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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

Hi all,

This post will be a little long as I try to outline my history. What I'm really looking for is anyone who has had AIS with a history of CIN 3 because as far as I have researched they are totally unrelated (one glandular and the other surface.) and I'm also looking to try and gain some balls in dealing with medical staff because first time around I was totally powerless, and I'm showing signs of it again which makes me hate myself!

So... A little bit of history.

Just before Christmas 2006, when I was 21 I suffered my first miscarriage. It was unplanned and honestly, not a healthy relationship so hindsight says it was probably for the best. After the D+C they also did a pap test, because I had never had one (scared little girl not wanting anyone looking down there).

It came back CIN 3, "urgent biopsy recommended" . Urgent, it turns out was a three week wait for the public clinic as I didn't have private cover at the time.

Had a colp and biopsy and it confirmed CIN3 some CIN 2 and two small cysts that start with an "N" - they are benign, I just can't remember the name of them. I had "see and treat" diathermy in the chair that day for the cysts - no bloody drugs and even when I was crying and begging them to stop they didn't! They also did a HPV DNA test which read negative.

The diathermy cutterages were still Positive, so I needed to have a cold knife cone which they couldn't do till March as I needed to heal.

March came, had the cold knife come and hemorrhaged after the surgery. They sent me home after day 3 with a pack still in place, an on day 7 I endured the joy of pushing out tennis ball sized clots. The bleeding obviously hadnt stopped, it was just pooling in my uterus. Charming infection, call for results in three weeks then come back to clinic in 3 months for a punch biopsy.

Had the colp and punch biopsy, called for results, was told there was nothing to report, and I could go back to seeing my GP for 6 monthly, then yearly smears.

All of those smears were clear until April this year (2012).

Went for my pap with a new GP. He noted (and now it's how he recognizes me) that I have a "funny" cervix. That there are what appears to be two openings not one. When I explained about the cysts and the cone he said that makes sense, and made a passing remark about "wonder which hole they have been taking smears from" all these past years. As painful as it was, he did both, and ascertained the one on my right is the correct one.

The results came back as "Atypical endocervical cells of undetermined significance" which is Australian for AGUS I think as that category doesn't exist here. I was referred to see the best of the best (who happened to be in Europe on a holiday) so there was a 6 week wait for colposcopy.

I wasn't concerned - I thought the GP was being over cautious due to my history. And Atypical doesn't sound menacing at all!!!!

But it was a long wait, and I wanted this new doctor to know that I had a risk of bleeding etc so I decided to FOI a copy of my medical records from interstate.

They arrived really quickly, which in hindsight is a terrible thing because it just extended the stress cloud I was under. I read my pathology reports.

No, there wasn't anything sinister like squamous cell carcinoma I hadn't been told about, but there was the very sinister thing that is human error, an overburdened medical system and people falling through the gaps.

The margins on that cone were not clear.
The follow up biopsy that was performed was too bloodstained to be properly examined - hilariously it did state "nothing to report" but not because it was clear, because it couldn't be sampled!!!!

So finally the day of my colp arrives and he really is great and wonderful and all that jazz. Shows me everything on the monitor, even my funny 2 holes. Isn't concerned at all. Path taken, appointment for results the next Tuesday. I'm not worried - well, a tiny bit, but I have my sisters and mum flying in from interstate to take me wedding dress shopping, so I've got good distractions.

Tuesday arrives. The gyn is at a delivery and is running late. He comes in, and sees everyone except me. Even people who's appointment was at 5 ( mine was at 3). I'm psyched up for the worst - evacuate the happy pregnant women so we can tell this lady she has cancer!!

It's not cancer. I do an internal little dance of relief It's still atypical cells of undetermined significance. But he wants to do a cone. Tomorrow if possible - but maybe thursday. So the practice nurse is doing my bloods and the secretary is finding a theatre and even in that flurry of activity I still feel relieved.

Thursday and the cone. Went fine. I always cry when I wake up from GA. I don't know why. But inconsolable tears that have nurses rush me extra pain medication before I can articulate that I don't need it. Maybe it's the best sleep I get, and I don't want it to end?

Monday was the Queens Birthday public holiday, so tuesday morning i call for results because I'm not very good at doing nothing, and I was ordered bed rest to minimize the chance of another bleed. I'm still not worried. Actually, I'm bloody annoyed at all the money I've a) spent and b) missed out on earning with weekend and public holiday penalty rates. I was calling to be able to berate myself, call myself a hypochondriac who just wasted $800 and missed out on earning $1100.......

The nurse was cagey. I expected her just to read the pathology report to me.

"the surgery went well and the results are what the professor expected"

"um. Well. I didnt think the professor expected anything. Can you just read the report to me so I understand it?"

"I need help interpreting these results can I call you back this afternoon?"

"sure". Why did I agree and hang up? I knew from the outset she was being cagey. And cagey made me sick to my gut. I was sure if it was bad, they would call me in for an appointment. That was the point where I had given myself permission to freak out. But I freaked out anyway. Queue phone call freak out to my mum, who managed to calm me down with this wisdom " of course it's bad, but the surgery went well, so they may have got it all. And they don't want you freaking out about a problem you had last week which may already be cured"!

So the nurse called back and was very cautious in explaining that it looks like its just AIS and didn't seem invasive, though the margins were not clear, and scheduled me a follow up for 8 weeks time.

I'm halfway through those 8 weeks and going insane.

I really don't know what to do with myself. Ive got cancer-head and I don't even have cancer - well - stage 0 - but I can't put it out of my mind. I don't think I can wait another 4 weeks, and I don't know if I could handle "close surveillance" as the only action plan if the biopsy comes back clear. I need to take action because even if squamous and adenocarcinoma are unrelated, lightning has struck twice in my cervix and I don't want to repeat this cycle again.

I don't want a hysterectomy - I desperately want to have a family but adoption in this country sucks - but I don't want to do nothing either. I can't do nothing. I think I'll lose my mind. Last week I went to try and get in touch with mental health services because I feel like I'm not coping very well. They referred me to the cancer councils services who offer free counseling to cancer patients - but I feel like a fraud using them , like there are so many other people so much worse off than my pathetic stage 0. (which I'm desperately hoping stays that way, but it seems like the news is on a bad to worse trajectory and no amount of positive thinking on my part has stopped it.)

I also feel like, with the AIS diagnosis, and my prior history including incomplete follow up and unclear margins that things are much much worse than anyone knows - but I'm scared to raise that without sounding like a hypochondriac.

I want a PET scan. I want a chest and renal xray, an abdominal CT and full blood work up. - see? Crazy lady!

This post has gone on way too long. But it has felt good to get some of the crazy off my chest. Thank you for reading. Any advice or suggestions would be greatly appreciated.

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