Stage II UPSC

Abbycat2
Abbycat2 Member Posts: 644 Member
in Uterine/Endometrial Cancer #1

For the ladies here with stage 2 UPSC- Sandy and EZLiving 66 and only here, Linda P. reported in a research study that reviewed the effectiveness of various treatments in terms of disease free survival. In the title search, type in: New 'March 2009'  and her post will come up. Not bad prognosis with chemo +/- radiation, considering how aggressive this rare cancer is. 

Wishing you all the best,

Cathy

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #2
    Cathy, it was so nice of you

    Cathy, it was so nice of you to go back and find this particular post.  I went and read it myself.

    I found ACS chat boards during a search on the world wide web, desperate to find any information or help on UPSC.  It popped up with a Linda P post and I was hooked.  I know other ladies have found these board when they have come across Linda P's posts and hope she is smiling knowing she has left a legacy that truly lives on.

    It is amazing how things have changed since then.  The "latest" that is out there is from 2012 and here we are almost at 2016!!  

     

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #3
    Can't find it!

    Cathy, I don't know my way around here much and I can't find it.  I tried typing in "New 'March 2009' but I must be typing it in the wrong place.  Please help!!!

    Thanks,

    Eldri

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #4
    EZLiving66 said:

    Can't find it!

    Cathy, I don't know my way around here much and I can't find it.  I tried typing in "New 'March 2009' but I must be typing it in the wrong place.  Please help!!!

    Thanks,

    Eldri

    See if this Link

    See if this Link works:

    http://csn.cancer.org/node/166987

     

     

     

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #5
    NoTimeForCancer said:

    See if this Link

    See if this Link works:

    http://csn.cancer.org/node/166987

     

     

     

    Thanks No Time!

    No Time, thanks. I have no idea how you found that address above, but it worked!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #6
    Abbycat2 said:

    Thanks No Time!

    No Time, thanks. I have no idea how you found that address above, but it worked!

    I just found it based on your

    I just found it based on your instructions, opened the thread and it is up in the browser line. Cool

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #7
    NoTimeForCancer said:

    See if this Link

    See if this Link works:

    http://csn.cancer.org/node/166987

     

     

     

    THANK YOU!!

    That is so encouraging and echoes what my gyno/oncologist told me (I've been told he doesn't pull any punches either).  Even if he would have give me a 50/50 chance with chemo/radiation, I would have been happy. 

    I don't know if I'm going to beat this or not....only time will tell.  BUT I do know that every day I'm alive I'm going to be happy and celebrate life to the fullest.

     

    Take care,

    Eldri

  • AWK
    AWK Member Posts: 364 Member
    #8
    EZLiving66 said:

    THANK YOU!!

    That is so encouraging and echoes what my gyno/oncologist told me (I've been told he doesn't pull any punches either).  Even if he would have give me a 50/50 chance with chemo/radiation, I would have been happy. 

    I don't know if I'm going to beat this or not....only time will tell.  BUT I do know that every day I'm alive I'm going to be happy and celebrate life to the fullest.

     

    Take care,

    Eldri

    In the words of Stuart Scott

    It is about how we live.  That is how we win. This is my mantra and i pull up his speech at the Espys on days when I need the reminder.  

    Stay strong and thrive ladies!  Anne

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #9
    Me too! I found this site thanks to Linda Procopio.

    When I was first diagnosed with UPSC, I started researching on the Internet and came across one of her posts.  I followed that post back to CSN. Following different strings here gave me more knowledge about UPSC than all of the old and inaccurate links on the Internet. I spent a long evening reading Linda's very long string and was amazed by her fighting spirit. She was such caring person! I cried when I came to the end of her story! I had never cried at my own diagnosis but felt devastated by the loss of this eternally optimistic woman. We all owe her a debt of gratitude for her valliant fight against our common enemy. Please read her string titled "Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?"

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #10
    Sandy3185 said:

    Me too! I found this site thanks to Linda Procopio.

    When I was first diagnosed with UPSC, I started researching on the Internet and came across one of her posts.  I followed that post back to CSN. Following different strings here gave me more knowledge about UPSC than all of the old and inaccurate links on the Internet. I spent a long evening reading Linda's very long string and was amazed by her fighting spirit. She was such caring person! I cried when I came to the end of her story! I had never cried at my own diagnosis but felt devastated by the loss of this eternally optimistic woman. We all owe her a debt of gratitude for her valliant fight against our common enemy. Please read her string titled "Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?"

