New here - diagnosed with stage 3 advanced ovarian cancer

Hello Marianne. 

A warm welcome to the Macmillan online Community although I am so sorry to find you joining us. I am Brian, one of the Community Champions here at Macmillan.

The Community is divided up into cancer specific groups and in your case I would advise you to join these two groups, where you will meet others on the same or similar journey:

Ovarian cancer forum 

Ileostomy, colostomy, urostomy and any other stoma support 

Once you click on the links I have provided, and the page opens up, click on join on the black banner at the bottom of the page. Once you have joined the group, you can introduce yourself. You can either copy and paste or repost your post above in the "New Here - Say Hello" section. I am sure you will receive lots of replies. 

As for your sleepless nights - why not telephone our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) - a free call and ask the Support Line for help about sleeping.

If you do need any further help in navigating the Community please do get back to me.

Best wishes - Brian.

Thank you Millibob 

We have moved Marianne's post into the Ovarian cancer forum for the best support.

Please do keep chatting, there is lots of support available for you here,

Hi Marianne and welcome to the group.

I’m sorry to read about your situation and surgery and can completely understand how daunting it must feel.

I had a different cancer-mine was cervical-but when it recurred, I was also faced with huge surgery called a total pelvic exenteration which removes absolutely everything from the pelvis. I had my bladder and colon removed, which has left me with two stomas-a colostomy and urostomy. I’m a little bit younger than you at nearly 64.

It’s likely your stoma will be permanent, because of the cancer being advanced and your team wanting to take away as much as possible to give you the best chance of a good outcome from surgery. 

I know you’ve used words like feeling mutilated, which I didn’t feel myself as my priority was getting the cancer out and no-one sees what’s going on inside! Your team would not put you through the surgery unless they thought you were strong enough to get through it successfully.

What I can say is that it doesn’t take long to get used to having a stoma and it quickly becomes easy to deal with, and part of your life-after all, it’s just another part of your body.  I’m assuming from your post it would be a colostomy, and you just need to think of it as an alternative way of getting rid of waste from your body. Brian has given you a link to the stoma support group in the community and if you do end up with a stoma, it’s a great place to ask questions and get advice on all aspects of managing it. 

I understand the thought of your surgery and a stoma is very daunting for you, but I tried to focus on getting a good outcome from surgery rather than the process involved. My surgery was in 2020 and I am almost 6 years past it with no recurrence so I’m considered cured. I hope that might give you some hope. My two stomas are not noticeable under my clothes, and dealing with them is very straightforward. My cancer is gone, and my life is so much better from having the surgery, with no pain and no lasting effects. No-one knows I have them unless I tell them.

I’m happy to keep in touch and help support you if I can, so please free to ask any questions.

Sarah xx

Hi Sarah, thank you so much for getting in touch with me.  Im so relieved to hear that you are clear of cancer and that it is great news that you are doing so great.  I think anyone who is the process of preparing for any operation is extremely frightening and what will life be like post surgery.

Thanks ever so much Sarah for being so helpful and kind.xx

Hello Marianne. I'm 70 and have only just been diagnosed and now waiting for a date for surgery.  Am in the same position as you - full hysterectomy, appendix and fat removal plus possibly a section of bowel.  I may have to have a stoma though I don't understand why it has to be permanent.   The way I see it most of these organs we don't need anymore so I'll just be glad to get it over with and stop the cancer spreading.  I'm taking a pill which helps me sleep and drink Chamomile tea.  I'd urge you to try something either herbal or ask your GP.  You need to relax and get enough sleep to keep strong.   Gill

Hello there. I have had three surgeries now for originally stage 3 (now stage 4) OC. I was absolutely terrified first time round, though it all went OK. On my 2nd surgery they said I.might get a stoma and also lose my spleen, neither happened. I think they often don't know for sure till they go in. When I thought I was going to lose my spleen, I googled it for weeks, complete waste of time. So when I went in for a liver resection in my 3rd op, I did zero research and just took what came. Recovery was tough after that one. I can totally understand your terror but what I would say from experience is that surgery, tough as it is, has helped to keep me alive. 

Hello there 

     I have just been diagnosed exactly the same and am thinking exactly the same .

Hi there, I am scared too. Almost every conversation and thought now centres around 'it', however if you can I would recommend trying to do something in the moment to break (even if only momentarily) that continuous chain of thought.

The last couple of days I have been out on a couple of short trips with my partner and dogs. For example, we visited a local landmark (a famous Wiltshire white horse hill feature) late in the afternoon and watched a couple of paragliders soaring around accompanied by a red kite bird.  I have also started to re-read a series of books that I last read many years ago and have found myself absorbed in the story. Very occasionally I think I have even forgotten about 'it'!

I am not kidding myself, sometimes I just cry or stare reflecting into space, and I know that upcoming treatment is likely to hit hard but I have found some small distractions in amongst it all. 

1. I am finding this forum hugely supportive in sharing emotions, experiences and knowledge with others. I hope you are also getting the same from it too.

Hello there...!

With your post being two months ago ...how have you gone on ...??

     Very well I hope ...!!!

        The reason I ask is two months ago is 8 weeks and I believe sometimes its chemo first within that time period to shrink first ...yes !?! ..

.....as advanced  ovarian cancer can spread further the longer its allowed to ...ie in weeks !

Well done !!!! Brave Lensie !!!!

    I wish you a long life!