Newly Diagnosed

Prayer2023
Prayer2023 Member Posts: 33 Member
edited August 2023 in Uterine/Endometrial Cancer #1

Greetings to all you prayer warriors! We got some not so good news on Friday, but we’re trying to stay positive. After an ultrasound and D&C, I received preliminary results stating I have Endometrioid endometrial carcinoma, FIGO grade 1. My GYN told me that I will need to have a hysterectomy to start with. So, we have surgeon/doctor consultations, tests, and surgery coming up. Siteman Cancer is suppose to call me tomorrow to schedule my consultation. I don't know what stage it is yet. She also said it may be the end of the summer before I can get my surgery. I guess I don’t understand why it would take so long, when the cancer could have been there for a while and growing. My symptoms were spotting, but I have read that I could have had no symptoms at all. I’m shocked and scared!

Comments

  • cmb
    cmb Member Posts: 1,001 Member
    #2

    A cancer diagnosis is always shocking, so we’re glad you found your way here so that you can ask any questions you may have or read about other women’s experiences.

    You’ve been diagnosed with the most common form of uterine cancer, which is often caught early and more easily treated than the other, more aggressive uterine cancer types. But I know that doesn’t make it any easier for you to hear right now.

    The time period after the initial diagnosis and before surgery or other treatment starts is often the most stressful time for anyone with cancer. Once surgery and/or other treatments begin, other issues will come up, but at least you feel that you’re moving forward. Waiting is very hard.

    Right now you may find it helpful to read some of the posts at What do you wish someone had told you? 

    Please come back and let us know when you learn more about what is planned.

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #3

    I can’t get a consultation with my oncologist until July 17th. The waiting is horrible, when I know it’s growing inside of me. An addendum was just added to my diagnosis stating my Ki-67 mitotic is estimated at 50%. I don’t think this is a good sign. I don’t understand how my diagnosis can be a grade 1 and my Ki-67 can be so high. Please help me figure this out! Thank you!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #4

    I agree with cmb on glad you found us. I think we all would agree with you that waiting is the hardest part. I remember being told by my gyn to call the gyn onc's office and as - as the patient see if they had any cancels or anything earlier for you to get in. It got me in a little earlier and it helped calm me down knowing I was talking with someone who was familiar with the situation and I could ask questions to.

    I would suggest when you get in to talk to the surgeon and can ask question, ask if they going to be doing genetic testing for additional information.

    I would also suggest being very careful with Dr. Google! He has old data and it can be overwhelming to try to understand if you don't have a medical background.

    My final tip would to not be afraid of asking for something to help calm you down. This is a process and it doesn't work at our speed but availability, etc. Please try to take a breath and let us know how it is going.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #5

    Dear Prayer2023,

    I, too am sorry you needed to find us, but glad you did. Lots of love and support will come from our friends here.

    The waiting is terribly hard. I said many times between diagnosis and treatment….and with great frustration…”No one seems to be in a hurry about this but me!” A lot of it is about scheduling, but asking for a call if there’s a cancellation sometimes works. I tried to take solace in the fact that if they thought I was in real trouble they’d be moving faster! I had always assumed that if one was diagnosed with cancer they’d consider it an emergency and treat me with urgency. Yep…no…found out that’s not how it works!

    I’m the Queen of Anxiety, so I have to try hard to remain calm! Try hard to not be like me! We’re here for your questions.

    Hugs, A

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #6

    Thank you so much for the comments! Your kindness went straight to my heart! An addendum with additional results was added to my diagnosis a few day ago. Part of it was my Ki-67 results. They are at 50% and I don’t think that’s good! I don’t understand how my Grade can be #1 (which is slow growing) and my Ki-67 is at 50%, which means the cancer is multiplying at a high speed. I see my GYN today and plan to ask her. If anyone has more info on this, please let me know.

  • mluebbert67
    mluebbert67 Member Posts: 4 Member
    #7
    https://csn.cancer.org/discussion/comment/1706698#Comment_1706698

    Hi

    I understand your frustration. I was diagnosed on January 15, 2018 of leiomyosarcoma. I found out I had cancer by a fluke from an x-ray that was taken December 10. The previous month. The X-ray showed my whole left lung was black. Within one month I was diagnosed and within 45 days they took my left lung.

    I’ve gone through clinical trials, I’ve gone through cryo- ablation’s, and it will always come back. I was diagnosed 3 to 7 years I have fought for almost 5. And don’t plan on dying before 60… That gives me four more years.


    I guess what I’m saying is the doctors are going to pay attention. And being told to wait a month or three months is a good sign.

    A bad sign is when you see your doctor, panic, or have tears in his eyes when he talks to you

    So my take would be that maybe they caught it at a good time meaning they caught it early. And they have complete faith in you and your body in assisting the fight. But all means I don’t not want to sound condescending.

