I had a colposcopy/Lletz 3 wks ago following CIN3 result on my smear in Dec. Dr said everything looked ok, only a small amount of HPV she could see, cervix looked pink, fleshy and healthy before solution added. They didn’t think I’d be back.
Called back last wk and they’d found 2mm cancerous cells and they’re sending me for an MRI scan (27th Feb). Estimating me at 1a1. Told to expect surgery, most likely hysterectomy.
Having read some of the posts on here I’m wondering why I’m having an MRI when others seem to have another lletz then monitored? Is this procedure or do they suspect something more sinister behind the scenes?
Also, 1a1 seems to be being treated with lletz/cone biopsy - why wouldn’t this be offered first?
Is there any chance that they might’ve got it all at my first lletz and this is just precaution? Or am I getting my hopes up.
I would ask my nurse but she’s not v reassuring/comforting and just scares me again. I know I’m getting ahead of myself but these questions are swimming around and I’m hoping someone might be able to shed some light.
Your story is very similar to mine and try not to panic although I know it's easier said than done. I had an MRI which came back fine! I think procedure for mri varies from hospital to hospital. I was offered a cone biopsy or hysterectomy, it was my choice. I was offered this because the first LLetz had removed all the cancer but there were a few abnormal cells left, i.e unclear margins.
I opted for cone and results were fine, I'm fully recovered. Definitely ask about cone as it's less invasive, quicker to recover and has good success rate. Feel free to ask any more questions, happy to help where I can xx
Thanks Sara yours is exactly the kind of story I need to hear right now! I've just read your story and you were so much calmer than I've been! I hope I can relax a bit now.
I just wish my nurse was more supportive. I know she has to get the balance right between support and false hope but I can't help but think she could offer something to get me through to the scan results. I called her on Sat night after finding out Fri afternoon and left a voicemail (she's only Mon-Fri) and she didn't even call me back on Mon to see how I was! I don't want to speak to her again, I'd rather speak with you lovely ladies.
Hi elgreenery, treatment and scans etc really does seem to vary between hospitals. I was 1a1 and did have an mri but they said it's not always done, they gave it to me as reassurance due to how stressed I was. I just had the one pelvic mri and that was that but ive read of other 1a1 ladies on here have been told they'll have yearly mri's so really does seem to depend on the area youre in. Do you know if your cancer was squamous cell or adeno? Seems with the adeno cells which are glandular they sometimes offer hysterectomy instead of cone or some consultants just advise hysterectomy if you're older or completed your family so not worried about fertilty. And with 1a1 I think there's every chance it's already all been removed x
Hi Libby thanks for replying. I can't remember what Dr said. I think squamous but not sure if that's just sticking in my head from reading so much! We have a little boy already but were planning on trying for another this year. Nurse said they would take that into account but hysterectomy would be preferred as 'gold standard'. I asked about cone and she mentioned hysterectomy again. I don't think her bedside manner is great!
I'm so glad there are so positive stories I can focus on until I know what I'm dealing with. It definitely helps.
I'm similar to you as I was diagnosed with cancer in November after having LLETZ to treat CIN3. I had an MRI and was staged at 1b1 so I had a second LLETZ which showed that all the cancer and abnormal cells had been removed by the first LLETZ and then I had my lymph nodes removed and today found out that they were clear of cancer so now I'm in remission. I hope this makes you feel more positive :)
As well as LLETZ and cone biopsy, there is also an operation called a trachelectomy which is sometimes offered to people who want to try to preserve their fertility so you could ask them if you are eligible for that op at your next appointment.
Welcome to the forum :-) Sorry you have needed to find us but happy that you have because this is the very best place on the internet for you right now. It sounds to me very much as though your cancerous cells are adenocarcinoma which tends to start farther up inside the cervical canal than squamous cell which lies on the outer surface. Squamous is easy to get rid of with a couple of LLETZ but adenocarcinoma is better dealt with by hysterectomy.
