Types of Uterine/Endometrial Cancer

cmb
cmb Member Posts: 1,001 Member

While I knew that I had an unusual type of uterine cancer when I was diagnosed, I later learned that there are a variety of uterine cancer types. And these types can be referred to in different ways, which was initially confusing for me when I first started reading this Board. So, for the benefit of our newer members, I'm recapping these below:

Most endometrial cancers are Adenocarcinomas. If caught early, surgery may be the only treatment needed.

Less common types of uterine cancer include:

●     Serous carcinoma (also referred to as UPSC or Uterine papillary serous carcinoma)

●     Clear cell carcinoma

●     Undifferentiated/dedifferentiated carcinoma

●     Carcinosarcoma (previously called malignant mixed Müllerian tumors or MMMT)

These less common types tend to grow and spread faster than adenocarcinoma.

This is a simplified list of the different endometrial cancer types, based on how the NCCN Guideline identifies them for different treatment protocols. And it generally matches the types of uterine cancer most members here have (or had).

And to make it more challenging, one person's cancer may contain a mix of types. When there's a mix of types, the treatment protocol is usually based on the more aggressive cancer type.

The ACS website also has a page on the different types of Endometrial Cancer at https://www.cancer.org/cancer/endometrial-cancer/about/what-is-endometrial-cancer.html which covers even more variations.

 There are also Uterine Sarcomas. Most of the women with these types of cancers have tended to post on the Sarcoma Board, rather than the Uterine Board.

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Comments

  • Quiltergal
    Quiltergal Member Posts: 29 Member

    It’s so scary I have battled lymphoma for years and now this..lots of friends praying for me. I will see a surgeon on the 11th. I am ready to do battle!

  • cmb
    cmb Member Posts: 1,001 Member

    I'm sorry you have to deal with this second cancer. Once you have surgery, you'll know the specifics of the stage of uterine cancer you have, although you mentioned in an earlier post that you were diagnosed with endometrial adenocarcinoma after your D&C, which as I noted above, is the most common form of endometrial cancer. This type of uterine cancer is considered the most curable, especially when caught in the early stage. Let us know what is planned after you've met with the surgeon.

  • Quiltergal
    Quiltergal Member Posts: 29 Member

    I sure dread the surgery. My husband is very supportive and loving. Just hate to deal with it but you are all dealing with it. I sure don’t want to get bogged down in any self pity. I have great praying friends. I will let you know what the surgeon says. I want this out of me asap🙁

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member

    Quiltergal, please take a breath. One cancer in a person's life is a lot, I don't know how I would deal with it a second time in my life.

    This is a day at a time, so first day is to make the meeting and the plan with the gynecologic oncologist who will make the best plan for you.

    I know you want it out of you, when my gyn onc said I needed surgery I asked him what is he doing tomorrow? 😉 I can laugh now but I was serious at the time.

    Great group of women and their loved ones here so let us know what your questions are. There are lots of good posts and information to be found here. Hugs dear.

  • Quiltergal
    Quiltergal Member Posts: 29 Member

    Thanks so much!

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member

    I had everything possible taken out, but I recovered lickety split. Really, the surgery went 100% fine.

  • Quiltergal
    Quiltergal Member Posts: 29 Member

    Thanks so much! I had a robotic surgery Monday, May 9. I am doing pretty well. There were some cells in my pelvic wash. I am waiting to here from the Doc. To see where I go from here.

  • cmb
    cmb Member Posts: 1,001 Member

    Now that it's been a few days after surgery, I hope you're continuing to feel better. I know that you'd like to hear about the next steps, but for now try to focus on doing those things that make you feel better right now.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member

    I had cancer cells (fragments really) in my washings too--"positive washings", they call it. (I'd call it negative washings myself!) That stressed me out, but I am comforted that positive washings are no longer used as a factor in staging--because it became very unclear whether they were actually a prognostic factor. My gyn onc said if you had positive washings several yrs ago, you were automatically a Stage 3. Not any more--yay!! Hope you're recovering well.

