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PAP identifying uterine cancer-Your opinions please

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

So ladies, I want your opinions.  I started spotting in January of 2016.  The previous November, I had been to my GYN for my annual visit and got the all clear.  When I began testing in January for the spotting ( which ultimately led to my Stage IIIc, Grade 3 adenocarcinoma dx) I found out that my GYN ( who had since retired) had not done a PAP smear in 3 years ( apparently that's the guideline) even though I was seeing him every year and I was thinking he was doing a PAP smear.  My insurance would have paid for it.  I find it also hard to believe that I could have a uterine tumor penetrate 90% of my uterus, inflitrate my right ovary, falopian tubes, and cervix and he not feel anything in November! 

I'm so angry that he did not do PAPs for 3 years.  Everything I have found online ( and my surgeon confirms) that although a PAP smear is not diagnostic for uterine cancer, there is a chance uterine cancer cells could have been seen on a PAP (if he had done them).  I have consulted a laywer and am waiting for a call back to see if I have a case.  I swear he was doing PAPs and HE DID NOT TELL ME HE WAS NOT DOING A PAP.  Hope I have a case. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1768
Joined: Jun 2015

If I was going in for pelvic exams (prior to hysterectomy of course!), I would have also assumed a pap was being done. Otherwise, what would be the point of the exam? Before cancer, I can't ever remember getting a pelvic exam that did not include a pap test. I'm sure there will be many different answers to your question. I hope you hear back soon from your lawyer.

How are you feeling these days?

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

My understanding is that while PAP tests MAY find some abnormal cells that indicate early uterine or endometrial cancer, it is not a good test for that.  However, like Cindi, I always got a PAP smear when I had my annual pelvic.

Also, I thought that 3 year guideline was fairly recently established, unless time is flying by a lot faster than I thought. (which is possible.)

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I realize the PAP test is not a good indicator. But my issue is he didn't do PAP tests when I thought he was doing them. He didn't tell me he wasn't doing them. And there is a chance (although small) there could have been some endometrial cells on a PAP if he would have done one, because the cancer had spread so extensively. 

I'm still having problems with my eyes. I'm seeing a different neurophmologist on Monday. I'm concerned about metastasis even though oncologist and current opthamologist assures me this is not caused by metastasis. Doesn't seem to be improving and it's really depressing. I am seeing a psychologist to try to keep my head in the game. Still some GI effects from internal radiation but seem to be able to control it with Imodium.  Hope it gets better.  Still some speech issues from the stroke, don't know if it totally will come back. Had to close down my private practice cause lost the dietitian working for me- her husband has a brain tumor. I saw this as a sign this was the end of the road for my business.  Otherwise I feel pretty good and am eager to get some semblance of my life back. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

As Chris pointed out, unfortunately a PAP is not the test for uterine cancer, it is for cervical cancer.  There is no test for uterine or ovarian - but I know you know that.  I have 'legal' conversations for the variety of things I come across in my job and I really think anything would be pushed back on you.  Did you ask for a PAP?  Did you ask for the results?  The doctor's office would be asked if they send out the results of a PAP and they probably say they do.  etc.....

I am glad to hear you are talking someone to deal with everything.  During the course I took over the weekend I heard that one of the things surgeons are doing for hysterectomies is scheduling physical therapy for recovery.  That is a fantastic idea!!!  It gets women MOVING when they want to move the least.  I am starting to think they should run us by a therapist to see 'how we are doing'. 

Hope things start to turn around on all the side effects.  People have no idea all the things we think and deal with.

MAbound
Posts: 1113
Joined: Jun 2016

I so get how you feel! I've thought about suing my GP too because she took such a wait-and-see attitude towards my late menopause and my rising blood sugars. I had almost all of the risk factors for this cancer and never had those brought to my attention. Patient education was not something that she ever bothered with. She sent me for two non-transvaginal ultrasounds in 2014 and March of this year so I'm pretty sure she had cancer in the back of her mind, but she never mentioned the word to me. She just likes to process patients through their appointments going through the motions of a checklist she has without doing any thinking about what she's seeing or hearing. I kick myself for being so stupid as to stay with her as long as I did, but figured I'd be changing doctors as soon as my husband retired and we move anyway. I didn't listen to my own instincts about her and put up with her being dismissive of any concerns I raised. Stupid! Stupid! During my last appointement with her she even had the nerve to say to my face that I probably know more about cancer than she does because that's not her area of interest! And I'm suppose to trust her for my overall care? My husband is a lawyer, so you'd think I'd be suing, too, but I know what that is like and just don't feel like I can add something like that to our plate. A lawsuit won't change anything and will just add to the stress we're already dealing with. It sucks, but I understand that this cancer has no screening test and I think that fact would make it difficult to win a lawsuit although most people seem to get something to settle before going to trial. Good Luck!

