Hi everyone, I am 54, I was a very happy, fit, married lady with two gorgeous children in their early twenties. We moved house, a refurbished project on 5th November and two weeks later I was very shockingly diagnosed with stage three ovarian cancer.
I met with my surgeon who is going to look after me on 19th December. The date is still yet to be confirmed but I will have a big operation hopefully on 13th January. He is confident he can remove all the cancer and I understand I will have a full hysterectomy, some of my bowel taken away, my spleen and maybe some diaphragm bordering my liver. I will then go on Chemotherapy. The surgeon has evidently performed 300 of these operations.
I have a decision to make and was really hoping I could get some help from this forum….,He will rejoin the bowel back together and only has a personal 5% failure rate on the bowel leaking within 48 hours after surgery, if this happens, I would become very unwell and need emergency surgery to fit a Stoma that would then be for life. This scenario hasn’t happened under his watch within the last 3 years. There is the option for me to have a temporary stoma fitted, this would be for about 6-9 months and then removed. Of course, this would mean coping with a stoma throughout Chemotherapy which at the moment is an unknown entity for me but I am thinking it would give my bowel some quiet time to heal. And take away the anxiety I may have about the wound inside me being under strain when I am unwell with Chemo.
If anyone has any advice about this I would greatly appreciate it.
I am massively struggling with my mental health at the moment, having gone from so many plans with our new house and location closer to family to feeling like my life is now completely ruined.
Hello Andylou
i am Brian one of the Community Champions here. I have just noticed your post has gone unanswered. I can't give you a full answer myself as I have a different cancer but by me responding your post will be "Bumped up" to the top of the group and hopefully be noticed and replied to by other group members.
If you don't mind may I make a few suggestions?
* I will tag one of my fellow "Community Champions" to this post SarahH21 who can give you some advice regarding the stoma question.
* If you need some help with your mental health we do have some free counselling provided bu BUPA and here's the link; -Free BUPA Counselling
* There's always our support line on 0808 808 00 00 (8am to 8pm 7 days a week) Hours may vary during the festive period but give them a call - they can provide the extra help and support you need.
I hope this helps - if I can do anything else for you please don't hesitate to contact me.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Andylou
i was in the same place as you, in May 2023 I was diagnosed with stage 3 ovarian cancer and in October had surgery for a full hysterectomy and have a stomach fitted. There wasn’t an option for me to keep my intestine because the cancer had started to grow on it.
Your question related to whether you should consider having a temporary stoma fitted to reduce the risk of the bowel being under pressure during chemo. Only you (and your surgeon) can decide that but I wanted to give you some thoughts about living with a stoma and bag, based on my personal experience.
I have now had the stoma and bag for 14 months and it is part of my life without (now) presenting many issues. I am 68 and play tennis, swim, go to the gym and wear close fitting clothes. I also travel abroad a lot. It has no impact on that part of my life. Only the people I have told know I am wearing a bag and those who hear it for the first time, look surprised and ask where it is because it is so invisible.
Following surgery in October 2023 when I then had to continue with 3 cycles of chemo there were some distressing incidences of leaking at night. These were REALLY distressing as there was shit in the bed, it had to be cleaned up and I felt very upset.
I believe that these catastrophic leaks were down to my remaining intestine dealing with the contrasts of constipation and diarrhoea linked to steroid side effects and lactulose. I stopped using lactulose (horrible stuff!) and for the week after chemo upped my vegetable intake which dealt with the constipation effects.
Having said that since chemo finished there are incidences of leakage but I know they are going to happen so can change the bag. When a leak starts you can smell the output (the polite term for what is effectively shit 
️) as it starts to breach the seal that holds the bag against your skin so you have time to change it. I also now know what foods (lots of carbs) are likely to cause a thickened output which increases the chances of the seal being breached. It is all manageable.
Before my surgery the oncologist was concerned that my intestines would rupture if the chemo killed cancer cells that were covering a hole in my intestines. I was told that if I were ill or vomiting I had to immediately go into hospital because there was a risk of sepsis. That was understandably worrying and fortunately didn’t happen.
you say there is a 5% risk. To help you decide, think about some dangerous things you would do which had a 5% risk of hospital admission (run across a road, ride a bicycle, drive a car etc) and decide whether or not you would take that risk? If you do decide that it is too high then hopefully you are now reassured that life with a stoma isn’t the end of life as you know it
I wish you the best for your future and a happy and healthy year in 2025.
Hi Andylou and welcome to the community. Thank you Brian Millibob for the tag.
I had a different cancer-mine was cervical-but I also had a massive surgery(a total pelvic exenteration) and now live with 2 stomas-a colostomy and urostomy-having had my rectum and bladder removed.