  • Quiltergal
    Quiltergal Member Posts: 29 Member

    I am doing well. The pain is controlled by Tylenol. That’s a blessing. I am somewhat concerned about the positive washing but I am just trying to get it out of my mind. The surgeon was very positive after my surgery so I feel encouraged. I will be seeing her on the 25th of May for follow up.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member

    One of my oncs (I see doctors locally in Austin plus MDA Houston & two specialists in my cancer in ALA and ARK) said the positive washings might simply be fragments left over from my diagnostic procedure by my ordinary onc, which was a very hot mess. Maybe that's true in your case as well. My local gyn onc said just bc cells are in your washings doesn't mean they are viable. Yes, move on & put it behind you. Save your strength for the next steps, if any. maybe you won't need anything else! I have a very rare aggressive gyn cancer, the worst, so I had to do chemo and radiation despite being Stage 1A, but I will cross my fingers that your case is much better prognostically!

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member

    CMB, did I say before that this post was great? Thanks. I've been on vacation.

  • Quiltergal
    Quiltergal Member Posts: 29 Member

    ‘It will be a week post surgery tomorrow. I am still really sore. Hope improvement begins soon. I am taking it easy resting a lot.

  • Forherself
    Forherself Member Posts: 961 Member

    I have been confused about adenocarcinoma and serous carcinoma. But I do read serous endometrial carcinoma is a type of adenocarcinoma.

    Clear-cell carcinomamucinous adenocarcinomaundifferentiated carcinomadedifferentiated carcinoma, and serous adenocarcinoma are less common types of endometrial adenocarcinomas. They tend to grow and spread faster than most types of endometrial cancer. They often have spread outside the uterus by the time they're diagnosed.

    Here is a link to this article. https://www.cancer.org/cancer/endometrial-cancer/about/what-is-endometrial-cancer.html

    I am just not clear on serous adenocarcinoma if they just shorten it or it is a different type of cell. Adenomatous carcinoma is cancer in glands. And I believe the endometrium is made of glands. Any clarification?

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member

    I believe the cells look different. I have GCS/MMMT, which means I have a carcinoma element and a sarcoma one. In my path reports, they examined my cells and described them. My carcinoma cells were a mix of endometrioid (better) and papillary serous, aka just serous (much worse). As you note, both are adenocarcinomas. In making these conclusions, the pathologists describe the cell appearances, noted things such as if they were rounded or not, the presence of columns or spindles, etc. Very detailed.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member

    Get better soon. As you improve and feel better, remember not to lift things, bend down, or run up & down stairs.

  • kxt1125
    kxt1125 Member Posts: 3 *

    Hello,

    My mother has a recent diagnosis of MMMT . I am an oncology nurse in Philadelphia. I have seen many types of cancers over the past 4 years in my career, but have never heard of MMMT. I am doing as much research as I can. We have a follow up appointment on Friday with surgical ONC GYN team. I want to prepare proper questions about next steps. Can you private message me or e-mail me at keltraut@gmail.com

    I would really appreciate any guidance you can provide. Thank you!

    Kelly

  • Forherself
    Forherself Member Posts: 961 Member

    Welcome. I am sorry to read about your mother's diagnosis. I am an RN too and was not well informed about endometrial cancer at all. I saved this article because explains the differences. This article says carcinosarcoma is another name for MMMT. There are others on the board who have this type and should answer soon. If you create a new comment you will receive more replies. The plus sign at the right side will do that. I include a good article explaining the different types of uterine cancer. Link. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6296248/

    Sue

  • cmb
    cmb Member Posts: 1,001 Member

    I’m sorry to hear about your mother’s diagnosis. But as you’ve learned, carcinosarcoma or MMMT is one of the more rare types of uterine cancer. I was diagnosed as Stage 3B, MMMT in 2016 and had surgery, chemo and external radiation. You can click on my username to read my profile, which describes the treatment I had.

    The two-phase chemo treatment that my medical oncologist devised is not typical of the treatment usually given to MMMT patients. I can’t say which of the four types of chemo that I had worked for me, but I haven’t had a recurrence so far.

