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Had my Oct. 2008 hysterectomy slides re-evaluated: Now I'm in SHOCK!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

This certainly shows how "iffy" cancer pathology analysis must be! After my UPSC Stage III-c recurred, and I'd finished 10 rounds of weekly taxol, I got a clean CT/PET and was allowed to take a chemo break even though my CA125 was slightly elevated (CA125 was 142.) So we made a plan that I would come in for another CA125 in 8 weeks and see if my body was able to lower my CA125 on its own (which it did!). BUT, if my CA125 went up after my 8 week 'spring break' from chemo, my gyn-onc wanted to try me on Tamoxifen to see if that would lower my CA125. Before I was willing to consider tamoxifen at all, I asked that they review my original hysterectomy pathology to see if my particular cancer was at all hormone-receptive, as tamoxifen works best on hormone receptive cancers, and UPSC is rarely hormone receptive.

So, to be completely thorough, they asked me to get my tissue slides from Hershey Medical where my hysterectomy/optimal debulking surgery was done in October 2008. (Apparently they keep your tissue indefinitely in parafin and they can slice off pieces to re-do the pathology.)

WELLLLLLL, here's the kicker: THIS pathologist found NO papillary serous cells in my tissue slides from my hysterectomy!!! His contention is that, if there were ever any papillary serous cells (and he felt the sample was too small to be diagnostic), all of the papillary serous cancer cells were removed from the tiny polyp removed during my D&C in August 2008. The NEW pathology report says that I had (have?) Endometrioid Carcinoma Stage III. It notes that the cells are "Grade 2 with Grade 3 cytologic atypia" (in other words, still a very aggressive recurrent cancer, just not papillary serous). WHAT??????

My chemo-onc says that, even had we known this from the beginning, the treatment thus far would have been the same. Do you think that's true? Both are Grade 3 cancers, and I imagine that I would have wanted to be JUST as aggressive with my treatments. & even if I knew all of the papillary serous cells had been removed during the D&C (and this pathologist felt the tissue sample was too small to have even MADE a UPSC diagnosis based on it!!) I would have been afraid it had spread and would have wanted all the chemo & radiation I took.

My BIG question now (which I doubt no oncologist will answer), is, did I really have a recurrance?? We thought I had UPSC, which is known to recur distantly, so with a spike in CA125 and 3 lymph nodes lighting up on my PET scan, we rushed back into chemo without any biopsies to confirm the cancer. But, had they known this was endometrioid carcinoma, would they have taken a 'watch-and-wait' attitiude? (& I guess I would've fought a decision like that, so really I guess it doesn't matter!) But it is strange that NONE of these lymph nodes lit up on the PET 10 weeks later afetr 10 rounds of chemo.

For those who of you who have been studying this stuff and know some of this lingo :
This new pathology report says my cancer cells are "moderately positive for estrogen receptor" (meaning that I could take Megace or tamoxifen as an alternative to chemo as treatment options). It also says my cancer cells were/are "strongly CK7 positive"; "Weakly vimentin and p53 positive"; "progesterone receptor negative and WT-1 negative." And clearly states "The immunophenotype is not characteristic of a serous carcinoma of the endometrium."

And a final note: the pathologist at the hospital where I had my D&C could not identify the cancer type from my D&C tissue; and so my tissue slides were sent to Hershey Medical where they identified it as UPSC from the D&C, and yet they also called it 'endometrioid carcinoma' in the pathology report from my hysterectomy. 3 pathologists from 3 different hospitals and none of them seem to agree. It just shows how individual each person's cancer really is.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Wow Linda, what a conundrum! It makes one wonder how many times this occurs and if 'less diagnostic pathology' evaluation is more the norm for just a quick-and-efficient answer and on to the next case? I realize that differentiating tissue can be challenging. My inital path report with tissue from an appendectomy was presumed to be breast cancer recurrence based on essential tissue type. Then a week later when my pap smear from annual came back with abnormal endometrial cells that precipitated a endometrial biopsy and led to UPSC diagnosis. However, no primary was found from my hysterectomy/debulking surgery. It was presumed missed in a polyp removed during a D&C 2 yrs. prior. Still left with a differential diagnosis of UPSC vs OVCA, but presumed USPC. Biospy tissue of recurrence in Oct '09 was compared with breast ca tissue slides from '99 surgery and Jan '08 hysterectomy slides, confirming (??) UPSC recurrence. I think it is to some degree a matter of individual opinion and a bit of best-guess scenario.

