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New, from US, HPV+, AIS (CGIN)

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Preezy
New, from US, HPV+, AIS (CGIN)

Hello ladies-

ive been reading this forum ever since I got my pap results back.  Ironically I'm in the medical field as well (orthopedics, no where near GYN), I was in medical school/residency for the last 10 years or so and neglected my routine PAP smears.  My last pap was roughly 10 years ago, a traumatic experience to say the least, which was normal.

i was mostly celibate following the pap so figured I was low risk, had some serious boyfriends but I was careful.  I got married last year, I've been with my husband for almost 4 years total.  We were starting to have the discussion to start a family and I figured I should go get a check up at the OB/Gyn.  They did a routine pap, I was told my cervix was friable during the exam and the NP said it was likely stress related.

a week later I got the ASCUS results with HPV 16 and other HR HPV positive.  I was devastated, I had no idea, no symptoms whatsoever.  I'm 31, so they recommended a colposcopy.  Colposcopy was done with ECC (endocervical curettage) and the doctor took 3 cervical biopsies.  She said everything looked good, some mild changes she thought may be CIN1.  Also mentioned that I have an ectropian.  Reassured me all was well and to await the results.

well, I got the results back, the cervical biopsy was positive for adenocarcinoma in situ.  The ECC was inconclusive, stated there was scant endocervical tissue to assess but from what they could see, it all seemed normal. I was seeing my own patients when I saw the pathology report and the room started to spin.  I quietly finished my day and researched until the cows came home.

i assume the next step is a cone biopsy as AIS can be elusive with a LEEP procedure.  I've never had a surgery before, I'm worried that it will come back as invasive, I still want children with my husband, and I work at the hospital I'll likely have my procedure done at, which complicates things more, hoping for anonymity. 

My hunch is that the ECC would've been positive for AIS too had there been enough of a sample to check as AIS is glandular.  I'm wondering how the cervical biopsy itself was positive for AIS, since there was no mention of CIN.  Maybe due to my ectropian, the glandular cells were on the surface of my cervix?  Who knows.  All I can say is 2020 is at it again.  Hoping to get the cone biopsy ASAP and appreciate any insight!

this forum has been amazing, and thank all of you for sharing your stories. 

 

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Jenjen87

Hello,

Firstly, I am sorry to hear you are going through this. I recently had a very similar experience but I have come out the other end, I am a nurse too, which I feel made all this somewhat worse!

so I think the terminology is different between UK & US. I had a smear, cake back high grade Dyskaryosis (cell changes) and HPV 18 (high risk in the same boat as 16). I was also told I had an ectropian and I was having symptoms.

I was referred for a Colposcopy and biopsy. At Colposcopy the Gynacologist was not concerned, said maybe CIN1. Biopsy came back at severe CGIN (Cervical Glandular Intraepithelial Neoplasia- so the Glandular cells) and invasive malignancy. I was referred to a oncologist the next day and booked in for a cone biopsy. The oncologist explained that the way the endocervical canal is, the biopsies can sometimes come back as malignant, when in actual fact they are not. I had a cone biopsy and they had to take a very large biopsy as my abnormality was far spread, however it was not cancer, only CGIN, which they would have had to remove anyway.

if you do require a cone biopsy- don't be too nervous, it's not ideal however you will have a GA, you will need a few days rest and post op you have what is like period pains. I am 33 and want children, and cone biopsy don't affect your chance of this, they can increase risk of premature birth and miscarriage slightly, and in my case I may need my cervix sutured up to keep the baby in.

I do hope your situation ends up positive like mine! The good thing is, is they have caught it and you will have the appropriate treatment and hopefully put it behind you soon!
good luck xx

July 2020: Cervical smear, pain and bleeding after sex. Nurse saw an Ectropian on cervix

September 2020: Smear results HPV and high grade dyskaryosis

September 2020: Colposcopy and Biopsy showing CGIN and "small fragment invasive Malignancy".

September 2020: Cone Biopsy confirmed CGIN.

November 2020: contacted by Oncologist. Pathology revisited, actually Cancer. Returning 26/11/20 for another appointment.

stage 1a1 Cancer diagnosis. MRI 28/11/2020 to be 100% sure no lymph node involvement. 

