Just wondering how many women with UPSC have had mets to the intestinal tract.

california_artist
california_artist Member Posts: 816 Member
in Uterine/Endometrial Cancer #1

When I was more active on the boards, it seemed that the most likely places for mets were, the liver, the nodes in the neck, the brain, and the breast. I can't remember if there were any colon cancer mets. Anybody know anything about that.

 

And how the heck are you all doing?

 

My best to you,

 

Claudia

Comments

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    #2
    What my gyn onc told me

    Hi Claudia,

    When I was diagnosed with UPSC, he told me that if I have a recurrence, it would recur in the lungs.  I had never heard or read of the one's that you mentioned.  I was Stage IIIa.  He told me I had a 50/50 chance of it recurring within 5 years.

    I know the other UPSC ladies will post what they know.

    I was diagnosed in June, 2013, had hysterectomy in July, 2013 and six rds of chemo. beginning in Aug., 2013, ending Jan. 2014.  So far, I am 10 months NED.

    What's your story Claudia.

    Jeanette

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
    #3
    It happened to Me said:

    What my gyn onc told me

    Hi Claudia,

    When I was diagnosed with UPSC, he told me that if I have a recurrence, it would recur in the lungs.  I had never heard or read of the one's that you mentioned.  I was Stage IIIa.  He told me I had a 50/50 chance of it recurring within 5 years.

    I know the other UPSC ladies will post what they know.

    I was diagnosed in June, 2013, had hysterectomy in July, 2013 and six rds of chemo. beginning in Aug., 2013, ending Jan. 2014.  So far, I am 10 months NED.

    What's your story Claudia.

    Jeanette

    Claudia

    Are you ok?

  • debrajo
    debrajo Member Posts: 1,095 Member
    #4
    Hey Claudia!

    Glad to  see you've come to visit!  So far so good with me.  I will go back in Nov for FULL day of testing, so say a prayer!  I was told that UPSC will most likely come back in the nodes, lungs, and brain.  I asked about the colon and was told no.  The closest to the colon "might" be the peridinum if stray cells  hadn't got zapped or poisoned!  So, I personaly think UPSC goes where ever it jolly well wants!  How are YOU!?  Debrajo

  • pinky104
    pinky104 Member Posts: 574 Member
    #5
    Mets to the intestinal tract

    I had UPSC with mets to the small intestine, both ovaries, and the omentum at my surgery in May, 2010.  I got the impression that the amount in the small intestine was minor.  I currently have a mass my gyn/onc is watching in the paracolic gutter.  He's waiting for it to get big enough that he can find it when he goes in there to remove it.  It's close to pea-sized now.

    Someone on this site once said that uterine cancer (or maybe UPSC??) spreads laterally, and that does seem to be the case for me.  

  • foods55
    foods55 Member Posts: 35 Member
    #6
    Sigmoid Colon.

    Hello Claudia,

    Just diagnosed with colorectal cancer on 10-14-2014 . It's a new primary cancer.  Tumor is in the Sigmoid Colon.  November 10th I will start 3 rounds of chemo, then

    surgery in February and then 3 more rounds of chemo. Recently met with my oncologist, radiation/onccologist and surgeon. My radiation oncologist  basically said one or two more treatments would not make a difference.  My surgeon said because I have so much scare tissue from my previous high-grade endometrial adenocarcinoma that my surgery will be difficult becasue she is worried about nerve damage and I may end up with a perm. coloscopy bag.

    I see my gyn/oncologist every 6 months and my last exam was September 18th and my CA-125 was 14. However, during the middle of the summer I was having so many intestinal problems that my gyn/oncologist sent me to get more blood work done, Sigmoidoscopy, and a CAT Scan. That's when they found the tumor. It's been several years that I've been NED and things were going pretty good and I excepted the " new normal".