The best thing right now is you are apparently NED!!! It is possible you did not have a recurrence -- my ca125 has spiked erratically and resolved. My gyn onc has little faith in it as a an eval tool for me but humors me by getting it checked monthly. Last one was 517 - Yikes! However we are treating a recurrence confirmed by biopsy. He wouldn't treat me without it.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

so, maybe you don't and never did have upsc, and maybe you never had a recurrence! honestly, i do believe that this is the state of the art, basically anyone's guess. the good news is still that you are in remission, and certainly i can understand you want to know exactly what you do have, though that may never happen. it is crazy, cancer is crazy, and it is ultimately a guessing game. you, above all people, do your homework, and if this is what you come up with and are facing, what on earth are the rest of us to think, who do not do your due diligence research?

i know re: radiation, that four different doctors, plus a tumor board all had a different opinion about what kind of radiation, if any, i should have! i finally went with the tumor board that recommended no radiation, and had changed my oncologist's mind so that she, too, decided no radiation. it's a bloody crap shoot. but i swear, next time i see my oncologist for my first cat scan post chemo next month, i'll have her review my hysterectomy results, plus ask re: hormone receptive or not, etc. whatever the results of the cat scan.

this is not the first time i've heard of these kinds of questions arising, errors being made, with reputable doctors, who basically can't stand not to know something, and are loath to question the work of another doctor. it's true that each individual's cancer is unique; but it's also true, that really, and truly, not alot is known about cancer and what to do about it. as an aside, my guess is, and maybe i'm wrong about this, that prostrate cancer is much more studied than is uterine cancer of any kind.

in any case, i appreciate your writing, llinda, and keeping us informed on what is going on for you. it's very helpful to us all. i'm wishing you much good luck in your attempts to solve this puzzle.

warmly,
maggie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

It is very unsettling that pathology reports are read so differently at different places by different people when lives are at stake. I think endometroid is less agressive than serous so that is good for you Linda. I don't think we will ever know if you had a recurrance. As far as I know most women with endometroid would have had the same treatment; whether you would have been treated for the swollen lymph nodes is anyone's guess. I think your prognosis sounds better. I will take more good news any day!

Diane

howdybooth
Posts: 44
Joined: Aug 2009

My sister was diagnosed with Endometrioid Carcinoma Stage II - B in February 09 and has had 2 recurrances since. I truely beleive the treatment you received is the treatment you needed. After her surgery in February, her doctor felt no other treatment was needed - no chemo - no radiation. Yet in July it was back on the vaginal cuff and she started radiation. 6 weeks after those treatments ended, a spot was found on her liver. That was removed in early January and she now has one chemo treatment left. We don't know if the chemo has killed all the cancer cells floating around, but we really pray that it has.

My point - without the UPSC diagnoses - you may not have been as agressive.......maybe your doctors wouldn't have been as agressive! We really wish now that my sister had been given a choice. I've learned a very valuable lesson the hard way.......be agreessive with you health and challenge your doctors.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

How crazy is this....This actually is one of the things I sweat about too....but in another direction. I have the regular endometroid carcinoma but worry about if I REALLY have the more uncommon one caused by a Mother's use of DES. Since my Mother took it with both my sister and myself....and since that form of cancer is much more aggressive than what I was diagnosed with...it causes me some grief.

I have asked and they assure me it is not...

Sending you hugs and hope you can get some answers......

If isn't one thing, it is certainly another around these parts!!!

Laurie

Sheila66
Posts: 4
Joined: Apr 2010
susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Hi Linda:

I haven't been on for awhile and miss everyone.

Sorry to hear about your confusion. I'm also in the same boat. After my D&C I was told Grade 3 (UPSC) but after surgery it was downgraded to Grade 2. This really concerned me since my gyn/onc did not want to do any further treatment. Then I got a second opinion from Moffitt Cancer Center in Tampa, FL. Moffitt agreed that it was Grade 2 but recommended brachy therapy to help prevent re-occurrence. Every day I think about the path report and the difference in the results.

Susie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Linda....your post was shocking indeed! So now, the question is....which "interpretation" is correct?