 

 

Preezy

Thank you for your response!

I'm trying to stay positive.  My gyn called today and was wildly apologetic, she really thought everything looked good, and that she hasn't seen an AIS (CGIN) since residency herself.
She had mentioned that the area she took the biopsy from was very much on the surface of the cervix so she was surprised AIS was on the surface and the ECC itself was negative.  Either way, she referred me to a gyn oncologist to have the biopsy.  She thought I may be able to get away with a LEEP instead of cone since my changes were on the surface of the cervix but I'm going to opt for the cold knife cone instead to be extra careful.

I also read about cervical cerclage (the stitch) for pregnancy reasons.  I'm hoping that my outcome is the same is yours- I honestly don't have any symptoms and all of this has really thrown me for a loop.  Don't neglect your Paps, ladies!  Lol.

Any advice on preparing for the cone?  They do them under GA here in the US too.  Also, how did you cope with the stress?  My husband is blaming himself too but who knows how long I've been HPV+, they don't test in the US until you're 30.  Any advice would be welcome.  
What kind of surveillance are they doing for you now, and are you actively trying to get pregnant? I wonder if it'll be more challenging now.

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Jenjen87

Hello,

honestly, I think you made the right choice by opting for the cone biopsy. The trouble with CGIN is that it is in the endocervix so I believe LLETZ can often miss it and is not as good at identifying clear margins. My gyn was just as surprised that my results came back as CGIN and cancer as he suspected the biopsy would indicate I would not nd any treatment. So I feel you, it's more of a shock when the doc is equally as shocked!

The cone biopsy was very uneventful and a very easy process. I was petrified as I am an operating room Nurse and sometimes having knowledge is not the best thing, so you may feel the same.  It honestly, it was not traumatic AT ALL! The hardest part was not being able to have anyone with me at hospital because of Covid. Given there is essentially no visible wound with this procedure you st wake up feeling dopey and may have period like pains once the local anaesthetic wares off. 
I had clear margins, so now I need to have a colposcopy 6 months post op. They wait that long to make sure the cervix has healed (they suspect it would have shortened given how large the cone was) and to make sure cells have not grown back.apparently there's no point doing this until 6 months post op.

we aren't actively trying for babies, we are just trying to get home to Australia first. I don't believe conceiving itself is anymore difficult, I think it's the potential risk of miscarriage and premature birth that is the risk. However my oncologist stressed that this cone should not prevent me from having babies. 
please do keep me in the loop and any more questions you have please ask, happy to help ☺️

 

July 2020: Cervical smear, pain and bleeding after sex. Nurse saw an Ectropian on cervix

September 2020: Smear results HPV and high grade dyskaryosis

September 2020: Colposcopy and Biopsy showing CGIN and "small fragment invasive Malignancy".

September 2020: Cone Biopsy confirmed CGIN.

November 2020: contacted by Oncologist. Pathology revisited, actually Cancer. Returning 26/11/20 for another appointment.

stage 1a1 Cancer diagnosis. MRI 28/11/2020 to be 100% sure no lymph node involvement. 

 

 

Preezy

It's so nice to talk to someone who's been through it, thanks again for responding.

Did they find cancer with your CGIN?  Or was it just CGIN?  I guess I'm trying to prepare myself for everything.  Also, did they do a uterine biopsy at the same time to confirm the CGIN isn't lurking up higher?  And this may seem like a silly question but how long did you wait after your cone to have sex?  I feel like I'm racing against the clock now and am trying to conceive as early as possible.  Everything I read was 6 weeks for the cervix to heal, and if I have clear margins, I would like to try ASAP.  Or do you think it wise to wait until the 6 month follow up colposcopy?  We just want to try and have one baby and then they can perform a hysterectomy, we're fine with that.  I just hope I get the chance.  How did you cope with stress?  I'm finding it difficult to cope at times. 

