life expectancy

california_artist

cathyK said:

statistics
hello Josie,
well you say you love to hear stories of stage IV patients who have exceeded everyones expectations,
I have found 3 so far, who have made it to 1 year and 2 more who died at 2 years where are you finding these stories?
I have ben through the ringer going to an awful oncologist for most of my treatment, and then one for one day and then one for after care which gets me mutiple people responding to my phone call questions, never my "in office oncologist" and 1 of them told me the stats at U of M that is why I now am disapointed ,

cathy

Stats
Cathy, you are not the statistical average.
How are you feeling health wise. I know you have cancer, but how do you feel? Are you in any pain now? Do you see changes in symptoms? What is your day like? Are you resting? Sleeping how many hours at night? Headaches? What's going on?? Friends close by? Things to do that you enjoy. Or is it all too overwhelming??? Is there no light at the end of the tunnel, is that what's wrong?

Hope is something you just can't find?

What if you have faith and work on the adage, God helps those who help themselves, what are you doing to help yourself in order that your God can help you????

Show your faith,
do something,
today,
now,
He's waiting.

livealot

livenow09 said:

Well Said Out Law
Aloha All,
Stats are an average...some live, some don't; Again the recurrence rate overall is 43% which means 57% don't recur; no one knows; the cancer mutates that why when it comes back, it's harder to knock back; UPSC "seeds" itself MICROSCOPICALLY in all parts of the body; the chemo has the best chance of SYSTEMICALLY killing off all the cells that have "seeded" elsewhere; my onco encouraged me to have 2 extra doses (total 8) of Carbo/Taxol because he had a "suspicion, a gut feeling there are still some bugs in there" because the CA 125 kept dropping in a straight line instead of leveling out during the last 2 cycles (5&6); it is a crap shoot; so is life...it's the human condition;
please remember "healing" is more an ART than a science; there are so many variables to our situation, so many loose threads still untied;
So in the meantime...live without regret...we all make the best decision we can make at the time...let go of the woulda, coulda, shoulda...it's just a waste of energy; do you grief work; for indeed there is much to grieve...BUT WE AIN'T DEAD YET!!!!!!
learn to dance in the rain; make lemonade out of lemons; paint, love, eat laugh; this is hard to hear when emotionally you feel down...but it's true none the less...
love you all
Marie
ps we ALL have to die eventually; we have the "advantage" of knowing how but no one knows when....so make use of your time

I'm new to this site as of today...
I've finally figured out what UPSC was after reading several entries. That's what I have too- stage 4. When i was first diagnosed in April, I read some stuff on the internet and then decided not to- since it all seemed pretty bad. good decision on my part I think. I have a wonderful surgeon (gyn/onc) and a wonderful oncologist, not to mention an amazing husband, 3 great kids 22,20,18, incredible siblings and incredibly supportive friends. I had my opt. debulking surgery April 29, 2009 and finished chmo (carboplatnium/taxol) treatment sept. 14, 2009. I know why there are "only" 6- the 7th would have killed me! after transfusions for lack of RBCs and prednisone for lack of platelets, I am feeling great and am very excited about life. My onc. stresses and I believe that we are ALL INDIVIDUALS. stats don't really matter. we have a policy of don't ask, don't tell. I like that because I can truly LIVE my life. My first art class (I've always wanted to take art) is on Sat. and I just can't wait! I'm having a great time with my family, cooking healthily and truly loving life. None of us really knows how or when we are going to die. I really hope I don't die soon, but I will have no regrets when it happens.

I really would love to hear some good survivor stories or others who have UPSC and are doing well.

