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Is this True: Grade 3 clear cell, Level/Stage will be 3 or 4?

Gloria C
Posts: 23
Joined: Jun 2009

I've got Grade 3 clear cell. Haven't had surgery yet. However, was told by OB/GYN that there was a strong possibility that it would get diagnosed as Level/Stage 3 or worse (even though we are obviously hoping for Level/Stage 1 or 2); that the 3 yr survival rate at Level 3 was about 10-20%. Also, that not treating is a reasonable option. Have any of you been given that sort of dismal news and proved 'them' wrong?

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

Sounds like you've got an oncologist preparing you for the worst (not MY favorite kind of oncologist!), and yet if you read this Discussion Board you'll meet 3 other women with UPSC (a Grade 3 cancer) that caught it at Stage 1. So it DOES happen, and perhaps you will be one of those lucky ones. Because these aggressive Grade 3 cancers don't usually present symptoms until they are quite advanced, most of the time we are diagnosed at Stage 3 or even 4. But not always.

Did your oncologist actually SAY you were facing a 10 - 20% 3-year survival rate? If he did, you may want to find a more up-beat gyn-onc for your treatment after surgery! 20% may be your survival rate if you don't have adjunctive treatment, but with aggressive chemo and radiation, at Stage III-c with a Grade 3 cancer, chances of a CURE are around 60%. A CURE!

If you found that "10 t0 20%" stat on the internet, I guarantee that it was an old stat. Anything you read online that is even 2 years old is wrong; things have gotten so much better. If you have complete debulking surgery with FIGO staging, and then complete the standard 6 rounds of carbo/taxol (or equivalent); and 25 to 28 rounds of pelvic radiation; and/or 2 to 4 rounds of internal radiation; survival rates for FIGHTERS are pretty decent.

I'd never stay with an oncologist that put an expiration date on me. My chemo oncologist pronounced me as "in full remission" by my 3rd round of chemo, even though I pushed on to do all the chemo and radiation in the initial protocol. He talked "going for a cure" throughout my treatment, never wavering. He said we won't even DISCUSS recurrance until it happens, and if it does, THEN he'll stop talking about curing me and start talking about treatment just for prolonging my life. But not UNTIL recurrance will he give up the battle and the hope for a cure for me. He always says "The pronosis for your cancer isn't good, but YOUR prognosis is excellent." I choose to believe him. BIG HUGS!! ((((Gloria)))))

Gloria C
Posts: 23
Joined: Jun 2009

I swear, this has sounded like an absolute death sentence since I rec'd it this past Friday. The conversation I'm referring to was only this morning. And it was my Ob/Gyn, not my Gyn/Onc. My Gyn/Onc hasn't called since the 2nd pathology report (in all fairness, he was out until yesterday). At this point I don't even have surgery scheduled or what hospital. In the meanwhile.....the cancer grows.....

(OK, so I'm being whiney today. Sorry)

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

I cried harder for myself when I got my diagnosis than I ever have cried for anyone else in my life. I don't know what that says about me as a human being,...except that I AM human! I read those horrible survival stats on the internet: 17%; one said "0 to 5%"; but those were all OLD stats. So I know exactly what hell and dispair that you have been going through. I think we all remember those first days after "the news". ((((Gloria)))))

My gynecologist told me that until 1986 they hadn't even separated out the different kinds of endometrial cancers; they pretty much treated them all the same. So that those with Grade 3 uterine cancers really didn't have much of a chance. So the learning curve for our cancer is very new and recent, and the studies that look back 5 years (in order to get a larger sampling universe) include many women who had inadequate surgery and staging years back. And you can see why 5 year survival rates were so awful even 5 years ago, so how can you get a reliable stat?? It's HARD to get a good-sized group of people with a rare cancer to do clinical studies. I posted the results of a new study from March 2009 for Stage 2 UPSC that showed an 88% survival rate with the chemo and radiation protocol we all are getting. 88% survival! Grade 3 uterine cancer! (You can use the Search feature and probably find my post).

I remember my surgeon saying "Wow; we never find uterine cancer with a Pap test." But there are at least 4 women with UPSC who post here who discovered it initially with a routine annual PAP test, so maybe WE have something important to share with the world!

thank you
Posts: 77
Joined: Jun 2009

You CAN'T speak about treatment options or prognosis without having complete diagnosis. And this can only be done after surgery and staging. You are not allowed if you are a doctor to predict - you only speak about facts. Not treating can not be a reasonable option.... unless the patient is 100 years old with many more illnesses. Even IF survival was 20% - which means that you might be the 1 out of 5 patients who will survive would you miss this opportunity? NO!
If you read trials for patients with heart attack, you will see that a person with a major heart attack, is having a GREAT risk to have a similar major event in the next couple of years, and the survival of those patients is ranging between 30-70%. But everybody gets the treatment. The problem with cancer is that treatment is worse than disease. So many people have no symptoms, or minimal symptoms even if they have stage IV cancer. The treatment is what makes them sick - but its worth!!!
Personally when I will be diagnosed with cancer even with a survival rate of 1%, I will get the treatment. If you are unlucky once to get the cancer, you might be lucky next time and get the cure... Take care