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Jenjen87

Hey!

so my biopsy said cancer but in the larger specimen, only CGIN. They did not do a uterine biopsy which I do get quite stressed about still as there are "skip lesions" with CGIN. Although uncommon, still a chance I guess. If there is a possibility they will do one whilst you are asleep I would push for it, even if it is just for piece of mind!

we waited 4 weeks to have sex as they advised us. I wouldn't do it any earlier as you want it to heal as best possible. You should have your results by then too so you will feel more at ease and ready.

im of the same mindset if we want to try for kids I want to do it sooner rather than later and have a hysterectomy too. Explain your concerns to your oncologist and I'm sure he will advise when to try.

The stress was pretty awful, it's the Unknown's! My family is all in Australia and my mum had CC at 25 so all I wanted was to be with my mum and obviously couldn't be with Covid. I phoned helplines, used this forum to chat to other women, distracted myself with anything other than googling CC. I think it's important to focus on the facts and not the "what ifs" or you will really drive yourself mad. Lots of cuddles from the husband and talk! If you are stressed, talk about it!

when is your cone?

always here if you need to chat!

jen xx

 

July 2020: Cervical smear, pain and bleeding after sex. Nurse saw an Ectropian on cervix

September 2020: Smear results HPV and high grade dyskaryosis

September 2020: Colposcopy and Biopsy showing CGIN and "small fragment invasive Malignancy".

September 2020: Cone Biopsy confirmed CGIN.

November 2020: contacted by Oncologist. Pathology revisited, actually Cancer. Returning 26/11/20 for another appointment.

stage 1a1 Cancer diagnosis. MRI 28/11/2020 to be 100% sure no lymph node involvement. 

 

 

Preezy

Hi Jen-

thanks again for your response.  I'm still waiting to hear from the oncologist's office, my gyn put the referral in a few days ago so I'm just waiting for the consultation.  I think I will push for the uterine biopsy as well like you said, for peace of mind.  I am keeping busy as much as possible but my mind keeps drifting back to the what if's.  I'm just hoping to get this done ASAP so I can go back to some sense of normalcy.  
did you ever have any symptoms?  I never did/do which is why this is really throwing me for a loop.  Did your HPV clear after the Cone?  I'm hoping mine will.  
Thanks xoxo

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Jenjen87

Hey!

i completely understand, I was the same. I would distract myself it ofcourse it's difficult to not have a constant worry until you have definitive answers. Be kind to yourself but definitely stay as distracted as possible. 
If you don't have from the Gyn oncologist soon I would phone and ask for an update, but I am quite pushy like that, depends how you are.

I did actually have symptoms but not often and not particularly concerning, only pain and bleeding with sex occasionally but I did have an ectropian which these symptoms can be associated with.

I am not sure if HPV has returned yet as my cone was only 7 weeks ago and I believe you need to wait 6 months to see a) if your cervix has healed well and b) if HPV has returned. I had clear margins and was told nothing was left behind, so I'm hopeful the HPV will be gone at the 6 month check up. So in 4 months time I'll have another Colposcopy to check on everything.

I would try not to be too worried, your situation sounds very similar to mine, and my biopsies said it was cancer and it turned out fine after ofcourse a stressful time like you are having now. 
I hope this helps, reach out if you have any more questions. Thinking of you!

Jen x

 

July 2020: Cervical smear, pain and bleeding after sex. Nurse saw an Ectropian on cervix

September 2020: Smear results HPV and high grade dyskaryosis

September 2020: Colposcopy and Biopsy showing CGIN and "small fragment invasive Malignancy".

September 2020: Cone Biopsy confirmed CGIN.

November 2020: contacted by Oncologist. Pathology revisited, actually Cancer. Returning 26/11/20 for another appointment.

stage 1a1 Cancer diagnosis. MRI 28/11/2020 to be 100% sure no lymph node involvement. 

 

 

Preezy

Hi Jen-

wanted to give you an update.  I am scheduled for my cold knife cone biopsy on 11/19/20 under general anesthesia with a repeat ECC.  I'm hopeful that all will be resolved after this.  Any advice before the procedure?  She mentioned taking at least a week off from work, she even suggested two weeks off.  Do you think that's overkill?  Something about having the clot stay in place after the surgery because if it's knocked loose there may be a considerable amount of bleeding.  

