Done with treatments and just want to help others!

Cass83
Cass83 Member Posts: 151 Member
in Uterine/Endometrial Cancer #1

After my hysterectomy, 6 rounds of chemo, and 3 brachytheraphy, I just want to help others now as they go through this journey (in person or online!) My follow up after treatments went well. My CA125 was 3.6, my exam was normal. I will have a CT scan, mammogram, skin cancer screening, survivorship meeting in a month, and then a few weeks later an endoscopy and colonoscopy thanks to my Lynch syndrome. (colonoscopies every year now) and then exams every 3 months, but compared to everything else, that will be a piece of cake! I love this site and the help it has given me and I just want to give back to others. I have been able to encourage some newly diagnosed people in my town (different cancers) and know that God allowed me to go through this (he didn't cause it, but allowed it) to learn from it, and help others.

Cancer does not have to mean death! They can do so much now a days! If anyone needs encouraging, just remember that :) May you find the peace that passes understanding.

Comments

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #2
    Congrats!

    I'm very excited about a program they are implementing at Fox Chase for former patients to provide telephone support for women with similar diagnosis. I have a telephone interview August 30. Although I don't think I'm physically strong enough to volunteer in person, this, I hope will be great for all involved. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #3
    Cass83, congratulations on

    Cass83, congratulations on finishing up the treatment.  I agree how much this site has helped when you can't find anyone around your particular uterine cancer and no where to turn.  You look FABULOUS by the way.

  • Nellasing
    Nellasing Member Posts: 528 Member
    #4
    Cass83

    Congratulations!!!  So glad you are through it and what a sweet spirit to want to help others.  You do look great and we will look forward to hearing your updates.  (((HUGS)))

     

    PS  Cheese- that's great that you will be able to connect with people by phone Laughing  they will certainly be blessed by you, as we all are!!!

  • Cass83
    Cass83 Member Posts: 151 Member
    edited August 2017 #5
    CheeseQueen57 said:

    Congrats!

    I'm very excited about a program they are implementing at Fox Chase for former patients to provide telephone support for women with similar diagnosis. I have a telephone interview August 30. Although I don't think I'm physically strong enough to volunteer in person, this, I hope will be great for all involved. 

    How wonderful!

    CheeseQueen57-That is so wonderful! I would love to do something like that, but haven't heard of anything in my small town. Let me know how it goes with your interview!

  • Cass83
    Cass83 Member Posts: 151 Member
    #6
    NoTimeForCancer said:

    Cass83, congratulations on

    Cass83, congratulations on finishing up the treatment.  I agree how much this site has helped when you can't find anyone around your particular uterine cancer and no where to turn.  You look FABULOUS by the way.

    Thank you!

    Thank you! I feel fabulous :) I am a fitness instructor and haven't taught classes since Dec. of last year. I will be teaching them again in September and am so ready! It is nice to feel healthy again.

  • Cass83
    Cass83 Member Posts: 151 Member
    #7
    Nellasing said:

    Cass83

    Congratulations!!!  So glad you are through it and what a sweet spirit to want to help others.  You do look great and we will look forward to hearing your updates.  (((HUGS)))

     

    PS  Cheese- that's great that you will be able to connect with people by phone Laughing  they will certainly be blessed by you, as we all are!!!

    Thank you!

    Thank you very much!

  • Shahina
    Shahina Member Posts: 2
    #8
    MMMT

    Hi, I am shahina, 70 years old. Just been diagnosed with MMMT advanced stage. Had my hyterectrmy June 2016. Didnt take chemo or radiation after the surgery. It seems the desease has recurred in the form of MMMT sitting between the bladder and the colon. Have been advised carboplatin/paclitaxel 3 cycles to see if the same can shrink the tumor. I live in Pakistan so the treatment is quite conoservative as compared to what u guys are getting in the US. Let me know if i have a chance at life or is it the end?

    Should i go ahead with Chemo or radiation?

  • pattiann45
    pattiann45 Member Posts: 22 Member
    #9
    having a friend

    Hi,

     

    I am in a similar boat.  I finished external beam radiation for 5 weeks, with boost of brachytherapy, followed by 4 rounds of carbo/taxol.  I was diagnosed Stage 2 with MSI, but negative Lynch.  I would love to have a friend to talk too.

     

  • Becrans
    Becrans Member Posts: 2
    #10
    Thank you for being here. I am new to all this.

    Hi,

    Just had a hysterectomy. Have stage 1 gr 1 uterine cancer. Going on Monday to get port put in and then on Wednesday I meet with MD who is doing chemo. I have to have 2 months of chemo then radiatioN. 

    This maybe a stupid question but does port stay in permanently?  I will definitely have more questions later.  

    Thank you again for being here.

