Will my endometrial cancer journey ever end

Hi Scotkb. You are right, you haven't had an easy ride with this so far and I do emphasise with everything you have been through. Waiting for tests, results and then the operation is the pits at the best of times but you and others must be suffering from anxiety overload with the Covid 19 situation but you know, you can do this. By now I think we are all used to not having our freedom, being restricted to one exercise session a day and being cooped up in our little area adapting to a new way of life which of course leads to more thinking, worrying about the not so nice things in life. You have done really well to remain calm and put this disease into perspective 99% of the time but we all have the what if moments when we wonder what exactly is going on inside us. It's like living with a ticking timebomb. I'm going to say it again even though you have heard it a million times before..please try not to worry. It's what this disease is trying to get you to do but don't let it get the better of you now. Womb cancer is a very slow growing one, it is all contained in a little bag and grade one is early stages. More often than not surgery is the only treatment you will need. You will soon have your operation date and then it will be out and where it belongs, macerated for histology and then in the bin! I had my operation a year ago yesterday,stage 1A,grade2 and my three monthly checks have been clear so far. Please be assured that I have had these thoughts too, they are completely natural but it's highly unlikely that you have your own firework display in there with it whooshing around everywhere. So try to carry on keeping your chin up and head held high and share any worries with us. You are a strong woman to come through pneumonia and respiratory failure with its complications so you've got this. You take care now and I'm sending you a virtual hug...you are not alone in this. God bless love lamb.xx

i know the feeling. i had a recurrence of my cancer last summer and things moved very swiftly. i saw the surgeon and was booked in for resection in couple of weeks. i then received a cancellation because they decided because of the location a renal surgeon would be needed to operate. it turned out he was only part time and booked up for weeks if not months and they wouldn't give me a date. i was assured it was slow growing and my prognosis wouldnt be compromised but i phoned every day and became something of a nuisance and it worked they fitted me in but it took 6 weeks.

Sometimes, surgery isn't even required to cure stage 1, just a tablet and a coil!

If you are really concerned Scotkb, I'd ask your consultant if they could start you on Medroxyprogesterone, or Provera for the brand name while you wait for your operation. That's what's in the Mirena Coil, and those are the tablets I take, which has completely got rid of my endometrial cancer. It certainly can't hurt to ask, and if they say yes it will help to set your mind at ease.

Lass

xx

Hi i was on Provera pills for a few weeks but had really bad side effects so my consultant fitted a mirena coil last week. It’s a stopgap until I can have the op. Great to hear that Provera got rid of your cancer . In my case I will definitely need the operation to remove the tumour but at least my consultant , who is fantastic , has given me something to help in the mean time . Thanks for your reply and take care xx

Of course you are worried, it's sensible to admit that. Just to reassure you, I had a delay of nearly 2 years from reporting my first symptoms to getting my hysterectomy. It's now a year since I completed my treatment. You would be at such a risk if you got covid that they have to make absolutely sure that everything is covid free before they treat you.  Worst case scenario would be needing further treatment afterwards, which they may have recommended anyway.

Hi Lass,

I have read your replies on some other posts and it has really helped me understand things, thank you.
i have been trying for a baby for 2 years and following fertility investigations, I was diagnosed with complex atypical hyperplasia in January. I then had a biopsy in February and had the mirena coil fitted. They have since told me the cells were still there but I guess that’s because I’d had the mirena coil fitted at the same time so wouldn’t have had chance to work yet. I was bleeding heavily for the first 2 months and the last month I have been spotting and still am now. I just wanted to ask is this normal? I have my 3 month repeat biopsy on Tuesday and a scan and I’m feeling really nervous that it hasn’t worked or has progressed. 

Hi 

i am sorry to read about what you have been going though . 
i had a mirena coil fitted 6 weeks ago. I was bleeding really heavily for a few weeks and in the end I phoned my gynaecology care team as I was worried . I had an ultrasound done that day and everything was fine . They couldn’t say for definite what was causing the bleeding but they did say it’s normal in some people . I was reassured that there was nothing showing up on the scan to be concerned about . I bleed off and on now like you .  I was diagnosed last November and they were able to tell me that my tumour hadn’t changed or progressed. I was a nervous wreck having the scan as all the worse case scenarios go through your brain. I hope that all goes well at your scan. If you want to chat about it afterwards then I’m here X

Thank you for your kind reply. Sorry to hear that you’re going through it too. The last time I was meant to have an appointment it was done as a telephone one and I mentioned the bleeding to my consultant which I think is why he’s suggested a scan too, which made me panic more. Glad that it was okay for you. And yes I can completely understand about all the scenarios that rush through your mind. I know that I won’t get the biopsy results straight away but with the scan I guess they can tell me there and then if there’s anything and I know I will be in tears. But going to try and be positive! I will let you know how it goes X 

They are very good about doing the scans whenever there is the tiniest concern.  My consultant told me that he booked some of mine to reassure m,e more than because he needed to see them. They may not give you the results straight away though as it's the consultant who needs to see them and speak to you, not the people doing the scans.  The wait should only be a couple of days or so, but I do know that it will feel like years. Do your best to stay positive x