First visit to oncologist

Hi CMK,

I've not had your experience but I've been around the site for a while, Id ask:

For a list of treatment options

If there are any clinical trials you would be eligible for

If they would consider genetic testing to see if that would open up treatment options for you

What grade and type of cancer that you have 

What risks and benefits the chemotherapy would have in your circumstances 

For a contact number for if you have any follow up questions 

You might find it helpful to speak to the gynaecologist nurse specialist at the eve appeal after (or before) your appointment, they are at: 

https://eveappeal.org.uk/supporting-you/ask-eve/ 

You might also get some advice from: 

Target ovarian cancer - https://www.targetovariancancer.org.uk/information-and-support/what-ovarian-cancer 
Ovarian cancer action - http://ovarian.org.uk 
Ovacome - https://www.ovacome.org.uk 

Finally the Macmillan helpline can give loads of general advice about work and finances, etc, and if you have a local Maggies centre or cancer support centre have a think about dropping in, they are usually fab.

lots of love and good luck for Thursday 

xxx

Thank you Arla

i will definitely use some of your questions. I need to feel I have some control in all this. I really appreciate you replying. Xxx

Hi CMK

Im sorry to hear that you are in this situation. The same happened to me in 2017, was due to go to Barbados but was diagnosed with stage 3c OC

It does feel as though you are suddenly on a conveyor belt with everyone telling you what you have to do and no time to consider options. 

The questions suggested above are spot on. Also you can always ask to be referred to another hospital

Target Ovarian Cancer is another great site that has information about trials.   Also you are entitled to the genetic testing for the BRCA defect so do ask to be referred to this as it can open other treatment options for example Oliparib  which is now available for first lime treatment. 

Give yourself a bit of time to get your head around things and review options. 

Celia 

Thank you so much for sending me the link to Target Ovarian cancer. I phoned them up and got excellent advice. I feel so much better now and much more informed. I really recommend them. 

Thank you Celia

Can I ask how you are now? I was told it’s incurable and I can expect quality of life but not quantity from treatment. However Target Ovarian cancer were more optimistic saying incurable meant they couldn’t promise it wouldn’t come back. I have a very busy full life at the moment which i enjoy. I want to continue taking my grandchildren to school, working part time, swimming, walking. Xx

I’m so glad they were able to help

i had debulking surgery followed by 6 rounds of chemo back in 2017. I have recently had a recurrence and am half way through second line chemo. This time I will be able to have a maintenance drug after the chemo and I’m really hoping this will keep progression at bay. 

Let me know how you get on xx

Hi CMK,

Im really glad that they helped, it's good to know as I can refer other people who visit the site to them too. it makes a huge difference when someone takes the time to explain things in a way we can understand, my team were lovely but it's information overload sometimes at appointments.

lots of love

xxx

This is encouraging to hear. I’m starting chemotherapy in two weeks- carboplatin and Paclitaxel. Did you lose your hair? I have asked about the cold cap bit no one seems very enthusiastic. 

Xxx

Hi

i had having for the chemo you are having and tried the cold cap but unfortunately it didn't work for me but i know two ladies who wore the cold cap and it worked. Their hair got thin but they didn't loose it all. Maybe e give it a try and see what happens.

Good luck with your treatment .

Karen

Thank you Karen I’m going to give it a try. X