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Cancer: Cervical & Ovarian Message Board
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Old 02-06-2013, 05:37 AM   #1
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jmc31 HB User
Very scared :(

Hi everyone,

I am 31 and have had an abnormal smear in the past (I think must have been CIN1 as they told me it may clear up on its own). My mind has gone blank as to whether I had one other after that or this one most recently was the first since. I was definitely late with it and now am really upset with myself for being so stupid and not going when I was supposed to.

I went for my last smear 2 weeks ago on the 21st. I was told it would be about 2 weeks until the results. I got a letter on the Saturday after the test (6 days) to say I needed an urgent hospital referral then had a weekend of worry until the doctors opened after the weekend. So I called and as I had to change hospitals from the one they wanted to direct me to the lady at the doctors said to find which hospital I wanted to go to and ask if they could see me and then she'd refer me straight away.

I called one and explained and the lady said that she couldn't tell me when the appointment would be until she had seen the results as even though the letter says urgent that's not an indication the results are. She said if urgent then it would be 2-4 weeks and if not then 6-10.

So my doctor's surgery made the referral and the lady at the hospital called me back within 20 minutes and said 'yes we do need to see you asap can you come in tomorrow'. Freak out session number 2.

So I went for my Colposcopy and the lady said she suspects I have CGIN so she did the colposcopy and took 2 biopsies. I asked 'are you going to tell me I have cancer' and she said can't say until the results come back but please don't worry and she thinks it will be ok. She also scheduled me for an ultrasound and told me I would need an op under general anesthetic to remove the cells. She said this would be end of Feb/beginning of March most likely as I told her I was going abroad a few times during the month.

Since then I've been reading up on the internet (probably too much) and thinking about the symptoms I've had. I have been having what I thought were recurrent bladder infections and going to the toilet a lot more than usual, discharge, losing weight when I shouldn't be so I feel sick with worry.

She said the biopsy would take 7 days to come back which would have been today but she called yesterday to say that the results were back and they needed to sit down as a team in a meeting today and work out the next steps and could I come back in to discuss that on Friday.

I was in an open plan office so I put the phone down without asking any questions (and I froze up to be honest) so I went into a closed office and called her back. I asked if she could please elaborate on the results and she said did I remember what she had said and I said yes CGIN she said yes well it's still indicating that but we need to make sure and that she knew I was going abroad a few times in February and I said yes but if I need to then they will be cancelled no problem. She said that we would talk about it when I see them on Friday. So I directly asked 'did it show that I have cancer' and she said 'I can't tell you that over the phone we will talk on Friday' I was crying and really shaken up and there was no reassurance even hinted. So I am in bits now and although people keep telling me that they can't give that info over the phone she was ok to say at the colposcopy that she didn't think it was. And she was very reassuring and nice then on the phone sounded a different person.

I have a really bad feeling and just want to throw up, can't stop crying, can't sleep.

 
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Old 02-08-2013, 04:18 AM   #2
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Join Date: Aug 2012
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jal915 HB User
Re: Very scared :(

It sounds as if you are being kept in the dark concerning your results- which is NOT okay. Were you told the grade of your pap? Were you tested for HPV?

I do not understand how they can schedule a surgery for you without knowing the results of your biopsies.

Do you live in the United States?

If your biopsies come back CIN1 then you should be able to have a pap smear in six months. Surgery is not necessary for CIN1 as it often regresses. Mine did.

If you have CIN2, CIN3, CIS, or CC then you will for sure need to have the cells removed.

 
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Old 02-08-2013, 08:27 PM   #3
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Re: Very scared :(

I agree with jal915. Something's amiss that they're pushing for surgery without giving you a diagnosis and advising you of all your treatment options and their risks and benefits. And you may not need any treatment. Over-treatment can be just as harmful as under-treatment. This is YOUR health and you have a right to this information. If it were me, I'd want a copy of my medical records including office appt. notes, ultrasound reports, pathology reports, etc. I personally found the .gov websites about pap smears, HPV testing, and cervical changes to be more comprehensive, well organized, and easily understood than other (what would be considered) reputable sites.

I fell into the over-treatment trap and have suffered the permanent adverse effects. I regret that I wasn't more assertive and medically savvy and that I put too much trust in my gynecologist which further clouded my judgment.

 
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