Hello - I got diagnosed with endometrial cancer back in December. They eventually got round to seeing me in March - they don’t know if it’s low or high grade. They’re really eager to do a hysterectomy and get it all out and I would agree with this except - I also have ulcerative colitis. I had my colon removed and replaced with an internal J Pouch. A hysterectomy would destroy all that and leave me with a stoma.
I’ve had a stoma before and it was disastrous. It leaked constantly, I had no support and I couldn’t leave the house because of the constant leaking.
I’d rather avoid the stoma. My consultant at one hospital said that if the tumour was low grade then it could just be monitored.
The consultant at the other hospital insists it be removed.
I feel really healthy and well and really am having trouble with the idea of going into hospital well and coming out permanently disabled if I don’t need to be, especially given the lack of support I had last time.
I’m not getting much support from my cancer nurse either. She called once, offered to change an MRI appointment I was finding it difficult to get to, didn’t change the appointment and didn’t call back.
Anyway. That’s it. I’m having an MRI to see if it’s grown but they can’t decide if it’s low grade and therefore can be monitored or high grade and therefore has to come out.
And I am really struggling with the idea of having an operation which will permanently disable me based on a maybe - especially given the complete lack of support.
Hello MEB
Welcome to the Womb group. I am sorry to hear of your diagnosis of endometrial cancer back in December. I can understand your concerns about having the surgery and about wanting to avoid a stoma. I am sorry that you have experienced such a lack of support.
You say that they can't decide whether it is low or high grade- what did your biopsy come back as? This should give them a provisional idea.
Hopefully the MRI will give a clearer understanding and when you have all the facts then you can go about making the right choice for you. Most ladies on here seem to have a hysterectomy as first line of treatment and then some of us go on to have follow up treatment. There are ladies on here who have been offered the mirena coil for a time and they are monitored.
I wonder if it would be worth you giving the Support Line a call tomorrow and talking things through with one of the nurses? The details are below.
I do understand that you are feeling healthy and are struggling with the thought of the surgery disabling you. For me the treatment I had made me more ill than the actual cancer and has left me with ongoing side effects. Have you got a consultant for the ulcerative colitis that could go through possibilities with you? Would a hysterectomy definitely lead to a stoma?
There is a forum on here that may also be able to offer some support.
Ileostomy, colostomy and stoma forum | Macmillan Online Community
Hope this helps a bit and that the MRI brings some answers for you. In the meantime if there is anything you need then please do ask
Jane
