Hi everyone,
I've been browsing this forum for several weeks now and everyone's situation seems unique to them; there are no clear answers anywhere so I'm joining to say hi and sending everyone a hug. This is hard!
I'm 34. I attended my smear on January 17th. All smears to this have been clear. Out of the blue one morning two weeks later I got an email referring me to colposcopy for high grade dyskaryosis. That was the first I knew something was wrong. A week later my GP surgery called me to say I needed to go to colposcopy— I thanked her for the call but it was way too late coming.
The colposcopy happened in mid February, and two punch biopsies were taken. They didn't offer LLETZ there as a consultant wasn't available, but the colpo nurse told me she felt that visually it was most likely a CIN1 or CIN2. I asked if I could opt for treatment regardless and she wrote down my preference. Because she felt it was low grade but the original smear had thought high, it went to some forum for discussion (does anyone know what this forum is and who's on it?)
A week after colpo the nurse called me to say that it was in fact both 'severe and deeper than thought'. She told me I would go for LLETZ immediately and read out to me the potential side effects on the phone. The following day I got an online health referral for a cone biopsy. I called to ask why it had gone from LLETZ to cone, but nobody at the consultant's office has been able to tell me and the Colpo clinic haven't returned my call for two weeks. I thought this was really unhelpful.
I did my pre-surgical assessment for cone biopsy last Tuesday, with a phone follow up Friday. The same day I got a letter which said I have CGIN and now have a multi disciplinary team and that I'd be referred for surgery (I assume this is the surgery for the cone). I have no idea who's in a multidisciplinary team or what their jobs are.
Overall I'm really disappointed with the level of information and communication. Everyone says 'don't Google' but I did, and I'm delighted I did! Having read some medical papers and seen how this is dealt with in other countries, I feel like I finally at least understand what's going on and the different terms involved.
My cone biopsy is this coming Friday, but right now I'm trying to work out whether I can opt in to have a hysterectomy. I'm uncomfortable about the idea of waiting for this to potentially re-occur and I understand it's hard to find if and when it does. I also unfortunately come from a country where misdiagnoses of this have been very common and that puts me more on edge. Based on the NHS Management and referral guidelines for colposcopy, a hysterectomy is appropriate where conservative treatment isn't desired, so I plan to raise this with the consultant when I finally meet them.
The same NHS documentation says a punch biopsy isn't appropriate to diagnose CGIN and yet I have a letter saying I have CGIN based on a punch biopsy. I'm assuming the cone biopsy is partly about excision but also potentially to establish if it's really CGIN or has become adenocarcinoma?
The lack of information I've been given is very disempowering. I'm open to hearing any ideas or views from anyone who may have experienced something similar. I feel like I'm playing Cluedo with my own life right now.
Hi smashbang and welcome to the group.
As Macmillan is a UK charity, our information is based on the UK here, and things may differ in other countries.
I haven’t experienced anything similar as I went straight to a cancer diagnosis, but there be others who might reply who have had a cone biopsy. The Multi Disciplinary Team in our hospitals is typically made up of the medical specialists in their particular field-oncologists, radiographers, surgeons, pathologists and nurses. When anything is removed during a procedure like a LLETZ or cone biopsy, it is sent for analysis in a pathology lab to determine what has been found and if there is further treatment required. So effectively the check will be for clear margins around the tissue removed and establishing if there is cancer present.
In the UK you wouldn’t be able to decide on the day that you want a hysterectomy as that is something which needs to be decided in advance by your doctor/surgeon and is very different to having a cone biopsy.
Communication with you does seem to have been lacking, but it would be best to speak again with your doctor before you attend for the cone biopsy-can you call tomorrow to arrange an appointment to discuss things further in advance of your appointment on Friday?
Sarah xx
Hi smashbang
Thanks for clarifying this-I wasn’t sure exactly where you are based. I think it’s absolutely right that you’re trying to get more information, and a discussion around the possibility of having a hysterectomy should be part of that.
It’s very disappointing that the consultant isn’t available to talk things through and that the nurse can’t give you answers either. The bottom line is that you are booked in for a procedure very soon and you’re clearly not entirely comfortable going ahead with it. Have you already signed the consent form for the cone biopsy? You can withdraw that at any time before going ahead, and you cannot be forced to have any procedure done without you being happy that it’s the right choice for you. It’s really not reasonable to not be able to discuss this further with your consultant, so I hope you might be able to make some progress this week.
Sarah xx
The purpose of the cone biopsy should be to excise the area and make a confirmation on the diagnosis from the area removed. The aim is to remove the affected area completely, with a margin of healthy tissue around it and there would be a follow up depending on the results. It may or may not be the end of the road depending on those results.
Typically a LLETZ or cone biopsy would be done as the first treatment stage rather than going straight to any type of hysterectomy for someone of your age. But it’s dependent on the individual case. I understand that with CGIN being identified, you’d be worried about a potentially more serious diagnosis of cancer from the pathology or cancer developing in the future.
I‘d check whether or not you’ve signed a consent form-it will be on your record as the hospital retains a copy-although I’ve also always been give a copy for my own records so I would expect you to be given that too. If you haven’t signed your form, this will be done before the procedure, and before going ahead with anything the whole process should be explained to you in full.
Sarah xx
Hi smashbang
Thanks so much for coming back with an update-sometimes we don’t hear what’s happened, but it’s really useful for others to read. The goal is always to get clear margins with these procedures so hopefully your consultant will have achieved that for you.
Logistics can be completely outside everyone’s control unfortunately and dependent on if there are any unexpected events which need to take priority in theatre. I’ve always had to be there at 7am, and the longest I’ve waited was until 2pm. That was difficult but I’ve had several surgeries so I just accept it can happen. One time I got “mislaid” between the theatre and recovery/high dependency unit-my partner phoned the hospital to see if I’d arrived in recovery and no-one could find me anywhere-no idea where I was as I was still asleep!
I’m glad that you feel more settled with everything and what will likely happen next, but please let us know how things go. I hope you’re recovering gently at home now.
Sarah xx
