facing a very different situation than I thought after full hysterectomy

Hi Kindbutanxious

I'm not a member of this group, so don't have the experiences you're looking for, but I noticed that you hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily spotted.

While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi

I have had a similar experience.  I had everything that you mentioned removed too, but also my large bowel which means I now have a stoma bag. I'm sorry to hear your experiences and can't offer a solution but wanted to offer you an 'ear', it is a scary time. I have had chemotherapy which whilst not pleasant, was manageable and I got through. I am now on maintenance treatment which seems to be ok although they're still trying to get the dosage right. If you want to ask any more, please do so. Keep pushing the consultant and ask as many questions as you can think of! Good luck

Hi Thanks so much for replying to my post. It made me feel less alone. I'll probably have all sorts of questions later but for the moment I just have a couple. Did you have your intestine removed at a later date than all the rest, and if so how much afterwards?  Also you advise me to keep pushing the consult. How accessible did you find yours? So far communications seem pretty 

1. not 

Hi Thanks so much for replying to my post. It made me feel less alone. I'll probably have all sorts of questions later but for the moment I just have a couple. Did you have your intestine removed at a later date than all the rest, and if so how much afterwards?  Also you advise me to keep pushing the consultant. How accessible did you find yours? So far communications seem pretty chaotic and unsatisfactory. And my GP surgery just seems not to be remotely on the ball.

I'm really glad your situation is tolerable by the sound of it. Good luck and thanks again.

I went in thinking it would just be the hysterectomy but they found it had spread so they took my colon & spleen out at the same time. My consultant there was great. Following chemotherapy at a hospital nearer me, it's been ok but we do have to keep chasing things up and making suggestions! This is regarding the tablets I'm now on, as I've not reacted brilliantly.  

Looking back at your 1st comment, there was some confusion at the start in diagnosis as they couldn't decide if it was gynaecological or bowel based. We were going between 2 hospitals before I was first referred to another which was more specialised. So, yes  chase things up! 

Thanks for telling me more. You sound really brave. They don't know where my cancer is from so are examining upper gastrointestinal area but communications are not good and I'm really not dealing well with the anxiety. Good luck.

I'm glad they are looking into things, that's positive.  I'm not particularly brave, just trying to keep a practical head about things. I know it's an anxious time and hope you have some supportive people around you. My main advice to myself was accept you'll have days when things feel & seem awful, but know that this won't always be the case. All the best. Let me know how things go.

Hello

i was just wondering how you are?

I’ve had a similar experience, had full hysterectomy in the summer following a huge tumour on one ovary and slightly smaller on the other. I was told it had attached itself to other bits and pieces but surgeon was happy he’d got everything.

I’ve now been told after 6 rounds of chemo that it is still on my bowel/colon. I’m to wait for a couple of months to see what happens before they decide what to do.

i have no idea of what to expect, information always seems so vague and confusing.

Hello

I'm sorry to hear this, as it must be a big shock and disappointment after what you were initially told. I'm not sure I can offer much in the way of information, still less advice, as I seem to be behind you in terms of the process. I started chemotherapy at the very end of November but my body had not recovered enough from surgery and I hadn't regained enough weight to tolerate the drugs. I ended up back in hospital to be helped begin eating enough safely, and was also treated for severe depression. Chemotherapy was suspended while all that happened. To cut a long story short I had my second round in mid-January with no dire effects and have just had my third. I have been told that the rare type of cancer I have is less responsive to chemotherapy than the much more usual kind but the chemo may do some good. So I don't really know whether there is still cancer around in my pelvic region somewhere and what if anything the chemotherapy will do. Presumably I won't find out anything else until after my six rounds of chemo. I only hope I can manage to get through them without having to suspend it again or becoming too unwell. 

I'm sorry not to be any help, but I would advise you to ask all the questions you can of the consultant or anyone else you see. It seems to me people don't always volunteer information but are perfectly happy to give it. I expect you have a specialist nurse who will help you negotiate your way round all the confusion. Mine has been brilliant.

I wish you all the very best for whatever comes next in the way of treatment.