     After all my test, meetings with the doctors I had a big melt down cried, had lots of different emotions, still do and I'm scared of doing new chemo drugs/treatment plan for colon cancer and having different side effect than what I got from carbo/Taxol and internal/ 2 brach treatments. I begin to wonder how much more can my body take?  Also,I will probably end up having a coloscopy bag-because the surgeon said I don't have much to work with because of all the scar tissue.  She says it's like cutting through cement to get the tumor out- Which really  blew my mind that this may be a new reality for me.  My surgeon said I have to decide if I want tthe co;oscopy bag or not but once I'm in surgery and it's worst than the doctors thought I won't have a choice.  I'm thankful we have this wonderful website to get information, people who understand, and give/get wonderful advice.  I've been over visiting the colonrectal site and been learning a lot about colon cancer.

    I wish the best for everyone on this site, stay strong and deal with the present and enjoy each day as one of the members( Ro-10) reminds us to do just that! 

    Sue

     

  • california_artist
    california_artist Member Posts: 816 Member
    #7
    foods55 said:

    Sigmoid Colon.

    Hello Claudia,

    Just diagnosed with colorectal cancer on 10-14-2014 . It's a new primary cancer.  Tumor is in the Sigmoid Colon.  November 10th I will start 3 rounds of chemo, then

    surgery in February and then 3 more rounds of chemo. Recently met with my oncologist, radiation/onccologist and surgeon. My radiation oncologist  basically said one or two more treatments would not make a difference.  My surgeon said because I have so much scare tissue from my previous high-grade endometrial adenocarcinoma that my surgery will be difficult becasue she is worried about nerve damage and I may end up with a perm. coloscopy bag.

    I see my gyn/oncologist every 6 months and my last exam was September 18th and my CA-125 was 14. However, during the middle of the summer I was having so many intestinal problems that my gyn/oncologist sent me to get more blood work done, Sigmoidoscopy, and a CAT Scan. That's when they found the tumor. It's been several years that I've been NED and things were going pretty good and I excepted the " new normal".

     After all my test, meetings with the doctors I had a big melt down cried, had lots of different emotions, still do and I'm scared of doing new chemo drugs/treatment plan for colon cancer and having different side effect than what I got from carbo/Taxol and internal/ 2 brach treatments. I begin to wonder how much more can my body take?  Also,I will probably end up having a coloscopy bag-because the surgeon said I don't have much to work with because of all the scar tissue.  She says it's like cutting through cement to get the tumor out- Which really  blew my mind that this may be a new reality for me.  My surgeon said I have to decide if I want tthe co;oscopy bag or not but once I'm in surgery and it's worst than the doctors thought I won't have a choice.  I'm thankful we have this wonderful website to get information, people who understand, and give/get wonderful advice.  I've been over visiting the colonrectal site and been learning a lot about colon cancer.

    I wish the best for everyone on this site, stay strong and deal with the present and enjoy each day as one of the members( Ro-10) reminds us to do just that! 

    Sue

     

    Sue,

    Just wanted to say how sorry I was to hear of all that is going on with you. I think the comment about cutting through cement would have made me have a melt down too.

    I've been through this cancer journey, and I think above all else, the most important parts are to have someone who loves you and who will hold you if that's what you truly need. The second, is to realize that you are the one in control of your journey. You are the one with the most invested in the ultimate outcome. We can support you, and give you our opinions, you are in the end, the one in control.

    My best to you,

    There are lots of posts with information if you go back some  time. I don't know about what's been going on recently. I only pop in a few times a year.

    Claudia

  • california_artist
    california_artist Member Posts: 816 Member
    #8
    debrajo said:

    Hey Claudia!

    Glad to  see you've come to visit!  So far so good with me.  I will go back in Nov for FULL day of testing, so say a prayer!  I was told that UPSC will most likely come back in the nodes, lungs, and brain.  I asked about the colon and was told no.  The closest to the colon "might" be the peridinum if stray cells  hadn't got zapped or poisoned!  So, I personaly think UPSC goes where ever it jolly well wants!  How are YOU!?  Debrajo

    Debrojo and Connie as to how I am

    I am wonderful. I've gone back to college with my grand-daughter no less. We are both in the digital media field. She is focusing on web things and I have become completely enthralled with movie making and editing. It seems the more I find out, the more my brain starts thinking of movies and documentaries to make. I am very happy. Thanks for asking. How are you two doing??

    I rather like the Jolly well comment.

    Just wanted to add that Karen and Jill are both doing fine also.

