Hi ladies I was diagnosed in sept 2020 after been to my own gp on numerous occasions with constipation and pain in pelvis area told not to be worried nothing serious I went for pelvic ultrasound and was told everything looked health still not happy and went back to gp he held scan in front of me and said everything looked good I asked for a colonoscpy went in he couldn't go up more than 4 to 5 inches as there was a obstruction still gp told me nothing to worry about I was so worried I lied to the consultant that did it and he brought me in for more tests and hey presto the guy who did my original ultrasound is know telling me yes I see some sort of mass I need to take a biopsy and week later dx with stage 3 hgsoc my heart was broken I has spent 2 months fighting to be diagnosed I was told I needed 6 cycles of chemo 3 before and 3 after surgery after my first 3 cycles I had a scan and my ca125 had gone from 596 to 21and he said he was happy with the scan there was tumour shrinkage surgery couldn't go ahead because covid was so bad in hospital so they gave me a another 3 sessions of chemo my surgery is set for 18th of Feb and I have had a four week break from chemo till surgery I also have bowel invasion my oncologist was good bout the oncologist gynecologist frightened the life of me when I met him after scan he wasn't as optimistic as my oncologist and basically told me everything that could go wrong he said it either goes one way up or down I may need stoma bag and its only reversed in 20 per cent of cases because cancer has usual spread again by time it comes to reverse it I am so frightened thinking of surgery and whats facing me when I come out and I am walking around thinking is this cancer growing again inside me when I am on the 4 week break I have these thoughts everyday and in front of my husband who is fantastic and kids , family and friends I am plonding along putting on a brave front its my first post I am sorry its so long I just want to know does everyone feel like this and whst to expect after surgery thanks so much ladies xxxx
Venting : Hi ladies I was diagnosed in sept 202... - My Ovacome
Venting
Bless you for what you've been going through. You've done very well and kept pushing for a diagnosis. Rest assured, it is very normal to worry and even be frightened.
What the scan shows is one thing and once the surgeon goes inside, this may be a different story. This is why prior to surgery, the surgeon has to highlight all possibilities and mostly the risks. You'll also sign a form with your consent.
Stoma is one of those things everyone worries about and many get through the debulking without having one. The notion of a debulking surgery is far more frightening what you'll actually experience. They'll look very well after you and send you home only when you are ready. Please god all shall be well; meanwhile, keep strong and enjoy this break with your family xxxx
Clifden and Roundstone are favourites.
Thanks for your kind advice
Hi your message sounds very familiar so easy to say but really don’t panic .Bit like the leaflet we all read in a box of tablets , rarely do we experience any of those symptoms but they have warn us just in case. I was also told I could need a stoma but didn’t & the debulking op wasn’t anywhere near as bad as I had imagined. Our brains really go into overdrive don’t they.Now you are under medical team radar try to relax & believe you are in very safe hands.Believe me you’ve conquered a large part in getting there 🤗 Stay safe. Big hugs Dee x
I agree absolutely- don’t panic. I was due the standard treatment but my bowel perforated after my second chemo as the cancer was wrapped round it. I had an emergency stoma fitted, chemo re-commented 3 weeks later. After 4 chemo sessions, I had my debulking and they repaired my dodgy bit of bowel - 2 chunks taken out. They had assumed it was cancer in the bowel as well, it wasn’t it was diverticulitis. I had 3 more chemos and finished treatment in nov 2017. I had my stoma reversed in September 2019 - 2 years later - I was too scared to have it done earlier. I am aware how lucky I’ve been as I’m still clear and it’s coming up to 4 years since diagnosis. My point is don’t panic, I had convinced myself there was no way I’d get through it - but I did thanks to my brilliant team and now my quality of life is good. Stay strong and I wish you all the best and believe me a stoma isn’t all that bad - you will cope if it happens - and they can be reversed!!
Clifsen1,I say the same - don’t panic!
Before my surgery I was told I’d likely have to have my spleen removed but I didn’t. There was a liver specialist on stand by, but he wasn’t needed. I was also told that I’d probably have to have a stoma - and I didn’t have that either!
The surgeon removed everything bigger than 1cm, which was an excellent result. He did tell me that my bowel was like sandpaper due to tiny cancer seeds, but that has been ok . I did have a paralysed bowel after and that took a while to wake up, but came right after a week.
The point is that being told the worst case scenario doesn’t mean that the worst will happen. You may wake up with a stoma but lots on this site cope well with that.
You have done so well so far by not being fobbed off. You are strong enough to get through this next stage. The waiting is often the worst part so try to distract yourself somehow, do something mentally absorbing so you can’t think of what’s to come.
Good Luck, and fingers crossed 🤞🤞for the best outcome,
Iris x
Hi Clifden, as many have said, the waiting is the worst. Try not to panic, the surgeons can do incredible work.