So, if indeed it is endometrial, Grade III I can tell you I also have endometrial, Grade II/III, Stage 3A. Your treatment for USPC was very similar except I had my radiation first and the carbo/taxol every 3weeks for 5 treatments ( I actually was scheduled for 7 treatments but could only tolerate 5). So, essentially, we had similar treatments. I have been NED since January 2009.

I have to "brush up" on some of the terminology you mentioned re: your path report.

I am SOOOO glad that you asked for another review....You are on top of things and also such an advocate for YOURSELF....Awesome! AND the rest of us, benefit from you sharing your experiences...Thank you!!

Such a confusing place you must be....and maybe some anger? I wouldn't blame you!! So, WHO can we believe???

Thinking of you and hoping for the VERY best!!

Karen

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I can't see any reason why I would believe this new opinion over the one I got initially. That's what makes conflicting opinions so wierd. How can you know which to believe?

Don't most endometrial cancinomas in older women get diagnosed, even at the earliest stages, because they have post-menopausal bleeding? I never had ANY symptoms, which really sounds more like UPSC to me than the more common endometrial cancer. Or am I wrong about the bleeding for the more typical endometrial cancer?

I appreciate everyone's input, and I don't regret the aggressive chemo and radiation I've had. When UPSC recurs, it is no longer considered curable. But I read just today that when Grade 2 or Grade 3 endometrial carcinoma recurs, it is also no longer curable. (Is that right?? Do any of you know that for sure? I just read that online.) So I don't really think it much matters which pathology report is correct. What matters is whether I actually had a recurrance or not. And now I am not as sure as I was that I did. I have a small new hope flickering here.

:D

MoeKay
Posts: 63
Joined: Feb 2004

Hi Linda:

I've never been convinced that you actually did have a recurrence (as my posts at the time of your suspected recurrence demonstrate).

Here's a link to a Gynecologic Oncology Group study which found that pathologists disagree 60% of the time on whether tissue from uterine biopsies contains cancer or not:

http://www.healthcentral.com/drdean/408/60868.html

If they can't even agree on whether it's cancer in the majority of cases, the odds seem pretty high that they're also unlikely to agree on the cell type. I also recall reading an article that said there are more errors in gyn pathology than other pathology and that second opinion reviews should be done by pathologists specializing in gyn pathology (as the above link also recommends).

If I were you, I would have another pathologist that specializes in gynecologic pathology review the slides who can serve as the "tie-breaker."

Good luck, Linda!

MoeKay

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Linda, I had NO post-menopausal bleeding. About 6 months before I was diagnosed I had a "nagging" pain in my left lower abdomen. Had vag Ultrasound, regular ultrasound, CT Scan, and Sigmoidoscopy trying to find out what the cause was. Ultrasound and CT scan said "fibroid". Then 2 weeks before my physical, I had just the smallest amount of pink tinged drainage. Saw my dr., had a D&C, got the diagnosis and then off to the GYN Onc. for the rest....He estimated I had had cancer for at least 2 years since it had eroded clear through all of the layers of the uterus. SO....that was a surprise. All very silent.

You would have had the same chemo and probably the same radiation (maybe not brachy) even if you have Endometroid Adenocarcinoma, so it would seem you are covered, regardless of the pathology report.

I honestly do not know if recurrent Stage II/III Adenocarcinoma is considered non-curable, but will need to do more research. I of course, want to believe otherwise!

I liked the idea Moe-Kay had about having a pathologist who specializes in gyn cancer review the slides. Also enlightening to see how many reports were in error.
On my path report from the D&C there was a second pathologist who confirmed the report, so they must double read those...???

I can see why you are confused.....keep us posted! Karen

kellyw314
Posts: 51
Joined: Jan 2007

Linda, I did experience the post-menopausal bleeding which was my marker to see gyn - following a D & C, I was diagnosed with a grade 3 cancerous tumor and myometrium invasion - referred to gyn/onc - following hysterectomy, path report indicated a grade 2 tumor and no lymph node involved - therefore, staged as 1-C and recommended for 27 external rad treatments - have remained NED for almost 4 years - 2nd opinions or 3rd opinions on path report a good idea!

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i had a lot of symptoms before diagnosis: indigestion, bloating, gas, aches and pains in pelvic region, and elsewhere in abdomen. finally had post menopausal bleeding which precipitated a biopsy--also inclusive. finally a d&c confirmed upsc, but also adenocarinoma, so not clear which caused the bleeding. i'm wondering if there is any way your 'recurrence' diagnosis can be disconfirmed. that would be great.
maggie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Aside from cramp like pains every day lasting 1-2 hrs, my periods came like clock work with no anomalies...so who the heck knows??