Posts: 79
Joined: Feb 2009

My mom did not have chemo or radiation and she had upsc stage 1a. She is 85 and the oncologist did not push for treatment, altho she is doing well at this point. her hysterectomy was march 12th and i take her back for the 3 month check up on june 25th. she is a little scared and so am i. She said if the treatment would make her ill she chose not to have it altho if the oncologist would have said "do it.", i think she may have. She is taking her chances but like Linda said it's about quality of life and right now she is feeling good. They hysterectomy is hard on anyone but the elderly i think it's pretty difficult. She is back to gardening and such, and maybe also since she had a couple of mini strokes a couple of years ago he didn't push for treatment? I wish in a way she would have had something and maybe she could live more years. The oncologist said she could live to be 100!! I hope her ca125 was ok also. It was 15 before the surgery and i took her for another one 2 wks ago but i guess we'll find out soon.
Take care, and I agree, at 60, i would choose treatment for myself.
God Bless and hugs to all!!
Cookie :)

Posts: 17
Joined: Jun 2009

I was only diagnosed June 5, so we are in about the same place right now. The unknown is the hard part right now for me. I want the hysterectomy NOW and the pathology NOW so I know what I am dealing with. I am starting to realize that with cancer, you never really know, though. There are uniquenesses to each of our cases. Because of these, the statistics are to be taken with a grain of salt.

For me right now, I am kind of keeping the blinders on a bit. This is all I know for sure about my cancer: I have cancer. I have a hysterectomy scheduled for June 29. At that point a more definite pathology will be known. Until then, I must wait. I don't look at survival rates or how stages and grades are usually treated because I will not need to know that until I am presented with my specific case.

Have I read about chemo and radiation? Sure. Do I dwell on it right now? Nope. Too scary! I am taking this journey a small step at a time. This is what is working for me. I hope you can find some peace in your own mind as you start your journey.

Posts: 738
Joined: Oct 2008

First, be sure that your staging surgery is done by a gyn/onc, survival rates go up from that alone. I have a pecimistic gyn/onc and I decided to stay and be treated by him because I did not want to travel 8 hours from my support system for treatment. I knew he was prescribing the standard treatment for my diagnosis, so I have put up with his negative attitude. If I had to make the decision again I would have found another doctor. Mainly due to one single statement he made to me my first visit after surgery. He said to me "we are not winning this game." Those words have and will continue to haunt me and he should have never said them. Your physician should not give you false hope, but he should give you hope. Anyway, I say all that to say... if your doc has already made you feel hopeless, then find another doc. Find one that will give you truthful words of encouragement that nurture your hope! Don't stick with a doc who's said words that haunt you in your dark times. Just my 2 cents!
God Bless you and keep you during your journey in healing.

Gloria C
Posts: 23
Joined: Jun 2009

Thanks for the encouragement everybody. Just hope you're right & I can get through this hideous nightmare.

PJK....yes, we are in the same place. My surgery is scheduled for this Wed, the 24th. It's all happend within less than a 2 week period and my head is spinning. Like you, I've finally decided to take this one day at a time. Getting through surgery isn't as scarey as the potential results and what happens then. Absolutely terrified.

livenow09's picture
Posts: 63
Joined: Apr 2009

aloha Gloria staging can only be done after surgery; the surgeon needs to take out your innards and lay it all out on a table.. all the reproductive organs, nodes from the groin and up along the aorta along with THREE samples of washings which are scraped from the abdominal cavity (omentum); samples are taken and sent to pathology... THEN and only then can the PATHOLOGIST give a report for staging; I was Grade 3 but staged at 1A; the stats you're quoting are for stage 3 & 4; I made the same mistake confusing Grade of tumor and Staging and freaked myself out for days thinking I was a dead woman...NOT SO
good luck
PS if you look in various places you will find all manner of conflicting data about survival; keep focusing on the odds you'll be the one to survive

Gloria C
Posts: 23
Joined: Jun 2009

first pathology report from hospital - Stage 3C. Waiting for 2nd opinion, but expect worse, not better. Terrified. Have 1st Chemo Onc. consultation on Friday. Still in alot of pain from surgery, almost 3 weeks later. thought that, at least, would have been over with.

on a more positive note, I am not going through this alone. friends (one in particular) I never expected, have suddenly become closer than ever in an effort to help me fight this. thank god.

Kris Ann
Posts: 26
Joined: Jan 2009

I haven't written in a while about my mother Judy but I wanted to update and pipe in a bit.

A quick recap.. Judy had chemo/whole abdominal radiation/then brachy ending in October 2008. Her ca-125 started to go up a bit starting in december. They did a ct-scan and saw her bowel was all inflamed due to cancer invading the intestine. She ended up with a complete blockage and ended up in the hospital having to get 2 feet of intestine removed. We thought it was hopeless.. WELL GET THIS!! The pathology of the intestine was all negative for cancer.. it turned out to be twisted bunched up intestine due to that whole abdominal radiation. So basically it wasn't a recurrence like orignally thought. She did lose a ton of weight but she is slowly working to put some back on.. she can now eat whatever she wants.. and is doing better that way.

The only thing now is that he is watching a lymphnode in her abdomen.. he isn't that concerned cuz it may be a result of all the trauma from treatment and surgery. She will have a follow up ct-scan August 8th.

Ro10's picture
Posts: 1578
Joined: Jan 2009

Glad that the blockage ended up to be only inflammed bowel and not cancer. That had to be a quite a relief. I am glad she is feeling a little better. Continue to take it a day at a time. Hope the lymph node responds to treatment too. You and Judy will remain in my prayers. In peace and caring. HUGS to both of you.

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