iloverunning
Posts: 14
Joined: Jul 2016

I'm sorry you are going through this but I Think notimeforcancer  is correct. This is going to be hard to fight. there is much more that is done than just a Pap smear During a pelvic exam. Pelvic exams should be done yearly. Pap smears have specific guidelines that have been out for at least 4-5 years now. The Uterus and ovaries are felt by doctor During a pelvic exam. He also visualizes things.  If you have had normal Pap smears for so many times than every 3 years is the guideline. when you didn't get results did you call and ask where they were?  I work in an obgyn Office and we always tell our patients if they haven't heard from us on our results Within 10 days to call. It is unfortunate your doctor didn't communicate that he wasn't doing a Pap smear but this is common not to have one done.   Also once you hit a certain age they aren't recommended either.  

ConnieSW
Posts: 1550
Joined: Jun 2012

had my life saved by a Pap test.  It may not be definitive for endometrial cancer but I am one of the women whose malignant cells were picked up and my life is valuable to me.  I tell every woman I know to continue to demand annual paps.  You never know.  I was diagnosed UPSC 1a over 4 1/2 years ago.  My doc estimated the tumor had been growing about 7 months.  Without that pap, I wouldn't have had an early dx and might not be here to write this today.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

Connie, I'm not saying it isn't possible that irregular cells will show up on a PAP that may indicate a cancer other than cervical, it is just highly unusual and it is not the standard.  I also had cells show up, along with irregular bleeding, that lead to the doctor pushing to investigate.  I did not mean any disrespect at all. 

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

 

I was post menopausal (62) when I had the well woman exam and Pap. It had been about 3 years since the last one.  I feel I was very lucky because of it.  In fact, my gyn oncologist called the results on my Pap "fortuitous".  I agree.  I had NORMAL endometrial cells on my Pap smear.  The thing is - I should not have had any endometrial cells at all at my age.  That prompted further testing (ultrasound, biopsy, the usual).  While I had only grade 1 endometrial cancer, had that sucker not been caught and waited until I was symptomatic (I never had any symptoms of postmenopausal bleeding until the biopsy) my stage may have been higher and I may have needed more treatment than surgery.  As it was, the gyn oncologist did sample lymph nodes because of the degree of penetration into the uterine wall (in my case 33%) and he just wanted to be sure. 

Had you had a Pap, it may or may not have shown anything, but it sure might have.  And just because it is not a sure thing in detecting uterine cancer, you did have a cervix - which is what Pap smears are designed to catch anyway.  Your medical record should clearly reveal that you did not have a Pap so you did not receive standard of care. 

It will be interesting what an attorney has to say.  Good luck!

Suzanne

Oh, and the screening mammogram that was ordered at that time also detected my breast cancer.  I am a firm believer in regular screenings of any kind!

 

ConnieSW
Posts: 1550
Joined: Jun 2012

haven't been the only ones on this board whose paps have picked up problems.  It would be interesting to know how often it happens. Even 1 out of 20 would be significant.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Pap found mine, also a 1a and I just had my six year NED all clear!

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

I had a PAP that came back completely clear and caused me to search all over for about 7 months before coming back to a new gyn exam that picked it up immediately.  I feel you here, it was devastating because I thought I had ruled out any problems there.  

EZLiving66's picture
EZLiving66
Posts: 1474
Joined: Oct 2015

I had a clear PAP two weeks before my endometrial biopsy that showed I had cancer.  So much for that PAP helping me.

Love,

Eldri

ConnieSW
Posts: 1550
Joined: Jun 2012

is right, it's not going to help diagnose most endometrial cancer so shouldnt be relied on.  However, for a handful of us, it's been a lifesaver.  It's just another tool.  For me, my ca125 has never been abnormal.

janaes
Posts: 800
Joined: May 2016

I started with bleeding ploblems that led me to the doctor who then gave me a sonagram (sp) and another sonagram a month later which inturn prompted a biopsy to find my cancer.  No pap smear that i know of. I will be honest though i wasnt none who really cared to much about getting tested for much of anything.  (You think I would have, being a person who already had cancer)  Right now i am just feeling i wish there were better testing for uterine cancer.  Im so glad that connie and suzannes cancers were caught early with a pap test and if they could find something that workedbetter it would save lives a lot less people would need chemo.  Sounds good to me.  These side effects arent so fun and im sad that CQ has them.  I hope thing get better for you. 

