Abdominal Radical Hysterectomy and Cervical Cancer – Amy’s Story

Hi, I am 43 and live in South Wales, I have 2 children 16 and 22, a hubby and my 2 dogs 🙂 My story started late in November 2012, when I decided to make an appointment at our local surgery to have my Mirena Coil changed, as I was there and my smear was due within the nest few months, decided to get it done at the same time (hating the speculum only doing it once seemed like a good idea). This is where my head spinning journey started.

I had the procedure done on the 19th November, within a week I had a call from the hospital saying I had to go to the well woman clinic at the Royal Gwent Hospital for a colposcopy on the 29th for check up and possible treatment for CIN3 (which meant nothing to me at the time). Dutifully I turned up for the appointment, making sure I had a driver with me as they said that if I had treatment following the examination then it would be wise to have someone with me. SO I sat in the waiting room feeling, nervous/scared/nauseous as to what to expect, I am not very good at these things at the best of times. The staff were fantastic and the Gynae Specialist drew me a graph showing me where I was in the CIN3/Cervical Cancer scale, following the smear results, this alone was a lot to take in before having a test done, what followed was a bit more of a shock.

I laid there dreading the speculum as normal, but she was amazing, hardly felt it at all, unlike the doctors where I nearly hit the roof in pain. She just sat there looking at the screen on my left, and said “I think we had better show her what’s going on with this”, and not knowing what to expect.

I looked at the screen, “is that a sore patch” I said looking puzzled at a small reddened square amongst a sea of whitish flesh, ( and inch square at the top right of the whole screen).

“No! that is the only healthy bit” the nurse said. With that my heart dropped and went very quiet and apparently extremely pale. She told me they were taking a couple of biopsies, and I was left to recover and get dressed in my own time. I sat in the chair and she explained that it was not looking brilliant, and she would ring me as soon as the results were back. I went home in a daze, and my hubby was looking at me blankly not quite sure how to react.

I had a call asking if I could pop down on the 29th for a meeting about the results. With that she explained that I needed a Knife Cone Biopsy and she was hoping to remove the CIN3 during this procedure. I was told that this had to be done before Christmas! I was immediately given the 19th Dec and told what to bring with me. On the day of the procedure they were fantastic, only slight cramping, but same rules, no heavy lifting and no work for weeks as I work with challenging behaviour. I was a good girl and followed the rules hoping that was it.

Nope, got called back in for results on the 3rd of January. I was told that it was Cervical Cancer minimum 1B1/2 but needed a MRi then and EUA the following week. My head was still spinning from the original diagnosis, so this one really knocked me off my feet. I had the tests done, and it was decided that due to a tumor higher up in the cervix, and risk of presence in glands etc, a radical Hysterectomy would be on the cards and possible follow up treatment depending on results following that.

Well I had the radical hysterectomy on the 4th February in Llandough Hospital, an amazing place where nothing is too much trouble and no question is stupid. I was given my own Cancer Specialist nurse that I could call to ask anything, and she explained the journey and how it would start. It is now coming up 3 weeks, post op, and still sore and very stiff, system still feels like it has been hit by a truck as to be expected as extra margins had to be taken during the operation. Glad to get the catheter and staples out and be able to move more freely. Walking round and doing extremely light chores but system still waiting to kick in and work properly. As they took everything out I now wait for the HRT side of it.

My next part of the journey will start when I get the results on the 27th Feb (gulp) then I will know if chemo/radiation is necessary on top of what has occurred so far. I would like to say that friends and family have been supportive, but no! they are more scared of cancer than I am and just don’t know how to talk to me. I can understand this, and if you are in the same position try not to judge them too harshly for it. I am now at the Cancer Rage stage and am a little grumpy and bored to say the least lol. I am speaking to them next week about counselling and support that is available. I didn’t realise just how much you need an ear to whisper into at times like this.

At the end of the day, my new motto is Fight Like Girl! and I intend getting over the radical hysterectomy and kicking my cancer’s behind! I wish everyone facing a Hysterectomy good luck and fast healing.

Remember – Don’t be afraid to ask questions- your not alone (even if it can feel like it) – Try to be positive – Follow the guidelines, it hurts if you don’t hahahaha

Hugs x
Amy K

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10 comments

  1. I am going through almost identical journey at the moment, but had had total hip replacement done after the biopsy as they didn’t think it was going to be a problem! Came back positive so now having to wait six weeks in between ops before go in for the hysterectomy. You are right about friends and family – they just don’t know what to say. I am really lucky with our hospital as given specialist nurse contact for both myself and partner since diagnosis and she will answer any questions even if not medical ones.

  2. Hi Amy your story is so similar to
    Mine but I am waiting the outcome of the knife cone biopsy. Been told I will need a hysterectomy and possible radical. I wanted to know if they started you on hrt treatment. I wanted to say thank you for sharing your story as it has inspired me to keep going

  3. Hiya girls,
    Thank you for the wonderful comments above 🙂 Since the good news of being clear of the cancer since surgery, and them telling me that they took soo much out that recovery time seems like forever, I have been generally happy smiley as normal.

    some extras I have learnt since the first chapters……
    Dont underestimate the damage a nasty cough/flu can do to recovery time 🙂 make sure you look into HRT before it hits you in the face lol, make sure your husband/family knows how to cook more than sausages hahahahahahaha.

    GOOD LUCK TO ALL OF YOU STILL UNDER TREATMENT, AND HUGE WELL DONT TO ALL THAT HAVE HAD FAB RESULTS AND ARE NOW CLEAR XXXXXXXXXX HANG ON IN THERE XXXXXXXXXXXXX

  4. Thank you for sharing your story,it was a reassuring read as my story is pretty much the same. Its great to hear your margins are good and no more treatment required.

    I am a week post op and a little shocked at how painful it all is.I had lymph nodes removed from my pelvic area and I am getting some really bad shooting pains in that area.
    I am finding it very difficult sleeping and getting into a comfortable position. I know its early days and I am trying to be patient but it isn’t a strong point of mine!!

    Wishing you a speedy recovery.

  5. Hi Amy,
    I have just read your story. I know exactly how you feel. I am also from South Wales and found a large lump on the left side of my abdomen at the beginning of December 2012. I was immediately referred for an USC ( urgent suspected cancer) scan and appointment with an Oncologist. Although blood tests for ovarian cancer were negative it was still unclear what the 15cm mass was on my ovary. I had a total abdominal hysterectomy and removal of the omentium on the 13th February. I had a phone call on Friday giving me the all clear from cancer. I am very lucky and feel that I have been given a second chance at life. Although I am thrilled at this news, I think my hormones are affecting my emotions and I just feel shell shocked at the turmoil that I have been through over the last few months.
    I totally understand what you are going through and I very much hope you have good results. Take care of yourself and feel free to chat on here.
    Lots of hugs
    Ellie

  6. Hi Amy,
    Your story is very inspiring. I know what you mean about everyone around you being scared.
    I think when its our own cancer we deal with it like its just another obstacle but the loved ones around us view it in a very different way.
    I had a full hysterectomy based on the fact that I was growing a very large cyst (19cm in diameter)on my ovary and I was referred to oncology. I am lucky though as mine turned out to be benign. But until the histology was done it was a very unnerving time indeed.
    How are you now as your results were due on 27th?
    Big hug
    Louise x

  7. Amy is an inspiration to us all, she is brave and positive and also full of humour, which I believe helps us all at this time. God bless her .xxxx

  8. Following results appointment now am Cervical Cancer gone with margins yayyyyyyyy no Chemo/Rads

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