    With all my love,

     

    claudia

     

  • AWK
    AWK Member Posts: 364 Member
    #9
    My Mets

    Hi ladies, at my first three month check five mets were found.  One on the paraortic artery inside the peritoneal sack adjacent to my heart, one under my diaphragm, two adjacent to my spine and one on my left kidney.  All are on arteries and have arterial involvement.  All are inoperable and radiation isn't an option either.  I went through three rounds of Doxil and the met on the heart and diaphragm continued to grow.  I am now considered platinum resistant and chemo apparently is no longer an opetion for me.  Now on an avastin program while awaiting the results of genome testing from Foundation One and potentially some ideas about treatments I'll respond to.  I had gone through six rounds of carbo/taxol, 28 radiation and 3 brachytherapy after my surgery to remove all ladyparts, omentum and pelvic lymph nodes.  I had tumors in my uterus plus 81% involvement, a tumor on my right ovary,cervical involvement and three pelvic lymph nodes involved too.   Having said all of that and despite my current status I am working fulltime, engaged in life and doing things I enjoy.  If you saw me on the street you'd never know what I am going through.  I do have my down days; today being one of them - but I usually bounce back.  It can be a little overwhelming lately and I am beginning to think I should take another leave from work.  I am lucky to have a great support system and amazing husband.  I worry about him though and all of the stress. 

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #10
    foods55 said:

    Sigmoid Colon.

    Hello Claudia,

    Just diagnosed with colorectal cancer on 10-14-2014 . It's a new primary cancer.  Tumor is in the Sigmoid Colon.  November 10th I will start 3 rounds of chemo, then

    surgery in February and then 3 more rounds of chemo. Recently met with my oncologist, radiation/onccologist and surgeon. My radiation oncologist  basically said one or two more treatments would not make a difference.  My surgeon said because I have so much scare tissue from my previous high-grade endometrial adenocarcinoma that my surgery will be difficult becasue she is worried about nerve damage and I may end up with a perm. coloscopy bag.

    I see my gyn/oncologist every 6 months and my last exam was September 18th and my CA-125 was 14. However, during the middle of the summer I was having so many intestinal problems that my gyn/oncologist sent me to get more blood work done, Sigmoidoscopy, and a CAT Scan. That's when they found the tumor. It's been several years that I've been NED and things were going pretty good and I excepted the " new normal".

     After all my test, meetings with the doctors I had a big melt down cried, had lots of different emotions, still do and I'm scared of doing new chemo drugs/treatment plan for colon cancer and having different side effect than what I got from carbo/Taxol and internal/ 2 brach treatments. I begin to wonder how much more can my body take?  Also,I will probably end up having a coloscopy bag-because the surgeon said I don't have much to work with because of all the scar tissue.  She says it's like cutting through cement to get the tumor out- Which really  blew my mind that this may be a new reality for me.  My surgeon said I have to decide if I want tthe co;oscopy bag or not but once I'm in surgery and it's worst than the doctors thought I won't have a choice.  I'm thankful we have this wonderful website to get information, people who understand, and give/get wonderful advice.  I've been over visiting the colonrectal site and been learning a lot about colon cancer.

    I wish the best for everyone on this site, stay strong and deal with the present and enjoy each day as one of the members( Ro-10) reminds us to do just that! 

    Sue

     

    Hi Sue:
    I am responding to

    Hi Sue:

    I am responding to your comment because you posted about cutting through cement.   That is exactly what my general gynecologist said prior to my hysterectomy.   THey had put me on Lupron for seven months prior to my hysterectomy he said to help soften the scar tissue because it was going to be a difficult surgery for him because it would be like cutting through cement.  At that time, they didnt know I had cancer.   That was 9 years ago.

    I just had a follow up appointment Tuesday with my gyne/onc.   I do have a soft tissue mass which is now 6 x 1.9 cm and goes laterally and abuts the rectum and bladder at that point is where the SUV reading is 6.8 on the PET scan (increased from 3.2) (which they still consider mild).   I have also got hydroureternephrosis due to the HDR brachytherapy in which I now have a ureter stent which needs replaced every 3 months.    

