I’m new here ~

Suebeewon1
Suebeewon1 Member Posts: 4 Member
edited August 2023 in Uterine/Endometrial Cancer #1

May I ask why there is so little current activity? Or are questions just answered in posts that already exist?

i’m 68, and very overweight. I had issues my while live with bad periods, heavy, clotting, bad cramps. I never took off work, unless getting a D&C, which my doc used to thin my uterine lining, I guess because ablation was too permanent for someone who had no children?

fast forward ~ July 1, thought I had the flu ~ 103* temp (I’ll normal 97 - max 100 during Covid. Found to have complex cystitis- and kidney infect. (Also tripped over my dogs baby gate, and broke 2 toes on 4th of July).

then about a week ago, I started bleeding, whom I’m 18 years post menopause. So urgent care doc (who had taken care of bladder & kidne) gave me a STAT referral to a gynecologist. I went on Aug. 1, and 3 biopsies were done. 2 uterine, 1 a punch from a “cyst” at the vaginal opening.

All 3 cam back cancer - the vaginal cyst as metastatic. The first available oncology appointment is for this Tuesday, which CANNOT come fast enough!!!!

The cramps I was having prior to biopsies have magnified 10 fold in intensity, and now I feel as though I’m being tasered in there every few minutes. This is no joke!! Today I woke up with worst pain yet, and a much fuller pad of blood. Like I said, “come quickly, Tuesday!!!” I know no one who has had any of this before. (Well, technically my brother was diagnosed with liver cancer (melanoma) for 4 weeks before dying at age 50 in 98.

im also having INCREDIBLE pain in my upper right side, and in my ribs there, too ~ I have for months. I actually have a CT scan scheduled on my pelvis on 8/23. It’s been booked for 2 months. A little late, I’m guessing!!

Anyway, I just wanted to say hi, and ask about online support groups- thought I’m not 100%positive what I have yet! Uterus, crevice, vagina - but we don’t know if there’s anything outside of that.

i guess I have to wait till after the oncologist Tuesday morning.., this not knowing, or understanding, is for the birds!!

Thanks for allowing me to vent/shard a bit. I sure wish I knew how to make the cramps stop!! Ibuprofen used to do the trick in high school. It laughs now.


going to try to sleep. I sure feel like I’m gonna blow up!!!!

goidnight ~ Sue

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #2

    Hi Sue. I am sorry you have had to find us, but welcome. Please know that even though on the activity of the board has been quiet there are warriors and their loved ones keep an eye open for new posts, etc. We are here for you.

    I am glad you are getting in tomorrow to a gyn. Hopefully they will be able to help with your pain or tell you what is causing it.

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #3

    Welcome Sue! So sorry you have to deal with all this, and yes, the waiting is the worst part! Just know that we are always here for you! Some post responses when they get on-line, so responses to your messages may be infrequent, but love and positive thoughts are always here for you!

  • Forherself
    Forherself Member Posts: 1,013 Member
    #4

    So sorry to read about all your troubles. This is a very hard time. I wonder if you can't make another appointment with the urgent care to talk about all the pain you are having. You should get some relief from that. And maybe they will do the scan sooner.

    I don't know why the board is so quiet. CSN changed the format and it is a little more work to post now. I don't know of any discussion groups, but on this site if you search, there are cancer support groups. More like on the home page. We are here for you.

  • Suebeewon1
    Suebeewon1 Member Posts: 4 Member
    #5
    https://csn.cancer.org/discussion/326900/i-m-new-here

    Thanks for the welcomes!! I do NOT know why there are so many typos and misspelled words in my first post ~ I’m embarrassed that some of it doesn’t even make sense!!! Words are a passion of mine ~ I know how to spell the words I use!

    I’m happy that my appointment is tomorrow morning. Im looking forward to finding out more about what I’m dealing with, and what my treatment plan will look like.

    I did find some answers online about the increased pain I was experiencing, and have figured out how to help myself a bit more.

    Anyway, thanks for reaching out back to me, I appreciate you!!!!!

    Goodnight … I hope I can sleep before tomorrow’s appointment. 😬 This is all so new to me, nerves are still a bit jittery.

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #6

    No need to be embarrassed about your spelling! I’m a retired manager/educator and still misspell words! Praying for good news and a good plan of action!

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #7

    Sue,

    Yes, the board is more quiet than when I 1st joined, but we who have been around for a while usually try and respond as we see posts.

    We are here for you, and the lurkers, do not worry about that.

    As we are anonymous, it gives us the freedom to discuss, rant, cry, and support each other as the need arises. We do not judge misspellings, or in artful conversations. Most of us survivors have been in your shoes, experienced what you are going through and are here to help others get through some pretty dark days, depressing days. I still have PTSD from my early days trying to get diagnosed. We have heard it all, from soup to nuts.

    On a more positive note, as others have said, we are here for you, for all of the lurkers, to help you get through this time. So you can be as open as you feel comfortable, share with us as you feel comfortable, and know that we care.

    xxoo

    Denise

  • MoeKay
    MoeKay Member Posts: 493 Member
    edited August 2023 #8

    Hi Sue,

    I hope your appointment went well yesterday. Let us know how you made out when time permits. As to your question about this board being quiet lately, I think one issue may be that some posts that should be appearing on the Uterine board are being posted to the Other Gynecologic Cancer board. For example, I just checked the Gynecologic Cancers (other than ovarian and uterine) board and three of the first five posts relate to endometrial cancer. By copy of this post, I am requesting that the CSN Support Team look into this matter. Perhaps the Uterine Cancer board can be amended to state Uterine/Endometrial cancer? I believe there may be confusion on this issue and some women may not initially be aware that endometrial cancer is a type of uterine cancer.

