Feeling frustrated

Treatment for cell changes (abnormal cells)
1

I just wanted to get advice & to have a bit of a moan

I’ve been badgering the Colposcopy department at my local hospital where I had my Lletz for at least 6 weeks now. I’ve been chasing up as to why my smear test came back as ‘Severe’ Dyskaryosis &HPV+ but my Lletz (which took 10mm away) came back as only CIN1 (with clear margins)

From everything I have read online, these results should have been taken to an MDT meeting. Where the discrepancy in results is discussed because

  1. Having only CIN1, I have been over treated. No biopsies were taken, it was just see & treat there & then

  2. To see if my Smear was overcalled or Lletz undercalled

  3. The possibility that something may have been missed higher up

I have been told, in an indirect way, that it is likely my smear was over called & this isnt an uncommon occurrence as if they are in doubt they grade up apparently

My case was never taken to an MDT & I’m frustrated as to why. I’ve been left traumatised by the whole thing with no real explanation as to whats happened with the discrepancy & no follow up from the department has been made. I’ve called & called & been promised phone calls back but nothing has materialised

What if they’ve missed something? What if they could stop over treatment happening in the future by looking into these cases

I don’t know whether to just shutup & be grateful that my results were seemingly lower than expected or to keep pushing for an MDT when it should just be standard practice. It’s making me extremely anxious

EDIT: literally just spoke to a colp nurse who said - your consultant probably didnt take it to MDT as it wouldn’t have changed the management of your case. That’s all well & good but shouldn’t they be investigating the discrepancy anyway & at least letting me know why it happened?!

2

Hi Aimeeleanor

I hope you are well, all considering.

My treatment was never taken to MDT. I had my smear which showed High grade (severe) dyskariosis, then I expected to have the LLETZ done at the colposcopy (its what the letter said would happen), but the consultant changed his mind right before I jumped on the dodgy bed/leg thingy, and said we would take biopsies and I could come back if LLETZ was needed… it turns out I had all three (CIN 1, 2 and 3) so did have to go back regardless for my LLETZ. The decisions were all made by my consultant.

Did they have you sign a form to give consent to the LLETZ (they should have before undergoing the procedure).

Personally, whilst I understand it must be frustrating for you, I think its better to overtreat than undertreat. You must look at the positive, whatever the level of CIN, it has been removed. I assume they are inviting you back for test of cure smear in 6 months?

Its more likely that the smear was wrong, as they are going by a tiny sample on the end of a q-tip. They have a slice of your cervix to test from the LLETZ. Whilst treatment for CIN 1 is normally a wait and see approach, it is likely if left it could have ended up being 2 or 3 and you would’ve had to come back in anyway.

Honestly, I have been in your shoes before, where I have been so upset about the way something was done, and it has taken someone to ask the question, what will it achieve by pushing this further. It will cause you more stress, more upset, but unfortunately you cannot change the way it has happened.

So in your shoes (usually after a talking to by someone who wasn’t as emotionally involved as I was at the time) I would write a letter, explaining that I am concerned that I wasn’t given the option of biopsies first before the LLETZ, and that whilst I am grateful to have any abnormal cell removed, it would appear that the procedure was not necessary, causing pain and discomfort, and wasting valuable NHS resources.

Send this to your PALS (patient and Advice Liaison Service) at the hospital you underwent the procedure. Let them know what you would like to happen (i.e. a written apology, or a senior person to look at the current procedure to prevent it from happening again etc.) and how long you are happy to wait for a response.

After that, honestly please try to forget about it. I know its hard, but try to focus on your amazing news that it was only CIN 1 and that you are not having to undergo any other treatment right now because you are currently abnormal cell free.

Sending lots of love xxx

1 Like
3

Hi Em

Thank you so so much for your kind response. All of what you have said makes total sense & I really appreciate you taking the time to send that. Your lovely words have put me even more at ease. I’ve just become so horrendously anxious since all of this. Which is surprising as I have had several open heart surgeries in the past & have never batted an eyelid. But with this I’m an absolute wreck! Which is totally unwarranted. Different things affect you in different ways though I suppose. I also feel like I can’t speak to anybody close to me as I feel like a burden… hence why I waffle on here, I’m sorry!

Did you feel particularly anxious through it all? And if so do you feel better now? You seem to have such a calm & rational way of looking at it! Have you had your test of cure smear yet? That’s yet another cause of anxiety! I think i’m going to book a private smear test as well as having one at my GP, as me & my husband are wanting to try for a baby so want to make sure everything is 100% ok!

I have actually just this second had a call from the Consultant! He explained things to me a bit better

He would usually recommend an MDT if he had only taken a small biopsy & it had come back as negative or CIN1. As there would be a possibility with a small biopsy that any disease or cell changes could have been missed. But because he did a see & treat & he took 14x10mm he is happy with the outcome. He actually said (which i was never told before) that both my endo & ecto margins came back totally clear & there was no evidence of cell changes apart from CIN1. He said the see & treat policy is more convenient for the patient (especially somebody as anxious as I was) because it gets it done there & then. Plus he could see a small transformation zone & also what he took won’t affect me if I do manage to get pregnant. He said that he will take it to MDT just for educational purposes now, but there is subjectivity between each doctor & consultant of result interpretation. So it is very likely my smear was over called

All that is a relief to hear & my test of cure is due in a month so fingers crossed for good news then!

Sometimes your mind gets the better of you & you become totally irrational. Which is totally unwarranted as there are so many poor women suffering from so much worse

Thanks lovely xx

4

Hi Aimeeleanor

Firstly, what you are feeling is not unwarranted or irrational.

I think the issue is that we are made to feel like what we are going through is routine and normal, and just not really a big thing… but actually its huge! and most women feel exactly what you are feeling. I’m feeling it too! I’m still awaiting my LLETZ results, and I will be honest, I’m a complete wreck on the inside. I think I’m just so used to feeling like I need to hold it together that I come across calm. The nurse in my LLETZ procedure said I was the calmest patient she had seen in ages, but on the inside I was having a complete meltdown. I was in the room for nearly an hour as they took 20 minutes just finding my cervix!

I am on my own little mission, to spread the word that it is OK to be frightened and anxious! To spread the word to all women that what we are going through is not routine! It’s not ‘normal’! Its scary! These procedures and results have a massive impact on our lives and we are allowed to feel concerned about everything that is going on, and we should be educated better in what will happen and what to expect!

We are told to have our regular smears so that we don’t get cancer, and whilst our results come back fine we just toddle along and accept that everything is being done as it should be. Then a smear comes back not as expected and it floors us because A- we didn’t expect it, and B- we don’t know what happens next, we just all think of Jade Goody and go into complete meltdown whilst the NHS send us letters containing scary words that terrify us even more.

Sorry, my turn to waffle lol. My point is, you are amazing and you are strong for going through what you have. You are not a burden to anyone.

Sending lots of love and lots of hugs, good luck on the baby front xxxx