Advice needed please x

1. Hi Courtneymarie welcome to the forum. I am not 100% fully aware of all to do with your results. However, as far I can understand the high grade dyskaryosis is a pre cancerous type of cervical abnormalities stemming from the HPV.  It might need to be treated but I'm not totally aware of how that will work. However, I'm sure that some if the lovely folks in this thread will be along soon to offer information and advice for you. 

thank you so much for replying so fast, they dont make it easy do they with the DR talk. its so hard not to panic, im 27 and never had my smear before this one so im kicking myself a little bit. i should have had it done before having my baby last year x

Hi courtneymarie and welcome to our group.

I’m happy to explain some of this for you to help reassure what your results mean and I understand you’re worried about things now while you don’t have your full results. 

The first thing is the hpv virus-lots of us have this and never know about it, but for some of us it causes issues by changing the cells in the cervix. Cervical screening is to look for the presence of the hpv virus first, and if you have a positive test for this, the cells will be tested further. High grade dyskariosis is CIN, and although the word severe looks scary it is not cancer. It is however, the highest level of precancerous cells (the levels are 1,2 and 3) so will need to be treated.

It is the abnormal cells which need treatment. There is no treatment for the hpv virus itself, as this is something that cannot be cured. The hope is that your own immune system can get on top of the virus and clear it-ie make it dormant where it is not causing any further issues for you. But you can’t get any treatment for the virus itself because there isn’t any-only treatment for abnormal cells and the damage caused by them. 

Since biopsies were taken at the colposcopy, these would have been analysed in the lab, where the dyskariosis(CIN) was identified. When you go to your appointment, you should be told what the next steps are going to be and the treatment is likely to be a LLETZ treatment where the abnormal cells are removed. This involves a straightforward procedure(not an operation) where the cells are removed. This might happen at your appointment, but it may be that a further clinic appointment is made for this. 

After the treatment is done, you will have what is called a “test of cure” some months later. This will test for the hpv virus again to see if it has gone, and the hope is that you will have a negative result. The intention with the LLETZ treatment is that it removes the abnormal cells and a margin of health tissue around them to ensure everything is gone. This is called a clear margin. Normally this is achieved, but if not you may have to have further cells removed. 

I hope that everything goes smoothly for you-I understand how worrying it is to have an abnormal result, but please try not to think the worst-dyskariosis is not cancer, and it can be successfully treated. 

I’m sorry I didn’t see your post when you made it as I normally always keep a close eye on new posts to welcome all our new members to the group. Please let us know how you get on and feel free to ask any more questions if you think of any. I’ll look out for any further posts from you and make sure I answer you myself so you get the correct information. 

Sarah xx

thank you so much for responding, it has put my mind at ease. i just have to wait until my appointment which is the hardest part, i feel like were always waiting! 
can they pick up if some cells have turned cancerous by biopsy? and if so would they still do the lletz x

Hi courtneymarie 

Oh, it’s always hard waiting for things-usually it’s the most difficult part of the process.

It can be possible for the biopsy to pick up cancerous cells, but from what you’ve been told so far, that’s not the case. However, it’s also possible for cancerous cells to be picked up after the LLETZ as it is treating a larger area than a biopsy takes. What is taken in a LLETZ is analysed afterwards to make sure everything is gone.

A LLETZ would normally be done on the basis that you have CIN3 as it usually needs treated, but it looks like at this point there has been no cancer identified which is a very positive thing! 

Try to keep yourself busy, keep away from dr Google and hopefully this will all be behind you soon. 

Sarah xx

okay so a little update..
iv still not received any letters for my appointment that is for tomorrow morning. no letters for biopsy results or even letters for the positive HPV + cells. 
Something was telling me to give them a call today, i rang up and asked what the appointment is for as the app isnt giving me any info. She told me "oh just a colposcopy due to your smear showing abnormal results, but we have had to cancel due to a staffing problem" i told her i had a colposcopy and my biopsys the same day of my smear, she put me on hold and came back a couple of minutes later and told me " okay so you will need to come back to discuss treatment and have a bigger biopsy done but unfortunately i cant fit you in at all untul the 30th but if anything comes available i will contact you straight away"
I should have asked if that meant i was having the LLETZ, it probably is right? 
i was just angry that iv had to wait again, im having chest pains im that anxious. 

it not fair that they would have just cancelled on the app and not even bother to contact me and explain, i just dont want to leave it too long. Im now another month of abnormal bleeding with some other gross symptoms. if its not this that's doing this to my body i need to figure out what it is!

Oh, I’m really sorry to read this courtneymarie -how stressful for you. If you need to have treatment the likelihood is that this would be a LLETZ. She has said you need a bigger biopsy-usually this means that the first biopsy was not enough and they need more tissue to be taken. 

It’s horrible not to have things explained to you, and not get enough information, but unfortunately that does happen sometimes-I’ve had dozens of appointments in the last 6 years-some cancelled with no explanation at very short notice, so it’s annoying but the nhs is in my experience just overwhelmed. That doesn’t help you, of course, but if you can get a cancellation and can take it, that would help you. 

I know everything seems to take a very long time, but typically a wait doesn’t have a detrimental effect on your outcome. I’ve had long waits with my cancer at times, even in pre covid times, which exceeded the guidelines on timescales for treatment, but I was still ultimately dealt with-I’ve had to wait for recovery from a surgery and for the right people to be available. 

Waiting is difficult but it’s just a part and parcel of the diagnostic process. If you’re having extreme anxiety and having chest pains then I’d recommend seeing your gp as soon as you can and explaining what’s happening. They should be able to help you out. Please don’t suffer in silence.

Sarah xx