Hi everyone

Well here I find myself in the club nobody ever really wants to be in but makes the most of, here's my story....

First diagnosed back in May 2020 with stage 1b2 CC, and treated with a radical hysterectomy, all margins were good lymph nodes clear however, I did have extensive LVSI. Prior to my diagnosis I didn't have any screaming out symptoms and in fact was only forwarded to colposcopy due to my coil disappearing. Turns out the mass had pushed the coil way up high so in the long run thank goodness because im bot sure how long I would of just been carrying on as normal completely unaware of this thing.

Any way post radical hysterectomy everything has been fine. I've felt fit and healthy infact I've grabbed life by the balls alot more than I'd probably of done in the past. Check with my CNS were kept to every 3/4 months and at the 12 month mark I was sent for an MRI due to just a few little niggles in my lower abdomen I wanted checking, turns out every thing was still all clear and the niggles were lymphoceles which were caused by a back up of fluid on the lymph nodes. I was told they would come and go which they did and off I went again carrying on my normal 3/4 monthly check ups.

Fast forward to now! My worst nightmare. So back in May at my 2 year mark I had my regular check with my CNS, we discussed again the few little niggles of pain I was feeling in my abdomen and also I very faint stabbing pain in my right side. We decided that an ultrasound would be a good course of action as the MRI 13 month previous hadn't picked anything up and my nurse explained the internal ultrasound can sometimes pick up other things, neither of us felt this needed to be done as an urgent referral so I waited the standard time of 6 weeks as I was due to go on holiday beforehand. 

So ultrasound done and results back! Nothing highlighted any major concerns. The lymphoceles were still acting up and my endometriosis was slowly making a return (they removed some during my hysterectomy) only slight red flag was water retention to the right kidney. My CNS decided to investigate why this was happening and then decided to send me for an MRI.

Thank goodness she did. The MRI picked up my worst fear, I had recurrence. There was a 5cm mass found very deep In my pelvis. This was now 6 weeks ago (as of 13.09.22) because of the location of the mass there have been many complications. Firstly my kidney was very distended so mission one unblock with a stent. Secondly again the location of the mass is actually pushing directly into the sigmoid part of my bowel, so although at the moment I'm positive it's not technically on my bowel the possibility is it will have perforated the lining, therefore I can not start any treatment to shrink this thing without having stoma surgery first.

And that's where I'm upto, I had my ureter stent fitted on Monday 5th Sept under GA and I'm now having my stoma surgery on the 20th Sept (next Tues eeekkk). Once I'm recovered they will then re-do the pet scan and plan the radio and chemo in for me ASAP.

I'm having my good and my bad days. I look at my partner and my daughter who's just turned 18 and feel so guilty they have to see me go through this. And my mum, well I know this is every mum's worst nightmare and seeing all three of them together breaks me. I'm full of what ifs...and then I manage to snap myself out of it and continue as normal as can be.

I guess I'm just ready to get going with treating this and just pray each day that I win....I am very competitive so its definitely got a struggle on its hands!!!

  • Hi  and welcome to the group!

    Wow, what a story, and what a time you’ve had over the last couple of years. Recurrence is what we all dread, but better to have it found so it can be dealt with. My recurrence was found only 9 months after treatment ended, but I’m so glad it was. My story is in my bio if you click my name.

    I’ve  got 2 stomas, and I’m presuming from your story you’ll be having a colostomy. Strange at first but really very straightforward to manage. Lots of us too have been through chemo and radiotherapy so can share our experiences of that. 

    The guilt we feel seeing the effect of all of this on our family is an awful thing to bear, but the main thing is that you are having things dealt with quickly and they will hit it hard. Having family support will be hugely beneficial for you going forward. We all have the what ifs, too, but we’re only human! You sound like you have a strong and positive mindset, and that will serve you very well going through this.

    I hope you’ll keep posting with us and chatting-the group is a safe place to say how you’re feeling, ask any questions and let off steam if need be! I’m the resident “expert” here on all things stoma related but the community also has another group specifically for stomas-I pop up there too, and in the other groups representing the body part I’ve lost along the way! Joy

    Sarah xx

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