Endometrial cancer

Hi Sassy, I’m so sorry to hear you’ve been having all this aggro with the long wait for surgery. I haven’t been diagnosed yet, but the consultant said the walls of my uterus look cancerous when she did the  hysteroscopy last week, so I’ll probably be in the same boat as you - if I’m lucky and it hasn’t spread. I’ve heard about these long waits before, and I’ve been looking up the cost of a private op £6000-8000. If it comes to it I’ll be tempted to take out a loan and have it done privately, as all the waiting is absolutely vile, I don’t think anyone realises how bad it is until they have to face it themselves. Look after yourself, lots of love, Julia xx

Hi Fridgelicker

The waiting is horrible, and there is so much of it all along the way with a cancer diagnosis. I read your other thread and see you’ve had some excellent advice there. Try not to run ahead with your thoughts  if you can-you need to stay in the moment and deal with things one day and thing at a time. 

Medics can be thoughtless with their words, without realising that we hang onto every single one of them and replay them in our minds. After my failed attempt at a hysterectomy, my surgeon made a comment when she came to see me in my hospital bed that I had a “mega colon”. Cue worry from me about the significance of that! Turns out it was just an observation, not an indication there was anything wrong.

Personally, I wouldn’t pay to go private as patients will be prioritised for surgery based on seriousness in my experience in the nhs. I had different surgery, but could not have afforded to go private as I was told by someone who had been through my op that it cost around £45k. I couldn’t afford that, the surgeons would have likely been the same ones who operated on me in the nhs and I just had to wait till they were all available on the same day.

Obviously it’s not the same situation as you may be in, but I’d encourage you not to rush ahead until you know more. 

Sarah xx

Hi Fridgelicker. I think we all had thoughts to go down the private route at some point during the wait. I have read somewhere the some ladies had the op done privately but the wait for histology results took longer. Our cancer is slow growing so I wouldn't fret too much.

I agree with SarahH21, deal with things one day at a time.

Hugs, Barb xx

Hi Fridgelicker, my CNS advised against me having the op done privately because if it’s done on the NHS it’s done to recommended national guidelines and also the results get fully documented and linked. Whilst it can work out for some women, we’ve had others on this group who’ve had the op done privately, needed further treatment (on the NHS) and certain things hadn’t been documented which meant overall it took longer.

Thank you for your advice, it’s early days for me, and I’m trying to live in the here and now, and not to keep thinking ahead, but it’s difficult!

Thanks Barb, I was told by a MacMillan nurse that they are usually slow growing, but I last had fibroids removed in 2000, and since then no check ups, only smears so I could have had this for ages and not known about it till I had spotting about a month ago. What I thought was trapped wind or irritable bowel could have been this instead. Trouble is, when you are busy as a carer you don’t care for yourself, but not any more, I’m putting myself at the top from now on!

Thank you for the advice, looks like I’ll just have to go with it for the time being

Fridgelicker, just to say that most women with endometrial cancer don’t have any pain or discomfort with it. My only symptom was the faint pink spotting.

I don’t want to influence anyone’s re private versus NHS I think most of the surgeons who perform the surgery also work for the NHS and adhere to the same strict guidelines I can only speak from experience all my treatment over five years was private and if I was to have it again I would go down the same route I wanted a particular surgeon to operate on me  and this would not have happened on the NH S  I wanted someone very experienced and also someone I could talk to and be given honest answers I also wanted continuity of treatment and not to see various registrars locus etc post op My whole experience from start to finish was as pleasant and as stress free as anything like this can be Not to mention a lovely private en-suite room a choice of wonderful food and almost one to one nursing care Yes it cost but just the price of a few holidays or a new car I worked all my working life in the NHS and think it is a wonderful institution with many wonderful dedicated staff but still feel I made the right choice

Hi Petronella, I’m glad it all worked out well for you - it’s just that sometimes it doesn’t, not in terms of the op but in terms of what’s done and how the histology is reported, and how it’s all then transferred into the NHS system if adjuvant treatment is recommended. It’s all down to individual choice of course.