uk/cancer-inf... . You can contact them on their support line which is available 7 days a week on 0808 808 00 00.

They also have a financial guidance service who can provide information and support around all aspects of finances such as pensions, insurance and mortgages. I will put some information about this here: macmillan.org.uk/cancer-inf...

We would also be very happy to look into local sources of support for you if that would be helpful?

Please know that we are here if you would like to talk things through. You can contact the Ovacome support team on 0800 008 7054 or by emailing [e-mail].

Best wishes,

Cathryn - Ovacome Support