Recovering from radical hysterectomy but have many questions

All my smears have been fine up until my last one in August 2019. I’m 35, had my youngest child November 2014 and had a smear after him. It came back normal. Then the one in August came back abnormal. I had a colposcopy and was told it’s rare it won’t be cancer. Low and behold the biopsy showed it was cancer 1B1. Early stages but still a shock. Mri showed nothing else but the treatment advised was radical hysterectomy, ovaries, groin nodes, shortened vagina- everything. Early November (my sons bday) I had my operation. I’ve had a fair few ups and downs from the abdominal surgery but 5 weeks on I’m settling and getting there. And thankfully all clear. What I can’t understand is why all my smears and I kept up to date were fine and then suddenly this one was abnormal but not only abnormal (precancerous) but cancerous. I’ve read it takes many years for precancerous to change to cancerous. Has anyone else had this experience. No ‘warning’ as such, gone from normal to cancerous so quickly? I’m grateful it was found and I have been treated very quickly and so very grateful the nodes came back all clear. But I can’t help but think something was missed in previous smears? Am I over thinking this?
Thanks
Xx

1 Like

Hi 

i had the same thing all my smear were up to date and my first smear after I gave birth to my little girl showed CIN3 I had a LLETZ were it was found to have stage 1 cancer of the cervix and glands. I felt exactly the same as you surely they must have missed something and had been checked out at gynaecologist in hospital years ago because I had abnormal bleeding and so understand you 'over thinking it'. Like you I just try to think that I'm grateful they found it early as without the smears it wouldn't have been found at an early stage to allow it to be treatable. But I completely appreciate your confusion over it all though as I thought exactly the same. 

Hope you doing as well as you can be physically and emotionally. Take care of yourself and I think when you been through all this there is a tendency to 'overthink' and question everything as you process it all. 

Thank you for your reassurance and sharing you've had a very similar experience. I had no other signs just went for routine smear. The one after my child came back fine then 3 years later abnormal. Still struggling as I feel the precancerous part seems to be missing but I suppose it all happens differently and each case is individual. I'm doing ok thank you, physically have settled down now and emotionally other than over thinking I'm doing well. 
hope you're well and everything has been ok since. 
thanks for replying- I appreciate it

x

Hello, I was diagnosed 1a1 in September this year, had modified radical hysterectomy and given the all clear in November - now 5 weeks from the operation and doing well. I had never had an abnormal smear either (I’m 51), and had kept up to date with the smears for decades. I wonder if it’s the new cervical screening test (not the old Pap smear) that has been more recently introduced that picks up on more abnormalities now? I’m in Australia and my last smear in early 2017 was the Pap smear, but in September this year it was the new cervical screening test which tests for the HPV virus too. My CC was an adenocarcimona which is harder to pick up in the early stages with the Pap smear as it’s higher up in the cervix, but it seems to have been picked up by this newer test. Not sure what the situation is in the UK but I’m very grateful that in Oz this new test did what is was supposed to for me! Good luck with your recovery!

Yes same form of cancer. I'm not sure about new and old tests. Is have to look into it. If it's the same here then makes sense and again is reassuring to know similar situation. I've rang the nurse and having an appt organised just to talk to the consultant again just to ask some qs because when it's all happening you don't really have time to think it's only afterwards things start to occur. I'm sure everything has been done I just want peace of mind. Great to hear you got the all clear too. Like you say grateful it's been picked up and quickly treated 

HPV first testing is being rolled out in the uk in regions. I am 55 and have also always had normal smears until my last one. Have just had repeat colposcopy & test of cure screening to see whether everything has gone back to normal. Now just have to wait 3 weeks for results! The information pages on Jo's explain it well or you could phone the helpline for more information. Hope this helps.

A

Hiya just wanted to say I have had exactly the same and the same questions!

Went for a routine smear in August which came back with abnormal cells. Didn't think anything of it as all the advice was that it was really common (and since talking about it lots of friends have had the same). Had LLETZ treatment in September and when the results came back a month later it was an absolute bombshell  - it was cancer (stage 1b1).  How! So many questions came to mind. All the information said it takes 10 to 20 years for abnormal cells to develop into cancer, I'm 32 and this was my 3rd smear so where had it suddenly come from? Why me? I'd had no symptoms whatsoever, can this even be correct? Why does such a small amount of cancer require such drastic treatment. 

Anyway, I had a radical hysterectomy on 3rd December so am in early stages of recovery. Just focusing that this will sort it all out and in 12months time my scar will be the only reminder. 

Hope you are doing ok.