    I found Linda's obituary and

    I found Linda's obituary and you are right, she was a remarkable woman.  I wish I could have known her on this board.  

    In 1993 we had to tell our then 19 year old daughter she had cancer - a very agressive, rare and deadly thyroid cancer. By far, it was the hardest thing I've ever done - much, much worse than getting my own diagnosis.  At that time there was no internet and the only info I could find on it was from the doctor.  I'm really glad I didn't know because I was a basket case as it was.  She had half her thyroid removed, then, when they found it had spread, went back and took out the other half.  Then, using radioactive iodine, found out it had spread into her chest and neck, she had radiation.  Over the years the scans have gotten farther and father apart but have always come back clean.  Fast forward 22 years - she's 41 and has three children.  About four years ago, she started to get small tumors in her neck.  Each time they've removed them and the cancer has been encapsulated and they have found no evidence it has spread.

    My point is, you just don't know!  According to the experts, our daughter should never have made it past five or ten years much less 22 years and going strong.

  • pinky104
    pinky104 Member Posts: 574 Member
    #11
    EZLiving66 said:

    I found Linda's obituary and

    I found Linda's obituary and you are right, she was a remarkable woman.  I wish I could have known her on this board.  

    In 1993 we had to tell our then 19 year old daughter she had cancer - a very agressive, rare and deadly thyroid cancer. By far, it was the hardest thing I've ever done - much, much worse than getting my own diagnosis.  At that time there was no internet and the only info I could find on it was from the doctor.  I'm really glad I didn't know because I was a basket case as it was.  She had half her thyroid removed, then, when they found it had spread, went back and took out the other half.  Then, using radioactive iodine, found out it had spread into her chest and neck, she had radiation.  Over the years the scans have gotten farther and father apart but have always come back clean.  Fast forward 22 years - she's 41 and has three children.  About four years ago, she started to get small tumors in her neck.  Each time they've removed them and the cancer has been encapsulated and they have found no evidence it has spread.

    My point is, you just don't know!  According to the experts, our daughter should never have made it past five or ten years much less 22 years and going strong.

    Radioactive Iodine

    I had radioactive iodine for Grave's Disease (a hyperactive thyroid with a goiter) in 1994.  I've noticed one or two other threads on here where women have mentioned having had both uterine cancer and having previously taken radioactive iodine, and I thought that was awfully coincidental.  A couple of weeks ago, my chiropractor told me his wife has had thyroid cancer for about a year.  They had discussed radioactive iodine treatments with a specialist in NYC but ruled them out because they were told some cancers have been found in the people who have taken that.  Instead, they're going for genetic testing to see what they can do that way.  If I were your daughter, I'd get ultrasounds done on my uterus frequently just in case.

    One of my coworkers had thyroid cancer 3 or 4 years ago.  She was told she'll be at risk the rest of her life, so she needs to keep getting checked frequently.  So far she hasn't had any recurrences.   

    My odds of survival were about 9% according to a report I read a few months ago (I was stage IVb) but I'm 5 years and 1 month out from when I finished chemo. My mother had breast cancer twice, ten years apart, and my father had prostate cancer.  I know I'll have to watch for recurrences the rest of my life.  I worry about every little ache and pain.  I was found to have a mass in my paracolic gutter last year after having some abdominal pain, but after 3 CT scans and a PET scan over 6 months, my gyn/onc has decided it's not cancer since it hasn't grown.  He's not even checking it any more unless I get new symptoms. The mass was on the opposite side from where I got the pain, ironically.

    Your dog is very cute.  My co-worker who had the thyroid cancer has two little white dogs that look similar to yours, but they're not quite that clean.  How do you keep that carpet so white with a dog in the house??? 

     

        

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #12
    pinky104 said:

    Radioactive Iodine

    I had radioactive iodine for Grave's Disease (a hyperactive thyroid with a goiter) in 1994.  I've noticed one or two other threads on here where women have mentioned having had both uterine cancer and having previously taken radioactive iodine, and I thought that was awfully coincidental.  A couple of weeks ago, my chiropractor told me his wife has had thyroid cancer for about a year.  They had discussed radioactive iodine treatments with a specialist in NYC but ruled them out because they were told some cancers have been found in the people who have taken that.  Instead, they're going for genetic testing to see what they can do that way.  If I were your daughter, I'd get ultrasounds done on my uterus frequently just in case.