I didn’t have any cancer in my colon, though I had damage there from previous radiotherapy which was my first line of treatment. My colon could have been saved but I asked my colorectal surgeon to remove it to try to limit the places where my cancer could recur. Since I was already definitely losing my bladder-again I didn’t have cancer there but my cancer when it recurred did spread over my bladder and womb (also didn’t have cancer inside my womb!) my thought was that I should just go for 2 bags.
If I could make a small suggestion it would be to think of any stoma as part of your own body. Stomas are not “fitted” and “removed” but are formed from part of your intestines. Of course neither of my stomas can be reversed, they are permanent, but we do have many people in our stoma support group who have had a temporary stoma which has then been reversed at a later date. The stoma support group is a great place to read lots of useful advice and get support with this and the link is here -
I can’t speak to the effects of chemo, as for me it was not required after my surgery and I have done very well overall. But personally I would rather have had a temporary stoma formed which could be reversed at a later dater rather than have the risk of emergency surgery resulting in a permanent stoma, but it is a very individual and personal decision. Living with 2 stomas in my case is certainly much better than the alternative for me, but dealing with one stoma should be perfectly manageable. It’s something you get used to very quickly in my experience.
You may feel at the moment that your life has been ruined, but it is possible to have a good quality of life after surgery and recovery. I’ve had my stomas for almost 5 years now and they are just part of my life-I still go abroad, go swimming, wear the same types of clothes as I always did. It’s a different life, but nonetheless I’m glad to be living it!
Sarah xx
Hello Andrea (Andylou)
It's no problem, it's what we Community Champions do. 3 years ago today I was in hospital awaiting diagnosis. In early 2022 my Macmillan nurse suggested I join the Online Community and the support I received was amazing, indeed I have made some great friends here. (You can read my journey by clicking on my name or avatar).
I am now "cancer free" but enjoy working on the Community and helping others who are where I was 3 years ago.
Like you I found my partner to be my rock during my journey and with a positive attitude we have got through the bad times - we have laughed, cried a lot but her support has given me the strength to be where I am now.
Keep the faith and you will get there.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi again Andrea Andylou
I’m really pleased to read that you have reached out to the helpline and have a call scheduled. I had this BUPA counselling myself, quite some time ago now, and found it very helpful. I needed someone to talk to who wasn’t involved in the way family are and it was good to be able to talk with someone who listened. I hope it can be helpful for you too.
I’m sorry I didn't pick up on your post earlier-we currently do not have a community champ looking after the ovarian group but I do tend to look on here regularly as my ovaries went along with the rest of my reproductive system!
A friend very recently underwent a similar surgery to that which you are facing and is awaiting chemo once she has sufficiently recovered-she also has stage 3 ovarian cancer, where they believe everything has been successfully removed in the op, but she has not had to have any type of stoma.
Sarah xx
Thank you Andrea-my friend has a very positive attitude going forward, and I cannot emphasise enough the importance of that along with having a wonderful partner!
When my surgery was first mentioned to me, not long after I had finished my chemoradiation when I asked what would happen if my cancer recurred, my first thought was “no way am I ever having that”! Tears were running down my face on the journey home from that appointment. I kept my sunglasses on in the car, and just said no-it sounded so shocking.
Having my cancer recur so quickly after treatment was worse than my original diagnosis-I had never cried then, and was extremely determined..but this recurrence was a huge body blow which really shook me to the core, and scared me witless!
However, I just needed to process this in my own time and I flipped my thinking completely. I focused on what this surgery could mean for me ultimately, and its potentially successful result rather than the process of getting there. I even slept well the night before which surprised even me!
You haven’t known about your cancer for very long in the grand scheme of things, and any diagnosis is tough to deal with. You also are facing the prospect of very major surgery and potentially a stoma. This is huge for you, especially when it was a shock to be diagnosed in the first place.
The most important advice I think I can give you is to take one day at a time, one appointment at a time. Don’t let your mind rush ahead, and try to banish those thoughts which may creep in which say “but, what if?…”.instead, visualise yourself coming through the surgery and starting recovery before you think about any follow up chemo. That’s in the future and you’re not there yet!
It sounds as if you have an excellent surgeon who has a huge amount of experience, so trust him, trust that his skills and knowledge will give you the best possible outcome, and have faith.
I am grateful every day to the amazing team who saved my life, and give thanks that their skills enabled me to have a second chance-they are my heroes, each one of them.
I’m happy to chat any time, and am around every day-if I can help you in any way, I will-even just with a virtual hand hold and cyber hug. I know you will feel scared and vulnerable and sometimes we just need another person, even a stranger, who understands.
Sarah xx
