Uterine Cancer Mortality Now Neck and Neck With Ovarian Cancer

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MoeKay
MoeKay Member Posts: 477 Member

I just came across this recent article (Feb. 9, 2022), which I thought I would share: https://www.medpagetoday.com/hematologyoncology/othercancers/97107

Good news for ovarian cancer, not so much for uterine cancer, but important information to be aware of nonetheless.

I also thought it might be food for thought for some of our writers on the board.

MoeKay

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  • Forherself
    Forherself Member Posts: 966 Member
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    That was a confusing article. I don't like that he didn't cite any of the studies he referred to. "Annual uterine cancer mortality declined from 4.3 to 4.0 per 100,000 women from 1990 to 1997, then increased to 5.1/100,000 in 2019, representing a 1.7% annual increase. In contrast, ovarian cancer mortality decreased from 9.3/100,000 in 1990 to 6.0/100,000 in 2019 (-2.7%/year from 2010-2019)." A better way to say this is 1990 uterine cancer mortality was 4.4 per 100,000. In 2019 the uterine cancer mortality rate was 5.1 per 100,000. He then states the rate went up 1.7% annually. Am I missing something?

  • MoeKay
    MoeKay Member Posts: 477 Member
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    Here is a link to the Research Letter he's reporting on in his article. The Research Letter was published in the journal Obstetrics and Gynecology, Vol. 139 , Issue 3, p. 440-442, and is entitled, "The Changing Landscape of Gynecologic Cancer Mortality in the United States." https://journals.lww.com/greenjournal/Fulltext/2022/03000/The_Changing_Landscape_of_Gynecologic_Cancer.12.aspx

    If you scroll to the bottom of the above Research Letter, you will find a full list of references.

    Hope this helps, Forherself.

    MoeKay

  • Forherself
    Forherself Member Posts: 966 Member
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    Thank you Moekay. I did go read it and found this included. I was relieved to see the comments expressed so many of my concerns. It is interesting that Uterine cancer is catching up with ovarian. https://cdn-links.lww.com/permalink/aog/c/aog_139_3_2021_12_14_tprgiaquinto_21-1578_sdc1.pdf

  • Forherself
    Forherself Member Posts: 966 Member
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    Of interest, I recently submitted an enquiry about this article. It states the survival rate for the type of cancer I have...... Results

    The mean age at diagnosis was 62.40 years with postmenopausal bleeding being the most common presenting symptom. The incidence of SEIC with or without invasive tumor was 40% (48/120). Of these 48 cases; 25 cases were associated with in-situ carcinoma arising in the EPs which amounted to 52% of the total cases. The overall three year survival and disease free survival in SEIC with or without invasion were 1.9% and 0.25%, indicating the aggressive nature of the disease. I have never seen such a low survival rate for any endometrial cancer. If someone uses this article as a source I think they are using false information, or faulty information. I have not heard back from Elsevier other than they gave me a number.

  • MoeKay
    MoeKay Member Posts: 477 Member
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    Yes, I agree that the survival data contained in the Abstract of the study for which you provided the above link looks incorrect to me. Do you have free access to the full text of the study? I'm thinking it's possible that the survival data which ended up in the Abstract might be a typographical or other error, but that the full text of the study itself may have the correct survival figures. If you don't have free access to the full text of the study, you might want to consider reaching out to the Corresponding Author (the last author listed in the Abstract), whose email address appears when you click on the name.

    I know in the past, when I wanted to drill down into the data of a particular study for which I only had an Abstract, and didn't have free access to the full text, I would email the Corresponding Author to request a copy of the full text of the study. Of course, you may want to consider just posing the questions on the survival data that you originally posed to Elsevier to the Corresponding Author. You may be able to get the answers to your questions without having to read through the entire study. I know in my prior dealings with Corresponding Authors, I always found them to be very helpful.

    Good luck, Forherself!