Good wishes to all... elizabeth

Kris Ann

livealot said:

I'm new to this site as of today...
I've finally figured out what UPSC was after reading several entries. That's what I have too- stage 4. When i was first diagnosed in April, I read some stuff on the internet and then decided not to- since it all seemed pretty bad. good decision on my part I think. I have a wonderful surgeon (gyn/onc) and a wonderful oncologist, not to mention an amazing husband, 3 great kids 22,20,18, incredible siblings and incredibly supportive friends. I had my opt. debulking surgery April 29, 2009 and finished chmo (carboplatnium/taxol) treatment sept. 14, 2009. I know why there are "only" 6- the 7th would have killed me! after transfusions for lack of RBCs and prednisone for lack of platelets, I am feeling great and am very excited about life. My onc. stresses and I believe that we are ALL INDIVIDUALS. stats don't really matter. we have a policy of don't ask, don't tell. I like that because I can truly LIVE my life. My first art class (I've always wanted to take art) is on Sat. and I just can't wait! I'm having a great time with my family, cooking healthily and truly loving life. None of us really knows how or when we are going to die. I really hope I don't die soon, but I will have no regrets when it happens.

I really would love to hear some good survivor stories or others who have UPSC and are doing well.

Good wishes to all... elizabeth

Hope for stage 4
Hi Elizabeth. My mom has stage 4 and is fine. She was diagnosed March 8th 2008. And yes stage 4 uspc/clear cell. She had that same treatment as the others chemo wise.. actually had 4 rounds of chemo. had 33 whole abdominal radiation treatments and 4 brachies. I just took her for her check up the week of thanksgiving and her dr. said she was doing great.. She is finally putting on weight again etc.. So there is def. hope for sure!

Kristin

culka

california_artist said:

Stats
Cathy, you are not the statistical average.
How are you feeling health wise. I know you have cancer, but how do you feel? Are you in any pain now? Do you see changes in symptoms? What is your day like? Are you resting? Sleeping how many hours at night? Headaches? What's going on?? Friends close by? Things to do that you enjoy. Or is it all too overwhelming??? Is there no light at the end of the tunnel, is that what's wrong?

Hope is something you just can't find?

What if you have faith and work on the adage, God helps those who help themselves, what are you doing to help yourself in order that your God can help you????

Show your faith,
do something,
today,
now,
He's waiting.

Cathy
You can find these stage 4 people on Gerson therapy, in Anticancer book, on web page campaign for truth in medicine (or something like that), just start looking. Claudia wrote it nicely to you. I would be asking for your address to shake you up. You have to believe.

Yesterday, when I was reading that anticancer book I almost stopped breathing. Last year I was doing everything by book without book. And this week one lady told me that I look like 35. She cut 10 years off.

If you have questions ask us. At least Claudia will find answer for you. But do something. It is tons of advices on this web, just follow.

I am sending you virtual hug, can you feel it?

janmac35

I have survived for 4 years and feel pretty good.
Do not give up! Prepare but do not give up hope. I have survived 4 years and still enjoy life and expect to continue to live 1 year at a time. However, I am prepared with all the tedious papers, a living trust, etc. I, too, gave away all my tight clothes many 20 years old, figuring I deserve new ones if I ever get back to size 8 or 10. I am giving away collectibles, family treasures and as much as possible to those I know want them and will enjoy them. I get the joy of giving and know they are going to those I want to have them. Am I planning on dying this year? Definitely not! But I want to have some control over the rest of my life. I walk, take part in many activities that do not revolve around cancer, enjoy several circles of friends and worship and praise God every day. No one knows what tomorrow will bring, so we must all live our lives as if tomorrow may be the last or the first of many days we will be able to celebrate.

cleo

janmac35 said:

I have survived for 4 years and feel pretty good.
Do not give up! Prepare but do not give up hope. I have survived 4 years and still enjoy life and expect to continue to live 1 year at a time. However, I am prepared with all the tedious papers, a living trust, etc. I, too, gave away all my tight clothes many 20 years old, figuring I deserve new ones if I ever get back to size 8 or 10. I am giving away collectibles, family treasures and as much as possible to those I know want them and will enjoy them. I get the joy of giving and know they are going to those I want to have them. Am I planning on dying this year? Definitely not! But I want to have some control over the rest of my life. I walk, take part in many activities that do not revolve around cancer, enjoy several circles of friends and worship and praise God every day. No one knows what tomorrow will bring, so we must all live our lives as if tomorrow may be the last or the first of many days we will be able to celebrate.