I was diagnosed 3c high. grade serous. I had debulking surgery, I did come out of surgery with a stoma - which I wasn't expecting, so it was a bit of a shock... but I accepted it very quickly, knowing that it was life saving surgery. I got used to my stoma very quickly and whilst it's a bit of a hassle to manage sometimes, I have come to appreciate that having the surgery saved my life.
The cancer had wrapped itself around the sigmoid area of my bowels. I do intend to get it reversed, more so because I have a parastomal hernia. If I did not have a hernia, I would contemplate whether I would go in for the reversal at all. A tip: if you do come out with a stoma, after you're all healed and the wound has closed up, do get yourself a couple of support belts to avoid getting a hernia. Hernia's are fairly common after a stoma, but you want to try and avoid getting one. You can buy support belts that allow the colostomy bag to sit through it - I know I'm jumping the gun, you might not even get a stoma, but if you, do speak to your stoma nurse about support garments to help avoid getting a hernia and to support a hernia if you do get one.
I had other bits and bobs removed, not just part of my bowel. On the whole, I'm doing well. My CA125 is stable. I do get more digestive issues now, but nothing that I can't manage.
My bowels took a few days to start working again after surgery, I experienced nausea and tummy cramps when I was recuperating in hospital. But they gave me meds and that all sorted itself out.
I was in hospital for two weeks after surgery. Most women seem to be able to go home after several days, but it took me a bit longer to get up on my feet and build up the strength to get walking.
A tip: if, like me, after your surgery you experience nausea and are unable to eat for a few days, at least make sure you are drinking water and also force yourself to drink Fortisips; a small fortified milkshake that will help to see you through if you can't stomach eating anything. If you keep vomiting it's very easy to get dehydrated without realising. After vomiting on and off for 3-4 days and hardly being able to hold down any water, I asked the nurse to put me on a drip to get fluid back into my body, because of the nurses shift duty, I don't think the nurses realised how much I had been vomiting and how dehydrated I was getting. So just a little tip for you to keep and eye on that.
All the very best for the 18th Feb. When you're up to it, do let us know how you are.
Lisa x
Thanks so much great to hear from someone who's gone through it xx
Hi thereSo sorry you are finding this period difficult, but it is totally normal! The 4 week break is to give your body a rest and ensure it can heal perfectly after the surgery. You have had some fabulous advice from the others but the only thing i wanted to add was think of those 4 weeks as preparing for a battle, stock up your freezer, rope your friends in to support you after surgery (whatever you need) as they will want to help. gets lots if rest eat well and exercise daily so you are as well as you can be, its not easy but we have all done it and felt it was not as bad as we thought. The thoughts that overcome you are your adrenaline racing round your body and that can make you on edge, preparing for a race or battle would give you the same feelings. So embrace it and know its your bodies way of getting you ready, it sounds as though you have lovely support so take it as much as you can, it’s often difficult for us to be ‘patient’ when we are mum and used to holding everything together. For info i am 7 years post my original surgery, so chin up and roll up your sleeves, we are all with you xxx
Diane
Hi I'm a newbie also stage3c. In my pelvis and ovaries and the abdomen maybe spleen. I also have heart failure so was supposed th have surgery on the 2nd of February but cancelled so going to do 3 cycles of chemo first then hopefully surgery then 3 chemo after. It's all so over whelming and frightening. Not sure what frightens me the most chemo or surgery. Would appreciate any advice.
Hi sueithy I am a new to this to and it is frightening and scary I am just over my first chemo cycles and it wasn't a joy but not as bad as I thought since I found this site I have looked at a lot of the ladies stories and it is giving me great encouragement they are just like us they give great advice and they keep fighting for the best results keep the faith 💪
So sorry that you are feeling the way you do but I think that we all have gone through the same thought processes when we were first diagnosed. I feel you have to be your own advocate and go with what you feel in your gut. . You must have trust in your doctors. This journey is not easy and Covid does not help the situation and I think it adds to all the anxiety we already feel with our cancer diagnosis. Everyone has offered you good advice, but only you (with input from doctors and family)can make the decision that best fits your situation. I wish you the best on the 18th that all is a positive outcome. Stay strong.
Bless you lovely lady, your feelings are totally normal and you have every right to feel that way, I'm scared everyday! I'm not going to go into my details but similar story of going to go many times. It seems you have done so well with chemo and I'm sure your surgeon will get rid of everything they see and will try to preserve everything they can but they have to explain all the possible outcomes so try not worry and use this time for some gentle exercise and rest. All the very best to you hun it's not long to wait now and you will be on your way to recovery. Xxx
Hi Clifden1, Firstly good for you for going to your GP and not being fobbed off, I also had previous visits to the GP with the constipation/Fybogel routine but when I arrived with 11 litres of fluid on my abdomen it was a no brainer, what's the matter with them?
As far as the consultation with the Gyn/Oncs goes I think everyone should be pre-warned about the scary conversation your going to hear, I ended up on valium after my consultation and called it the Jack the Ripper op..
