Ok, if he talked about in those terms - as being 5mm wide and 3mm deep, then yes, I agree, it does sound like he was talking about a tumour. I'm so sorry, if that is the case and also I'm so sorry you've had so much confusion over this - no one should ever leave hospital with that sort of lack of clarification on something so important and serious. You're right, that is very early - I'm not even sure that would be classed as stage 1a1, it might even be such early cancer that it is pre-staging - a cancer that has only recently turned to cancer, if you see what I mean. If that's the case, then it's obviously a good thing that they have found it so very early. However, the fact that the biopsy showed clear margins does not mean that everything is sorted and that you don't need a hysterectomy. It sounded like you had an adenocarcinoma, which is what he talked about when discussing pre-cancer as 'glandular origin' (CGIN). If this is the case, then you do need to have a hysterectomy I'm afraid. I've thought of an illustration for it, so here goes: think of CGIN as a flower bed and cancer as a weed. The biopsy has shown that they have successfully removed the weed. Great! However, they cannot be sure that there are not more weeds out of sight until they remove your cervix and uterus and have a very close look. Even if there aren't more weeds, there could be more CGIN and logic would suggest that if that patch of CGIN has turned into cancer, that any other patches would as well, given the opportunity. For this reason it's SO important that they remove the entire flower bed (if you see what I mean) in order to be absolutely sure that they are keeping you safe. And you absolutely deserve to be kept safe!
Some things that might help you in terms of asking questions when you go for your appointment next week:
- First of all, check that it was adenocarcinoma (rather than squamous cell carcinoma) that they found.
- Secondly, ask them if they intend to do the hysterectomy vaginally, laparoscopically (key hole) or with an open procedure. They SHOULD answer that they will try and do it vaginally but if they can't then it will be with a laparoscopy. I'd be amazed if they said anything other than this at the Radcliffe as it is a research hospital and they have some excellent consultants, but it's worth asking the question. There's no real reason why anyone should have an open procedure these days (except in exceptional idiosyncratic circumstances) but the percentage is still far higher than it should be.
- Ask the name of your oncologist. Your consultant (who will be a gynaecologist) will be the person with whom you have the most contact and will be the one you will see for follow-up etc.. but you need to know who your oncologist is as well. Ask if he/she will be the one doing your surgery. National Protocol says that an oncologist MUST be present when you have your surgery, so even if the consultant says that he'll do the surgery, make sure the oncologist will be present.
- Make sure you get a date for your surgery that is within 49 days of diagnosis. By my reckoning, if you were diagnosed on 12th April, this means the last day you should have your surgery is 31st May. In reality, they should give you a date long before that, but that's the date by which they HAVE to do it. This is National Protocol - they can't get out of this - and it's really important in order to protect you that they follow it.
If it helps to reassure you, the operation itself is a straightforward operation in terms of how difficult it is for the surgeon to do. It also doesn't take long - most people are in and out of theatre in under three hours. If you take into consideration that this includes getting you under and bringing you round, then the operation itself doesn't take long at all. You're right, it is major surgery, but they will look after you and if you've got a cancer diagnosis, then there is no question whatsoever that it's the best thing for you.
The recovery is not a walk in the park - it takes weeks, you will need help and you won't be able to drive for at least 6 weeks - but at the same time, after this you'll gradually start to feel more yourself again physically and most people recover without any long-term complications or issues.
You asked about ovaries. They left mine in as I was 38 (I'm 39 now) at the time. They only tend to take the ovaries if you're approaching menopausal age (sorry - couldn't think how else to put that) or if they think there's some sort of hormonal component to the cancer (which is rare). However, my consultant has said that in a few months we'll check my hormone levels because I have had some symptoms of menopause. I got lots of hot flushes in the few weeks after my op, I still get some now and I have a few (although not many) other symptoms as well. It's looking like my ovaries have failed, which does sometimes happen after a radical hysterectomy because the ovaries get some of their blood supply from a major artery which runs through the uterus, so once that has gone, it can be a bit hit or miss whether or not your ovaries cope. Most do, but some don't. Everyone's different with a surgically triggered menopause - I have a friend whose ovaries failed after her radical hysterectomy but her only symptoms were a few hot flushes. She only realised a year later when she had her ovaries removed (for something else) and she got no menopausal symptoms whatsoever, that she'd gone through the menopause already, when she had her original surgery! It's one of those things that unfortunately you just don't know how you're going to be or how severe your symptoms will be until it happens. I must admit, I do sometimes wish that they'd taken my ovaries as well, because then at least I'd know I couldn't get ovarian cancer!!
Debbie, I really hope that I have helped rather than added to any confusion over the last few days. Please feel free to talk to me on here any time you like and, if you want to PM me about any aspect of what's going on and how you're feeling, then please don't hesitate.
Thinking of you,