    However, I haven't received a call back, but when I looked at my office notes for my most recent appointment, under diagnosis it ususally says endoemetrial cancer - primary.  However, this time it says "Screening for Colorectal Cancer - Primary" and then endometrial cancer.    I know the last several times they did an Occult Blood but I haven't gotten Tuesday's test back.   Just curious as to why that says that.

    Also, my gyne/onc doesn't want to remove the mass because he said it could cause me to have a permenant colostomy, nerve damage to my left leg as some of the major risks and since I am not really exhibiting any symptoms, he would rather wait.   He said I could have a urterer by-pass surgery if the mass seems to stay stable and that way I can get rid of having to have surgery every 3 months.

    Kathy

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #11
    AWK said:

    My Mets

    Hi ladies, at my first three month check five mets were found.  One on the paraortic artery inside the peritoneal sack adjacent to my heart, one under my diaphragm, two adjacent to my spine and one on my left kidney.  All are on arteries and have arterial involvement.  All are inoperable and radiation isn't an option either.  I went through three rounds of Doxil and the met on the heart and diaphragm continued to grow.  I am now considered platinum resistant and chemo apparently is no longer an opetion for me.  Now on an avastin program while awaiting the results of genome testing from Foundation One and potentially some ideas about treatments I'll respond to.  I had gone through six rounds of carbo/taxol, 28 radiation and 3 brachytherapy after my surgery to remove all ladyparts, omentum and pelvic lymph nodes.  I had tumors in my uterus plus 81% involvement, a tumor on my right ovary,cervical involvement and three pelvic lymph nodes involved too.   Having said all of that and despite my current status I am working fulltime, engaged in life and doing things I enjoy.  If you saw me on the street you'd never know what I am going through.  I do have my down days; today being one of them - but I usually bounce back.  It can be a little overwhelming lately and I am beginning to think I should take another leave from work.  I am lucky to have a great support system and amazing husband.  I worry about him though and all of the stress. 

    You have been through so much, AWK

    Hi, AWK,

    You have been through so much already with treatment and now 5 new mets.  I feel disappointed for you, but hopeful, too, that the genome testing will determine the right course of treatment for you.  After I finished my chemo - I did not have radiation- I asked my doctor how can we be certain the chemo worked?  I then had a CAT Scan which did not show evidence of disease. UPSC is so tricky, as you know. I also have UPSC, stage IIIA.  I am glad to hear that you look and feel fine and are continuing to work. People suggested to me that I quit my job at age 60 due to the cancer, but I didn't think that was a good idea as I believed that if I kept my lifestyle the same the consistancy would aid me in coping.  I didn't like the idea of quitting my job and having so much free time that all I would do is dwell on my poor health 24/7.  Now, having said that, if my cancer spreads I will then consider quitting my job and applying for Social Security Disability benefits. 

    I wish you success with your treatment!

    Cathy      

  • AWK
    AWK Member Posts: 364 Member
    #12
    Abbycat2 said:

    You have been through so much, AWK

    Hi, AWK,

    You have been through so much already with treatment and now 5 new mets.  I feel disappointed for you, but hopeful, too, that the genome testing will determine the right course of treatment for you.  After I finished my chemo - I did not have radiation- I asked my doctor how can we be certain the chemo worked?  I then had a CAT Scan which did not show evidence of disease. UPSC is so tricky, as you know. I also have UPSC, stage IIIA.  I am glad to hear that you look and feel fine and are continuing to work. People suggested to me that I quit my job at age 60 due to the cancer, but I didn't think that was a good idea as I believed that if I kept my lifestyle the same the consistancy would aid me in coping.  I didn't like the idea of quitting my job and having so much free time that all I would do is dwell on my poor health 24/7.  Now, having said that, if my cancer spreads I will then consider quitting my job and applying for Social Security Disability benefits. 

    I wish you success with your treatment!

    Cathy      

    Thanks Cathy!

