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My Carcinosarcoma story UK

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(@jenster100)
Posts: 2
New Member
Topic starter
 

Hi Everyone

I was diagnosed in Feb 2016 with Stage 1A MMMT. I was 45 years old. To say I was devastated doesn't come close. My consultant thought I had a fibroid/polyp. It was only after the routine hysteroscopy did the Consultant tell me he feared it was cancer. So I guess I was one of those unfortunate souls who had the 'cancerous' polyp.

I had surgery in April 2016, full hysterectomy, 22 lymph nodes taken etc. It was an ordeal as I'd never spent a night in hospital and until this point I've never been ill with anything other than a cold!

Surgery was followed by carbo/taxol x 4 sessions which was not as bad as I imagined it would be. I then had 3 sessions of brachytherapy which was as bad as I imagined it would be. Were it not for the amazing staff at the hospital and there positivity I would dearly have done a runner...clearly that's tricky to do when you're hooked up.

I've always been a positive person, with a sunny outlook and a sense of humour. Were it not for these qualities I would never have managed to get through the treatment.

Since September 2016 I've been on holiday, returned to work and living life to the max, literally.

I pray every day that there will be a major breakthrough in for womb cancer and MMMT. There is so little information out there about it and what there is frankly scares the life out of everyone and is so full of doom and gloom that it's not worth reading.

I enjoy every single day, though vigilant of any twinges I carry on as normal.

I live in the UK and though my consultant (over 17 years) has only seen a few cases of MMMT he urges me to be positive or as he put it "it's the worst possible news'.

Love to all
j

 
Posted : 21/03/2018 5:06 am
 ann
(@ann)
Posts: 65
Trusted Member
 

Glad you posted about your experience! It is important that we share our stories with each other so we can all learn! How are you doing now? I have been cancer free since October of 2017 but still have a long way to go! Still getting regular checkups and scans done.

 
Posted : 23/03/2018 7:36 am
(@nursebetty1)
Posts: 12
Active Member
 

Jenny, it has been two years for you. This gives me hope, thanks for sharing. How are you nowadays.

 
Posted : 13/07/2018 8:57 am
(@jenster100)
Posts: 2
New Member
Topic starter
 

Hi Betty

Hope you're doing well. I'm just coming up to another check-up so the anxiety has kicked in but feel fine, no symptoms so hoping that's a good sign.

As ever praying for a miracle
xx

 
Posted : 30/10/2018 4:25 am
(@andy)
Posts: 1
New Member
 

My wife was given diagnosis today. Everything seems to be doom. We went from thinking okay cancer, so hysterectomy and get it out of the body. Then today’s call that it’s GCS. Even reading your two years later story is a relief. So much to learn.

 
Posted : 08/11/2018 1:16 am
(@nursebetty1)
Posts: 12
Active Member
 

Dear Jenny, Hope you continue to have NED. Chemo was easy for me other than hair loss. Started brachytherapy and got a UTI, but it is tolerable.start my follow up CT in Nov. and will have a CT every 6 months, examines every 3 months. Feeling very well, thank you!

 
Posted : 08/11/2018 11:30 am
 ann
(@ann)
Posts: 65
Trusted Member
 

Andy,

So glad you and your wife have found this website. It is a scary, discouraging diagnosis, but you have found a family now - dealing with the same issues you will face. Hear you will find encouragement and suggestions for dealing with the issues!

I wish you the best through this journey!

Ann

 
Posted : 09/11/2018 11:37 am
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