Laurie

thank you
Posts: 77
Joined: Jun 2009

I will give you my opinion as a physician. I am not an oncologist, but also in my field (rheumatology), we deal with atypical symptoms of diseases. What doctors say: unfortunately the patients don't read the textbooks, so they don't have the symptoms that we learn when we study medicine. So, we suspect and we are as aggresive as the patient can handle. Having a definite diagnosis - with biopsy - is always the best, but even the biopsy some times is confusing.
In your case: grade III endometrioid Ca if recurs has no cure - my mom has grade II stage IIIC and we have been told that. Yet, less aggressive than USPC (from what we know... might not be true. How do we know that the pathologist of all the studies were so good and accurate in their diagnosis...)
We all questioned if you really had a recurrence. I personally would have done the same - instead of going through biopsy (with the possibility of not enough tissue to be diagnostic etc), since you were able to tolerate the treatment it's good that you had it.
When I saw that the Ca 125 is going down without treatment I thought: this was not a recurrence.
So, what are you doing now? I think if there is any suspision again, I would try to biopsy the lesion.
Overall I take it as good news. Celebrate and enjoy your days - you know it better than me.
I am planning to do the same with my mom. In 3 weeks she has her 2 year - after the surgery follow up. She will have PAP and Ca 125. I am very anxious, but I have decided, if everything is still OK, since my mom has no symptoms, to forget all about cancer, studies etc. Her GYN wants an MRI regardless the results, her oncologist does not want any imaging unless there is increase in Ca 125 or symptoms. I will follow the oncologist's opinion. I will let her live her days, without the stress of results. Last summer - a year after her surgery and 6 months after the end of treatment, she was completely asymptomatic and had normal labs. She had an MRI (her oncologist was screaming: NO! DON'T DO IT). It showed a suspicious lesion. PET scan lit up. We had the option of waiting and repeat MRI in 3 months, start treatment or doing surgery of biopsy. I opted for the surgery. She had to go throught all this stress again - and not an easy surgery (since she had adhesions from the previous surgery and radiation) and all came back as inflammation.
Unfortunately medicine is not a smart science. That's why the patients always need to know all about their disease, the possible treatments and the side effects.
CELEBRATE!!!!!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I trust the wise women of this Board more than I do half of what I hear at my oncologists'. Thank you all so much for your insights and experiences. I wonder why my chemo-onc wants me to have a CT/PET done (scheduled for May 17th) when my CA125 went DOWN without chemo and my February CT/PET was NED. My chemo-onc was caught by surprise by my clear February CT/PET (which he ordered because at that time he wanted to take me off weekly taxol and switch me to Doxil). Then when I took my Gyne-onc's opinion that I take a break from chemo (an opinion my chemo-onc only agreed to reluctantly), and my CA-125 came DOWN after 2 months of NO chemo, he was surprised again. I just don't think he likes having been WRONG, and so can't believe in my unexpected remission.

I called on my own and set an appointment with my gyne-onc for a week after my CT/PET. I want to go over my new scan results with HIM and also review this new pathology report, and have him give me a side-by-side comparison of this new diagnosis vs my UPSC diagnosis, and what this might mean for my prognosis. Maybe I'm no better off. But maybe things are a tiny bit brighter for me. And, in light of this different diagnosis, does he still think I had a recurrence?

Which leads me to a new question: Are BOTH of these cancer types likely to metastisize (sp??) at distant locations? The 3 lymph nodes that lit up in my November CT/PET were all distant: 1 in my armpit; 1 in a para-aortic node near a kidney; & 1 in a node behind my stomach. I know that with UPSC, mets at DISTANT locations are very common. But is that also true of endometrioid cancer? (In other words, had we had this pathology report before my Novemver CT/PET, would they have immediately jumped to the conclusion that this was a recurrance with the nodes lighting up so far from the sight of the original cancer?)

