I recently got diagnosed with stage 1a, and had the LLETZ procedure and then a biopsy that was clear.
My concern is that if I had finished my family, I’d be offered a full hysterectomy but as I’m 30 and without kids, I’m getting treated conservatively. Which, yes its great! Obviously its such an early stage and I’m very lucky. I just can’t help but worry I get sick and would have been better getting my cervix removed, which would have been the next step if my second biopsy showed anything.
I’d like the option of kids but its not the be all and end all for me, and I’d still be able to have kids if all goes well by removing my cervix. The thought of getting sick, and not having kids anyway, which might happen, makes me want to vomit
I don’t even know what I’m asking… I guess if anyone has been in a similar situation?
Thanks in advance! These posts are super helpful
Hi AMac, I had something similar to you last year. I was diagnosed with stage 1a1 cancer following a lletz procedure. I had another lletz to make sure everything was removed and was then told my treatment was complete. I worried that it wasn’t enough and felt at the time that I should have a hysterectomy. The team never offered a hysterectomy as they said the treatment I had was enough. I can empathize with how you feel
However, the medical teams know what they are doing and over time I think you will feel more confident in the treatment you have had. Just give it time and you will feel better about it. Xx
Hey, thanks so much for replying!
Sorry you felt the same stress, and I’m guessing you are feeling better with things now?
I’ve considered a full hysterectomy, I’ve went through every scenario in my head hah! But I feel like removing my cervix is kinda the best of both, reduces the chance of reoccurrence, and also lets me have kids if thats the way things work out.
My consultant is lovely and I have a chat with him next week about it, but as a nurse, it’s in me to question everything haha.
I just can’t get it off my mind. I’m on and off bleeding, had the worst cramps ever last week (likely due to the fact I came off contraception just before my treatments in january so my periods have been messed up) but it all just made me anxious, which isnt usually a trait of mine, and I don’t fancy second guessing every uncomfortable period I have, or being massively pissed off if I do get sick urgh it’s stressful huh?
Pretty stressful yes! I had counseling which helped, I would recommend it.
A couple of things helped put my mind at ease. Firstly when my consultant said, ’ you haven’t had a clinical cancer, you have had a micro invasion of cancer cells.’ Made me realise I was lucky to have caught it at an early stage. Also, I spoke to Jo’s helpline and the advisor said that with a stage 1a1 diagnosis the medics will not be looking for a recurrence of cancer as there was no solid mass, it hadn’t had time to develop. They are looking to see if the HPV is still present and active, as this could lead to cell changes which might lead to cancer in the future. With thorough monitoring the chances of cancer developing now are very, very slim. The most important thing is you keep all your appointments and continue to be watched closely.
It’s difficult for me to comment, because I’m offering another perspective that is probably not terribly valid as I may be an unusual case… I had persistent CIN changes in my early 40s. I finished my family in my 20s, but my treatment was conservative. I had three procedures: 2 times of LLETZ but the cells kept returning and then a deep knife cone biopsy, after which I had a colposcopy which was clear. Eventually I went back to yearly, then 3 yearly, smears. All were negative. I never missed an appointment. 20 years later I find myself having pink discharge post-menopausally, sometimes with little clots like a mini-period. I also had a feeling of heaviness in my lower abdomen as if a period was coming. No other symptoms. My doctor thought it was partial prolapse, as my smears had been clear. Actually I had Stage 3 cancer, and it had spread to my para-aortic lymph nodes. I had chemo and radiotherapy and brachytherapy. I have been (fingers crossed - I have a post scan appointment next week) clear for a year. The treatment is brutal, but it’s designed to cure.
My gynaecologist concluded that there was too much scar tissue from my ops to detect the cancer and CIN changes with regular smears, and without colposcopy. I had not had a colposcopy for 20 years because of the clear smears, and HPV was not tested for at my last smear (I undoubtedly had it).
My advice? If one procedure, even two, removes the cells and you are checked regularly, you should be in safe hands. Conservative treatment when you have had three procedures, and one that leaves a lot of scarring, may be a mistake. Incidentally I was never offered a hysterectomy.
@Dreamland that’s really good to know, thanks for sharing. Yeah I’m definitely keen to do counselling, get my head around it all.
Thanks again, MASSIVELY appreciate your time
@Jacks133 aw I’m sorry to hear you’ve been on such a rollercoaster, but glad to hear you’ve finished treament.
I’ve had 2 treatments, but just feel so lucky to have had it at such an early stage, that I want to keep it that way and do everything to avoid it coming back.
The scarring is interesting, I’d never considered that when people have repeated treatments. Part of my concern is the biopsy is so localised, what if the area they take it from is clear and theres that one wee bugger of a cell waiting beside it to multiple
I’ll keep you in my thoughts over the next week while you wait for your results
I was staged 1b1, had my cervix removed, and then had two successful pregnancies, with Caesarean deliveries. I was very sure I wanted a family, so a hysterectomy would have been very traumatic for me. Having said that, it was all traumatic enough, since I still shudder at every little symptom suggesting a recurrence! Bottom line - you will worry either way… Cancer casts a long shadow, though catching it so early is such great news. Have you spoken to your care team about whether a hysterectomy eliminates the possibility of a recurrence? I am not sure it does, necessarily (but am speaking from a place of ignorance).
@Consuelo congrats on the two munchkins! And thanks for replying.
Yeah I’ll definitely worry either way, and for now I don’t want a full hysterectomy, even though I’ve toyed with the idea.
I’ve got an appintment with my consultant next week so I’ll chat with him then, and I’ve a friend / colleague who is a consultant and has a background in gynae so gonna discuss it with her too.
Nice friends you have! I’d like me one of those, so I can pester them with questions
I got lucky in several ways… and highly aware of it
Amac, may I ask what your symptoms were, if any, prior to the diagnosis? Thank you. x