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Jenjen87

Hey!

Thats great news you have it booked in! So I actually had 1.5 weeks off work. I was quite nervous and wanting to be very precautious as I had a very large cone biopsy. Be kind to yourself and give yourself plenty of time! The last thing you want to do is to get going too soon and end up with post op complications and pro long this whole situation. 
tip- after 2-3 days, go for very gentle walks to get moving, I didn't for about a week and my whole body went into spasm from just lying around which I never do!

They put a clotting agent up there (fibrillar type product) which helps it clot but this usually falls out 1-3 days after procedure.

heat pack is your friend. I had some period pains post op and my trusty heat pack was working over time, really helped me.

lastly- Netflix and chill! The thing for me post op was the waiting game. Prior to my op my biopsy had said it was cancer so I had the 7 day wait for the results which was the hardest part for me. So just do anything to keep your mind off and relax!

The op itself, was a very easy uneventful experience for me. I am a theatre nurse which made me very anxious actually as I know what goes on in there 😂 But honestly, after I was put to sleep and then waking up etc everything was very simple. Quite different to an op where you have an open wound I feel, this we don't really wake up with anything more than period pains!

good luck and please keep me posted! 

Jen xx

July 2020: Cervical smear, pain and bleeding after sex. Nurse saw an Ectropian on cervix

September 2020: Smear results HPV and high grade dyskaryosis

September 2020: Colposcopy and Biopsy showing CGIN and "small fragment invasive Malignancy".

September 2020: Cone Biopsy confirmed CGIN.

November 2020: contacted by Oncologist. Pathology revisited, actually Cancer. Returning 26/11/20 for another appointment.

stage 1a1 Cancer diagnosis. MRI 28/11/2020 to be 100% sure no lymph node involvement. 

 

 

Preezy

Hi Jen-

thanks for the advice!  My surgeon said she was going to be pretty conservative with my biopsy as she is trying to preserve my fertility as best as possible with getting all of the abnormal cells.  She did recommend two weeks but said one week would be fine if I don't exercise or do any heavy lifting.  I am a physician myself so I guess this means avoiding surgeries of my own and maybe limit the amount of sitting down and standing up.  This may be TMI, but how was going #2 during the whole Process?  I'm assuming high fiber is the way to go, any other tips in that arena?  Lol.

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Jenjen87

Hey,

Hahaha nothings TMI. You are a physician, I am a nurse, nothing is off limits 😂

I had no problems what so ever in that area, I wouldn't say I have the best bowel movements on the best of day's, but zero side effects. 
Quite honestly the only post operative things to expect are period like pains and bleeding. Just have lots of sanitary pads ready (I maybe went through 3-4 a day and wore them for approx 10 days). And ofcourse the post operative  drowsiness etc. 
I was given strong pain killers "just in case" and ended up using them for my back pain which was much worse than the pain from the operation itself. 
If I were you I would limit doing surgeries yourself for 2 weeks, even if you are feeling better rather recover well and get back to it after 2 than going earlier and feeling worse for it.

i was told no exercise for 2 weeks and no heavy lifting for 4 weeks. I went for walks.

jen xx

July 2020: Cervical smear, pain and bleeding after sex. Nurse saw an Ectropian on cervix

September 2020: Smear results HPV and high grade dyskaryosis

September 2020: Colposcopy and Biopsy showing CGIN and "small fragment invasive Malignancy".

September 2020: Cone Biopsy confirmed CGIN.

November 2020: contacted by Oncologist. Pathology revisited, actually Cancer. Returning 26/11/20 for another appointment.

stage 1a1 Cancer diagnosis. MRI 28/11/2020 to be 100% sure no lymph node involvement. 

 

 

Preezy

Hi Jen-

i wanted to give you an update- I had my cone knife cone biopsy today.  My gyn onc said she did notice a good amount of ectropion so she removed all of it with her biopsy just to be extra careful, said she took an endocervical margin and a repeat ECC.  She sounded hopeful, but now we play the waiting game, said we should probably know by Monday or Tuesday next week.  Fingers crossed!

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

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