    Rebecca

     

     

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #11
    Imermanangels.com

    Try this.  I volunteer there.  Have yet to be called, but they match patients with same diagnosis for phone support.  I have no idea how patients find them, but I guess they do.  They have volunteers for every type of cancer and I would think that women with Lynch Syndrome would be very appreciative to connect with someone.  My cancer center also has various volunteer opportunities, including a Peer Navigator program which I did for several years.  So check with your Cancer Center as well.  

    Suzanne 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited August 2017 #12
    Becrans said:

    Thank you for being here. I am new to all this.

    Hi,

    Just had a hysterectomy. Have stage 1 gr 1 uterine cancer. Going on Monday to get port put in and then on Wednesday I meet with MD who is doing chemo. I have to have 2 months of chemo then radiatioN. 

    This maybe a stupid question but does port stay in permanently?  I will definitely have more questions later.  

    Thank you again for being here.

    Rebecca

     

     

     

    Becrans, First of all welcome

    Becrans, First of all welcome to our board. You will find loads of support and answers to your questions.

    Your port can be removed post chemo. Some ladies wait for a couple of years or longer and others get theirs out sooner. I had mine out after 6 months post chemo because it bothered me.

    I'm actually surprised that you are having chemo and radiation with a stage 1 grade 1 cancer. From what I have read, most of the time it is hysterectomy only.

    Please come back and ask us anything. Nothing is off limits. Someone will most likely have an answer for you.

    Love and Hugs,

    Cindi

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #13
    pattiann45 said:

    having a friend

    Hi,

     

    I am in a similar boat.  I finished external beam radiation for 5 weeks, with boost of brachytherapy, followed by 4 rounds of carbo/taxol.  I was diagnosed Stage 2 with MSI, but negative Lynch.  I would love to have a friend to talk too.

     

    Cass and Pattiann,

    Cass and Pattiann,

     

    Just wanted to say congrats to both of you for finishing your treatment!  Be kind to yourselves and give your bodies time to heal. It takes a while to build back up and get to your new normals.

    Love and Hugs,

    Cindi

  • Cass83
    Cass83 Member Posts: 151 Member
    edited August 2017 #14
    Shahina said:

    MMMT

    Hi, I am shahina, 70 years old. Just been diagnosed with MMMT advanced stage. Had my hyterectrmy June 2016. Didnt take chemo or radiation after the surgery. It seems the desease has recurred in the form of MMMT sitting between the bladder and the colon. Have been advised carboplatin/paclitaxel 3 cycles to see if the same can shrink the tumor. I live in Pakistan so the treatment is quite conoservative as compared to what u guys are getting in the US. Let me know if i have a chance at life or is it the end?

    Should i go ahead with Chemo or radiation?

    Hi Shahina

    So sorry to hear you have to go through this. One thing I have learned on here from others is you have to do your own research and make your own decisions, we can only give suggestions from our own experiences. I personally would do all I can to fight, and if the treatment will help, I would do it. Also, remember, as long as you are breathing, you have a chance :) Never give up!

  • Cass83
    Cass83 Member Posts: 151 Member
    #15
    pattiann45 said:

    having a friend

    Hi,

     

    I am in a similar boat.  I finished external beam radiation for 5 weeks, with boost of brachytherapy, followed by 4 rounds of carbo/taxol.  I was diagnosed Stage 2 with MSI, but negative Lynch.  I would love to have a friend to talk too.

     

    Hi Pattiann45

    I am glad you are finished with treatments! Have you had a pet or ct scan for follow up yet? I have a CT scan on Sept. 6, along with mammogram, skin cancer screening, and my survivorship meeting with the Onc nurse. I will be glad when the appointments are just check ups every year :)

  • Cass83
    Cass83 Member Posts: 151 Member
    #16
    Becrans said:

    Thank you for being here. I am new to all this.

    Hi,

    Just had a hysterectomy. Have stage 1 gr 1 uterine cancer. Going on Monday to get port put in and then on Wednesday I meet with MD who is doing chemo. I have to have 2 months of chemo then radiatioN. 

    This maybe a stupid question but does port stay in permanently?  I will definitely have more questions later.  

    Thank you again for being here.

    Rebecca

     

     

     

    Port

    The port was one of my concerns when I first had it too. My Dr. let me know that I will have it for about 2 years. She likes to keep them in just in case they are needed. I am so thankful to have it, it makes things much easier (blood draws, CT test, chemo) My mother in law had hers for 15 years and just had it flushed monthly. She passed away at 98 and still had hers (she did not die of cancer). She had gone through colon cancer and breast cancer, and having the port was much easier on her than poking her every time. Most people do not keep them for more than 2 years though.

     

    I remember my port feeling like it would fall out of my chest every time I bent over, for about 10 days after it was put in. I finally got use to it and can do regular activities now though. You will get use to it. :) Ask away, the ladies here are wonderful to help!

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