I’m so glad I have found this group during this tough time. You are all amazing and have been a fantastic source of information and support.
I’m looking for your advice and knowledge.
I’m planned for a simple hysterectomy, following clear margins from 2nd lletz for 1A1 adenocarcinoma, however I’m terrified. I’m worried about prolapse and lasting problems. On the other hand a prolapse is nothing compared to recurrence of cc.
My alternative is 6 monthly colposcopy for 5 years, with potentially repeated lletz as adenocarcinoma is harder to detect. At which point they would push for hysterectomy. I didn’t have any symptoms so I’m concerned that if it did reoccur then it would be a higher stage.
I’m aware that my issues pale into insignificance compared to others who have had much more aggressive treatment and side effects. I’ve been lucky really (if you know what I mean)
I would appreciate anyone’s experiences or advice. Thank you for your time.
Looks like we have swapped staging lol, I am now officially 1b1 as more malignacy was found in 2nd lletz however there are clear margins.
I was told yesterday by my nurse that I need a radical hysterectomy, date still to be confirmed. Like you I am terrified and thinking of not going ahead with it although not really got much choice. Surgery absolutely terrifies me and can’t help but think the worst. I had a complete breakdown yesterday when I was told although I already knew it was in the cards. I meet with my consultant on Wednesday.
Not sure what I would do if I got the option between this and colposcopy’s every 6 months but know I can’t take the stress of it all. I am a very anxious person and the thought of going through this every time would kill me.
I guess you just have to weigh out the pros and cons of both and base your decision on that. I am sure you will make the right decision for you x
Hi Lotty & Dee
I remember only too well how petrified I was of having the radical hysterectomy, thought it was the end of the world and knew it was classed as major surgery. I don't class myself as being a fit person so was totally amazed how well I quickly bounced back.
Lotty, not sure why you are really worried about a prolapse, it's unusual - unless you've heard differently? I do think we will all have little niggles after, but they soon pass. I had slight nerve damage to the top of my right thigh and it hurt to lift my leg a bit. It totally disappeared after 6 months.
I'm 14 months post op for 1b1 cervical adenocarcinoma and have now dropped to six monthly checks. It will be a slow 2 to 3 months then you'll both be back to your normal selves. Anything you want to ask and Im more than happy to help.
What ever you decide on which path to choose I wish you the very best
Hi Dee and Helen
Thank you so much for replying. See I’m sorry there was more malignancy which has bumped your staging! But delighted you have clear margins.
Helen I think I’m over thinking everything, it’s a 10% chance of prolapse,I’m not sure why I’ve worked myself up about it,I suspect it’s a knock on from everything over the last 7-8 weeks.
My rational part of my brain tells me to put my big girl pants on and get rid of this for good! I know that if I don’t have the hysterectomy and it came back I’d be raging with myself!
I really do appreciate all the kindness this forum offers xxxx
Good luck with your treatment Dee xx
I know the exact emotions you are going though Lotty. Your mind can run away with you, mine certainly did and it's perfectly normal. First I thought the cancer had gone further - pre MRI and then my thoughts went to will I survive the op as I knew I wasn't physically fit. We all go through these fears and all I can say is.... you will be just fine x If you feel the mental strain is too much your GP can give you diazepam to help you through the next weeks. I got some but didn't end up taking them. Before you know it this will be all over and with. I'm a year down the line and only seems like yesterday. In the scale of things the next couple of months seems long at the moment, but really isn't
Totally, it feels ages ago that I got my diagnosis but it was only 7-8 weeks ago, the wait for MRI and CT seemed to be forever,in reality only 3 weeks. It’s a tough time for sure and through the past 7-8 weeks I’ve just kept on going, going to work, looking after the house, almost pretending it’s not really happening. I even went for my MRI and CT. during a break at work (which I know sounds slightly crazy). It’s probably just catching up with me tbh.
Hi Lotty, You are doing really well, I couldn't bear the thought of work from the diagnosis to post op. I'm usually good at sticking my head in a bucket of sand, this floored me completely. At this moment it's like you are in some big ugly bubble of denial and absolute panick. This bubble bursts and you come out on top xxx
I am 2 weeks post op from a hysterectomy leaving my ovaries after a cervical cancer stage 1A1 .. thinking of you all ..
I didn’t have a smear for 10 years ( my own fault ) and then HPV was found and no abnormal cells so went on yearly smears and January this year abnormal cells found sent to colposcopy and cin3 was found to the outer cervix and stage 1a1 to the inside of the cervix which was advised after a biopsy ..
i cannot fault the care and information I have received .. the hysterectomy operation was no where near as bad as I was expecting and my recovery is going well
It’s good to hear you’re doing well. Was your cancer squamous or adenocarcinoma? I’m just being curious.
Hope your recovery continues to be good xxxx
I've been where you are so totally understand your fears and worries. I can say that I was very lucky, I had my hysterectomy nearly 5 years ago now and I have not had any problems since. For me, the fear of the ongoing smears and the waiting for results was the main factor in my decision making. I was only 34 at the time so it was a big decision to make.
Any questions then I'm happy to answer xx
I have just received a date for my op on 29/8, just next week. I’m anxious but I know it’s the right thing. I had some spotting and cervical discomfort last week which immediately made me worry and that confirmed that I needed to do this. I could not handle repetitive colposcopy and waiting for results.
Yes the worry and the stress on my mental health were worse for me than the treatment. It was literally on my mind morning, noon and night for at least 2 years. These days it's not so bad, I haven't really been on here for the past couple of years until a few days ago when I've started to worry again (hopefully it's nothing) I guess the fear never totally leaves you though.
The results from my histology after the op were completely negative and at that time I did worry if I had gone overkill with it, but like you said, if I didn't have the op and it came back I would have been raging with myself. I was petrified every day at that time.
Its good in a way your date has come around quickly, less time to worry and get yourself worked up over it. I hope that everything goes well for you. I would totally recommend getting some peppermint oil capsules to take after the surgery. I found the bloating and trapped air afterwards to be very uncomfortable (worse than the pain from the entry wounds) They do prescribe mintec if you ask and then I took the natural ones from Holland and Barrett as well x x x
Thank you! Will get some xxx