Had appt last Wednesday and after 2.5 hours of waiting saw a gynae onc surgeon unexpectedly instead of my consultant which is who I was expecting to see.
As you can imagine that was a shock in itself before I heard what she had to say. As I have low grade serous and have not long finished chemo they have looked at my results and I still have bits left in my abdomen although not big but also have a bit on my bowel. Adding to this I have a large cyst attached to my liver which having spoken to the liver people they recommended removing it. The gynae surgeon said this would mean a huge operation and being in hospital in HDU for a week. Being low grade which doesn't respond to chemo well they have collectively decided that an op to remove the liver cyst and the bits down below is the best option hoping for NED after op. The other huge shock was that I will most likely have a stoma for 3 to 6 months and then it can hopefully be reversed but there's a 5% chance it won't be. The mere thought of a stoma puts the fear of god into me let alone the op itself which she keeps stressing is huge and will be a 6 month recovery, I would have an epidural as well as a general, drains from my liver etc etc.
The thing is I'm only 45 and feel so well and wouldn't know I have anything wrong with me right now so I suppose that's a good thing but going in feeling like this and waking up to all that is terrifying.
I do have an option of wait because it's low grade they don't expect anything to change in the near future but I kind of feel like I'll be delaying the inevitable. Alternatively I can wait and then try another chemo or a trial but they do feel the liver cyst ought to come out because it grew then remained the same during chemo although the bits and pieces in my abdomen shrunk and my CA125 was 28 afterwards from 100.
In the meantime I am going to see the gynae surgeon again on wed to discuss further with questions, I am going to have an appt with the liver surgeon so he can explain that bit further and also a stoma nurse. There is no rush to make my decision but if I decide to go ahead with it she told me it'll prob take about a month to organise as both surgeons will be doing the op and there are lots of pre op things I will need to have done.
I am petrified of all the implications I think esp the stoma, I think I could cope if it really was for 3 to 6 months but permanent is another thing, although there's only a small percentage it still could happen.
What to do? I can't stop worrying it's just so much to take in.
Jo x
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I am sorry to hear your news, it must have come as a shock. I can't comment on most of your post but I can reassure you, I hope, about the stoma. I have PPC and after my second chemo had a bowel perforation resulting in emergency surgery and a permanent (I'm told) stoma. I had no time to plan and no idea I even had a problem in this area. I, like you, was horrified at the thought. For the first week after surgery I was unable to even look at it but with the help of the amazing stoma team gradually came to terms. I have been home now almost 4,weeks and am coping fine. With support from the hospital team and my family, it is doable. Whilst it's not ideal at least I am alive and it functions well. No more laxatives and no more pain. Believe me it does get easier and as my husband says you are still the same person. Good luck with your treatment x x
Thank you so much for your reply and like you say you're alive , I need to look at the bigger picture perhaps. All the best with your continuing recovery and chemo xx
I truly empathise with all you are thinking. Embarking on such big surgery is daunting. However you sound as if you are currently in the fittest place you can be and that is certainly an advantage should you go ahead.
I delayed my surgery until after Christmas ( have 3 children ) and it gave me precious time to seek anxiety counselling.
I was predicted to need a stoma, which wasn't needed in the end but the Stoma nurses were brilliant preparing me.
I had surgery when I recurred in 2015. Also in my 40's I also had a stoma. They said temporary but I do still have it. It really isn't so bad once you get into a routine. I'd rather not have it of course but don't let it put you off surgery. Read up on desktop 3 trial which supports secondary surgery for recurrence
Thanks Lily-Anne, I will read that. They did say they collectively agreed that this was the best way forward and on low grade often achieves better results than chemo.
My husband and I like our hols when possible and have a good social life, can you still eat and drink as normal?
I can't eat sweet corn or peppers any more apart from that it's business as usual, excuse the pun. The first few weeks were hard because I was in denial but I joined the colostomy association and there's a great group on FB too.
I now forget about it most of the time as apart from chemo time it's one change a day. The used bag goes in the bin
After chemo, I had widespread low grade disease across my abdomen.
