Stage 3 Uterine/endometrial cancer

jeremiad
jeremiad Member Posts: 3 Member
edited August 2022 in Uterine/Endometrial Cancer #1

Call me Sandy, Jeremiad came on here to find support and information. Thanks for all you do.

Here goes...... 61 years young, think of myelf as very healthy. I feel great physically. After my Hysterectomy June 1, I was told that "they got it all" by the surgeons chain of command. On June 13, they got ahold of me from the Oncologists and told me that there would be a visit on June 6th. I could not go to the appt, I had come down with a cold/virus that spiked a fever.

Instead of a doctor visit, I got a phone call. I couldn't understand as the hard info she gave me, was grasped by me while she moved on to other topics. In short, I got lost.

I am still thinking how is it going to make me better, to make me sick on purpose?

My single reachout was on Facebook support group of women with Uterine cancer, where the replies are frightening. Stories of blood transfusions, muscle and skeletal pain, foggy brain etc. My heart tells me to not pump myself full of poison and to leave it with God. My head says talk to the doctors more and get some clarity. My doctors are rushing me it seems. I just need more information, and I am craving it, and frightened of it at the same time.

I want to live to be as old as my mom, who is 96. It seems that the treatment is worse than the natural course of events. I need help, please only I can make the decisions, but I am ignorant and this is an attempt to get smarter. Help, I am drowning.... Sandy.....

Comments

  • MotivatedMom
    MotivatedMom Member Posts: 2 Member
    #2
    https://csn.cancer.org/discussion/325376/stage-3-uterine-endometrial-cancer

    Thought all these posts were out of date and this looks like you are here tonight. (I guess folks go to social media nowadays for support and info). I feel like a super young 60 something with a serious job and a mother with teen to raise. I was diagnosed June 1 with high grade endometrial cancer. This was not calculated into my plans and I am just beginning to adapt. Not staged yet as the covid supply chain slowdown has clearly hit the pathology labs -- 3 weeks since surgery/hysterectomy, follow up appointment delayed as results are still not in. All I can say is hang in there because I need to believe I can to beat this thing and to be around to see my child reach adulthood. I had no symptoms till January, got to the PCP in February and it took till June 22 to get my surgery. Looks like a long road ahead and I pray I can keep the panic to a minimum and my determination on high; I surely have had my moments already. My biggest worries tonight are staging; figuring out how to save my job and my insurance; to hear the treatment plan and then to quickly get a second opinion to make sure I am doing all I can. Let's be as fierce as we can. I'll check back.

  • jeremiad
    jeremiad Member Posts: 3 Member
    #3

    I wish you the best of luck. good to know we're not alone in this scary crazy dillema. I hope we can give each other strength and support as we need it. Thanks for writing MotivateMom.......Sandy

  • cmb
    cmb Member Posts: 1,001 Member
    #4
    https://csn.cancer.org/discussion/325376/stage-3-uterine-endometrial-cancer

    Sandy,

    A cancer diagnosis is always shocking and your situation is compounded by the conflicting information you’ve received. It’s unfortunate that you weren’t able to meet with the doctor in person due to your illness.

    Some women’s’ cancers are caught early and they do not need any treatment beyond surgery. But it doesn’t sound like that is the case for you. If the doctors are recommending further treatment, I assume that the pathology from your surgery came back showing the cancer had spread beyond the uterus or that it was one of the more aggressive types of uterine cancer.

    Before you make any final decision on possible treatment, I recommend you meet with your doctor to hear about their recommendations in person so that you can ask questions. And many women here have also sought a second opinion to confirm that they’re making the best decision for themselves.

    While chemo is no walk in park, it may keep you free of cancer for some period of time or even the rest of your life, depending upon your cancer stage and/or how well your body responds to the treatment.

    Women vary in their reactions to chemo. Some have few reactions beyond hair loss and fatigue. Others have the leg pains for 2-3 days that you read about on the other site. I was one of these. However, taking Claritin before and after the chemo infusions minimizes this discomfort.

    Certainly, cancer is stressful and can contribute to the “brain fog” that some women have. But this isn’t universal for all patients either. I was able to work part-time during most of my treatment, most of which involved significant research and detailed analysis.

    I did need one blood transfusion late in treatment, but that was when I receiving a chemo protocol which is not typical for most women with uterine cancer. This hasn’t occurred for most women here on the usual carboplatin/taxol chemos.

    Of course, there is no guarantee that chemo, radiation or even the new types of immunotherapies will work for any one person. But they are the best shot at getting beyond this cancer for those with a later stage or aggressive form of cancer. For those like me for whom chemo did work, the months I spent in treatment were worth it. But we each have to make this decision for ourselves.

