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Hi Joanne, well done for having the op and I feel for you that you it was a more complicated operation. I also feel for you as it’s not helpful at all when the people we’re looking to to help us, those who you are in charge of our care, don’t know all that we want them to. And sometimes their choice of words doesn’t help either. Post op histology revealed a few cancerous cells on my cervix too, making it stage 2, which was scary enough, But then they said “we also found something totally unexpected and extremely rare and we don’t really know what to do about it”. I hated hearing all of that - I didn’t want unexpected, rare things that left my experts baffled. And I don’t think they had a clue how I felt about that. 
They then told me they’d found precancerous stics in my fallopian tubes that, if undetected, would have travelled up to my ovaries and caused high grade hard to treat  ovarian cancer. So it was good they were gone but I was very worried by them saying what they did as it suggested I had more to worry about that they’d been saying. So I do feel for you very much, especially as it means yet another wait.

Hello JoanneL 

I am sorry to hear your news. You are recovering from major surgery and you are understandably shocked by what they have told you.

I don't have any comparable experience except that I had a total hysterectomy plus BSO and am awaiting pelvic radiotherapy soon.

I would take it one day at a time as much as you can. Easy to say not always easy to do I know. Focus on your operation recovery for now. It sounds like your operation was successful and so do everything you can to help yourself heal - while you wait. 

As for the tumour, hopefully the new team can identify it and help plan a way forward for treatment.

Your Macmillan nurse is there for you to speak to if you want to discuss any concerns or worries in the meantime. You also have this forum which is supportive and will help and support you. 

I have felt frightened, shocked, calm, numb oh so many emotions in the past ten weeks. It is not easy to wait. So be kind to yourself and share your worries with those you love and this forum if you wish. You are not alone.

Sending a big hug.

Hi Joanne,

I really feel for you.

Its enough to get over a hysterectomy without bowel complications. I know through being on the bowel site (because of my husband) that it takes time to get over a bowel operation, and that the bowel does not like being interfered with.

When I had my scans before my hysterectomy 6 years ago now, they discovered that my thyroid had been steadily multiplying down behind the back of my throat. Apparently it usually comes out as a lump in front of the neck. I was sent to the throat department, and really thought I faced two operations. The womb people seemed worried about the gap between the growth and my windpipe. The throat people said they had seen far worse and as long as I could breathe and eat OK they were not worried!! I've to go back if I have any problems. As they put it 'The womb is a long way from the throat', meaning tolerances were different!!!!! 

I suspect someone, somewhere has seen similar to you. In my experience the medical profession are pretty good at sorting you out.

Look after yourself, take things easy and I wish you all the best.