Scary uncertain times

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Hi everyone, I’m 67 years old and used this forum 6 years ago when I had a sub total hysterectomy and radiotherapy fir endometrial cancer. They couldn’t remove my cervix or right ovary as I had a frozen pelvis and they were stuck to my bladder and bowel, so would be risky.

I started having vaginal bleeding again a year ago and biopsies were taken in June, but went awol fir a few months! I finally managed to get a follow up and apparently the biopsies were “odd” but not conclusive. I had a PET/CT which showed some hotspots, an MRI which was inconclusive. Then. LETZ before Christmas. The biopsies that were taken were clear, but there’s a suspicion that they didn’t reach the area of concern. I’m seeing consultant next week after a 6 week wait to see if symptoms would settle after the LETZ surgery. He had mentioned that if symptoms hadn’t settled, I might need a pelvic extenteration as removing the cervix alone would be very risky due to it being stuck to the bladder. Quite frankly, this terrifies me….especially as the diagnosis doesn’t appear to be 100% conclusive. I only have to wait until next week, but feel I’ve been waiting since June and am not very patient! Anyway, I don’t expect a response to this, but just wanted to vent and let you know where I am….. good luck to everyone on here. X

  • Hi  and welcome to our group.

    Gosh, you’ve had a lot of waiting and no real answers so this must be so stressful for you. It must be so frustrating that you haven’t had a conclusive diagnosis, and I hope the consultant is going to give you something more concrete when you have your appointment. 

    Just to let you know, I’m 60 and had a total pelvic exenteration 3 years ago now so if that is the potential outcome for you I hope I’ll be able to help support you from my own experience. Please let us know how you get on, and I’m happy to answer any questions I can about this.

    Sarah xx


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  • Thanks so much for your reply Sarah……

    It’s great to hear from someone who’s been through this. Can I ask how long did it take to recover from the op? I’m an avid golfer, but have had 3 shoulder repairs and 2 knee replacements on top of the cancer stuff over the last 8 years. Last summer was my first full summer of golf and I’m really reluctant to have more major surgery and miss all my golf again, so am in two minds about having it if it’s necessary unless it significantly improves my prognosis

  • I can’t sugar coat it…the recovery is very long. I was told it would take a year, and it certainly does take many months. It’s a huge trauma to your body and there is a lot of healing to be done afterwards. I was exhausted and very weak in the weeks following my surgery. 

    I perhaps was in a different situation in that I would have not survived without the surgery, but it gave me the chance to remove the cancer completely-which it did. When it’s life or death, it tends to concentrate the mind! Your situation might not be quite so pressing. For me it was a straight choice between a chance at life or not having that opportunity. 

    I think you’d need to have a very frank conversation with your consultant if they offer this surgery and you decide to turn it down. It can only be offered if cancer is contained within the pelvis, so it’s off the table for many ladies whose cancer has spread. You would need to be very aware of the consequences of not having it if it is recommended, and it’s definitely not a decision to be taken lightly. If you have cancer, then they might offer you chemotherapy, but would you be well enough to play golf if you had chemo? I don’t know the answer to that one. And if you have cancer and it spreads, it may not be possible to offer the surgery at a later date.

    Are you well in yourself at the moment? My pain was awful so I guessed that the pain from surgery would be temporary instead of permanent and I was right. 

    Only you can decide what is most important to you and only you can make that decision. I can only say that I have never regretted it and it was the right decision for me. I put living before any other consideration.

    Sarah xx


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  • Thanks Sarah for your honesty. Part of my problem is that I do feel well at the moment, just some back / side / pelvic pain pain and discharge., so it’s easy to sit back and say I wouldn’t go ahead if they offered it. But, bearing in mind it wouldn’t be offered unless it would be a chance it would be life preserving or extending, as you say that certainly focuses the mind.

    I guess I’ll wait and see what he says on Weds, he is a really good surgeon and I have total confidence in him. My background is Intensive Care nursing, so I think that bit of knowledge is a bit of a double edged sword too.

    Anyway, thanks again for your messages and fir the information in your fulsome profile. Xx

  • I think for me I probably felt a little different to you, as my cancer had recurred so quickly after supposedly successful first line treatment. But adenocarcinoma can be sneaky, and scans cannot pick up microscopic cells left after treatment. I was unlucky in that my cancer grew back, but lucky in that it remained contained.

    This is very expensive surgery, so is offered when there is a very good chance of a successful outcome. It’s not a guarantee of anything, but it’s a good chance and for me that was enough. I didn’t relish the alternative. 

    It’s good to have great confidence in your surgeon-you are literally putting your life in their hands and you need to feel comfortable with that. 

    I hope you’ll let us know how your appointment goes and what your next steps are. I always try to be honest about my own experience, but I hope never to scare people unnecessarily. 

    Sarah xx


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  • Hi Sarah - just to update you…..I saw the consultant yesterday and we’re going for an urgent MRI to check if anything has changed, if steady then a laparoscopic LLETZ to hopefully improve the view from the one I had before Christmas and allow him to safely get a biopsy this time…. So more frustrating wait8ng, but it seems a sensible way forward. 
    Thanks Carry

  • Hi  

    More waiting is very frustrating, but they will need all the information possible before going further so it’s definitely sensible. Doesn’t help the stress levels though! It’s an absolutely massive jump to a pelvic exenteration, so they need to be certain that this is the right course of action and you don’t actually have a diagnosis yet of any type of cancer as I understand it. 

    Hope you get the mri soon and they can then get a biopsy successfully completed to give you answers. You’ve certainly been waiting a long time.

    Sarah xx


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  • Hi Sarah - belated reply, but just to tie up the ends so you know what happened.

    I had a TPE 4 months ago and am learning to live with my two new stomas,  TweedleWee and TweedleDump. The op margins were well clear, so that’s very encouraging. I’m feeling pretty good and am managing all the changes as best as I can. At times it’s tough going through this on my own at home, but I have loads of friends and family who boost me any time I’m a bit blue ( which thankfully isn’t very often). I tried hitting a few golf balls, but my abdominals weren’t up to it, so I’ve put my clubs away fir a few more months and console myself with a trip to the golf course on ladies day and providing biscuits or hot sausage rolls fir the ladies as they come past…..works well for them and me.

    As you warned, it is huge surgery, both mentally and physically, but I think I’m doing pretty well and am nearly back to normal already….apart from golf..Many thanks for your support several months ago, and all the best fir the future.

  • Hi  

    It’s so good to hear from you with your update! 4 months out and feeling nearly back to normal is a tremendous achievement. Even though the golf is on hold you can hopefully get back to that in time. I found recovery wasn’t linear, so it was a bit up and down especially in the early days but I had been warned not to expect too much too soon so I accepted it. 

    Good stoma names by the way. Lots of people name them but I’ve not seen anyone come up with your ones before. Hopefully they have settled down and you are into the daily routine of managing them. 

    I’m so glad you came back to let me know how things went-I really appreciate that, as often people move away from the group without us knowing what happened.

    I wish you all the best and hope it’s not too long before you’re out on the course swinging your clubs again!

    Sarah xx


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