Diagnosed yesterday - feeling v confused!!

Hi,

Wondering if I can have some of your invaluable advice.  I am sure I will ramble a little so please excuse me.

I had a colposcopy on 5th May after receiving an abnormal smear (severe Dyskaryosis).  I was told I would receive my results in 3 weeks or so but from what he could see I would need a cone biopsy.  I received a letter a few days later with a date for my biopsy on 12th June.  On Friday 12th May I received a voicemail from the hospital asking me to come in on Tuesday (yesterday) as the Dr wanted to discuss my results with me.  I presumed it wouldn't be the best news!!

Anyway,  had appointment yesterday and he started off by saying that they had found a small amount of cancer but he had hoped it had all been removed with the cone biopsy.  I told him that I hadn't had the cone biopsy I had only had the colposcopy and I was booked in for the cone on 12th?!? How could he not know.  I feel like he hadn't read my report properly before calling me in.  He then showed me the report and it says 'there is at least microinvasive change, if not frank invasion.'  I am not freaking out about the diagnosis (too much) as I feel I can't do much until I find out how much is cancer/what the grade is.  I just feel slightly confused as lots of people on here get a result of CIN3 after their colposcopy and then after the LLETZ/Cone they get the diagnosis of cancer.

For the past few years I have suffered with clots, pelvic pain and pain during sex and I have been waiting for over 8 months for a laparoscopy.  I am just worried that this might be to do with the cancer and may have started somewhere else.  I didn't say much to the Doctor yesterday as I am not sure how much I took it in but I seem to have one hundred and one questions now.

Thank you for listening - feels good just to get it off my chest!

 

Hiya Hun, i didn't want to read this and run, but it sounds to me like they think they will remove whatever they've found during the cone procedure. Did he say that you are still booked in for this procedure? I'm also recentl diagnosed with CC 2b. I'm booked in for a radical hysterectomy with lymph node removal on 30th may. Goodluck with your next steps xxxx

Hi jamyster

im very sorry to hear that you have had very vague care in this whole thing. Can you make an appointment with you GP and discuss everything. They will have reports sent there so he will have all the info. I agree with pp that it seems they think they will get it all with a cone or you will be diagnosed with invasive instead of micro invasive cc after the cone results come back,like how you mentioned it seems how most people get their diagnosis. It's always best to just focus on the next step ahead and try not to worry about the what ifs. 

Your sysmptoms have most likely been from this but only time will tell if that is indeed the case. 

Stay away from Google keep asking questions here. Sometimes it does take time to get replys. The trick for waiting is to stay busy and distracted. Rest and focus on life and not cancer. 

Much luv

Hi Jamyster,

So sorry that you've had to make your way here, and that your Drs are seeming a bit disorganized! Your diagnosis sounds a bit siimilar to mine in that I had a punch biopsy taken at colposcopy at a private gynaecologist which showed microinvasion, so they knew there was cancer present before the cone biopsy. The gyno oncologist at the hospital explained that the cone biopsy "could" be curative in a lot of cases, but after doing it they couldn't get clear margins, so I'm now booked for a hysterectomy in a couple of weeks.

The waiting for tests for staging really is the worst part, I was a mess for the weeks between getting the punch biopsy result and the cone biopsy, I feel much calmer now that I know my stage, and what the path ahead is.  The ladies on here are lovely, and have lots of knowledge, coming on here makes me feel like I'm not alone, and it keeps me away from Google! Hugs to you, and hope that you can get your staging and treatment sorted soon. Xx

Hello

That is a shame they got it a bit confused!

I had my colp then they called me in to say it was cancer then I was offered the cone, they didn;t get clear margins so then I chose the trach.

I hope you get some more answers soon.

Sending hugs x