    Also, sometimes it takes the doctor/oncologist some time to get other collaborators together to where they come up with a good plan, the right and thorough information that is best for your individual situation and diagnosis.


    I hope this helps you. And regardless of the diagnosis, or what stage; stay strong, give yourself more credit than you do.

    Life is definitely a journey make it a good one, make it a happy one, and by all means don’t succumb and don’t give up.

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #8

    Good News! My CT showed no mets and my bloodwork came back good, so my surgery is a go on August 11th! I was given this antibacterial soap to wash my body with two times before I head to the hospital and told to sleep on clean sheets the night before the surgery. No makeup and no lotion before leaving for the hospital. Praying that my staging turns out to be really low and it is determined that I don’t need chemo and radiation. Right now, I am Endometrioid Adenocarcinoma, FIGO grade 3, endometrium.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #9
    https://csn.cancer.org/discussion/comment/1706734#Comment_1706734

    Your spirit is inspriration, mluebbert67.

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #10

    Hi all! I had my total hysterectomy on August 11 and I’m still waiting for the staging pathology report. I’ve had a few blessings so far. The surgery and cytology (pelvic washing) results were clear. I’m recovering well with a few aches and pains along the way. I’m hoping with the clear CT and pelvic washing the stage will be really low and I won’t need chemo or radiation. Also, wondering if I will need any hormone supplements…

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #11

    Cancer warriors! Just got some great news! I haven’t seen the final pathology report yet, but I received a message from the doctor stating that the final pathology report shows no residual cancer! I believe God had a big hand in this! My post-op appointment is next Monday and I will learn more. So many questions, like, “How can I go from Grade 3 (D&C diagnosis) to no residual cancer after my hysterectomy?” Thinking I may be Stage 0.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #12

    Prayer2023,

    The good news is wonderful! Congrats.

    All of the terminology is very confusing. I think you might be confusing stage and grade. Grade is how aggressive a tumor is, stage is how far the cancer has spread. I was dx with UPSC, (uterine pappilary serous carcinoma) which is almost always a Grade 3 cancer, but staged 1a.

    I remember the docs telling me that the preliminary dx that I received from the biopsy could be changed when they did the actual hysterectomy, BSO, as that gives them precise information because they examine the uterus in it's entirety, not just a sampling.

    Here is a good explainer:

    https://www.cancer.net/cancer-types/uterine-cancer/stages-and-grades

    I am sure when you have your next appointment your docs can explain many of your questions. We all start out this journey not knowing very much about our cancers, treatments, etc. but learn a lot as we go along. We are here for you and please let us know what they say.

    xxoo

    Denise

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #13

    Hey warriors! My final pathology report came in. I have Adenocarcinoma Stage 1A , Grade 3. No residual cancer anywhere. Thank you Lord! So, I had my post-op and it looks like I will have an additional post-op on September 18. My oncologist checked my stomach, no internal check, and said unfortunately, the cancer team did not have a chance to meet yet, so I would need to come back for an internal and treatment plan. She mentioned radiation while we were there and added brachytherapy as an option in her notes that I read after my visit. I have to wait until September 18 for the official treatment plan.

    Question: I’ve heard about so many bad side effects with brachytherapy. Wondering if I should even get it… Please let me know your thoughts.

  • Icantbelieveit
    Icantbelieveit Member Posts: 27 Member
    #14

    You of course will make the final decision, but I would wait until there is additional feedback from that cancer team meeting before I ruled anything out. If it were me, I'd want to hear what the consensus was at the meeting and then decide if the side effects from what they recommend would be tolerable.


    I have a pretty good idea of what I want regarding future treatment (none), but if the team recommends I do something more, I am certainly open to considering it.

  • Forherself
    Forherself Member Posts: 1,013 Member
    #15
    https://csn.cancer.org/discussion/comment/1708551#Comment_1708551

    Hi Prayer, I can't believe I didn't see this post. You have good news from your pathology report. Mine was the same. No malignancy in the hysterectomy specimen. This was 5 years ago for me. At that time there was no information about the need for treatment or not. I had Serous type cells in my biopsy. The doctor said I could recur even if I had treatment. Treatment did not reduce the risk of recurrence in the studied. So you will have to decided for yourself. The doctor said she had 5 patients with this path report. She said none of them had recurred. One of them had treatment. I decided to have no treatment. That was years ago. It is a difficult decision. Good luck.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #16

    Hello prayer

    i was diagnosed with Stsge 3a Grade 2 endometrial adenocsrcinoma back in 2005. I had chemo. They did not do pelvic radiation because of how much I scar but I did do brachytherapy. I had no problems with the brachytherapy.

    my best to you

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