During the course of my adult life, I've had many major ops on my abdomen. I can't say it's been easy, but I'm still here.
When I was diagnosed, i was told there'd be no debulking op as I'd already had a hysterectomy. Unbeknown to me but known to the team, and apart from widespread disease post chemo, I had a growing tumour above my naval. My hospital team isn't known for allowing for patient input to be honest but I didn't know that then.
Had I been told, I would have asked for it to be removed. Two years later, I almost lost my life when it necrotised.
I can only say what I would do. I think I'd ask for a date to be booked in, giving me time to have a holiday. Strangely, holidays aren't important to me any more for some reason, but I used to love to travel.
The only thing a person can do in the end sometimes is to trust in the medics and, in your case, they must think, on balance, that this is the way forward.
Lily-Anne has been through the mill herself and I think her attitude has helped a lot of women cope with difficult decisions.
Thank you Sue and in response to your comment on Lily-Anne (I was diagnosed in 2012) I have seen lots of her posts over the years and agree Lily-Anne your positive attitude and advice to others whilst going through all you have is fantastic!
The reason we're on this site is because hopefully we can all help each other cope as we can empathise what each other are going through.
I still have a lot of thinking to do and various appointments.
Hi jo, you have such a lot to take on board and assimilate.
All the other ladies have given you such good advice.
I had my debulking surgery with the knowledge that a stoma was a distinct probability as my tumour was adhered to my bowel and other places, my surgeon was amazing and we managed to dodge that bullet, he was surprised but according to the scans he had thought the stoma probable, he said that once he was in there that he was able to work and avoid it, so I suppose they give us the worst case scenario and anything else is a bonus. To be honest I didn't really fancy a stoma but if it was part of the process that helped keep me alive I would have embraced one especially if only temporary.
I have a lot of cysts in my liver and they're behaving at the minute but I know that the day will come when they need to have a serious talking to and again, if it keeps me well long term I wouldn't hesitate in having the appropriate treatment together with any side effects. I think having had our cancer our outlook on survival changes dramatically and any treatment that keeps us alive is the way forward.
Good luck with all this, it's a lot to take on board but by speaking with all the different people you have available you will be able to make the right choices.
Thank you Jane, that's great news that you managed not to have the stoma esp as they said it was likely. Like you said though being alive is the most important thing though as long as I still have a good quality of life and I'm yet to find out how it will impact. If it's just temporary no matter what it won't be a problem but permanently still terrifies me at the moment.
Your advice is really good and I will update when I have spoken with various people.
Hi Jo... I was told to expect a stoma too and it was the first thing I thought of when the necrotic tumour was removed. You'd think I'd have thought more about my prognosis.
I didn't have one in the end and I think they were just trying to be honest because I think it's good to be mentally prepared. I'd hate not to have been told. Xx
Hi Jo and oh lord what a dilemma to have to be facing! I can't really add much to what other ladies have said but it sounds to me like you're still in a bit of shock at the enormity of the situation so be easy on yourself and give you and hubby a chance to let it sink in and write your questions down ready for your next appointment.
None of us can say which way we'd jump faced with this scenario - for me I would always opt for the knife but we're all so different with how we approach and deal with this disease! It's also a double edged sword when you feel so well!!
I'm always a firm believer in gut instinct so I guess what I'm saying Jo is just get a few more facts at your next appointment and keep weighing up your options.
God of course!!!! You need to concentrate on yourself and what to do - I can imagine the shock! I know when I had the 1st recurrence on my liver and surgery was briefly mentioned I was told in no uncertain terms what a big op it would be - the liver bleeds easily apparently!
