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Anyone have atypical pap results after being NED for awhile?

Kaleena's picture
Kaleena
Posts: 1021
Joined: Nov 2009

I had my six month appointment with my doctor on May 31st.  Since I had not had a scan for a couple of years, he ordered chest x-ray and Ct of abdomin and pelvis.   Got those results last week.  All results were unremarkable.   My doctor did a PAP on the 31st.   Yesterday, June 20th, I get a call from the office with regard to my PAP results.   (I was told it only took 10 days to get results back).   Of course when I called back the office was closed so I called this morning.  Apparently, they found atypical cells in my sample.   They must have taken it twice because how long it took for them to get back to me.   I was also told that on June 18th they sent the sample in for the HPV test.   I won't know those results for about a week.

My PA told me that if that came back positive, then I would probably be ordered to have a scope to check things out.   My only concern is that on my CT Scan, there is a soft tissue mass near the vaginal cuff, but it has been there since 2007 without change.   I probably would feel better with a PET Scan since the PET Scan in 2010 showed two masses and one had 2.4 rating (not enough to be concerned) at that time.

I get a PAP smear every six months.  This is the first time that it has come back atypical since my recurrence back in 2010.  The other time it was shortly after brachytherapy treatment in 2006 which could have caused the change at that time.

Kathy

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Well I thought you were all over with the tests/results...darn it still lingering!  So they did the testing on May 31st and you just got the results yesterday???  Doesn't sound normal to me.

I can try to comment about the PAP.  When you say "atypical" is that the same as "abnormal"? If so, I had an abnormal PAP approx 1-2 years after completion of my cancer treatments.  This was with my regular GYN, not the GYN-oncologist.  I was very upset, but realized what could I do but go with his suggestion, back into his office for a hysterscopy procedure.  Doc took samples of the inside of vaginal cavity and tested the swatches.  Depending on how the coloring came out, it would show something still abnormal or normal.  Turns out I was fine and he explained this happens, and if you were a patient with no cancer history I'd not bother with the hysterscopy and see you in one year.  In my case, bingo I hit the jackpot and had the procedure.  Luckily I was fine, but come to find many are not accurate as to why we show the abnormal on tests..

Do you think the "soft tissue mass near the vaginal cuff" could be scar tissue?  This is what I have, which caused some spot bleeding 2 years ago and had quick visit to the oncologist to check it out.  Doc as well told me the PAP would show if there was something going on, and it was all clear.  FYI I had external pelvic radiation.

I had a PAP and HPV testing in January at my last 6-month checkup.  Doc told me if this one comes back fine, the new medical requirements don't suggest another PAP/HPV for 2 years.  Any one hear this one?  I trust my doc as he's always up on things, but wanted to check with the ladies on this board.

Hope I could help a little bit, but it all goes back to our health charts showing "cancer".  Therefore, we're guided in a more serious way, not just a wait and see.  Think this is part of our "new normal" life!!!

Hugs and be strong we're here for you,

Jan

 

 

 

Kaleena's picture
Kaleena
Posts: 1021
Joined: Nov 2009

Thanks, Jan:

My thoughts exactly with not sounding normal.  In fact, they told me it usually takes 10 days and I had called them on the 10th day for my other results and the girl indicated that the PAP results weren't in yet.  

I don't know why, but I get a PAP every six months since 2010.    This was the first one that was abnormal (or atypical).   Further, it may be because of my surgery in Feb of 2010 they found a lymph node with microscopic cells and since it was removed I did not have any treatment, just a wait and see approach.   Also, I still think because of my unusual circumstances whatever they mean by that.

I am also confused though because if my original test was on May 31st, where did they get the sample to send for a HPV test on June 18th?    I did hear about the 2 year requirements also, but I think that was more for those who have not had a diagnosis of cancer.  

The CRN talked about a colposcopy after getting back the HPV results.    We will see.  I am not sweating over this, but I think my husband may be.    It is because I just got a new doctor because my other doctor left for Texas.Frown

The mass could be scar tissue, because I could not take pelvic radiation because of my significant scarring.  However, most of the CT reports indicates scarring in various places and comments on the soft tissue mass.  Who knows.  Just more stuff we have to go through!

Thanks for the hugs and being there for me!   I'll keep you informed.   But in the meantime, I will be enjoying the FIRST DAY OF SUMMER!Tongue Out

Kathy

ConnieSW's picture
ConnieSW
Posts: 544
Joined: Jun 2012

It's always something, isn't it, Kathy.  Here's hoping its much ado about nothing.

 

Jan, I know the medicare guideline is for a papevery 2 years after 65 but surely that doesn't include endometrial cancersurvivors.  My pap at 65 saved my life, knock on wood.  I cringe to think if all this had happened to me a year later.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I know what you're saying but this was out of the mouth of my oncologist, so to why my comments.  I agree 100% shouldn't mean the cancer survivor population included in these new guidelines.  

We had this with mammograms a while back and do remember few of my friends cringing as only way their cancer was diagnosed was via mammogram.  