    You can read the link at https://csn.cancer.org/node/296461 to learn about other women’s experience with chemo.

  • cmb
    cmb Member Posts: 1,001 Member
    #5
    https://csn.cancer.org/discussion/comment/1698153#Comment_1698153

    I’m sorry you had to find this site, but welcome. Old threads do occasionally get “resurrected” when new users initially search the site, but there are still lots of members here who either are still going through treatment or have finished.

    I hope you hear back soon about your staging and recommended next steps. Waiting is always very hard. Usually once there is a plan in place, it’s easier to deal with. Once you know what’s planned, you can talk with HR about any possible accommodation you might need for treatment and insurance coverage.

    A second opinion is always a good idea to make sure you’re comfortable with the treatment plan.

    The FAQ topic above has links to topics that you may find helpful now.

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    #6

    Hi,

    First of all, we have all heard the horror stories. Some of us have lived through them personally or with family members. However, there are new treatments all the time, and new options to relieve or prevent some of the side effects. When I had chemo, they gave me a medication during the infusion to alleviate nausea and it worked really well for me.

    A second opinion would be a good idea, and hopefully you can have a good, thorough conversation so you understand the treatment plan and what side effects are likely. Most people have some, but not all.

    Maybe you can think of it that the chemo is making the CANCER sick and die, and you have to put up with some of the effects, much like the surgeon had to cut through healthy tissue to remove the cancer. The healthy tissue heals back, and many of us have healed back after chemo.

    For what it's worth, you can live a long time after cancer. My great grandmother died in the 1960s at the age of 94, and she had had three different cancers in her lifetime, and that's not what she died from.

  • MotivatedMom
    MotivatedMom Member Posts: 2 Member
    #7

    Good morning all. It's Friday. On Monday, I received "tentative" excellent news that my surgery was a success and all that was removed looks good, Stage 1. That was a turnaround, as the initial pathology was rather dire. All is being re-evaluated by a tumor board to ensure that the initial pathology just happened to be the dense part of the tumor and just a wee percentage of the overall tissue and that they may recommend a round of chemotherapy to ensure it does not come back. That said, I agree with the second opinion side of things so I am having all my records sent to the leading cancer hospital and confirming today that my insurance will cover that second opinion. Surgeon says I should think of myself as Cancer-Free as they removed all my female parts in addition to lymph nodes, a pelvic wash and samplings of the belly. It has taken me all week to change my mindset from anticipating the worst to anticipating recovery. I have been distracted and tired all week. Today I am finally ready to take on the world and move forward. Hope everyone receives similar positive information in their next round with the doctors. I am "on hold" for a few more weeks while they decide the next step for my case. Be strong ladies.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #8

    Thank you for sharing your good news. Live long and prosper!

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #9

    Hi Sandy:

    I was 45 years old in 2005 when I was diagnosed with Stage 3A, Grade 2 endometrial adenocarcinoma. It was on my ovary, uterus and cervix. They were not sure where the primary was located so they determined it was mullerin type but treated it as ovarian. I had two more recurrences with some lymph node involvements. But I only had chemo and brachytherapy in 2005 and 2006. In June I just turned 62 years old. I had lysis of adhesion surgery in February and they removed a small piece of my small intestine. In 2018 they removed my rectum and piece of my large intestine and a piece of my small intestine. I had a ureter by-pass surgery in 2015 due to having brachytherapy. I continue to work full time.

    I am telling you these things to give you hope in your diagnosis. Getting a diagnosis is frightening. However, talking it out on this site is good. Sometimes we don’t want to talk about it with family as we try to protect them. If you have any questions, or just feel like talking we are here.


    Kathy

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,477 Member
    #10

    Dearest Sandy, it is overwhelming but please try to take a breathe. There is a lot of support here and if you have questions, ask them to SLOW DOWN and go over things again and again. If you are working with a gynecologic oncologist they will make the best plan for you, and there office should be prepared to WALK you through things and REPEATEDLY if you need it. You are going to need to be an advocate for yourself and hopefully you can have a good friend or family member to sit and take notes and be a second set of 'ears'. Hugs.

    MotivatedMom, happy to hear your good news. I can see where you may think this page is quiet, but there are still women and family members out here. Personally, I still struggle wit the website change some and after a recent move am just getting back in to the chat after some things settling down. Hopefully you are working with a gynecologic oncologist who will ensure you have the best solution to your diagnosis.

    Anyone can see the latest recognized standards at the NCC site: https://www.nccn.org/guidelines/guidelines-process/about-nccn-clinical-practice-guidelines

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