New here, stage 1a upsc

kpro2126
kpro2126 Member Posts: 8 Member
edited October 2022 in Uterine/Endometrial Cancer #1

Hello to all of you amazing ladies,

My mom at 63, was diagnosed with upsc stage 1a. She had post menopausal bleeding and with an ultrasound a polyp was found. After D&C and hysterectomy, she was surgically staged at 1a, no lymph node involvement, no myometrial involvement, just in the polyp and some in the top layer. She did all the genetic testing and all clear there too. She is finishing her last chemo Thursday and also did brachytherapy. I find myself so worried about recurrence with this sneaky disease. I just want to thank you all for the information on this page. I have learned so much here to help my mom through this. Even though we are so scared, there is so much hope here. Reading all the long time survivor’s stories have helped me on my hardest days. I pray for you all!

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Comments

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #2

    Welcome kpro2126 and Mom,

    Yes, you have come to the right place, and we are glad you are here. I am also a 1a UPSC, dx 2018, no recurrence so far. The worry of recurrence does get better over time, but is really hard to deal with in the beginning. I am glad to see she had all of the genetic testing, and is about done with her treatment. We are here for you so keep us informed as to her progress and if you have any other questions.

    Denise

  • kpro2126
    kpro2126 Member Posts: 8 Member
    #3

    Denise,

    Thank you so much for your response, helps to know this is not a death sentence. We are from Rochester NY. Wish there was more people around our area, facing the same thing. We don’t feel so alone when we read stories on here. Thank you again

    Kristina

    https://csn.cancer.org/discussion/comment/1699107#Comment_1699107


  • Forherself
    Forherself Member Posts: 1,009 Member
    #4
    https://pubmed.ncbi.nlm.nih.gov/15389257/

    According to this article your Moms survival percentages are very good. It is so hard to stop worrying. It gets easier over time. I am also serous 1A and four years out with no recurrence.

  • kpro2126
    kpro2126 Member Posts: 8 Member
    #5

    Thank you so much! Tomorrow is her last chemo #6! I’m so proud of her! The emotional side has been so hard! Thank you again for the info, I have learned more from this board, than anywhere.

  • thatblondegirl
    thatblondegirl Member Posts: 386 Member
    #6

    Hi, kpor & Mom,

    I’m glad you’re mother is on #6! And it sounds like her prognosis is very good. Keep up your hope!

    I had endometriod adenocarcinoma, not serous, but it’s still all very scary. My cancer was in and outside of my Fallopian tube, so research studies put me in with the ovarian, and that board is very, very quiet, so the ladies here welcomed me with open arms! I’m at the 18mth post-chemo mark and have another of my 3-month follow-ups tomorrow. I’m never happy about going to that office…my ONC has a big treatment room, so it’s the site of all my infusions….but what really is stressful is waiting for the bloodwork/lab results before the visit. They make me get the CA125 antigen test every 6 weeks. It’s NOT a great indicator for me, but I still worry! Results just came in an hour ago…17!! Yay! I don’t perseverate about recurrence, but it’s always in the back of my mind and is brought forward with the follow-ups.

    This site was a lifesaver for me, too! I’m glad you found us!

    ❤️, A

  • kpro2126
    kpro2126 Member Posts: 8 Member
    #7

    Thank you so much for your response! My moms CA number before surgery was a 9, and rose after surgery ( which I hear is normal ), and has stayed around 8 or 9 through treatment. So I am not sure if it is a good indicator for her either. But I agree, waiting every time for those numbers is scary.

    ♥️

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #8
    https://csn.cancer.org/discussion/comment/1699166#Comment_1699166

    A,

    Congrats for a good visit. They are always so stressful, especially in the beginning.

    Denise

  • thatblondegirl
    thatblondegirl Member Posts: 386 Member
    #9

    Thank you, Denise & kpor! It went just fine! My nurse said, “You’re glowing!” And when ONC came in …How are you?….I said, “You’ve NEVER heard me say this before, I’m great!!”

    ❤️❤️❤️ to All,

    A

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,473 Member
    #10

    kpro2126, good that your mother went and got looked at right away. Perhaps the best thing anyone can do for themselves is listen to their body.

    I was diagnosed UPSC, Stage 1A in 2012. I can still tell you DATES of treatments and all. Even as I come up on 10 years, and that isn't until the end of the year, I still get nervous. (BTW, I had chemo and both external/brachy radiation therapy)

    Go out and LIVE!!!

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #11

    Kristina:

    I can see why you are so concerned. Like NoTime indicated, you have to be your own advocate. Your mother knows her body. If she thinks something is changing then she should bring it up to her doctors. My cancer didn’t act like textbook. Everyone is different and everyone’s cancer is a different story. With me, I knew I was getting a recurrence because of a certain pain I was getting. At first it was mild and slowly through the weeks it kept getting more frequent. I complained and they did testing. Your mother has you which you are already proactive in her health and that it terrific. It can be stressful on you though. Please take care of yourself too! This site is good to vent when you feel overwhelmed.