You message when you can - sending big hugs 😍😍😍
Hi jo
My thoughts are with you. I was diagnosed in 2009 and was not expecting a stoma what a shock but have accepted it and it hasn't changed my life a great deal still swim and do everything I would have done before. Look after yourself x
We are all different and react differently to what faces us but if you were to let this opportunity of extending your life expectancy slip by then I think you would regret it. But, after all the good advice the girls have given you so far, in the end it is your decision and I'm sure you will make the right one for you. Be brave and live xxx
Hi Jo. You are doing the right thing. Just take in all the information given to you, ask the professionals lots of questions and have all the facts before you. It's good to seek other's opinions but you must decide for yourself. It is hard and we would all like someone else to make some difficult decisions for us but sometimes they can't. It is about YOU and what you want that matters now. Don't be afraid. I'm sure most people will say that their bodies aren't perfect. Mine has so many things wrong with it but it doesn't matter to me as I'm alive and I can still speak. If I lost the power of speech then they could screw the coffin lid down the same day. Anyone of my friends and family would tell you that.
Go girl !!
Kryssy xx
What a lot to take in! I was struck by how well your team seem to be working together and thinking about you. And also that they're up for doing complicated surgery. Very reassuring.
If there's one thing this horrible disease shows time and again is how resilient we are and how we manage to cope with really tough things.
Thanks for your reply and yes the fact that they want to do this surgery I suppose is quite reassuring as if they didn't expect some success then they wouldn't even offer it I'm sure. Thank you and yes your comment has really sunk in with me.
Over the last 5 years which goes for everybody on here, I surprise myself and others how I'm coping with all this which makes me a stronger person in general I think.
I had my op in January to remove tumours. I was told they weren't touching my bowel and their was only a small chance of ending up with a stoma. The first question I asked when I woke after a massive op was. Do I have a bag. Nothing about the cancer just the bag. That's what I call it now. Haha I can understand how you are feeling it's very scary and you think your life will never be the same again. But you will get used to it and you can still carry on with hols and nights out it just takes time. It has taken me 6 months to get my head round it. I'm only 46 myself and this illness was not on my list of things to do. You will come to terms with it. Just like I did. Any questions you want to ask don't hesitate
What a shock that must have been! Not to even be forewarned and wake up with it! You sound like you're coping well with it.l though, good for you. Interestingly enough the surgeon told me only a small percentage of a permanent one but the likelihood of a temporary one but...... I'm yet to hear of anybody who has had a reversal.
A quick update I have another appointment with the gynae onc surgeon tomorrow at 3:45 so will go armed with more questions as it was all a bit of a shock last week!
Love to all the ladies on this site and those who have taken time to respond to me and it really does help..... my god we have to be so strong for this hideous disease don't we!!!!
Hi. The decision is,of course, yours. When I had my last recurrence, I was told for nearly 4 years there would be no further surgery. After 3 courses of chemo & about 2 years on hormone treatments, I was offered the chance of surgery after all. I was told it would be big, involving removal of several tumours, possibly removal of my spleen, possibly scraping my liver, probable stoma, 1 - 2 days in HDU. There were a number of risks, including several previous ops & past hernias. And he said he would only attempt it if my diabetes was under good control (it was fortunately). It was daunting, I wasn't sure whether to go ahead at first. But I decided I would, as it was a chance to hopefully get rid of those aliens. I was seen by the stoma nurse beforehand to discuss it, & decide where the stoma would be. This was 6 months ago. I still have my spleen, my liver wasn't scraped, although my left kidney was. And I don't have a stoma, though there were others in the ward who'd had surgery for oc & did have stomas. For me, it was the right decision. Di
When I was first diagnosed, I was told during debulking that there was a 10 percent chance that I would end up with the stoma because tumors were close to my bowels.Fortunetly I woke up without a stoma even though a tumor was touching my bowel.They were able to cut the tumor away without damaging my bowel.My surgeon new I wasn't going to except the permanent stoma.I could not wrap my head around having a stoma for the rest of my life.I took my chances especially because I was also told I was inoperable.So I know where your head is at.I know my husband would have been okay with it.Your family would want you to go ahead with the operation.Trust your surgeon,and that she/he will do the best they can and will take good care of you.My surgeon told me they have to tell that there is a 10 percent chance you could end up with a stoma. I trusted my surgeon and that she would take really good care of me knowing that I couldn't handle a stoma and feel very fortunate.Good luck with your decision..😎💙💙
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