I hope you are all well and enjoying this amazing weather.
I was diagnosed with stage IIIC ovarian cancer at the end of Feb and, after having three chemos, my CA125 is 22 and I am scheduled for an op in around two weeks.
However, despite being told that my response to chemo is very good and that the tumours have gone or have shrunk to 2-3 mm, one is attached to my bowel and there is a possibility of having to have a temporary or permanent stoma - apparently anything else could lead to sepsis which would be dangerous and also affect my schedule of treatment. This, of course, is all I can focus on - forget the positive!s - even if it's not even definite yet.
Has anyone else had this? What was it like? Did you cope okay? I am very active (birding, gardening. fundraising for a charity, and walking, and I am still working full time) and worried about how it may affect me when life eventually returns to normal.
Feeling a bit of a wimp at present, so any advice would be welcome.
Lesley
x x
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LesleyGB
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The first thing to say is that they always warn women going in for debulking that they could wake up with a stoma but in practice most don’t.
Now it may be that you have more of a risk because of where your cancer is. If you do end up with a stoma there’s lots of help. Your CNS should be happy to talk you through what it will be like and all the things you can do despite the stoma.
I have two permanent lung drains fitted atm... I thought I would be gingerly lying in bed but it’s amazing how you adapt and become proficient with your new situation! Best of luck with your op xx
Thank you so much for your reassuring words. I think I was in a bit of a panic when the stoma was mentioned, but reading your reply and others (who have and haven't had a stomas) has really put my mind at rest. With the size of my tumours I think it is unlikely but if they do have to give me one, I will cope!
Glad our chest drains aren't stopping you doing things and that everything goes well for you.
LeslieGB, Please read my profile. I was given same diagnosis and told I'd wake up with a stoma. I was understandably quite upset. Tell your doctor in advance that if a stoma is necessary you want it to BE REVERSIBLE. I had the stoma for 7 months and then had a successful reversal. It is possible and common here in US. Hugs to you. You will be OK. I've been here for 5 years, currently on Olaparib and life is good.
Thank you so much for replying to my call for help! It's such a comfort to read that most of the people on here were told that a stoma was possible or probable and then wasn't needed. And people like you have managed okay and was possible to have it reversed.
I keep being told how well I have responded and now hat the tumours are only 2-3 mm so fingers crossed it won't by necessary. I will definitely tell them that I want it to be reversible if it's necessary.
Glad life is good for you and the Olaparib is working!
I was warned abt. poss. need for stoma pre-op. However, they were able to do a bowel resection instead. Your tumour on your bowel is so small - Ithink forming a stoma would be a bit drastic. I would state your preference to your onc. Pse keep us updated. Best wishes. Gwen x
Thanks so much for taking the time to respond to me. I am hoping they are just warning me in case it happens (like all the risks of the op itself) but ity won't be necessary. As you say the tumours are all very small so keeping my fingers crossed. It really has helped to have people tell me of their experiences and I feel much more positive now!
I can’t give any advice about living with a stoma, as I don’t have one ( so far) but I was told to expect one when I had my last op. I was seen before they operated by the hospital’s stoma nurse. We discussed where the stoma would be, & she marked the proposed site with a cross & said I would get plenty of help afterwards learning to cope with it. There were other ladies in the ward with the same surgeon who had been given stomas. But I woke up from the op to be told they had managed to avoid it. Di
Thanks for responding to my panicky post! So many other ladies on here have said they were warned it a stoma was possible (or probable) but in the end it wasn't necessary. I will remember that and also that other people have coped if it does happen - and will make it quite clear I want it to be reversible if possible.
I had a stoma and was told it was permanent as my bowel had perforated due to the cancer. However when I had my debunking surgery they did a bowel resection and 2 years later I’ve had mine reversed as well. I could have had it done sooner but was too nervous. I found it hard at first but mine saved my life so there was no getting round it. I managed well and in the end it just becomes normal. I went back to work, stayed active, even went swimming with it. I adapted much quicker than I could have ever imagined and I was pain free. I did have to amend my diet slightly but tbh I ate almost everything I had eaten before. Please don’t hesitate to message me if you have any specific questions.