  • Forherself
    Forherself Member Posts: 966 Member
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    Good idea. I do not have access to the whole article. I did write to Elsevier and they said they were looking in to it. I might write the authors. Indian I believe.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    I will check those numbers too, because that's not correct. However, the news on uterine cancer is not good. AARP Magazine did a cancer overview recently. Of all major cancer types, uterine was the only one where survival rates had gone down since 1975. Yes, 1975. All other cancer types made positive gains, many astronomically. Overall uterine cancer survival rates went down from 88 to 82%. Of course that includes the garden variety uterine cancer, responsible for a very high percentage of cases, and not very aggressive, not so for those of us with MMMT-E/GCS, clear cell, papillary serous, uterine sarcoma, etc. Funding for uterine cancer is the lowest of all major cancers. Let's each do what we can to change these abysmal stats.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    @ForHerself, this was quite the search--the full article is behind a paywall. I can say with full confidence these are not the right numbers for OS and DFS for ESC. With numbers like that, starting at 48 people, that would mean less than one person lived for 3 years, and a fraction of a person had a good DFS--I think not. I'm looking at serous carcinoma right now because my cancer has carcinoma and sarcoma; the carcinoma part for my tumor is part endometriod (not the same as endometrial) and part papillary serous. For serous carcinoma, I've seen 55% overall survival, better than my MMMT/GCS at 35%, though I have much reason to believe our stats need to be updated, and go upward. For serous carcinoma, an early stage is very hopeful; for mine, an early stage is great, but less decisive. The incorrect numbers are from an abstract; I wonder if they used numbers like the mortality gap ratio and called them OS and DFS. I agree that it's dreadful (and frightening for you) to make such errors in their abstract reporting, esp. as the full article is behind a paywall. Disgusting--thanks for finding the errors.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    Do you all get as frustrated as I do with seeming contradictions within one article? Who edits these? I started going down the rabbit hole of survival rates for EIC, USC, and SEIC v. MMMT and found these two statements in the same article:

    After controlling for stage and adjuvant treatment, early stage USC is associated with a high recurrence rate and poor survival. Both EIC and stage 1A USC are rare pathologies associated with good overall survival. 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960843/

  • Forherself
    Forherself Member Posts: 966 Member
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    Yes when I first was diagnosed in July 2018 after my surgery I was told my prognosis was good. But when I went searching, I was so frightened. Some of the things I learned. Staging did not used to be so common, so women who were not staged could have been incorrectly called 1A and already had metastases. That would make the recurrence rate higher than it should have been. They also used to do studies that included all types of endometrial cancer, which to me would give useless information, because the higher grade cancers are so different from endometrioid cancer. Earlier studies showed that stage 1A serous endometrial cancer showed no improvement in survival with treatment. But were they all staged? And 1A has several variations which have different recommendations and outcomes. I am a variation of 1A serous endometrial intraepithelial carcinoma. I had no malignancy in the hysterectomy specimen. That is different from someone who had 50% myometrial invasion, yet we are the same stage. I also now try and read studies that are no older than 5 or 6 years. AND everyone has different mutations which make it difficult to predict how anyone will progress. Studies are small compared to other cancers, so they can be inaccurate for predicting outcomes too. I think we all go down the rabbit hole from time to time.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    You provide some great advice; thanks. I have encountered so many of the same frustrations with researching my carcinosarcoma/MMMT-E. Thanks and bless you in your journey. I was reading that SEIC and EIC don't tend to spread much in the uterus, including into the wall, yet they often metastasize. The researchers found this frustrating. "Recent studies demonstrate that non-invasive SEIC is equivalent in malignancy prognosis to invasive stage IA SEC. SEIC often shows metastasis, even if the lesion appears limited to the endometrium. Dunton et al reported that surgically identified metastasis is detected in 30-63% of SEIC cases [13]. Goff et al found that the absence of myometrial or lymphovascular space invasions did not accurately predict the presence or absence of extra-uterine metastases [14]. Additional surgical exploration is thus required for all SEIC cases." "Histopathologically, EIC does not invade the endometrial stroma, the lymphovascular channels, or the myometrium.14 Despite minimal uterine involvement, EIC has been associated with extrauterine metastasis in 33% to 67% of cases.1517 This is a vexing clinical and management issue. There is no consensus regarding the optimal management of EIC in the literature to date."

  • Forherself
    Forherself Member Posts: 966 Member
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    My chance of recurrence is small now. My oncologist did offer treatment. But she said I could recur even if I had treatment. No one knows how to treat my stage and cancer. So I decided to do no treatment. There are studies showing no recurrence in cases like mine. No one knows. And my husband asked my gynecologist. "If you were sitting in her chair what would you do?" And she said "I don't think I would have treatment". That was almost 4 years ago.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    Moekay, it was so nice of you to post this. Even if some of the numbers on the abstract are wrong, it definitely provided food for thought. Thanks!

