Hello……my journey one month post op

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I lost my dad aged 54 and all my grandparents to cancer and have had a lifelong fear of it. 
Thirty years later and aged 59 I had one spot of post menopausal bleeding May bank holiday weekend this year. On the Tuesday I went to see the dr and was put on the 2 weeks cancer pathway. No more bleeding so I was convinced all was ok. Within days I saw the consultant and had my first examination. As I live 5 minutes walk from the hospital and am retired I agreed to short notice appointments. As I was leaving the hospital I had a phone call asking me to go back the following day for an internal scan. Then another call later that week asking me to go for a hysteroscopy. A month later at the end of June I got told all results were clear and they were taking me off the pathway. I asked about a hysterectomy ( my womb is full of large fibroids) but was told that was over treatment and not needed. We arranged to go away to celebrate but on day one my consultant rang to say she wasn’t happy with the results from two clear biopsies and wanted me to return for an day patient hysteroscopy. I wasn’t bleeding and was very confused but agreed to go back to have two polyps removed which had been seen. The surgeon was very reassuring and told me all had gone well and that should sort things out and they would do a third biopsy. This was now the beginning of August and again we had a couple of days break. On the day we arrived I had a phone call from the hospital saying the consultant wanted to see me . I freaked I kept being told I was clear then as soon as I started to relax I would get a phone call to return. 
On 23rd August I was told those words you have cancer. I was assigned a cancer nurse and told I needed a MRI scan to see if it had spread. How could it all have changed within two weeks from two clear biopsies to being told I had cancer and it could’ve spread. 
It was hard sharing it with my sons who were the same age as my sister and I when dad was diagnosed. But they were extremely stoic and concluded if I’d had two negative biopsies it couldn’t be that bad. I still insisted on looking after my 2 year grandson twice a week during it all as he was my normality and my comfort. My husband was my shoulder to cry on once a week but we never discussed details. My sister organised practicalities and my glass half empty mum became the most optimistic person I knew. 
Thankfully the MRI showed that the cancer hadn’t spread and I was booked in for a full Robotic Hysterectomy at the beginning of October. Although the results were good I still didn’t want to be positive due the previous phone calls. 
My consultant performed the hysterectomy and it took 5 hours instead of the 2 expected due to my womb being so large from the fibroids it tore the vagina on the way out and I lost a lot of blood and clots. I didn’t come out of recovery until midnight and I was discharged the following day. 

After 2 weeks I was able to look after my grandson again and all my wounds are healing very well. Last week I was given the excellent news it was stage 1a and no further treatment was needed. I cried with relief. A week later I still feel numb….cautiously relieved but numb. Am I thankful- yes definitely 100%. Do I want to go celebrate? Not really. I feel like physically I’m healing but emotionally there’s still a long way to go. Is this normal? 
I’m so grateful I noticed it early- that the consultant followed her instinct that something was wrong- that it hadn’t spread- that she persevered with the robotic surgery when it was difficult so that I could have a quicker recovery. But I just feel my mind is so overloaded from the last 6 months that I can’t celebrate. I’ve booked a months holiday in January but I have a phone call follow up 3 days before and already I’m thinking…what if they phone me again whilst I’m away …

As I’m writing this I’m beginning to digest it was quite a traumatic 6 months but I’m just wondering if anybody went through anything similar. Thank you

  • Hi there, sorry you find yourself on this journey but welcome to this lovely supporting group, we all understand what you are going through.  My journey began with a  post menopausal bleed when I was 58, two years after my last period. Mine lasted a few days and was like a mini period, I  even had achy breasts! I  was on holiday in Spain  when it happened but saw my gp as soon as I got home, though the bleeding had stopped. I was put straight on the  2 week pathway and had a  ultrasound and hystoscapthy within 3 weeks,  following the hystoscapthy I was diagnosed with a small polyp. This was removed again by hystoscapthy about a month later, the doctor performing this said he didn't think it was anything to worry about and i woulg receive the results in the post in around 6weeks. After only about a week I received an appointment in the post with a  different consultant, as I  was busy on the day of the appointment I tried to change it, but they said it was urgent and I  really had to take it, this is when I  got really worried!  At the appointment I  was told straightaway it was cancer grade 1, I was so shocked and don't think I will ever forget how I felt, luckily my husband was with me as I  was numb. Later that week  I had my MRI scan, then at my next appointment with the consultant a couple of weeks later was told it looked like it was stage 1A,  but this couldn't be confirmed until  after my hysterectomy, this was a the beginning of August  2019, by keyhole and just the night in hospital. Around 10 days after I got a call from my CNS to confirm stage 1A garde 1 and no further treatment required.  I  was relieved but my mind was still in a bit of a whirl! 6 weeks later I had my follow up and put onto the patient initiated follow up. I  try not to worry about any little niggle but its hard.I  have found this group a great help and check in regularly. 

    Take care.

    Carolina61
  • Hi and welcome to our spot in the Online Community. I suppose when you think about it a biopsy is taking a tiny amount of tissue in random places and the odds about them missing something might be quite high. Fibroids play a big part in making life difficult, I myself didn't have any, and again the odds of them getting in the way must make life difficult.

    Good to hear that despite the fibroids fighting back your surgery went well and you healed up quickly. The the good news, no further treatment is needed! Strangely few ladies here seem to go out and celebrate - the very fact you've had an unexpected cancer diagnosis, had the op and now all's well seems to keep you in a numb type of limbo - did all that really happen to me??

    I'm now a year on from my hysterectomy and I had 3 x brachytherapy sessions. I still think it was a surreal experience especially as it was in the middle of lockdown & I had to go for every scan and test alone. I wasn't told by a consultant face to face (mask to mask) I had cancer - it was a nurse on a phone call.

    It's always good to share experiences so drop in and chat whenever you want, there's always someone around to chat - we've a lovely group of ladies here.

    Sending hugs, Barb xx


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  • Thank you for your support 

  • Hi Ctj

    I had three hysteroscopies and all came back clear. My Consultant was still not happy and insisted on another under general anaesthetic. After three good results I just did not expect to be told that I had cancer. It knocked me for six. It will be two weeks tomorrow that I had my full hysterectomy and so I am still awaiting my results, I am so pleased that you are on the road to recovery. 
    Enjoy life to the full. Take care. Xx

  • Thank you. Hope you are recovering well and that you get your results soon. Wishing you luck. Please let me know how things go. X