Types of Uterine/Endometrial Cancer
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Forgot to say as part of genomic profiling, I got a personalized bespoke blood test created that measures circulating cancer from MY tumor, which I have taken every 3 months or so. This has been incredibly reassuring, because another blood test you'll hear about, CA-125, has some massive limitations. I used Signatera/Natera for my testing & blood test creation. Many used Foundation for the genomic profiling (again, quite different from FUNCTIONAL profiling described above). Not sure if Foundation can create a blood test. I believe another company, Caris, can do both like Natera. Clear results from my Natera test help me plan how often to do ct scans, which have some risks & reassured my team that the chemo was working. Blood tests pose virtually no risks except the pain of being poked; I combine it with my CMPs, CBCs, magnesium, & CA 125 draws to save unnecessary pokes.
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Thank you for your reply. I will join the facebook group! My mom already had the laparoscopic hysterotomy on 7/5. I wish I would've known about the functional profiling you mentioned, but i guess it is too late for that now. We have a follow up on friday 7/15 to go over the results from the procedure. She got surgery at hospital where I work so the MD called me to tell me the results were stage 1B , but did not say anything else. I'm not sure if they took out the omentum. I want to know how many lymphnodes were taken out. I will check with surgeon Friday when we see him. I also want to ask him about genetic testing. I also think that is very important. Who is the best/most known oncologist for this type of cancer, as it is so rare... Do you know anyone who specializes in MMMT research ?
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"I wish I would've known about the functional profiling you mentioned, but I guess it is too late for that now." Believe me, most of us find out too late. I was crazy researching & found out on this site only a few days before, but my gyn onc failed me in this area. My time from diagnosis to surgery was 12 days; I did manage to get in to MDA Houston in that period, who in turn assured me they knew of my local gyn onc and she was qualified to do the surgery. Hoping your mom had both ovaries and fallopian tubes removed also. Re the number of lymph nodes, her gyn onc will normally have removed any that lit up in scans plus a few more along the chains. None of mine lit up; she removed 9, hahaha. As I said, one study said 10 or more is better, even if all are clear, but surely that's arbitrary a bit? Or maybe they saw a definite prognostic benefit between 9 and 10...All of mine were clear. I guess the thought is microscopic undetectable amts of cancer can lurk in the nodes. Nothing is free; each node removed increases the risk of leg lymphedema, which interferes with quality of life, so it's a balancing act. Omentum removal is great, because MMMT often recurs there, but not all gyn oncs do it. Some remove the appendix too; I don't believe mine did. 1B? Uterine? If uterine, that means contained within the uterus, with more than 50% invasion into the uterine wall. I was at 13%. Another question will be if she had invasion of the lymphovascular space aka LVSI, and/or cancer cells in the pelvic wash aka positive washings. LVSI is a negative prognostic factor; positive washings used to mean automatic grade 3. Now some still think it's a negative factor. As she learns more, she'll find out if her tumor is microsatellite stable or unstable; low or high tumor mutational burden; hormone positive or not; specific mutations such as PTEN, KRAS (bad), ARID 1A, FBXW7, etc. These will affect her options for treatment mainly for recurrence. Many gyn oncs will say they know MMMT; they do not when pressed. It's very rare. The gyn onc in the USA who are specialists are DR. Birrer at U of Ark, formerly at Harvard & Ala; Dr. Arend at Alabama; DR Powell in St. Louis; and Dr. Santin at Yale, plus about 8 in Europe. Also, DRs. Jazaeri and Ramondetta at MDA Houston, while not quite as devoted to MMMT, are rare gyn cancer specialists and are the 2 assigned to MMMT at MDA Houston. I see Drs. Birrer, Arend, Jazaeri and my local team in Austin. Some people are quite happy at Memorial Sloan Kettering as well. Regardless of expertise, the prevailing plan posted nationally in the guidelines for frontline treatment after surgery (or sometimes before if the tumor is too big or widespread for surgery, not her case) are 6 rounds of carbo taxol plus brachytherapy (internal) or external beam radiation. Birrer and Jazaeri recommended this too. Arend did not recommend BT. The real divergence of treatment begins at recurrence or for higher stage presentations. Stage 3s are beginning to be treated with immunotherapy such as Keytruda frontline. We are all Grade 3, by the way, by definition. You will also learn from her pathology reports what carcinoma(s) she has; and what sarcoma(s). My carcinomas are endometriod (different from the word endometrial) (good) and serous papillary (very bad). My sarcoma is homologous (good, probably, or neutral).