    The current recommended front line treatment, based on some recent clinical trials is 6 cycles of Paclitaxel/Carboplatin. But as you know, there are new treatments that weren’t available when I was diagnosed. Genetic testing is important to understand which of these alternative therapies might be of benefit, so you’ll want to ask about having this type of testing done, if it hasn’t already been done.

    If you haven’t already, see the NCCN Uterine Neoplasms Guidelines at https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1473

    You may have access to these through your work, otherwise you can setup a new user account for free. The newer versions of the Guideline now recommend a more aggressive treatment approach even for early stage carcinosarcoma than in the past.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member

    Sorry to be urgent about this, but she needs surgery from a qualified gyn onc asap. Someone who has encountered MMMT frequently before if possible, but I guess not crucial...First thing to decide is if you want functional profiling. This is testing 50 or more chemos on the tumor tissue to see which it responds too, and best. You get only ONE SHOT at this (barring recurrence with enough tissue taken from a biopsy, not a given) because the tissue cannot be fixed (preserved) so it has to be sent out on surgery day & you must arrange this ahead of time. Look it up. Talk to her gyn onc. See the Nagourney Institute and others do it too. You will probably have to pay out of pocket; please do it. I missed out because my surgeon could not find a kit quickly enough. Infinite regrets. DO NOT confuse this with (1) tumor genomic profiling or (2) hereditary testing for your mom. Both are good ideas, but both are not such a rush. You can & should get tumor genomic profiling--this explains what mutations her tumor has, & what immunotherapies & targeted therapies will work, esp. on recurrence but increasingly for frontline too. This testing can be done on preserved tissue. Do it sooner rather than later though. Also your mom will need hereditary testing; this will tell her if she has any BRCAs, Lynch, Li Fraumeni etc. Most with MMMT do not have these, but if she does, she'll be considering additional preemptive surgery such as mastectomies and certainly far more frequent testing such as breast mris (better than 3D mammograms) and more frequent colonoscopies. (You as her daughter may want to consider early hysterectomy and later (after menopause) ovaries & tubes out because she has MMMT, but that's a controversial question for later.) Surgery may be Da Vinci robotic/laparoscopic, or could be more invasive, depending on her pre-surgery scans and then what the surgeon sees during surgery. This surgery will determine her stage--very important, but sadly not conclusive with GCS aka gynecologic carcinosarcoma (old name is MMMT). She'll be staged 1, 2, 3, or 4. Some stages (not all) have sub-divisions--I was Stage 1A, with 13% invasion into the uterine wall. I suggest getting the GCS confirmed at a bigger hospital. (GCS simply put will mean your mom has at least one carcinoma plus a sarcoma.) Is your mom's ovarian or uterine (or fallopian tubes or peritoneal general, both even more very rare. )The best thing I can do is send you to the private GCS/MMMT group on Facebook. https://www.facebook.com/groups/carcinosarcoma/permalink/8029634773729426/?comment_id=8459007117458854&reply_comment_id=8460697330623166 aka Gynaecological Carcinosarcoma aka MMMT ( Malignant Mixed Mullerian Tumour) page with 1200 members. Also, see the GCS Project, a non-profit devoted to this rare and very deadly cancer. https://gcsproject.org/ You will learn a great deal on Google, and much of what you read initially will be terribly grim. Unofficially, many of us believe the terrible statistics are out of date. As stated above, after surgery to remove everything uterus, ovaries, tubes & including the omentum (very important--make sure that's happening!) and some pelvic and para-aortic lymph nodes (one study says 10 or more is optimal), many are offered 6 cycles of carbo taxol, plus brachytherapy (internal radiation to the vaginal cuff) and external beam radiation therapy. I did the cookie cutter 6 cycles of CT plus BT. Take everything offered! Please. Do not mess around w this one--this is not normal uterine cancer, which is no picnic itself--MMMT is said to be the most aggressive cancer known. NOT the most deadly by far--this is not pancreatic Stage 4--but very aggressive & loves to recur. Her best chance to knock it out is now, frontline. I'm always jealous of the 4 types of chemo cmb received rather than just CT, but the gyn oncs as a group, balancing risks & side effects, have decided for now CT alone (usually w/ radiation) is effective and safer. You will have thousands of questions--I'll try to check in here but please join us on Facebook.