Concerned - Poor communication from NHS

Hi All,

I'm 28 and had my first abnormal smear test in October.  Following this I was then referred to the hospital for a colposcopy and ended up having a nice surpise Biopsy whilst there.

This was on the 18th November, and 2 weeks ago at the beginning of Jan I still hadn't received any results.

I chased my doctors, went around the houses at the hospital and finally found the number of the Colposcopy nurse.  I then left several messages and am still waiting on a call from her.

Today I spoke to her assistant who informed me that there were "discrepancies", I assume on my results, and they were being discussed at a MDT this Friday coming (it's Tuesday today).  She infomed me she can't give me any further info, but the Nurse (who seems to be avoiding me) can.

I'm really concerned that my results have been raised for discussion and the delay that I've experienced isn't helping.

Is this as bad as I think, or would the hospital have been in contact sooner if there were any major problems?

Sorry if this has been asked before, but I'm feeling very scared as my mom died of cancer this time last year, my dad also died of cancer 20 years ago, as well as grandparents many years before that.  So it's rather a sore subject :(

Hello Jemma - I know you are scared, it's a very anxious time, waiting on results for all of us seems to be the hardest part. We always feel that it takes so long to get our results and can begin to think the worst, but I think no matter what the outcome, getting the results takes the same amount of time.  If there are discepancies, it may be because the result is inconclusive and therefore quite rightly should be discussed by a bigger panel, before giving you incorrect results.  They have to be certain and in agreement of these results before they put them to you.  In lots of cases the biopsy results will be discussed & scrutinised and rightly so, it is much better for them to be safe than sorry.

Don't let the wait make you think something is wrong - they are just making sure they agree on the results. You may not even get their response on Friday after the MDT, you may not get word until the following Monday. Again, don't let the pace of things worry you.  Try to keep yourself busy until then, hope to hear good news from you soon.

Sharon

 

The waiting is definitely the worse part for us all and there can be all sorts of reasons for it, my colposcopy results took longer than I thought to come through but I went for the procedure on the day before Xmas eve so just put it down to the holidays. The NHS is constantly stretched to it's limits & although I know it's hard not to given your own close experience of the big C just try and stay as calm about it as you can. Just remember you've done the right thing in going to your screening and what ever the result there is always something that can be done about it. Keep your chin up hun I'm sure all will be ok, and we're all here for you.

Hi Jemma

I thought I'd just drop you a quick message as this has actually happened to be before. Got the appointment to go in after the MDT and my mind was working overtime. All it was was that the smear and biopsies were showing different things. They then offered me a choice of treatment.

Fingers crossed it is just the same for you. Let us know how you get on.

Erika

Hi,

I am 28 had my 1st smear at 23 all clear, 2nd in Nov this year was advised that i had a cervical erosion. Results came back with high dyskaryosis and i had to go for a colposcopy on the 10th December, i had the colposcopy and a biosopsy which was a horrible experience. Having a smear does not bother me in the slightest over and done with quickly, but the biospy was awful and then the doctor couldnt stop the bleeding for about 5 minutes. I was advised that i would get my results within 4 weeks, i rang my GP on 6th Jan, they advised they had a letter from the hospital but i need to call them directly. I rang the hospital and was advised they had booked me in for treatment on the 29th Jan but that was it no information on treatment etc. Yesterday (14th) i received my letter but all it says is that i will be having LLETZ and that i need treatment to prevent the abnormal cells becoming worse. So left a bit confused, throughout this process nothing has been explained to me about what kind of cells they found etc so i had to use google which is never a good thing. I have rang the hospital (waiting for a call back) in hope that they can answer my questions but i assume that i have CIN 2 or 3.

Has anyone else had this sort of treatment?

Good morning all,

 

Thank you for your kind words of support.  I spoke with the Colposcopy nurse last night and she's confirmed that I have/had CIN2 (with 2mm Margin?!), which they believe has been removed with the LLETZ I had in December.

She's going to call me on Friday after the MDT to inform me of the outcome, but she hopes that there won't be any further treatement needed, just another scan in 6 months.

Thank you all again and I hope you all keep well x

 

Thats great news Jemma :-)

I managed to speak with an oncall doctor at my GP's office yesterday, she confirmed i have CIN3 but not malignant, i have my LLETZ on 29th so fingers crossed they manage to get it all too. I dont feel like i have had much communication from doctors with potential risks etc only what i have read from google. The oncall doctor telling me it was SIN 3, i had to correct her which doesnt fill me with confidence. Not much i can do though but wait it out!

Trudy x