No Punch Biopsy Results Until After Treatment...... Surely This Cant Be Right???

Hi all,

Im hoping somebody can shed some light or offer any advice.

I attended colposcopy clinic 12 days ago after my first smear came back showing severe high grade cell changes.

When i arrived the lady said she would be performing the Lletz procedure as part of the examination but once she actually examined me she said  'IT' (whatever IT is) was more extensie than she hought it would be and she could see 'IT' had spread to my vaginal walls and up through my cervix and I needed to be referred to a Gynae Oncologist. She discussed several procedures with me but said i would definitley need a GA rather than the LA she offered originally. She was lovely but completley terrified me by saying things were alot worse than she would have expected and mentioned that seen as i have 3 children and have finished my family a hysterectomy could well be offered and it would be a thing to go away and think about.

Now i have done nothing but think about and panic!

Anyway, to cut a long stort short she took 4 punch hole biopsies and said she would get on with my referral to a larger hopsital.

I received a phonecall today to say that as expected my biopsy results have shown i need treatment and the new gynae oncology doctor will be intouch within the next fe days regarding my operation.

I have requested a report from the biopsy i had done but she said they don't use these results so they don't give them out. Apparently they only use the results of what is taken away during treatment. She said I won't find out any results until after my treatment under GA. Surely I should know what I am being treated for before I put myself on that operating table!

Surely i am not wrong here? I know they will send whatever they take away when I have the operation to pathology and use that but surely I should be told what the biopsies have shown so far? 

any help would be great

xxxxx

Hiya,

Mine was quite similar to this. I hadn't heard about punch biopsy results for over 7 weeks, so rang the hospital to chase them up. They then said yes you do need the treatment and made me an appointment. I got a letter confirming my appointment and all my letter said was that a larger biopsy was needed rather than just make a diagnosis. When I went in for the loop treatment the consultant then told me I was having it done because CIN 3 was detected. So, not sure if anyone gets written results or not. Now waiting for results from that. They again said between 4 - 6 weeks.

Hope that helps! x

Oh johanna, I am sorry to hear that you are still waiting, waiting, waiting...

. I would keep hounding them and ask to speak to someone else if they can't help you. Explain you NEED to know something as are becoming very stressed, etc. could you make a GP appointment to discuss it and see if they can chase anything up?? If nothing still, then just rest in the knowledge that they are doing something behind the scenes. We often think that because we have not been told anything then nothing is happening but from my own recent experiences I found out that lots had been organised and decided without me being part of discussion.

Your big downfall was the nurses comments at your appointments. Nothing should have been said to worry you like that, it was unnecessary. But what is done is done. So chase it up, don't give up, annoy them with phone calls and emails.

Good luck x Dons

Hello Johanna,

 it's such a worrying time for you right now. I know that feeling very well having gone through similar myself.  However I'm not sure if the policy varies from region to region as I had my Colposcopy carried out at my local hospital (I live in Northern Ireland) and within 2 weeks I was summoned to see the doctor who performed it, for the results.  It was she who read me the details of the biopsies she had sent off.   She also told me she had referred me to the oncologists and I would hear from them next.   She told me I  would most likely need a hysterectomy but that would be confirmed after I'd seen the oncologists.

I don't know why in your case they weren't more specific as the results were clear in my case after the colposcopy.  They may be correct in saying they don't use these results but they should at least tell you what they found.  They may  perform EUA which is examination under anaesthetic and maybe that's what they mean?  I also had this done before I saw the oncologist and this confirms the biopsy findings.

I'd pester my GP if I were you, get him to contact them regarding the biopsies.  I had my GP do this for me after I had the MRI when they wouldn't give me the results of that - he phoned them and basically insisted they give me the results, which they did.

In the meantime, it's hard not to worry, and it seems if everything takes so long when you're waiting, so I won't say 'try not to worry' because I know when people said that to me and I know they meant well - I hated that statement! If you can distract yourself, make yourself busy somehow, maybe the time will pass more bearably.

Meantime, if you've any queries,post them on here, somebody will have an answer or advice that will help.