thank you
Posts: 77
Joined: Jun 2009

From my experience with my mom and what I have seen in the studies, the answer is yes: although less aggresive, endometrioid cancer can recur anywhere. It used to be local before brachy and RT, but in patients that have had RT distal sites are usual. Overall it acts as USPC, although it is said to be less aggressive. Treatment and f/u is exactly the same in advanced stages.
The difference is in early stages. In endometrioid, if somebody is stage I, they recommend nothing or only brachy, while in USPC - because it is more aggressive, they recommend chemotherapy.
All this just from reading studies, not a scientific knowledge.
The CT/PET will be a good option, to show that nothing is there. We are all so curious what your Oncologist has to say.
Chrysoula

MoeKay
Posts: 63
Joined: Feb 2004

Clearly endometrioid cancer can spread to distant sites. In my personal experience, my gyn-onc had me get chest, abdomen and pelvic CTs for the first two years after finishing treatment when the risk of recurrence is the highest. The chest CT was because one common site of recurrence is the lung. My endometrioid endometrial cancer was a grade 2, but I was at an elevated risk of recurrence due to several poor prognostic factors, including a deeply invasive tumor and LVSI.

Do you know whether either of the pathologists was a gyn pathologist? If it were me, I would still want a gyn pathologist to review the slides and see which side he weighs in on. Also, can you assume that "grade 2 with grade 3 cytologic atypia" really means that your tumor was a grade 3? I would want to see if a gyn pathologist agrees with that conclusion and, if so, have him/her explain it to me.

In addition, I was under the impression that UPSC tumors were unlikely to be estrogen receptor positive. Would the finding that your tumor is ERP be further indication that it was endometrioid rather than UPSC?

Even though it may not matter for treatment purposes at this point, since you completed treatment assuming you had a recurrence, if it were me, I would want to definitively know what type of cancer I had.

Linda, I think that you should interpret these latest developments in your case as good news. Perhaps your cancer was not as bad as you suspected from the outset, and perhaps you didn't even have a recurrence afterall.

Please keep us posted on future developments.

MoeKay

deanna14
Posts: 733
Joined: Oct 2008

Hi friend! I have not been on here for a while. This is an interesting development! How confusing...
My personal uneducated opinion is that those nodes that lit up on your scan were simply inflammation. Maybe it is just that I choose to believe this because it is so similar to what happened to me. I had 2 para aortic nodes light up on PET/CT and biopsies were negative and now a NED CT.
The most important bit of info is that you are NED now!! I believe you are going to stay that way.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My chemo-oncologist really seems to want me to always remain in treatment, afraid any break will allow my cancer to spread. At least that's how it looks to me; he hasn't actually SAID that. My gynecologic oncologist is the one that argued (and won) for me to take this 'spring break' from chemo. I am so anxious to talk with him again.

For the 1st time in such a long time, my over-active mind is keeping me awake at night. I was enjoying my chemo break so MUCH (and still am!) but am surprised how unexpected news, even possibly GOOD news, can slap me back into cancer-focus mode. I want my gyne-onc to make some sense of this and tell me if my prognosis has changed based on this pathology. Maybe it's the impending CT/PET, as monitoring testing is always so stressful. I guess I thought my oncologists would be okay with me just having my CA125 taken every 8 weeks (timed so that my port can be flushed at the same time) and I thought I wouldn't be getting another CT/PET unless my CA125 went up sharply. But instead my chemo-onc scheduled me for another CT/PET 3 months from my last one, and scheduled it in spite of the fact that my CA125 DROPPED into the normal range on its own without further chemo. Why does he seem so sure I am about to recur again??? Why can't he believe in my remission??? That's what keeps me awake at night. It's not anything he's said. It's what he doesn't say.

thank you
Posts: 77
Joined: Jun 2009

Linda, please keep in mind that doctors should ALWAYS thing the worst. And be prepared for that. For many physicians if our patient is cured from the disease, we don't think that it is our success, but the patient's body success. BUT, if the patient has a complication or the disease is not controlled - esp if it is something that we could predict and treat, then it is OUR MISTAKE.
It is difficult to show your optimism to your patient and at the same time to say: but lets do some labs/imaging, to make sure that everything will be OK. I deal with that almost everyday: Doctor do you think I have lupus? No, I am sure you don't, but lets do some labs. So doctor you are not sure if I have lupus.
So, I think that both your doctors are happy with the new results. I find both of your doctors reasonable. I don't think they hide anything from you. Every patient is unique and every doctor's approach in difficult cases is unique. What if you totally forget the word cancer? Until 17th of May? Pretend that the new pathologist said: No cancer at all.

Chrysoula

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