Thanks for your post. It's a comfort to know from someone who has lived quite normally with a stoma. I would definitely want it to be reversed if at all possible - making all these plans about something which probably won't happen! If it does, I will definitely be in touch with you - thanks so much!
Hi Lesley. I understand your worry. I was told I may wake up with a stoma after debulking surgery. However they managed to do a bowel resection. I had complications and they thought the bowel may have perforated and started talking about a stoma again. Fortunately it all turned out ok although I still have the disease in two places on the bowel but it is stable. I have been hospitalised for a bowel blockage and talk of a stoma came up again. I no longer worry about it as if it necessary one day I'll just have to go with it. I have a friend who lives a normal life with a stoma. The energy needs to go into living your life. There is lots of help if it comes to having a stoma and as many ladies have said, it is often reversible .
Good luck with the surgery. Try not to worry and keep us posted.
Thank you for your lovely reply. So sorry to hear of your problems and so pleased to hear it turned out okay - it seems awful to say it but to see how well you have obviously coped and how positive you seem to be is such a comfort! I am much calmer now that I have got my head round it (it was rather thrown at me after all the positive stuff the surgeon went through)- and heard about other people's experiences. I know if I do have to have one done, it is for my own good and I will deal with it
Morning Leslie , I had my surgery last August and ‘Stormzi ‘ was born !(my son named him). It is a bit strange at first but the Stoma team are fantastic and the continuous support is amazing. Other than my slight change in diet my life and activities are all the same . Good luck with your journey. XX
Hi! Thanks for taking time to respond to me in my panic! I have managed to get my head round it all more after all the posts and feel much more positive. The possibility was rather sprung on me after all the positive stuff and of course I focused on that! I will sleep so much better after all of the reassuring posts I have had. It was good to get a reply from one or two people who had a stoma (most hadbeen told it was possible or even probable but in the end it wasn't necessary.) But I have to have a stoma, there is nothing I can do about it and will cope, just like you!
Hi. I was diagnosed 3c in February 2016 and had surgery first, then chemo. I ended up with a colostomy thanks to the tumours wrapping around my bowel. Once I found the right bags for me, I've just got on with life - I went back to work, went on holiday in the UK and abroad, ridden all the rides at Disneyland Paris, walked, done exercise classes, gardened, been swimming. The surgeon who did the colostomy said it was complex surgery and would be very difficult to reverse, so I decided not to risk it as I'm managing fine. There's lots of support available, should you end up with a stoma, and I'd be happy to point you in the direction of various things if you need it. All the best with your surgery and ongoing treatment. x
Thanks for your lovely post and great to know you are getting on so well. Reading through the responses I realise it isn't even likely that I will have one, but that if I do I can cope with it - so reassuring to know you can get back to normal life, although going on amusement park rides is a no-no whatever happens!
Hi, you’re most certainly not a wimp, this diagnosis is so very scary with many added ‘delights’ attached to it.
My tumour was adhered to my bowel and other organs so the likelihood of a stoma was increased (my tumour was 30cm and rapidly growing so chemo was not an option prior to surgery as time was of the essence). I had a nine hour procedure during which the usual debulking surgery was undertaken and my superb surgeon was able to avoid the stoma with a resection of the bowel but if a stoma had been the only option then it would have been done as survival is the optimal goal. I’m sure there are ladies here with stomas who can let you have more information on living with one.
They have to inform us of all possible outcomes, I believe we are all told of the stoma possibility so we are pre-warned. There’s every chance you won’t have a stoma and they will avoid one if possible.
Good luck with your surgery, it’s a biggie but nowhere near as bad or scary as you think it’s going to be. We’re all here in spirit to help you and have a wealth of knowledge and tips on helping you through it.
Thanks so much for sharing your experiences: amazing that they could operate so successfully on something so complicated - brilliant for you.
I will stay positive - the possibility was rather thrown at me after all the really positive stuff, so knocked me off centre a bit. Such a comfort to hear everyone's experiences and now just want to get the operation under my belt (or bag, depending on the outcome!) and move on to the next stage of treatment.