Sharon

 

Hi Johanna, i didn’t get a report with biopsie results either. When i chased them up all the nurse said was that they’d matched my smear results and i’d need treatment. My smear came back as high dys. , n even the letter they sent out after only said abnormalities had been found so i’d need treatment, that i’ve now had and am now waiting for the results from that. Hope they tell you more x

Thankyou so much for your replies ladies. It really is much appreciated! 
I don't know exactly what high grade dyksarosis stands for ie cin1, 2 or 3?
She did say at my colposcopy when we discussed the referral to an oncologist that I would have a EUA while I was under the GA. Although never actually said what a EUA was so I had to google it! 
I know that I will have more samples taken while under GA and she explained I would have a follow up appointment around 2-4 weeks afterwards for results but she also said my punch biopsy results taken from colposcopy would be back 1-3 weeks so I did expect to be told something even if only a provisional finding. Instead they have said they don't use those results! 
Why bother putting women through in some cases painful and traumatic biopsies if they aren't going to bother with the results?
Starting to wish she had if just performed the Lletz on the worse area so atleast I'd have some results now! 
She was a lovely woman at my appointment so I'm hoping she will be accommodating when I call again later. If she isn't does anybody know if I am within my rights to demand a copy of the pathology report?
I know it will all be in medical jargon but my mother is a cancer nurse specialist so I'm sure she could de-code some of it with me. 
Again, thankyou so much ladies. It is such a good support network this site for women of all stages. 
Xxxx

Hi Johanna, i’m guessing here but i think high grade dys, is the equivelent of cin2/3, where as low grade is usually cin1. They have to treat cin2/3 because it won’t go away on its own like cin1 can. Hope you get more information x

Thankyou Sharon. How did your loop go by the way? I have looked online but there's so much conflicting info about high grade cell changes I decided to just wait till I was told something. I'm going to ring the colposcopy clinic in the next hour but if I have no success should my gp surgery be next point of call do you think?

Youd think they would realise the stress of waiting and not hearing anything on us women!

Johanna

xxx

Hi Johanna, i’d definately get in touch with your gp if you have no luck at the clinic. Your GP will hopefully be able to find out more. My loop treatment went fine, i was amazed by how quick it was especially after my experience with the first colposcopy n biopsies that seemed to last forever. The doctor n nurse helped put my mind at ease unlike the 3 nurses i saw originally that had me worried sick after my biopsies. The bloomin nurse at my biopsies said it could be anything on the sheet she gave me which included cancer n had me in a panic as well as them asking me if i’d had all the kids i wanted, suddenly i’m thinking they want to take it away!!! I’m very glad it wasn’t them that did my treatment. Hope the clinics abit more helpfull this time x

Well I rang already to fight my corner but as I thought she was lovely and gave me all the info I wanted. She said it is CIN3/CIS which im abit confused about. I thought CIN3 & CIS were the same thing but she said although it is very much almost the same there is a slight difference and I'm sat between the 2 whatever that means. She reassured me though that both are treated exactly the same. She's unsure what treatment il be given though as it covers the whole of my cervix aswel as spread onto my vaginal walls so quite a large area. She did say I should hear off the gynae oncologist in the next week or so though so hopefully not much waiting until I'm back waiting for results! 
Glad your procedure went well. I did watch a loop on YouTube and wish I hadn't! Hopefully not much waiting for you aswel. 
Xxx

Hi Johanna,

I was confirmed with CC after my biopsies but had to wait until I'd had a Lletz and Examination Under Aneasthetic (EUA) under GA to find out what type it was. Originally I was told adenosquamous stage 2A. It wasn't until after my hysterectomy that they said it was just squamous and was contained and stage 1B.

What I'm tyring to say in too many words is...sometimes it can take them a little while to put all of the pieces together before you know the full picture! Which is very stressful at the time but they can only go on the info they have.

Best of luck with your treatment xx

 

Thanks for your reply Jo & I'm sorry to hear your diagnosis. I hope your doing as well as can be. 
I rang again and spoke to the doctor I saw who said its CIS but that the gynae oncologist from the bigger hospital will be intouch shortly to discuss more & treatment options. 
Iv decided to just wait or speak to others on here rather than google! 
Johanna
Xxx