    Like you, I need to have normalcy and routines that work and other things bring. Having said that my husband and I have decided that if things continue to grow or spread I probably will step back from my career and focus on health and life.  We are very fortunate that that is an option.  In the meantime I am riding horses again, walking my dogs to see the sunrise in LA and enjoying life.  This was driven home this past week as a good friend passed from recurrence of her ovarian PSC recurrence and mets.  She had been NED for four years.  When I was diagnosed she and her husband reached out and pulled us through those rough days in the beginning.  We were all friends prior to all of this for a long time.  Both her mets and mine were found in the same week.  She inspires me and I always felt less lonely knowing she was on this path although I hated like hell she was too.  So now I march on for both of us.  And her family too.  

     

    This is coming week I have scans and a sit down again with the doctors.  For the first time I am not as optimistic as I usually am but then again, we haven't ever really had goods news on this journey.  I will be fine, just thrown by my friend's quick turn after sharing these most recent rounds of the fight with her.   She always felt so strongly we could both beat this or at least live with it. 

    Hugs.  Stay strong and thrive!

  • foods55
    foods55 Member Posts: 35 Member
    #13
    california_artist said:

    Sue,

    Just wanted to say how sorry I was to hear of all that is going on with you. I think the comment about cutting through cement would have made me have a melt down too.

    I've been through this cancer journey, and I think above all else, the most important parts are to have someone who loves you and who will hold you if that's what you truly need. The second, is to realize that you are the one in control of your journey. You are the one with the most invested in the ultimate outcome. We can support you, and give you our opinions, you are in the end, the one in control.

    My best to you,

    There are lots of posts with information if you go back some  time. I don't know about what's been going on recently. I only pop in a few times a year.

    Claudia

    Thanks for responding to my post

    Claudia,

    I appreciate your thoughtful response!  I agree it's very important to have someone who loves you and I do have a wonderful husband that supports me and has a great sence of humorLaughing

    He makes me laugh when I'm feeling low which brings me a lot of joy!   Thanks for pointing out that we are the ones who are in control of our journey.  At times, as everyone knows it

    gets so overwhelming and it takes time to get your positive, stong thoughts together to fight again!  Some of the old posts that you mentioned has already helped me out and gives me

    encouragement to keep fighting!

    Also, I wanted to let you know  I have read quite a few of your old post. You always gave great advice, continued to share information about new findings, healthy foods to eat, exercise,

    etc..  It's so helpful when you start this journey.  I miss your paintings however I'm glad you found a new hobby that you enjoy!  My new hobby is learning how to sew and quilt.  I have made

    a few things in the past several months for gifts for the holidays. 

    Thanks again,

    Sue  

     

     

  • foods55
    foods55 Member Posts: 35 Member
    #14
    Kaleena said:

    Hi Sue:
    I am responding to

    Hi Sue:

    I am responding to your comment because you posted about cutting through cement.   That is exactly what my general gynecologist said prior to my hysterectomy.   THey had put me on Lupron for seven months prior to my hysterectomy he said to help soften the scar tissue because it was going to be a difficult surgery for him because it would be like cutting through cement.  At that time, they didnt know I had cancer.   That was 9 years ago.

    I just had a follow up appointment Tuesday with my gyne/onc.   I do have a soft tissue mass which is now 6 x 1.9 cm and goes laterally and abuts the rectum and bladder at that point is where the SUV reading is 6.8 on the PET scan (increased from 3.2) (which they still consider mild).   I have also got hydroureternephrosis due to the HDR brachytherapy in which I now have a ureter stent which needs replaced every 3 months.    

    However, I haven't received a call back, but when I looked at my office notes for my most recent appointment, under diagnosis it ususally says endoemetrial cancer - primary.  However, this time it says "Screening for Colorectal Cancer - Primary" and then endometrial cancer.    I know the last several times they did an Occult Blood but I haven't gotten Tuesday's test back.   Just curious as to why that says that.

    Also, my gyne/onc doesn't want to remove the mass because he said it could cause me to have a permenant colostomy, nerve damage to my left leg as some of the major risks and since I am not really exhibiting any symptoms, he would rather wait.   He said I could have a urterer by-pass surgery if the mass seems to stay stable and that way I can get rid of having to have surgery every 3 months.