If I have adeno would they be able to offer other treatment if I want another child? I'm mostly scared of chemo if I'm honest. I should check what I have but don't want to speak to the nurse again!! Thank you everyobr for responding.
I'm sure I've read others on here with 1a1 adeno that have been given cone biopsies or the trach surgery where they remove the cervix and can put a stitch in to hold a pregnancy. Did they mention chemo? You shouldn't need that with such an early stage x
Also maybe try speaking to your gp if your nurse is no good, all the information should have been sent to them and maybe they could sit and go through it with you x
As Libby says, if you are 1a1 you will be treated surgically so no need to worry about chemo just yet awhile (though it's not half as bad as you might think!). If you are keen to preserve fertility they may well be able to offer you just a cone biopsy or a trachelectomy but that is not a certainty.
I asked the nurse if the Dr would have said 1a1 if she thought it was likely it could be much worse and response was 'hmmm well that's why we need the scan you see' which I understand, but there was no 'hopefully not' or anything reassuring. I also said I was scared of chemo and again, no 'it's unlikely if Dr thinks only 1a1 but..' or any kind of comfort! I came away feeling like she knew something that she wasn't letting on and actually it's likely to be much worse somehow. She's never even assured me of how treatable it is!! The more I think about it the more annoyed I get with her. The Dr said all these things I think but speaking with her seems like a lifetime ago and passed in a blur!
Thank you :-) I expect that comes from having been a patient myself. It's a very tricky path to follow because we are all different and we all react differently. For example, had she said something positive and comforting helping you to believe that it won't turn out to be worse than a 1a1 but then it did turn out to be worse than a 1a1, some people might feel that she had lied to them, misled them. She has to be very careful indeed what she says to patients. I was an adenocarcinoma patient and my pre-surgery scans led the consultant to think I was a 1b, so I had a radical hysterectomy, but my surgery proved that the tumour was bigger than expected and so I was re-classified as a 2b and went on to have chemo-rads and brachy. Adenocarcinoma can be tricky like that. Nobody wants to frighten you but nobody wants to lull you into a false sense of security either.
Had the MRI today. Wasn't too bad although I was a bit anxious beforehand! I think more about what the scan represents than the scan itself. I know they'll be discussing results at the MDT on Fri but will my nurse have them before? I don't know whether to call her or when!
My nurse had the mri results before my follow up with the consultant so it's always worth calling. I know what you mean about what the scan represents, just not something you want to be happening to you. I really hope it all goes ok for you x
I would suggest that there is no earthly point in calling your nurse before the MDT meeting. The point in the process where it all becomes easier is when you are told your treatment plan - i.e. how & when the doctors propose to cure you. If you ask the nurse what the MRI shows I would imagine that she won't tell you, which will increase your anxiety. In the unlikely event that she does tell you, that still doesn't make it any better but could quite possibly make it worse. It is only when you are told your treatment plan together with its timing that everything will begin to settle down.
Thank you both. Think I'm just going to wait for them to call me. I'm expecting it to be early next wk asking me to come in to speak to them. Can't wait to get it all over with!
Hello all just to update you that one of the nurses rang me this aft (a different one!) and has confirmed 1a1 and it hasn't spread. I'm so relieved. I cried at my desk and finished early!! They're offering me a cone as a I want another child..i gather because there weren't clear margins/still abnormal cells present/just in case?! The nurse didn't know much, she said I'd be called next wk to arrange things and to ask then but I gather you ladies will probably know?
Also, anyone know how long I will need to wait before baby making? Obviously the healing time after the cone but do I have to wait for another smear or anything like that?
Ah that's brilliant news, I'm really pleased for you. I know the relief. I think once 1a1 is diagnosed it's normal to have another lletz/cone just to make sure of clear margins and remove any last precancerous cells. My cone biopsy came back completely normal, no cin or anything and I think that's quite common but good to be sure. I'm not sure how long before pregnancy but I think I've read stories on here where you definitely have to wait for a follow up clear smear so usually 6 months. I would probably wait that long at least just to make sure the cervix is fully healed x
