Awaiting results

Hi Johyl and welcome to our group.

I’m really sorry to read you’ve had a bad experience and that the doctor was so unhelpful-not what anyone needs to go through.

It seems from your smear results that it wasn’t certain whether you had abnormal cells (which are precancerous) or not, hence the question mark before “squamous cell carcinoma” which would be a type of cervical cancer. 

I’m presuming you went for a LLETZ treatment to attempt to remove the cells? Sometimes it’s not possible to remove all the cells if they are covering a large area, but the samples the doctor has taken will go to the lab now to be analysed.

I appreciate you’ve said you have health anxiety, which will make things extra difficult for you, but I’d encourage you to try to stay away from google-It cannot diagnose you, and will only make you more anxious. You may read distressing stories there, but it’s not going to be your story. Please don’t assume this is a cancer that you’ve had for years. A smear test is not a test for cervical cancer-it’s a screening for the hpv virus. 

You’ve said you have hpv but so do many ladies, and it doesn’t always mean cancer. Hpv is the most likely cause of abnormal cells, but the only way to know if it’s cancer is from a biopsy, and you’ll need to wait for answers from the lab when the analysis has been done.

You have asked if anyone has anything similar and we can all just tell of our own experiences. I had a colposcopy and had some punch biopsies done-small samples of tissue were taken. These were sent for analysis, and I was given an appointment a week later for results. However, I had a visible lesion on my cervix which was quite large, so my situation wasn’t the same as yours. 

Have you been told when you can expect your results? I’d expect that you’d have a further appointment to discuss them to confirm what has been found, and what the plan would be going forward. 

Sarah xx

Thank you so much for your reply. 

The consultant didn't even mention the query about it all on the smear. Just that it showed high changes and cancer cells. I only know about the results as my husband sneaked a photo when the consultant was dealing with me behind the curtains. From telling me there was cancer cells to being examined was less than 2 minutes so my head was all over the place. 

Yes that's what he was going to perform. I did the paperwork and then on inserting the speculum it really hurt and he seemed annoyed and basically said if I couldn't handle that pain then he wouldn't be able to perform the procedure. I asked for the smaller speculum and that was manageable. He was looking in and digging around for a fair few minutes and I thought he was about to give me the injection when he decided not to. No reasoning and no explanation. Just said he managed to scrape some cells and that they would be sent off for review and that I should get my results in the next couple of weeks. The only thing he said after that was about bleeding out and going to a&e. No leaflets, no information of any kind. I don't know if I am going to get a copy of the results or just a phone call to book another appointment. There is nothing on the NHS app. 

Obviously I know it's there job day in day out but the whole experience has left me feeling very vulnerable and anxious. I would have expected a bit more compassion about it all. 

I was hoping that reading other people's stories would calm my anxiety down a bit in knowing what to expect next. I know everyone's experiences are different but it's comforting to not feel alone with it all. 

Absolutely you should have expected and received more compassion. Unfortunately, there are doctors who may be very efficient but unfortunately have no bedside manner.

An experienced gynaecologist will probably be able to spot cells which are cancerous, but ultimately they don’t know for sure and only your lab results will give the answer. My own gynaecologist could see my tumour but still didn’t frighten me by saying it was cancer. He just said he had seen something and tests would be needed to check  the biopsies he took. That was much kinder, and meant I didn’t have the level of worry you’ve been put through.

Results may go on your nhs app-I didn’t have the app at the time of my testing. If you do see results appear on there, it may not help with your anxiety to read them if you don’t necessarily understand them, and haven’t had anything explained, so it would be better to wait for an appointment to have them explained face to face. 

I now have the app, but I don’t read anything new immediately. I wait for an appointment. I have anxiety myself, so I deliberately work hard at not increasing it, though I understand how difficult it is. 

It’s likely you would have another appointment since your treatment wasn’t able to be completed and the cells have not all been removed yet. The treatment would depend on what has been found, and how extensive it is, so I think you’ll need to sit tight and wait to hear more.

I hope you’ll have a kinder experience at future appointments as you certainly deserve that.

Sarah xx

So sorry to hear this  .

I had a smear  with "High-grade dyskaryosis , invasive squamous cell carcinoma” come back on my smear and high risk HPV I had LLetz done in 21 and then normal smears . Now I been told I got a 4.5 cm tumour that’s starting to grow out of my cervix into the vaginal wall.

im awaiting a pet scan to see if its spread to the lymph nodes . They’ve said the treatment will be chemo and radiotherapy 

Mine have been really helpful and I had to download the app that’s called my chart . 

Thank you. 

I think I am going to stay away from reading anything until I have my next appointment. It's so hard not to obsessed over everything. I really need to stop reading things and just wait. 

I am hoping I don't have the same consultant for it all. His bedside mannor was none existent. It really does go to show how different people's experiences are based on who they see. I get that that can't reassure about anything but even talking through possibilities would be appreciated. 

I think these 2 weeks are going to be a hard wait. I don't plan on telling anyone. So having people here to chat to is helpful. As is reading posts. 

Thank you so much for your reply. I haven't been able to find much on those results. Also worried that the smear said it was an unusual presentation. Can't find anything about that anywhere. Naturally thinking the worst. I am just so mad with it all. For years I was just told I had an ectropion. I never considered doing anything about it. Although I am guessing my symptoms could just have been from that as they did stop being on the mini pill. 

I wish I had advocated for myself and taken it all seriously. 

Can I ask why they just performed the LLEtz? Everything I have read suggests that they only do that for precancer? Invasive squamous cell carcinoma is cancer, right? I would presume they go straight to bigger surgery? 

I am sorry you are going through it all again. It must be very hard. Hopefully your scan comes back as well as can be and you get the treatment started quickly.

Hi Johyl 

I’m not sure where you are reading things online-I hope it’s only from trusted sources, but I’m glad you’re going to try to keep away from doing it just for your own sanity.

For example it’s not true to say that LLETZ is only done for precancer. it can be possible for very an early cancer to be treated by LLETZ. Your results showed a suspicion of invasive squamous cell carcinoma, which is cancer- but it’s not confirmed yet.

The staging of any cancer is the determining factor in what treatment is required and the stage shows how extensive the cancer is, how large, and where it is located. The LLETZ would only be suitable as a treatment for something very small, and how they would treat something bigger might be surgery or chemoradiation. 

My tumour was 3.7cm and growing into the vaginal wall, so I was not a suitable candidate for any surgery and had chemoradiation instead.

Sarah xx

Thank you for replying again. It really is horrible being in this state. I have been making myself so ill with it all which isn't good. 

I just feel so withdrawn from it all. Obviously it's so hard to not think the worse and to he more I read, the more stressed I am. Doesn't help that things say different things. I guess I am just clutching at straws at the moment with the little information I have. 

I just wish they had done the procedure there and then. Then at least I would have felt in a better position with it all. I just can't help going for the worst case scenario with it all. 

Hopefully I will feel better soon! 

Try to remember that the procedure will only be done if it can be done safely and with the possibility of a good result-ie successfully removing all the cells. 

When there’s a suspicion of an invasive cancer, they want to be sure that they do the correct treatment, and that might not be a LLETZ for cells spreading over a large area. I know it’s really difficult to wait to find out more, but getting the right treatment is ultimately the best way forward. Hang in there.

Sarah xx