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I just had a complete hysterectomy . Everything was negative EXCEPT pelvic washings . Diagnosed with endometrial carcinoma. Starting chemo consultation on the 20th then 1st IV treatment the next day. This all happened so fast. I'm so freaked out (overwhelmed) . I just don't understand any of this., Thanks for letting me vent. Any tips will be appreciated. Thanks
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I’m sorry you had to find this site, but glad that you did right after surgery. There’s a link in the FAQ to an older discussion that talks about what women encounter while going through chemo. See https://csn.cancer.org/discussion/296461/ladies-going-through-chemo-how-are-you-doing-or-those-just-starting-or-curious/p1
While this is an older conversation, many of the discussion points are still applicable since the initial round of chemo is often the same for many of us.
Will you be getting a port before you have chemo? Not all women do, but those of us who have did found it helpful to have during the chemo infusions.
This initial period is a very stressful time for any of us dealing with cancer since we don’t really know what to expect or how we’ll react to chemo. But as other have said it’s “doable.”
Ask any questions that you might have once you learn more about what is planned for your next steps. Also, the search function on this site is now quite good, so see the searching tips at https://csn.cancer.org/discussion/325013/searching-this-site-with-examples#latest
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mrsdoon so sorry to hear about your diagnosis. It is a very scary time. We all have been there and emerged. Something I found surprising about this cancer is the unknowns. I had to decide what treatment since there is no definite answer for each person. My pathology was changed right before my surgery to a high grade serous. Which changed a lot of things. So just know that some unknowns are normal. I am including a link to a helpful graph. I post it every once in awhile. Please feel free to come with questions, and vent. We have all been there and want to help.
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Hi All,
My wife (55) had a huge 22" diameter tumor (the size of a large watermelon) taken out last year, but they couldn't do a full hysterectomy because she coded twice. They said she was cancer free, but they checked her blood every 3 months. Then they found a small tumor and did radiation treatment.
She then had a follow up appointment, and her numbers were up so they did a biopsy and found endometrial cancer. They then did a full body scan and found tumors in the lungs. So, she has been upgraded to Stage IVB. She will be getting a biopsy on the lungs and start Chemo very soon. We are all in shock but how did they miss a tumor so large in the first place?
I guess we would like to know what to expect next. Was this life changing for all of you? What can I do as a spouse to help?
Thanks you,
D
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So sorry to read about your wife's troubles. We are here to help if we can. Your wife's diagnosis and treatment does seem puzzling. As usually a tumor that large would have had treatment after surgery. But we are not doctors. Going forward there is information here about chemotherapy. And radiation if she is prescribed that too.
There are other women here with lung nodules. Is this life changing? Certainly changed my appreciation of every day. You can help your wife by listening to her. And being there. During chemo she won't feel well, and it sounds like you are a very caring person who will help her when she needs it. You don't mention the grade or type of her tumor. It makes a difference if she was endometrioid type 1. You are welcome here with your concerns.
Sue
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They missed the tumor so large because women's health care, particularly for gyn cancers, and worst of all for uterine cancers, is not so great. They probably attributed it to weight gain from eating too much, IBS, or "harmless bloating". While your story is extreme, this happens literally every day. However, dwelling on this will not help her now (unless you decide to take legal action--completely different topic). My advice is concentrate on getting the best care possible going forward. You did not say what type of endometrial cancer she has; the type, stage, and grade will dictate her treatment to some extent. For example, I have uterine carcinosarcoma aka MMMT, Stage 1A, (by definition) Grade 3, very rare, the worst endometrial cancer of all, but early stage. Even a large tumor of some varieties might be Grades 1 or 2, which would be great news. In answer to your question, yes, this is life changing, but it doesn't necessarily have to be life-ending. We are here for you. Many have survived metastases to the lungs, and the field of treatment is expanding at a nuclear pace, finally, after over 40 yrs of no progress with uterine cancer, and unacceptably, even an 8% decline in overall survival since 1975. No other major cancer bears this stigma; not coincidentally, no other cancer receives less in funding. Times are a changing!!! We need Decorated Underwear events to catch up w/ the breast cancer folks! And we need to amplify that some types of uterine cancer are becoming just as deadly as ovarian. (My cancer, GCS, has always been a beast, whether uterine or for us, worse: ovarian, tubes, peritoneum, or unknown.) Let us know more when you know more.
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Until I hear from you, I'm guessing she had a low grade type as they did no chemo or radiation initially. Which, if so, may have been reasonable. Though yes, that huge size gives us all pause, from a suffering unnecessarily sense as much as the delay in diagnosing cancer one... Is size of tumor still a consideration? My gyn onc said they can't even decide whether or not to aggregate the tumor pieces taken from any diagnostic surgery with those from the big surgery to determine a total size. They 100% should, unless size is to be no longer a factor for treatment or prognosis.