    One of my coworkers had thyroid cancer 3 or 4 years ago.  She was told she'll be at risk the rest of her life, so she needs to keep getting checked frequently.  So far she hasn't had any recurrences.   

    My odds of survival were about 9% according to a report I read a few months ago (I was stage IVb) but I'm 5 years and 1 month out from when I finished chemo. My mother had breast cancer twice, ten years apart, and my father had prostate cancer.  I know I'll have to watch for recurrences the rest of my life.  I worry about every little ache and pain.  I was found to have a mass in my paracolic gutter last year after having some abdominal pain, but after 3 CT scans and a PET scan over 6 months, my gyn/onc has decided it's not cancer since it hasn't grown.  He's not even checking it any more unless I get new symptoms. The mass was on the opposite side from where I got the pain, ironically.

    Your dog is very cute.  My co-worker who had the thyroid cancer has two little white dogs that look similar to yours, but they're not quite that clean.  How do you keep that carpet so white with a dog in the house??? 

     

        

    Pinky, you're living proof!

    First, the carpet is really not that clean - LOL - but I have a husband who is a vacuuming nut.  He even vacuums the garage and driveway.  It's a joke in our family but I'm not complaining!!  Now if I could only get him to dust!!!

    Our daughter also had Stage 1 breast cancer but they did a lumpectomy so her whole body is watched pretty close - we affectionately call her "Cancer Kathy."  She was the most accident prone kid but when she was in 8th grade we found out she had epilepsy and had been having petit mal seizures for a long time.  That explained why she was always getting hurt.  Last week she texted me and told me she was on her way to the emergency room - she was carrying laundry up the stairs at home, heard a "pop" in her knee and down she went.  She tore the meniscus - same knee she broke off part of her kneecap while skiing when she was 13.  

    After her surgeries for thyroid cancer - hurthle cell - she was in the hospital where she had to swallow the radioactive iodine pill.  She was isolated and I could only visit her for a short time and had to sit behind the "lead wall."  She was waving to some friends who were outside the hospital and when she jumped down from the window ledge she knocked over that tray-on-wheels all hospitals have and broke her toe - told you she was accident prone!!  I attribute at least 50% of my grey hair to her!!!

    Take care and here's to many more years of being NED!!

    Eldri

  • DebiR
    DebiR Member Posts: 38 Member
    #13
    pinky104 said:

    Radioactive Iodine

    I had radioactive iodine for Grave's Disease (a hyperactive thyroid with a goiter) in 1994.  I've noticed one or two other threads on here where women have mentioned having had both uterine cancer and having previously taken radioactive iodine, and I thought that was awfully coincidental.  A couple of weeks ago, my chiropractor told me his wife has had thyroid cancer for about a year.  They had discussed radioactive iodine treatments with a specialist in NYC but ruled them out because they were told some cancers have been found in the people who have taken that.  Instead, they're going for genetic testing to see what they can do that way.  If I were your daughter, I'd get ultrasounds done on my uterus frequently just in case.

    One of my coworkers had thyroid cancer 3 or 4 years ago.  She was told she'll be at risk the rest of her life, so she needs to keep getting checked frequently.  So far she hasn't had any recurrences.   

    My odds of survival were about 9% according to a report I read a few months ago (I was stage IVb) but I'm 5 years and 1 month out from when I finished chemo. My mother had breast cancer twice, ten years apart, and my father had prostate cancer.  I know I'll have to watch for recurrences the rest of my life.  I worry about every little ache and pain.  I was found to have a mass in my paracolic gutter last year after having some abdominal pain, but after 3 CT scans and a PET scan over 6 months, my gyn/onc has decided it's not cancer since it hasn't grown.  He's not even checking it any more unless I get new symptoms. The mass was on the opposite side from where I got the pain, ironically.

    Your dog is very cute.  My co-worker who had the thyroid cancer has two little white dogs that look similar to yours, but they're not quite that clean.  How do you keep that carpet so white with a dog in the house??? 

     

        

    I had Thyroid cancer and radioactive iodine

    Interesting, I also had Thyroid Cancer with a complete thyroidectomy and radioactive iodine when I was 32 in 1989 (liquid I drank, not a pill like they do today).  No one ever mentioned a connection between that and uterine cancer before.   My thyroid cancer was the most common papillary carcinoma and I did ask if there was any relation to that and the UPSC I have and was told there was none.

    Debi

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