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    ForHerself--four years!!! Congrats!!! yes, I would bet your odds have increased a lot. I know for my cancer, the odds go up a lot after 2.5 yrs. I'm at six months on 3/15. You had a harder decision than me. I saw that some oncs don't do more treatment for your cancer and stage, unlike mine, regardless of stage. The small research I've done on your cancer because it's part of mine is that you had somewhat better odds going in than for mine. We were both Stage 1A, right, but 1A is more decisive for yours. Appears you made the right decision for you. Chemo and brachytherapy were not Disneyworld; I'm still recovering. I guess my decision was easier because MMMT/GCS is a monster, and most of us decide quickly we don't have the luxury of choices. Yours is a smaller monster. Stay well and thanks for the insights.

  • Forherself
    Forherself Member Posts: 966 Member
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    My local gynecologist and pathology report said Endometrial intraepithelial neoplasm. About 5 days before my surgery a doctor from my gynecologists office called, who I could not understand because of her thick accent, and said my diagnosis had been changed to serous endometrial intraepithelial carcinoma. She told me I needed to get CT scans done and she couldn't get me. an appointment. I was in shock. I knew the difference. I think they did some genetic testing and found that I was p53 positive. So before surgery I didn't know if I then had 6 months to live. Fortunately the scans were all clear, and no malignancy was found during staging. But I was still scared for a long time. I kept busy. So I hope your outcome is the same. NED for a long time.

  • MoeKay
    MoeKay Member Posts: 477 Member
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    Thanks, SpringerSpanielMom.

    Based on your above comment to me, there appears to be some confusion about what I posted when I started this thread. The abstract with the suspected wrong numbers was posted by Forherself. (See #6 above). What she posted was the abstract to a study conducted in India of women diagnosed with SEIC.

    I posted links to a Research Letter and an article reporting on the Research Letter. (see #1 and #3 above.) There was no abstract in anything I posted, nor did it bear any relationship to the Indian study. Just to be clear, the Research Letter for which I provided a link was authored by Rebecca L. Siegel, MPH, of the American Cancer Society. The study reported in the Research Letter utilized data from the National Cancer Institute's National Center for Health Statistics. There were no errors contained in any of the information I posted.

    In case you didn't have an opportunity to read the information for which I provided links, the following is, in part, what the Research Letter reported (in quotes):

    "Uterine corpus cancer mortality is now similar to that for ovarian cancer, and the disproportionate burden among Black women is widening.

    INTRODUCTION

    Uterine corpus (hereafter uterine) and ovarian cancers are the most common gynecologic malignancies in the United States. Although ovarian cancer mortality is steadily declining, rates for uterine cancer, which has among the largest racial disparity in cancer, increased by 2% annually from 2008 to 2018.1 How recent trends have shifted the gynecologic cancer burden and inequalities is unknown. We analyzed mortality for uterine and ovarian cancer contemporaneously during 1990–2019 by race and ethnicity."

    The entire Research Letter can be found at: https://journals.lww.com/greenjournal/Fulltext/2022/03000/The_Changing_Landscape_of_Gynecologic_Cancer.12.aspx

    Hope that clears things up!

    MoeKay

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    This is all fascinating, if quite discouraging to someone with uterine cancer. I've seen some of these stats elsewhere, as in AARP magazine. Some jump-outs for me: "...whereas uterine cancer survival has remained stagnant for 40 years". [Four decades without progress, and actually AARP reports a 6% decline in survival since 1975.] !!!! "Lack of progress for uterine cancer may relate to deficits in research investment.  For example, NCI funding for uterine cancer in 2018 was one seventh that for ovarian cancer, despite comparable fatality projected for 2021 (12,940 vs 13,770, respectively) and profound racial disparities..." One seventh!!! WTH. I knew uterine cancer was the lowest funded but gee whiz. Finally, I was aware (and sad) that black women die more with contradictory evidence on who was more likely to get my cancer, but I had read that black women were less likely to be offered a hysterectomy, instead getting only chemo, so I was surprised to read this: "The alarming disparity in uterine cancer mortality in Black compared with White women reported herein is an underestimate of the true excess burden because rates were uncorrected for higher hysterectomy prevalence among Black women".  Ladies, we need to change this absolute 9th Circle of Hell bs and also ask our oncs what they are doing to change this. Gyn Oncs made a boatload of money, at least $250-460K.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    Forherself, keep fighting. It's often a battle to get the care you need, including scans. Best wishes for continued NED!!!