    Kathy

    Interesting-descriptions doctors use

    Hello Kathy,

    I find it quite interseting how both of our doctors used the same choice of words to describe how difficult the surgery could be and may cause  permenant colostomy and nerve damage.  I'm glad you aren't exhibiting any symptoms and that maybe you could have a urterer by-pass surgery instead of having surgery every 3 months.  I wish you the best in what ever surgery your doctor and you decide to have. 

    Also, I wanted to let you know I don't post often but I do read the uterine and colorectal site several days during the week.  I know you have offered wonderful advice or you bring up situations in your own journey that could help others who are just starting off.  I appreciate all the information you share and your insight about your own personal experiences. 

    Sue

      

     

     

     

     

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #15
    AWK said:

    Thanks Cathy!

    Like you, I need to have normalcy and routines that work and other things bring. Having said that my husband and I have decided that if things continue to grow or spread I probably will step back from my career and focus on health and life.  We are very fortunate that that is an option.  In the meantime I am riding horses again, walking my dogs to see the sunrise in LA and enjoying life.  This was driven home this past week as a good friend passed from recurrence of her ovarian PSC recurrence and mets.  She had been NED for four years.  When I was diagnosed she and her husband reached out and pulled us through those rough days in the beginning.  We were all friends prior to all of this for a long time.  Both her mets and mine were found in the same week.  She inspires me and I always felt less lonely knowing she was on this path although I hated like hell she was too.  So now I march on for both of us.  And her family too.  

     

    This is coming week I have scans and a sit down again with the doctors.  For the first time I am not as optimistic as I usually am but then again, we haven't ever really had goods news on this journey.  I will be fine, just thrown by my friend's quick turn after sharing these most recent rounds of the fight with her.   She always felt so strongly we could both beat this or at least live with it. 

    Hugs.  Stay strong and thrive!

    AWK, please accept my condolences

     

    AWK, I am so sorry to hear of the loss of your good friend. It seems almost too much loss to bare, yet I sense in you an incredible strength and will to live.  After learning about my UPSC, I decided not to postpone living as who knows how long we will live , especially after this diagnosis ?  I decided to grab life head on and enjoy the fruits of my labor. I went to Alaska 4 months ago and the Galapagos Island 3 weeks ago. I now feel refreshed and renewed. I can understand why you are thinking about ending your career.  It is always in the back of my mind as well. I spent my professional career in the social service environment, and I am grateful for the many years of experience working with just about anyone who needed assistance, including cancer patients in a hospital setting. I decided that I refuse to stop living just because I may be dying from cancer. This darn cancer is a mind game for sure!  Continue to ride your horses - oh, would I love to ride with you! Continue to find joy in seeing those sunrises with your dogs in LA.  I wish you the very best, my friend!

     With a Warm Hug ,

    Cathy

  • california_artist
    california_artist Member Posts: 816 Member
    #16
    foods55 said:

    Thanks for responding to my post

    Claudia,

    I appreciate your thoughtful response!  I agree it's very important to have someone who loves you and I do have a wonderful husband that supports me and has a great sence of humorLaughing

    He makes me laugh when I'm feeling low which brings me a lot of joy!   Thanks for pointing out that we are the ones who are in control of our journey.  At times, as everyone knows it

    gets so overwhelming and it takes time to get your positive, stong thoughts together to fight again!  Some of the old posts that you mentioned has already helped me out and gives me

    encouragement to keep fighting!

    Also, I wanted to let you know  I have read quite a few of your old post. You always gave great advice, continued to share information about new findings, healthy foods to eat, exercise,

    etc..  It's so helpful when you start this journey.  I miss your paintings however I'm glad you found a new hobby that you enjoy!  My new hobby is learning how to sew and quilt.  I have made

    a few things in the past several months for gifts for the holidays. 

    Thanks again,

    Sue  

     

     

    Sue, husbands are swell, aren't they?

    It's interesting that your handle is foods 55, as, in my mind food is most of the cure and the cause in some cases, of this bugger, cancer.

     

    Put up a painting I did recently for you to ponder. It's called The Visitor. This is a newer version of one that burned in the fire that took most of my belongings and all of my daughters' things. She and her family are fine, but really?

     

    I love the feeling of friendships, don't you?

    My best to you all, and oodles of warm hugs,

     

    Claudia

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