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LISA: a question about your diagnosis

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

I read your post about having Stage 3 Uterine Cancer, Stage 1 Ovarian Cancer, and Stage 1 Cervical Cancer, and although I replied under that post, I was afarid you would miss my response. I don't know how to send 'Personal Messages' on this Board, and I want to make sure you get my message, so I'm posting it separately.

Do you have 3 different cancers, or did the uterine cancer spread to your ovaries and cervix (which would account for the Stage III uterine cancer diagnosis)?? Ovarian cancer is very different than "uterine cancer with mets to the ovaries", with a very different treatment protocol and overall prognosis. Uterine cancer, even when it spreads elsewhere, is still considered 'uterine cancer' wherever else it travels in the body. I would consider your diagnosis "uterine cancer with mets to the cervix and ovaries."

Because the re-located cancer cells are still the same type of cancer cell, even when uterine cancer cells travel to the lungs or brain, they are treated with chemo drugs that work best for uterine cancer rather than chemo drugs specific for the cancers that ORIGINATED in those other organs. If your affected cervix and ovaries were removed during your surgery, you probably only have uterine cancer (only! what a poor word choice! sorry). It would truly be "lightning striking Three Times" for you to have 3 distinct different types of cancers all at once. You don't want to confuse your uterine cancer with ovarian cancer and take on all of those additional worries!! Please pull out your pathology report again and look at the GRADE of your cancer. Unless you have a Grade 3 cancer (usually papillary serous or clear cell), you probably have a MUCH better prognosis and survival rate than if you had ovarian cancer too. That would be such GOOD news for you! Please double-check your pathology report or call your oncology nurse for a clarification. I hate to see someone take on more worry than warranted; it's scary enough just to have uterine cancer!

Lisa 00
Posts: 108
Joined: Jul 2009

HI Linda,
The obgyn/onc told me that endometrioid is my cell type. He said that he doesn't consider it metasasis even though it is in everything. He indicated that the cervix and the ovaries also have endometrial tissues that can turn malignant and that "we will never know where it started." Meaning we'll never know if it was ovarian first that spread or if it was uterine that spread. He seemed to think it could easily be either. The pathology report mentioned grade 1 and grade 2 endometrioid cells. I specifically asked him if it was considered metastasis if it was in everything and he said no, that it is all one organ system or something like that. It may very well be that, technically I have "mets" to the other reproductive sites, but he didn't want to use the word metasasis which would make things more scary than he felt they should be.

My left ovary was both endometrioid and clear cell. But I only saw the clear cell part when I read the path report. My obgyn/onc didn't tell me about the clear cell part....again, probably because he didn't feel it was worth mentioning. He told me my "problem" is that the depth of myometrial invasion in the uterus was 75%.

In my path report, the clear cell area on the one ovary only mentioned "highly malignant", which I understand is about the only flavor that clear cell comes in. What I mean by saying that I shouldn't forget that I have ovarian is how nasty ovarian can be. That it can spread within the abdominal cavity just by shedding cells. Also that the clear cell was there. Theoretically some of those cells in my wash could have been clear cell even though the path report says the ovary was stage 1. Often enough I've seen on the internet how a woman has a hysterectomy, they find stage 1 pathology in the ovary, tell her she's fine, they "caught it early" and send her home with little or no treatment only to have her turn up with stage 4 pathology years later. But I'm getting the full treatment and had no evidence of tumors so hopefully we'll be able to kill any of those pesky cells that are hanging around.

It may be that I was predisposed to get cancer in everything that is reproductive. I was exposed to DES in utero. Of course there are so few DES women out there that the studies don't exist and, really, the docs just don't know if, in fact, it did have an effect.

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