NED 5 years & counting

I have not been here lately. This is to let my fellow sisters know there is hope. In 2008, my life changed with UPSC 1A, Stage 3 and the treatment called the "Sandwich Method". 

Just came back from my doctor and my tests showed no evidence of disease at this time (NED). I am glad I had the the 'full monty' 5 years ago with chemo/radiation.  Robotics were not in the game for me; but was discussed, and then changed to full surgery. My 'scar' is not a worry, the hair loss returned, and I too didn't know what was in my future. I will continue to go once a year for a while as I don't know if a time will ever make me feel that NED can disappear at anytime in my life.

I did and continue to do research classified as worthy, recognized literature. I have a physican who answers all my questions and appreciates that I stay up on what is happening to UPSC. I feel always like part of the health-care team for me; not an outsider to a specialized medical world. This was very important in my personal needs.  It was and continues to be hard to look at what is stated about UPSC. Yet, it has shown greater hope than 5 years ago.

I also would like to thank this site for providing a means to 'hear' from others who share their help, thoughts, and stories. It made me feel not alone.

An article I would like to share is in Fall' 2011 MD Anderson "Network" ( www.mdanderson.org/network) It is a short article  about a women who at age 57 had stage 3 UPSC and she was seven years out from her 2004 diagnosis.

When I saw this article, I was mid-out in my post-treatment. It provided me with hope and strength.

 

Each of us has their own journey and along that road decisions to make about our personal set of health circumstances.

Blessing to all of you where-ever you are in your journey...sisters together

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    Thank you for coming back and

    Thank you for coming back and sharing with us.  We need to hear this as many times as we can.  May you have 10 times the 5 years of NED.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    Thank you for coming back and

    Thank you for coming back and sharing with us.  We need to hear this as many times as we can.  May you have 10 times the 5 years of NED.

    So happy for you

    I love reading all the posts from long time NEDers!  Congratulations.  Thank you for posting this great news.

    Suzanne

  • california_artist
    california_artist Member Posts: 816 Member
    Great news, thaks for sharing. There are a bunch of out here

    How wonderful to hear from you. Isn't life a joy?

     

    Hugs all around to everyone,

    Claudia

  • Dee5678
    Dee5678 Member Posts: 37

    Great news, thaks for sharing. There are a bunch of out here

    How wonderful to hear from you. Isn't life a joy?

     

    Hugs all around to everyone,

    Claudia

    Yay, another happy post from a USPC survivor!

    Oh, I am so happy to read about USPC survivors who are thriving, doing well and best of all are NED. I am newly diagnosed with USPC and was so encouraged by your post. Thanks for coming back to this site to post.  So much of what we find on the internet about USPC is discouraging. Your post was a light for me!

  • tequila
    tequila Member Posts: 15 Member
    UPSC Survivors - does anyone drink dandelion root tea extract

    I too am very grateful for everyone who posts to this website. I was a 67 year old very active boomer who was diagnosed  in Sept 2012 with UPSC Stage 3A - no symptoms whatsoever - just  a routine pap test.  The cancer was 1/11 into the wall of the  muscle of my uterus but was stage 3A as it had gone into the right fallopian tube. I initially declined treatment as I was convinced that I would end up in the hospital deathly ill from chemotherapy. I got a second and third opinion and in May 2013 I started 6 rounds of chemotherapy - was in remission after 4 rounds but finished all 6 rounds. All the PET/CT scans since then show NED. There is a clinical trial going on at the University of Windsor in Canada  for dandelion root tea extract that  has been known to kill certain types of cancer of people  who chemo no longer worked for - some are still in remission 3 years later. I wasd wondering id anyone is taking this - I started taking it 6 weeks ago - it is harmless and I am trying to be proactive rather than reactive - this only works if you have a healthy immune system, so you can't take it if you are on chemotherapy.

    We are all survivors who read this post and I pray for all of you strong ladies. Happy Mother's Day!

     

     

     

  • Hybridspirits
    Hybridspirits Member Posts: 209
    tequila said:

    UPSC Survivors - does anyone drink dandelion root tea extract

    I too am very grateful for everyone who posts to this website. I was a 67 year old very active boomer who was diagnosed  in Sept 2012 with UPSC Stage 3A - no symptoms whatsoever - just  a routine pap test.  The cancer was 1/11 into the wall of the  muscle of my uterus but was stage 3A as it had gone into the right fallopian tube. I initially declined treatment as I was convinced that I would end up in the hospital deathly ill from chemotherapy. I got a second and third opinion and in May 2013 I started 6 rounds of chemotherapy - was in remission after 4 rounds but finished all 6 rounds. All the PET/CT scans since then show NED. There is a clinical trial going on at the University of Windsor in Canada  for dandelion root tea extract that  has been known to kill certain types of cancer of people  who chemo no longer worked for - some are still in remission 3 years later. I wasd wondering id anyone is taking this - I started taking it 6 weeks ago - it is harmless and I am trying to be proactive rather than reactive - this only works if you have a healthy immune system, so you can't take it if you are on chemotherapy.

    We are all survivors who read this post and I pray for all of you strong ladies. Happy Mother's Day!

     

     

     

    dandelion

    I have read a lot about dandelion leaves which i believe dandelion root tea extract comes from.   There is a lot of positive about this and I have added these to my daily green smoothie.  Thanks for sharing, I have a naturopath oncologist appt in June and will add this to my list of questions

     

  • Rewriter
    Rewriter Member Posts: 493 Member

    dandelion

    I have read a lot about dandelion leaves which i believe dandelion root tea extract comes from.   There is a lot of positive about this and I have added these to my daily green smoothie.  Thanks for sharing, I have a naturopath oncologist appt in June and will add this to my list of questions

     

    Six year survivor of UPSC

    May 20 will mark six years since my surgery for UPSC Stage 1a. I had six rounds of carbo/taxol and five vaginal brachytherapy treatments and have been NED ever since. I pay lots of attention to diet and to getting enough exercise and sleep, but I am otherwise just happily living my life.

     

    Best to all of you. I don't post much, but I do follow your stories and have great affection for all of the women who post.

     

    Jill

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Rewriter said:

    Six year survivor of UPSC

    May 20 will mark six years since my surgery for UPSC Stage 1a. I had six rounds of carbo/taxol and five vaginal brachytherapy treatments and have been NED ever since. I pay lots of attention to diet and to getting enough exercise and sleep, but I am otherwise just happily living my life.

     

    Best to all of you. I don't post much, but I do follow your stories and have great affection for all of the women who post.

     

    Jill

    Jill, what wonderful news

    Six years since your surgery.  That is great to read.  Glad you continue to well and you are happily living life.  May you remain NED for many more years.

  • Louisp
    Louisp Member Posts: 13
    edited June 2016 #10
    I'm not sure if anyone is

    I'm not sure if anyone is still following the research of dandelion's anti-cancer properties. Results look promising so far. On another note, John DiCarlo, who was touted as successful proof of dandelion tea treatment, passed away in 2015. It's strange that there have been no news reports and his obituary omits his cause of death: http://www.legacy.com/obituaries/windsorstar/obituary.aspx?pid=175216856