    My best to you mom and (((hugs))) for you.

    Kathy

  • kpro2126
    kpro2126 Member Posts: 8 Member
    #12

    Thank you both so much♥️

  • kwan78fina
    kwan78fina Member Posts: 13 Member
    #13

    My mother has recurrence of endometrial cancer and we’ve been waiting for chemo to start for weeks now. Can I ask what timelines were from biopsy to chemo initiation? We’re all so frustrated and scared of the delays causing irreparable harm.

    My mother is also losing hope and deteriorating more and more each day while we can’t get anyone at the hospital to call us back it seems. They just keep saying they sent a message to the clinical trial coordinator but I’ve heard that for the whole week.

  • suzannehmngbrd
    suzannehmngbrd Member Posts: 5 Member
    #14
    https://csn.cancer.org/discussion/comment/1700501#Comment_1700501

    Hi, I have had several delays. My biopsy was last November 2021, then my surgery got delayed due to COVID19 and a botched colonoscopy and surgery finally in 8.2.22. I was worried about these unforseen delays, and my post hysterectomy PETSCAN showed no spread, not even in lymph nodes. Started chemo 9.21.22. Of course everyone is different. I would suggest going to the hospital or office in person and ask for the person who is charge and demand help to get your mom scheduled. Alternatively, go to the hospital administrator in person. All the best.

  • suzannehmngbrd
    suzannehmngbrd Member Posts: 5 Member
    #15
    https://csn.cancer.org/discussion/comment/1699212#Comment_1699212

    May I ask, how is the external/brachy radiation therapy? I just had my first chemo session so far.

    thanks

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,473 Member
    #16

    suzannehmngbrd, radiation doesn't hurt, it may give you some side effects including fatigue and diarrhea, but you don't feel anything. I just couldn't wrap my head around it.

    P.S. - you can ask us anything!

  • suzannehmngbrd
    suzannehmngbrd Member Posts: 5 Member
    #17
    https://csn.cancer.org/discussion/comment/1700511#Comment_1700511

    Thank you so much for your response

  • suzannehmngbrd
    suzannehmngbrd Member Posts: 5 Member
    #18

    if my hysterectomy removed it and nothing in the lymph nodes and PET SCAN clear, seems 6 rounds of chemo would be enough (no tumors) then why more treatments after that? Thinking out loud I guess. Sorry

  • kpro2126
    kpro2126 Member Posts: 8 Member
    #19
    https://csn.cancer.org/discussion/comment/1700501#Comment_1700501

    my mom’s hysterectomy was a week after her biopsy results, and chemo started about a month later. Praying for you🙏🏼

  • kpro2126
    kpro2126 Member Posts: 8 Member
    #20
    https://csn.cancer.org/discussion/comment/1700514#Comment_1700514

    I do know that chemo and radiation treat different areas. Chemo is to prevent systemic recurrence, and the brachytherapy is to prevent local recurrence. My mom also got both treatments, and is 2 months out from her last chemo. Healing well, and praying for continued good health. Praying for you!

    K

  • cmb
    cmb Member Posts: 1,001 Member
    #21
    https://csn.cancer.org/discussion/comment/1700514#Comment_1700514

    The decision to have radiation or not after surgery and chemo is a tough one for most of us. In some cases, doctors advise holding off on radiation in case the cancer recurs later since prior radiation in one area can prevent it from being used again in the same area to treat a recurrence.

    But in other cases, including my own, doctors recommend having radiation after chemo to minimize the likelihood of cancer recurring in the pelvic and/or vaginal area. They did disclose, however, that radiation does not necessarily extend survivorship.

    My post-chemo CT-scan didn’t show any visible signs of cancer, but I did have a later stage, aggressive form of uterine cancer. I finally decided to go ahead with the recommended 25 sessions of external radiation. I have not recurred since treatment ended five years ago. Whether this is due to the radiation or the chemo I had or both, I’ll never know.

    A lot also depends upon the stage and type of cancer a woman has. There are women here who did not have radiation after chemo. But the NCCN guidelines do suggest that even a women with stage 1A, Grade 1 or 2 cancer, lymphovascular space invasion (LVSI) and older than 60 consider vaginal brachytherapy. Vaginal brachytherapy is also preferred for Grade 3 cancers, but treatment could also include external radiation if patient has LVSI or is older than age 70.

    As I’ve reviewed the NCCN Guidelines over the years, I’ve seen that they now recommend using radiation more often for early stage cancers than they did in the past. 

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