First six month check-up after treatment?

So I just had some treatment on Monday - don’t actually know if it was cold coagulation or the laser as it was only explained that a layer around the biopsy site was being “burned” as a precaution because the biopsy appeared to remove all abnormal cells, but the results came back as CIN2 so they wanted to be sure and were taking extra precautions because I’m over 30…

Anyway, I was told it’d be 2/3 weeks to heal completely and then I’d be back in six months to check. So my question is, and maybe it’s obvious but I just want to be sure, does that mean I’ll just have to have a smear test/colposcopy at that point and then I’ll still have to wait however many weeks for results? I won’t actually know anything for sure other than how it looks at the six month appointment?

I just want to have a clear idea of what level of clarity I can expect then because I’ve not coped very well with this whole experience. I don’t think I’d take any comfort from how anything looked because the smear that started all this “looked fine” and wasn’t and the first colposcopy looked “low level” and wasn’t.

Hi,
I had my six month follow up last week post cold coagulation treatment. Basically it’s a HPV test after six months. If you are HPV negative it isn’t tested for abnormal cells (I wish it was). If you are HPV positive it will be tested for abnormal cells. If you still have abnormal cells that means another colposcopy to decide what further treatment is needed. The HPV test (smear test) results are taking approx 6 weeks at present. So basically you won’t know much after the six month follow up appointment it’s a case of waiting for the results. In my experience my first colposcopy and dyes didn’t show any abnormalities for me because my abnormal cells were deep inside the cervix. It was the biopsy that led to my diagnosis. I was reassured the first day that everything looked normal and the dyes didn’t highlight any abnormal areas but I’ve learned not to get your hopes up just because it looks normal superficially. I got my hopes up and when the biopsies came back as CIN 3 changes not only was I shocked but I couldn’t understand why I was told everything looked normal at the appointment. Then I learned that my abnormal cells were deep inside the cervix and that’s why superficially everything appeared normal.

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Hey, I was just wondering if you’ve had your results yet? I hope it’s going well. x

Hi Lynnie1,
Thanks for asking. I got my results at the end of last week. I felt sick opening the letter which read HPV negative. I know that this is great news but I am still none the wiser if my abnormal cells are gone. That scares me. The six month test of cure is only a HPV test and if you are HPV negative your cells are not checked. If you are HPV positive the cells are checked. I really wish that they would at least check the cells for people who have had a history of abnormal cells. I know if you are HPV negative you are unlikely to develop cervical cancer but I would like to know my abnormal CIN 3 cells that I had are fully gone. I know I should be jumping around with delight that I am HPV negative and I know people are going through such tough times but it’s difficult not to wonder about my abnormal cells. Also as I had cold coagulation treatment you don’t really have any proof the treatment has got them all, unlike the Lletz treatment where they analyse the sample for clear margins. Private smear tests are only screening for HPV also so I’m looking at my options.

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Firstly, huge congratulations on getting a HPV negative result. That’s amazing news. I can completely understand your concerns though, perhaps try and get an appointment so it can be explained. I’m not medically trained at all but is it the case that because the abnormal cells are caused by HPV you wouldn’t test negative if any were still there? This is a question, not a statement, as I genuinely don’t know if it’s true of not?

Can I ask, other than the treatment, did you do anything to clear HPV? x

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I wish results didn’t just arrive in the post because whatever the results are you will have so many questions and I think everyone tends to panic and think they have cancer. My story is a bit more unusual in that I was never actually diagnosed as HPV positive. I went for my routine smear test last November and the GP said my cervix was inflamed, she suspected it was an ectropion as I’m on the pill and she booked me in for a colposcopy within 2 weeks so my smear test didn’t actually proceed. Apparently if your cervix is inflamed or bleeding the smear test can’t be read properly anyway. At colposcopy they examined me and put on the dyes and said everything looked normal other than ectropion (due to being on the pill) but only because they had no smear test to go by they did the biopsy which resulted in the fright of my life, CIN3 and the need for treatment.

I had Cold Coagulation in January 2021 and my test of cure in July 2021 which was just a HPV test and I’m HPV negative but who knows when I was positive. I didn’t do anything different to clear HPV. I’m fit and healthy with no medical conditions and I don’t smoke which is a big risk factor and I eat well. I look after myself and never missed a smear test. Being so healthy made the diagnosis of CIN 3 more daunting.

I just worry because my abnormal cells were so deep even the colposcopy didn’t highlight them, it was only the biopsy which was done by chance. Also a smear test doesn’t go as deep as a biopsy. I wonder if you get HPV and it causes abnormal cells, when the HPV clears up with or without treatment do the abnormal cells automatically resolve. There are so many questions about HPV but I still think anyone who has a history of abnormal cells should be tested for HPV and have their cells put under a microscope at cervical screening.

How’s everything going with you?

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Ah I see your point, so you don’t know if you would have definitely tested positive 6 months ago. Thank goodness you were sent for the colposcopy. My cells were the same, high up in the cervix, in fact I had CGIN too. My smear showed low grade changes and that’s what the consultant thought at the colposcopy initially too. First biopsy showed CGIN (glandular changes) and second biopsy, following a Lletz, also showed an area of CIN 3.
I’m due to see my consultant again on the 20th, he is recommending a hysterectomy, for the CGIN. I have lots more questions before I go ahead although I have two children so my priority is to stay healthy for them.

I hope you get the answers you need soon. x

You’ve had a lot on your plate being told low grade changes first then Lletz and then being recommended a hysterectomy. What an emotional rollercoaster you must be going through. Good luck with your decision making. I hope it all works out for you.

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Thank you. It has been a lot to take in although I know I’ve been lucky as it could have been a lot worse. Still I never expected a hysterectomy to be on the cards when I went for my routine smear test in May. I feel because the consultant is recommending it this is the way I should go but I’m scared of the operation and the risks of that too. I’m also nervous of the covid numbers in my area. My local hospital doesn’t have the best reputation, it’s under a lot of pressure at the moment. I lost my dad due to him picking up an infection in this hospital 18 months ago. Although I won’t be having my operation there…. if I were to have any issues after surgery this is where I would end up. I know, I’m letting my anxieties get the better of me. I’ve not even got a date yet and I’m already worried about complications that I may or may not have. I think I just feel at every stage of the process everything was played down as nothing to worry about so my expectations were not managed at all.

Yeah it’s crazy how everything is played down and you are just expected to be ok. We all go for these routine smear tests assuming we will be ok especially if we have no symptoms and then suddenly you are told everything is not ok. In my case no one picks up the phone to check are you ok or check if you understand what the results mean and what treatments are available. Getting a letter in the post telling you your results is not nice and trying to get hold of anyone to ask questions is difficult which makes us even more anxious. Feeling lucky that cells are found and can be treated is not an immediate feeling I had I must say, but having time to dwell on everything I am grateful. There are plenty of women on this forum who are going through a tough time that would be grateful to be in our shoes. It’s normal for you to be nervous having surgery, who wouldn’t be but if it means your abnormal cells are all gone then it will be worth it and hopefully you won’t need to go to your local hospital. Fingers crossed. Until you get a date, treat yourself and do nice things and look forward to the day when all of this is behind you.

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