I'll see my oncologst mid July and ask him then, but if anyone can chime in, please do so.

 

Thanks

Jan

 

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

I'm still having paps every 3 months as I'm only 2 years post hysterectomy for UPSC. Before that I was having them every 6 months because I was diagnosed with vaginal cancer, an hpv driven cancer, in 2007. I'm glad I was having frequent paps because that's the way the UPSC was picked up at an early stage. 

I have had a few paps come back abnormal, I've had colposcipies, and they've reverted back to normal. She performs a pap on my vaginal wall and also on my vaginal cuff.

I know I'll always be getting frequent paps.....but not sure if it's because of the prior vaginal cancer or if she's checking for recurrence of UPSC.

I think everyone's followups are individualized, but I don't think any  cancer survivor should be following the standard protocal for pap smears, especially the new guidelines.

Kaleena's picture
Kaleena
Posts: 1021
Joined: Nov 2009

Good News:

Negative on the HPV.  Just got word today.    I'm good for another six months unless some symptoms appear.   By the way, does anyone know how long specimens are good for?     I had my PAP taken on May 31st and they used that sample to test for HPV on the 18th of June?????     Just curious.

Kathy

 

P.S.  Thanks all for the support! 

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

You have to be relieved.  Enjoy your 6 months with no tests or exams.  Sorry I don't know the answer about how long specimens are for.  Enjoy each day.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Wonderful news...not sure about specimens, but would love to know for my reference. All learn from each other don't we?

Hugs,

Jan

 

P.S.  Time for that vacation~

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Great news on the negative results!

I have no idea on how long specimens are good for, but I am sure one of the nurses on site can answer that for you...

I have a question in regards to your original post. Please forgive me for my anatomy ignorance 101. I had a radical hysterectomy in January 2013 and everything was taken out...cervix, tubes, uterus, ovaries, etc. I thought they did internal exams every 3 months of the vagina on upwards to check for re-occurences, but they did not do an actual PAP because those of us who had radical hysterectomies no longer had a cervix.... so we cannot get cervical cancer???

Isn't that what a PAP checks for or am I missing something here?

Kathy

Stabler
Posts: 47
Joined: Feb 2013

Kathy,

I am like you.  I had everything taken out on Dec 31, 2012 and did not need any further treatment. My doctor says that he will check me and do a PAP every 3 months for the first 3 years, and then move it to every 6 months as long as everything  stays clear, then once a year after the 5 year mark.  I just went back for a checkup in May, and they did a PAP and internal exam on me to check for re-occurence.  I got the results a couple days later, everything was clear.  What did your doctor do to check for re-occurence?  Just an internal exam?

 

Debbie

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Hi Debbie,

Thanks for responding!

I am on the same treatment plan as you. However, my doctor did not say anything about doing PAP smear. I assumed that was because I do not have a cervix anymore.

My first 3 month check-up I had a very thorough internal by the gynological oncologist. This week I had my second very thorough exam by his PA. Nothing has ever been said about getting any 'results.' Both times I was told everything looked good. I am being directed now  to alternate between my regular gynecologist and my oncologist every 3 months for the remainder of the 2 years, and then I will go every 6 months...once a year with the oncologist and once with my regular gyno.

I kind of wonder based on what I have read in other posts if maybe my doctor is not taking my case that seriously because I was such an early stage 1...grade 1.

Kathy

Double Whammy's picture
Double Whammy
Posts: 2268
Joined: Jun 2010

Don't you just love it when things turn out positive (or maybe negative is the best word here).  So happy for you.

Regarding "Pap smears":  Maybe vaginal vault smear is a better term?  I have them now every 6 months (for first 2 years it was every 4 months).  The most common site of recurrence of endometrial cancer is at the top of the vaginal vault they tell me.  Most recurrences typically happen in the first 2-3 years they say.   My dx was 3 years ago.  , I'm really tired of pelvic exams.  Givven I had the garden variety endometroid adenocarinoma, stage 1a, grade 1, I discussed with my gyn onc 2 weeks ago calling this over and gonig on with life.  I said "Dr. L, do you really see recurrences of this type and grade of cancer?".  He said yes and come back in 6 months.  So I will even though he also said that the longer time elapsed, the more unlikely recurrence is. 

Interesting how our follow ups for early stage low grade cancer differ, yet are pretty much the same.  My gyn oncologist still sees me and he says he'll see me until I reach 5 years.  He had a NP do my exams for a year when he was short staffed and needing to spend more time doing surgery.  I was perfectly happy with the NP.  Now he's back doing his clinics for well patients and I'm seeing him again.  I'm also perfectly happy about that because I like and trust him, but wonder if all this is "necessary" at this point.  And then I remember Hellie. 

Kathy I think you should ask if they are in fact doing or not doing a smear since it seems pretty standard for most of us, even us early stage, low grade, garden variety folks.

So we will keep on donig what we have to so we can keep on doing what we want to.

Suzanne

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