Hi Lesley. I was diagnosed with 3C in December 2017. I was told I might wake up with a stoma but they managed to do resection. I later had a stoma because of complications but my situation was rare so probably won't apply to you. Your remaining cancer seems quite small so I would think this should go well. I had a very large tumour attached to my bowelso there was no option really. I have been living with my stoma (Sid) for over two years now. You would be surprised how soon you get used to it. When I was in hospital I had a very good stoma nurse who was amazing. She talked me through before surgery ( didn't need it that time) but after second surgery she was with me every inch of the way. We don't have a community stoma nurse where we live but the hospital nurse put me in touch with one of the nurses attached to the big suppliers of stomas products who I could call any time. She was very helpful too. There is an amazing array of products out their and the suppliers and nurses will help you through choosing what you need. I haven't let my stoma hold me back. I lead a busy life and I have flown abroad several times (obviously not at the moment) but you do need to plan ahead a little and make sure you have your emergency pack with all your essentials when you go out. I was given a lot of literature and I found this very helpfil. Also I joined Colostomy UK who have lots of articles on all topics stoma and a support group on Facebook. I hope this will be helpful and that I haven't gone overboard on the info. Take care. Jackie x
Thanks so much for all of your information and advice - I really appreciate it. It was good to hear that you are coping really well and that there is so much support available. As you say my remaining cancer is very small and I am feeling more positive that everything will go okay. So many people have replied saying that they were warned a stoma was possible but in the event it wasn't but that they have to be prepared. But if it happens, it will be because it's for my benefit and I will cope!
I am 3c too. I had debulking surgery in June 2019. I was not expecting to come out of surgery with a stoma, so it was a bit of a shock. My surgeon had not forewarned me that this might be the case as there was no mention of cancer on my bowels. However, the cancer had wrapped around the lower section of my bowels and the Sigmoid section had to be removed and a Stoma created.
I had a couple of fantastic stoma nurses visiting me on the ward and teaching me how to clean it and change my bag. I was fascinated by this 'bum on my tum'. I got used to it pretty quickly. Having the stoma was a decision the surgeon had to make as an emergency life saving procedure and I'm glad he did it.
There are different types of Stomas. Some women have an Ileostomy, I have a Colostomy and some women have a Urostomy..
I have been told by my surgeon, if all is well further down the down the line, I could potentially have it reversed. I could have had a reversal done sooner but i have been receiving Avastin, albeit on hold at the moment. I can't have the reversal until a few months after Avastin treatment has finished.
I'm so used to it now it feels like a very normal toileting process.
One word of advice: if you do get a Stoma, you can be quite susceptible to getting a hernia around the stoma (I have one). I would definitely advise getting support belts to wear. There are a number of different suppliers that have support belts with a hole in the belt which allow the stoma bag to fit through, therefore giving your abdomen the support it needs whilst allowing stool to pass. I bought one from a company called Comfizz. I have also bought a couple of Amazon.
Hope this info helps.
Let us know how everything is going when your out of hospital and back home.
Thank you so much for your helpful post - there is so much reassurance that a stoma isn't the end of the world and is perfectly doable. I can imagine it was a shock for you as you weren't warned it was a possibility. With me the possiblity was raised after all the really positive stuff and it was a case of focusing on the possible bad rather than all the progress I have made so far.
If a stoma does prove necessary I will be back on the site with more questions!
I think almost everyone is warned about the possibility and therefore have to sign to give your consent. Otherwise should the surgeon discover it is needed, he’d have to stitch you up, bring you round and ask for your written consent to go ahead.
I admit to feeling nervous when actually signing but I’d been warned (from this site) that it would happen so I didn’t dwell on it. It was one of the first things I asked though when I came round. But I’ve read so many positive posts about them, that I’d take if I’m my stride now.
Thanks for your response..other people have said the same thing and in most when they were warned it was possible/probable, it wasn't necessary so feel so much more relaxed - plus the CNS is going to ring me today.
Hope all goes well for you with your treat and the outcome is positive for you.
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Possibly No Surgery :)
Ovarian mass - Possible dermoid
Just arrived home after debulking surgery on Thursday. A stoma was never part of the plan 😔