The chemo you have had will have shrunk the tumour which will have helped and what you want is for the surgeon to get rid of all the cancer but let me tell you it sounds much worse than it actually is and because you had chemo first that should have helped. I think they feel they need to tell you worst case scenario but I also found that conversation really scary.
You'll be fine I was out on long walks in a very short time after mine, about 3-4 weeks.
Take care huge hug and all the very best. Sue xx
I understand how you feel. I had several trips to my GP and after colonoscopy, ultrasound etc was told I had IBS and given a diet sheet. Four months later I went back as swollen tummy was worse. No pain but bowel issues and nausea. Was referred to gastroenterologist. CT scan requested and lo and behold ovarian cancer high grade. That was in 2016/2017. Had debulking surgery and have had numerous treatments since chemo etc Currently feeling well and would’ve enjoying life were it not fit Covid restrictions. You’re right to vent your feelings. Once you have had the surgery you will have a clearer picture and know what you need to deal with. Keep looking for the positives. Ask for help when you need it. It sounds like you have good support and that’s something to cherish. The people on here and Ovacome support can advise but everyone has different experiences. Cheryl x
Hi there I don't know if someone else telling you it may not be as bad as you fear will help but that has been my experience. I had similar issues about getting a diagnosis, not helped by the covid pandemic. I have ovarian and peritoneal cancer and some of it had wrapped around my bowel. My surgery was scheduled for 8 January and I had all of the same warnings about worst case scenarios as you have been given. It is scary but I held on to my belief that I would get through it all and I have. There was no stoma required and the surgery was deemed successful. Apart from some gut pain and low energy I have been fine. In fact I feel better than I do after the chemo and it is only 4 weeks since the operation. I do hope that everything will go well for you and although it is impossible not to worry, try to hold on to the fact that telling you the worst that could happen is what the medics are obliged to do, not what they necessarily believe will be the case. Stay strong. x
Hi
It’s a very worrying time for sure , things may not be as bad as you fear. I had a recurrence of 3C Ovarian cancer on my bowel. The Stoma nurse literally interrupted my appointment with the CNS . She asked me to go to her office when I was finished. She then measured me up for a possible stoma even though my surgeon had said a stoma unlikely !!! I had no idea that was going to happen and the fear of a stoma was for me almost worse than my diagnosis. I didn’t need one in the end so that was such a relief. My point is they really can’t tell for sure if you will need a stoma until they operate. It really depends on where it is on the bowel , even if you do need one they are usually keen to reverse them where possible.
Please try not to stress over something that might or might not happen. You have enough to do to prepare yourself for surgery. My advice is to try to bolster your body by eating nutritious food before and after surgery.
You can do this, it’s amazing what we are capable of and there are thousands of women who have got through this and are thriving, you can too.
Try to stay positive and strong , accept the diagnosis and learn as much as you can about this disease and how you can help yourself for the future. Take control and don’t be a passive patient , ask questions and partner with your doctors. I found that really helped me and gave me back some autonomy. Very good luck for your surgery and hopefully the colostomy won’t be necessary.
Yeah the beginning stages of dealing with this insidious disease are awful esp during covid. But the good news is the chemo is working so stay strong and fight for your treatment hugs from france
Hi. I am so pleased you pushed to get a diagnosis. I was worried when i came if chemo for my op but was told that the chemo stays in your body for 6 to 8 weeks. When I had my op they warned me that I could have a stoma - I didn't but they warn everyone of this just in case. The op was scarey but I was so well looked after..lots of painkillers but I was up and walking around the day after -though sore - and out in 3 days. Hope all goes well for you. X
Three days?!?! Wow!!! I was in a full week and when they said we're thinking of sending you home tomorrow I literally said you're kidding right? I could have stayed in easily another week with no complaint. I think a lot of us here are moms and know how great it feels to have people take care of you and fuss over you. I just didn't want it to end, even if it was from a hospital 
I don’t even know what to say. What a sad story. I’m furious at your doctor. I pray you will have a good outcome. 🙏
Hi Clifden1. *Sigh* We all feel your pain so much. Just reading through your post gave me a little PTSD because my surgery was only a little over a year ago. You'll be amazed at how strong you actually are, really! I was diagnosed after a long delay as well and it was so bad I had emergency surgery TWO days later! I remember really trying to keep it together and doing pretty well until just hours before the surgery the stoma nurses came in and said oh, by the way, you might have to have one of these we don't know until they do surgery, but let us just give you a little stoma training right now before you go in. And that's when I actually lost it. Nonstop tears for hours. I couldn't believe that on top of everything I might have to deal with the stoma as well! Turns out I didn't need it this time. One year out of surgery and 8 months out of chemo later, I now sort of feel like a superhero to think that I survived all of that crap. You will too! Then you can join our superhero club!
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