    All the best to Sue, and thanks in advance to the CSN Support Team!

  • CSNSupportTeam
    CSNSupportTeam admin Posts: 225
    #9
    https://csn.cancer.org/discussion/comment/1707926#Comment_1707926

    Hi MoeKay,

    Thank you for your suggestion. We appreciate the feedback and will certainly look into this.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #10

    After 11 years, I now come only once or twice a week ( I used to come several times a day. I REALLY needed the ladies here). I feel bad because I remember what it was like to post and keep checking for a response. The board was more active then but even waiting an hour seemed like forever.

    it’s still too early to know much following your Tuesday appointment but hopefully a plan is starting to form. It helps so much to feel your are getting somewhere. I hope they addressed your pain and that you had someone with you at your appointment.

  • Suebeewon1
    Suebeewon1 Member Posts: 4 Member
    #11

    Hi again!

    Please know I done think anything is “wrong” because the board seemed quiet. I was (and still mostly am) confused about where to even reach out at all ~ so you guys have helped me a lot already, just knowing someone saw me!

    I had my first appointment with my oncologist, as you know. He seems very nice, has a sense of humor, which I appreciate, and lays things out very clearly.

    im supposed to hear about when my CT scan is scheduled by tomorrow ~ if not I’m supposed to call on Monday to follow up. They’re testing tumors right now to figure out the right treatment cocktail. I will start chemo after I see him again on the 23rd.

    I’m also trying to set up with a therapist already, as I have a fight with anxiety and depression already, so I just want to stay in touch with that.

    The night time pain that was SO bad is easing up. I guess it just got more aggravated with biopsies and stuff?

    its been a long day, gonna head to bed.

    I wasn’t even sure if I posted on the right board here the first time - so I do appreciate getting responses. Then I realized I was at the cancer survivor site, and I’m not that (yet). So again, thanks for responding to me ~ ESPECIALLY if I’m in the wrong place!!!!! 🙃

    Goodnight … sweet dreams!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #12

    Suebeewon1, have no fears, you are in the right place. Lots of people have come to find us prior to any diagnosis (dx) and we are thrilled for them when they find everything is ok.

    So glad to hear you are making a plan, with the doctor, your therapist, and the pain has lessened. I am a firm believer you have to like your doctor! My gyn onc was a little 'cold' and I think that is because he came from another country, but he was excellent and that is all I really cared about - I wanted him to fix me.

    There is a thread pinned to the top of the Uterine page that I think addresses chemo. If you can't find it, please just give us a shout out!

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #13

    Dear Sue,

    I’m so sorry you are going through this and in so much pain. You are definitely in the right place! This board is more quiet sometimes than others, but I spend time on the ovarian and lung cancer boards and they make this board look like Party Central! Seriously! I’ve only been around since 2020 and my faithful friends here saved me! You’ll know someday, but after surviving the cancer nightmare, there are times when coming back is a little more difficult than others. Sometimes we just need to take a little break from cancer being front and center in our minds and lives. But many of us do come back often and check in to see if we can help someone. Many come back when they have milestones to share! Like NTFC did recently! We love that!

    I hope everything goes well . The tests and waiting for results and treatment part of this is so difficult. We understand.

    Hugs, A

  • Suebeewon1
    Suebeewon1 Member Posts: 4 Member
    #14

    Thanks, BlondGirl! I’ve had some prior experience with cancer ~ my sister is a BC survivor (3rs so far). 🙌🏻 She just had melanoma diagnosed on her face, but it’s not from her BC, so that’s good news!

    im guessing that I’m not unique in that I kind of keep forgetting that cancer is now affecting me - I feel like I’m an impostor ~ that it’s not really happening, and certainly not to me!

    Your dog looks very much like mine ~ I have a shihtzu/cavalier mix, blonde & “brown” (kind of gold). Yours in your avatar is a cutie.

    Thanks again for your responses ~ I certainly understand you not wanting to hang out here as survivors!!!! I mean, I understand wanting to help ~ that would be my heart, too.

    Does anyone know of like a “currently battling, questioning, waiting” board?? Maybe my therapist might, if she’s geared to cancer patients. (Im not positive of that).

    There was a mess up on my CAT scan order, so I’m glad I called them today. (I couldn’t wait till Monday). Now I’m getting a PET scan because of pain in my ribs and stuff too. It needs prior authorization, then goes to be scheduled. That sounds like awhile!!

    Do you know if chemo could start before the scan, since we have the cancer dx already? They’re studying the tumors now, I would think we could start!!

    Did any of you bleed (like period) with yours? When did that stop, if so?

    Sorry for so much writing. Thank you for being patient with me!!! 😘

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #15

    Suebeewon1, can you share if you have been given a plan? Usually we see surgery (a complete hysterectomy) before treatment in uterine/endometrial cancers because it is not until after surgery when they can fully diagnose what type of cancer and what the treatment is.

    You are finding that you need to be your own advocate and follow up and ask questions with doctor offices. Keep doing that. I find you have to do it with everything. No one cares more about your health, finances, etc. than you.

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