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I was recently diagnosed with grade one adenocarcinoma endometrium, which is the lining of the uterus. The ultrasounds all indicate that there’s no masses or tumors in my uterus. I have an appointment with an oncologist in a few days. I am 75 years old young at least I felt that way before this but I am so emotionally drained right now and devastated. I basically can’t stop crying. I have never had any major surgery or a seizure in my life. I feel that this is curable, but basically I’m more afraid of the anesthesia than the surgery itself. I am terrified. I’m so afraid that I just won’t wake up or some thing will happen. I wish I was not like this, and I don’t know how to get a hold on this. 🥲
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Oh loulou12, please try to take a breath. You are not alone!
I love that you wrote 75 years YOUNG and that is wonderful. I know people who are 30 and are OLD, so you have the strength to do this and you can ask us anything. It has been quiet but I know there are women who come and look daily or regularly who will chime in when they see new warriors to welcome.
I hope you don't mind me asking, but do you have any family around you, or a friend who would be able to sit when you visit with the dr? They can take notes for you and be that second set of ears.
It is all so overwhelming. I remember it myself like it was yesterday, and like you, had never had surgery or put under. For me, I realized as got started on this all, it is a PROCESS and I had to take it one step at a time.
Again, I know some of the other ladies will be along as well!
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Loulou12,
So sorry you are anxious and upset. I invite you to read my bio by clicking the icon near my name. Perhaps it will give you some encouragement. I am in the camp of those who go for the treatment recommended and to be hands on in researching the disease actually diagnosed and self-advocating for the most effective treatment available. I also took Provera for its possible benefit (but at a higher dose). It may have been responsible for a 2-year remission. With early stage suspected, I would be realistically hopeful that surgery could offer a cure for you, if recommended by the oncologist. By all means, get a second opinion. It is likely you are not in an emergency situation. As for your terror regarding anesthesia, I think you should share that with the oncologist and/or your primary care physician. S/he can likely offer an anti-anxiety medication or link you up with a qualified therapist who can teach you self-soothing techniques (e. g., cognitive behavioral therapy or mindfulness). If you are otherwise in good health and vigor, I'd encourage you to believe you will obtain a good outcome that will enable you to have a good quality of life for awhile yet, perhaps even a normal lifespan regardless of any confirmed cancer diagnosis.
This is a very supportive and helpful board. I've read it almost daily since 2012, and I've lived with this disease since 2005 and had several different treatments for endometrial adenocarcinoma.
Best wishes. Oldbeauty
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Welcome, Loulou12. I'm sorry about your diagnosis, but glad you found this board. In addition to the great advice the women before me have provided, I would recommend that you discuss your fear of anesthesia with your gynecologic oncologist and ask about speaking with the anesthesiologist earlier than usual to allay your fears. I know that the two times I have had general anesthesia for major surgery I've met with the anesthesiologist beforehand and was able to ask any questions I had. Both anesthesiologists were extremely helpful. However, typically I didn't see the anesthesiologist until a few days before surgery. Since you are experiencing a lot of anxiety over the anesthesia at this point, I would see if your gyn-onc can arrange for you to meet with the anesthesiologist sooner rather than later to help alleviate all of your concerns. That way, you will be in the best possible state of mind and health going into your surgery.
Wishing you all he best.
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Thank you all for your support. As I stated I have never had any major surgery or have ever had general anesthesia . I of course am post Mena pause actually since I was 45 yrs.old. My GYN put me on 1 mg. Estroil without Progestrone,saying such a low dose I did not need Progesterone . Make a long story, short...May 1st had heavy bright vaginal bleeding. Had Vaginal US and biopsy (first biopsy came back inconclusive, so basically had after all the US another a couple of weeks ago. Came back as FIGO Grade 1 Adenocarcinoma Endometroid. I am devastated and cannot stop crying off and on. I saw an oncologist/GYN yesterday. He wants to do a complete Hysterectomy Robotic Da Vinci. I am constantly googling and sometimes good and other time scary. I have to stop doing this, however I am searching for all positive I guess. I am scheduled for July 3. I have to do a CT w contrast preop. That is another thing, never had that Dye before. I am so depressed . I just never thought this would happen to me. No one actually thinks they will be on this end and it is awful. I just want to be okay again and enjoy my life. I have been dealing with waiting for results, tests, etc. for the past 2 months and it is exhausting and draining. I have a vegas trip w my husband August 30th and My God, it need to go. I hope I am healed by then. I also pray being it is grade 1 that the results (staging) of okay. So depressed, tears even as I am writing this.
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