Nellasing
Posts: 529
Joined: Oct 2016

I went in because I was experiencing bleeding- my DO did an exam and pap and sent me for ultra sound- I had had one in 2010 and I wanted another- pretty much the only reason I went to see her- she was gone while my results came in and her stand in sent me to a specialist for biopsy and colposcopy- the specialist is the one who told me my pap was irregular.  When my DO came back she called me and I asked why no one from their office had bothered to let me know about the pap- she said let me look- she put it through some computer program and said oh nothing to worry about- we'll recheck it in a year!!!!  Had I relied on that the cancer would have been much worse.  I was fortunate that there was a stand in Dr. that sent me to the specialist because of course by then I was stage 3a, grade 3.   (((Hugs))) and prayers for us all <3 <3

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

I had a normal Pap two months before I started having bladder problems which it turned out were caused by my endometrial cancer. Five months after those problems started my cancer was diagnosed when I had a biopsy. The Pap I had at that time did show the cancer, which had spread to my cervix.

EZLiving66's picture
EZLiving66
Posts: 1474
Joined: Oct 2015

My cancer had spread to my cervix but my PAP didn't pick it up.  I asked why and they said it all depended from what part of the cervix the swab was taken.  My PAP came back normal two weeks before my biopsy showed UPSC, Stage II cancer.  And, I've never had an abnormal CA125 either.

Love,

Eldri

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

Hello, dear sisters! You are and will always be in my hopes and prayers. My stage 3a UPSC was diagnosed by a Pap test- rare for uterine cancer. Cheese, Pap tests usually only diagnosed cervical cancer. Having said that, in my case it picked up the residual blood -my only symptoms were 2 tiny drops of blood on my panties 2 days earlier. DX: uterine adenocarcinoma. I had had a Pap test prior to my Dx by - I now believe- an incredibly incompetent gynecologist who had done a Pap test earlier and biopsy earlier. Damn, I should've realized she was incompetent but like me so many of us TRUST these yahoos. So much for the governing boards who govern these incompetents. Cheese, get your medical records and your insuranice reports that describe exactly what you were billed for. Sue the SOB if the information suggests fraud. As for your eyes, these symptoms may be due to your stroke. Seek the advice of a neurologists and/or opthomalogist.

I wish you the very best,

Cathy

 

pinky104
Posts: 574
Joined: Feb 2013

I had an annual pap test every year, but nothing was ever found in it, even though I was diagnosed at stage IVb.  I had a GP doing my pap for a few years, but he got out of practicing medicine because he thought he was missing things (and he was!).  He quit about 3 years before I was diagnosed.  The last time he did my pap, he had trouble finding my cervix. I have to wonder if that was because I had so much cancer in there (a cake-like cancer formation in my omentum plus cancer in my uterus, both ovaries, and my small intestine). His nurse did call me back and she told me they had found cervical cells in the pap, so he did sample the correct site). I had a PA at my next doctor doing my exam, then I went to an ob/gyn when I had a cystocele.  Even that guy didn't find it for a year or two, and then only after I started bleeding.  So I had paps at three different places to no avail.  

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

My UPSC was also detected via my pap smear. I had atypical glandular cells showing endometrial origin in my paps......2 consecutive. All further tests, (biopsy, ultrasound, etc) came back normal. My dr told me my uterus was shedding cells when it shouldn't be, and we could sit around and wait for it to turn into cancer or do a hysterectomy now. Well, I elected for the hysterectomy, and the pathology showed a tiny nodule embedded between the inner and outer walls of my uterus. It was less than 1/2 a centimeter......but was clearly UPSC. 

So I'm in the "a pap saved my life" group. Cheese, so sorry you're going through this!! Sometimes life just isn't fair! 

Red Dahlia
Posts: 16
Joined: Apr 2016

Two years prior to my cancer diagnosis my Pap smear showed endometrial cells.  I was told normal because I hadn't gone through menopause yet, but I could have a biopsy done if I wanted. I had the biopsy and it came back with finding of disordered proliferatibe endometrium.  Told that was totally normal. Two years later stage 3A endometrial cancer diagnosis.  I'm guessing that wasn't normal!

Moped7946's picture
Moped7946
Posts: 40
Joined: May 2016

I don't think there is any way to determine whether someone has endometrial cancer without an actual tissue sample. I wasn't taken seriously about my health issues until I told my Primary Care Doc I had pain during intercourse...this after having told her I was bleeding like a stuck hog after having no periods for almost a year...passing clots, unrelenting fatigue, living in misery...they did a D & C (probably not the best idea all things considered) and tested (part of?) the tissue for cancer...I was told it probably was not cancer...it was...got a radical/total hysterctomey...was told again it probably isn't serious...found out it was stage lllc...I am not sure there are non-invasive tests available for endometrial cancer...and I am not sure why when you get older they don't do PAP tests as frequently...none of this makes any sense...

 

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

Endometrial cells on your pap can be an indicator of cancer in post menopausal women. I had endometrial cells right before my diagnosis, but I was not postmenopausal, so no red flags went up. I did have an ablation that masked thing.

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