Living with stage 4 ovarian cancer

Hi M1234 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that your relative has recently been diagnosed with advanced ovarian cancer but that's great that her oncologist is confident they can stop the progression with chemotherapy.

I have a different type of cancer but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where hopefully someone with advanced ovarian cancer will see it and respond.

When a cancer is found to be incurable the aim then is to give treatment which will stop it progressing so that the person can continue to lead their life. Many people do go back to work so if your relative feels up to it then this is perfectly possible. You might like to take a look at this leaflet from Macmillan about ovarian cancer as it does have a section on advanced cancer.

x

Thank you so much for your message and the link to the leaflet, much appreciated X

Hi M1234, I'm sorry to hear about your relative, I know how scary it is and how much you'll all be worried. I was diagnosed with stage 4b ovarian cancer last Feb, it was completely unexpected and I had no idea what to expect. I received 6 cycles of chemo and had surgery after the 3rd (full hysterectomy and omentectomy, the chemo had removed the fluid fro my lung and peritoneum).

My cancer is also incurable but I'm on anti cancer therapy for 2 years with the aim of stopping the remaining tumour from growing for as long as possible. I know every patient is different and chemo will be different for everyone but there is so much ghat can be done nowadays. I'm in Glasgow and attend the beatson, the doctors and nurses are amazing and are more than happy to answer any questions. Your relative should have a cancer nurse specialist who will be extremely knowledgeable and will talk through everything in detail. 

It's still a scary time and I've had to pace myself as I don't quite have the same energy but I take each day as it comes and I make sure I build in rest time to my week. Macmillan are also a great source of info and support for patients and their families. 

I wish you and your relative well and hope treatment goes well. 

L

Hi Lormac, 

Thank you so much for your message. It’s really great to hear how things are for you a year on and gives me hope to think about the future for my relative. I have some more questions (no pressure to answer any of them) but wondered if I could post them or if there’s a private message function.

Thanks again and all the best for your ongoing treatment. 

M

Hi M

Yes please feel free to post any questions, I'd be happy to answer them if I can. 

Best

L

Morning!  I too was diagnosed with stage 4b overian cancer  November 2021, I was flabbergasted never in a million years did I see it coming but like the other ladies on here say, somewhere we reach inside ourselves and find the strength and hope to fight, it is an ongoing battle but we do it.. The treatments are improving all the time even though Overian cancer is still far to behind in research it is getting more awareness..  I am sending you love and strength, ! 

Thanks so much. I was just wondering what a typical day is for you - are you able to work/go out and about/see friends? How often do you have check-ups? And is the 2 years of anti-cancer therapy more chemo or something less intensive? 
I guess I’m really struggling with understanding the prognosis and whether we should be preparing for just a few more years (or less) together, or if there’s hope that she’ll be able to carry on for many more years - but I guess maybe no-one knows? 
Good luck with your ongoing journey, and thank you for sharing. 
All the best, 

M 

Thanks so much for sharing - did you have chemo and/or surgery too? How do you feel now? 
All the best for your ongoing journey, 

M

Hi, i had chemo, then debulking op, (op, June 2022) now I am on Niraparib, to slow down any growths, I have only been on these for 2 months, I get bloods tested to check all's good and so far no side effects, I have my CT scan on Wednesday so hopefully I am indeed doing well.. I feel great just like my old self before chemo.. I do get tired but I embrace it and have a lazy day watching Netflix!! or have a early night.. I do not work as I have a ' special guardianship' for my two grandchildren, so I do alot of cooking, housework etc., Picking up.. I do get out alot there is nothing stopping me, I appreciate every day even chores I would moan about before I now just get on... I know I'm living with cancer but it doesn't rule my life.. your relative has a great support team with you and your family! Sending you good vibes!!!!

Hi M, many thanks.  Throughout my chemo and surgery I remained on sick leave as I didn't have the capacity to do my job which is high level admin, my cognitive skills were effected both by the cancer and the chemo. My chemo was on 3-weekly cycles and for the first 5 days after each session I stayed home as the side effects were quite severe, but after thst met up with my parents and sister. I occasionally met with 1 or 2 close friends, partly cos I just wasn't ready to meet lots of people after diagnosis and through treatment.

I'm now in the process of retiring from work as I don't have the capacity to do any work for now. But every one will be different in thst regard. I go out each week to meet with family and friends and I have time to do other things in life, I'm just a bit slower than I used to be which I find frustrating.

When I was getting chemo my check ups and blood tests were every 3 weeks. The anti cancer therapy is daily tablets (not chemo) and I have check ups each month.  No-one can say how long I may have but I have a good chance of a few years, but who knows it could be less or more. I stay positive and hope it will be more as I seem to be responding well to treatment and you never know what other treatments will be available in the next year or 2.

I do tire easily and I'm still getting used to that but it's about listening to your own body... something I've had to learn to do. I focus on getting through one week at a time and I don't dwell on what might be or what's to come. My cancer will start to frow again at some point but I try to keep thst to the back of my mind, I feel there no point in worrying about something I've no control over, so I focus on what I can do. 

It's a huge amount to take in and quite a bit is unknown. I would say for you and your relative to focus on what you do know and take things one day at a time, it's stressful enough dealing with the diagnosis and chemo without added stress of thinking about what may/may not happen next.. that was advice I was given by 2 fellow cancer patients and they were so right!

Hope all the above is helpful and please ask any other questions you might have. 

I wish you both the very best and remember to be kind to yourselves as well it's so import to take the time you need. 

Lx