Sarah x

Your situation is exactly the same. Hope you get your results soon and all is ok. Really hope your recovery is going ok I struggled a lot the first 3 weeks with bowel and bladder issues. After several visits to docs medication and daily lactalose is all settled down. Keep it touch re your results and recovery xx

i spoke with my gp today she said her and other docs struggled to understand how one type of test was better than the other the smear or the screening. One will find one thing the other with find another thing but both do the same job and discover if things aren't right. This is what she told me, and so reassured the fact it's a smear that nothing previously had been missed and lucky it was early stages. I can only go on what I was told ( I also read about the rolling out in the uk) but like I say she reassured me nothing had been missed before (I know you can choose for this to be investigated which I may still do) 

 

it's rubbish we're all going through this or have been through this, it's not good it's so common but like I've said has helped me accept that it has happened this way and I've really appreciated been able to come ask questions and read others experiences here 

xx

Good luck with your results x

Hi Mel T, your very simalar to myself age wise and history wise , i was given a radical hysterectomy last yr, i had an abmormal smear was told was nothing to worry about went for a colposcopy and also turned out to be cancer , i had a rare cancer called adenocarcinoma that grows higher in the cervix and isnt always picked up on smears this was the explanation given to me for it not been picked up on the smear , so maybe your situation was a little similar to mine ? I hope you get the answers and some reassurance, wishing you all the best,  melissa x x

Yes same form of cancer

 I feel a bit better about the situation now. Thoughts that run through my mind are that I haven't got a choice regarding more children that hits me every now and then regardless of whether we would have had more and other times I'm  being quite controlling and then emotional over things. Not sure if this is hormones or what or if I just need to get back to work and carry on with normal life. Nobody really tells you how to handle it after. I suppose it's individual. Out of interest when did people return to work? 
thanks in advance

 many thanks for your reply Melissa x

Happy new year! In answer to your question about return to work, my surgeon said 6-8 week recovery so I took the 8 weeks and will be going back to work in a week. I’m glad I took the extra time as although the physical recovery was quick and fine, I just get really tired. But then I’m older than you! I think maybe the best thing is to follow your doc’s advice and also be nice to yourself. Wishing you all the best.

Many thanks x 

Still chasing up results from previous smears. I asked the for an audit of my previous smears and still waiting as there is a nation wide issue with looking into the 2013 results due to the technological changes. Did you ever have an audit done?
Hope you’re well

X

Hi, I’m just reading through posts having been diagnosed with cervical cancer a couple of days ago. I have never missed a smear and my pre cancerous stage was not picked up. I went straight from an abnormal smear, to lletz which detected cancer. Im now waiting for a scan and treatment plan, but am expecting a hysterectomy. I’m 40, no kids. I’m most worried about my sex life and bladder! I’ve always been so averse to catheterisation and am reading women having to self catheterise, ongoing! Am also very worried about orgasm being affected! Can anyone give me any advice? I don’t really know what to expect.

Hi Gina123,
The immediate effects after the hysterectomy did give me bladder issues, the catheter I came home with after the operation I had to wear for a week gave me an infection. I could feel it wasn’t right but the community nurses were exceptionally busy the night I needed them to come out to me and so held on with it for another two days but shouldnt have done. It took about 3/4 weeks for my bladder to settle and it’s a case of getting used to just sitting a bit longer and make sure you’ve emptied your bladder completely now. But other than that all waterworks have gone back to normal. No problems there and haven’t had to have any other catheters.

I had a radical hysterectomy so my ovaries were taken too. I’ve got to say I wish I hadn’t had them taken out. I didn’t really think about anything beyond surgery just took the doctors advice. I’m on HRT and not suffering with hot sweats or anything like that. But the natural production of hormones aren’t there and so I would say my libido is lower than it was (mine wasn’t particularly high anyway)- dryness has occurred earlier than it naturally would have. Lube helps. Can still orgasm fine.

Hope this answers some of your worries/questions.

Hope all goes ok
Take care
Mel

1 Like

Thanks so much Mel, that is helpful. I’ve been reading other forums where women have also said that in hindsight they would have chosen to keep one or both ovaries. I’ve also read that trialling different doses and brands of HRT is important, as js testosterone. I hope you find a level which works for you. I’m glad to hear your bladder has now recovered normal function! I hope you are recovering well and best wishes to you for the future x

No problems.
Feel free to message anytime
Hope you’re not waiting too long
Look after yourself xx

1 Like

Crazy to read back on when I first posted on here for this thread. Back in dec 19. Confused by the fact that smears had been fine and then suddenly it wasn’t. Well… after a long time, 2 years and 3 months, 2 complaints to PALS, several conversations with my cancer nurse, several times asking at every check up, and 2 conversations with another consultant. The audit on my smears in 2013 and 2016 have come back with the results that both my 2013 and 2016 smears were abnormal and this had been missed. I have an appointment with my gynaecologist on Monday and have to wait for an official report. But I’m glad I chased it! Got told not to worry, got told by gp all would have been ok on the others and totally not true!! If you’re wanting answers and you’re questioning things. Then don’t be afraid to chase things up and ask!

1 Like

Hi Mel.T I have just been flicking through looking for information on the hospital reviews as I have received a letter asking me to attend an appointment as the review of my smears has been carried out. Can I ask at what stage your at now with them. Did u attend a meeting and what’s the next step thanks jo x