Onward and upward!
Cathy I think that you will find that there are a fair number of us with Stage 4 who are going well after 2 years + and intend to remain that way. Lack of stress and having a positive outlook have a lot to do with it and you are not helping yourself. I also don't research, put my total faith in my oncology team, but gain a great deal from this site and the positive posts from up beat ladies.
I also have everything sorted...living will, also my quick nil-fuss funeral service on computer!! I think that this 'hiccup' makes you look ahead, and that previous peace of mind
doesn't return..even though I try hard...but I will be around for a long time yet.

deanna14

janmac35 said:

I have survived for 4 years and feel pretty good.
Do not give up! Prepare but do not give up hope. I have survived 4 years and still enjoy life and expect to continue to live 1 year at a time. However, I am prepared with all the tedious papers, a living trust, etc. I, too, gave away all my tight clothes many 20 years old, figuring I deserve new ones if I ever get back to size 8 or 10. I am giving away collectibles, family treasures and as much as possible to those I know want them and will enjoy them. I get the joy of giving and know they are going to those I want to have them. Am I planning on dying this year? Definitely not! But I want to have some control over the rest of my life. I walk, take part in many activities that do not revolve around cancer, enjoy several circles of friends and worship and praise God every day. No one knows what tomorrow will bring, so we must all live our lives as if tomorrow may be the last or the first of many days we will be able to celebrate.

janmac and karma
Were you diagnosed UPSC? What stage? Congratulations! 4 years is awesome!! Here's to many more!

livenow09

Rewriter said:

Do I really know "HOW" I am going to die
Marie, you say that we have the advantage of knowing how we are going to die. Personally, I plan on living to my 90s and dying in my sleep. I think that's a possibility for many of us, no matter what the doctors say.

advantage of knowing
Aloha Rewriter,
I was being factious when I said we know "how" we will die; if cancer recurs, then we'll die from the cancer...increased weakness; bizarre blood counts; wasting syndrome, organ failure any and all variations; this is how most people die anyway; BUT WE AIN"T DEAD YET SO DANCE, SING AND LOVE AS MUCH AS YOU CAN

Marie

A1pena

Kris Ann said:

Hope for stage 4
Hi Elizabeth. My mom has stage 4 and is fine. She was diagnosed March 8th 2008. And yes stage 4 uspc/clear cell. She had that same treatment as the others chemo wise.. actually had 4 rounds of chemo. had 33 whole abdominal radiation treatments and 4 brachies. I just took her for her check up the week of thanksgiving and her dr. said she was doing great.. She is finally putting on weight again etc.. So there is def. hope for sure!

Kristin

Thank you Kris Ann!
Thank you for posting your story! I hope to hear more positive ones like this in the near future...

Best wishes for you and your mom,

Amanda

Caradavin

Only one person knows how
Only one person knows how long you will live. They only know stats for their hospital right? Be the exception.

norma2

Caradavin said:

Only one person knows how
Only one person knows how long you will live. They only know stats for their hospital right? Be the exception.

Don't give up!
Cathy,
When I am down I have to keep reminding myself that I have one day at a time. And to make the best of that day, not worrying about the past or the future. It keeps me going. Like the others said, keep on trying, you are not a statistic. I am being treated at M. D. Anderson Cancer Center, Houston, Texas. Have met many people who are living with cancer as a chronic illness long past the "statistical" dates. I hope for full remission. But, if that doesn't happen I will greedily take each additional day and enjoy it to the fullest.

Remember when you were a little kid, and during the summer the days seemed to last forever. How is that possible? I think it is because children have the ability to enjoy everything around them in each moment they live. We lose that ability as we get older. Kids don't usually worry about the past or the future when they are a play. They concentrate enjoy what they are doing to the fullest. I am rambling. Just trying to give you something to hang on to that works for me.

{{{hug}}} Norma

Cee Bee

Stage 4 survivor
If I can add my unusual experience, I was diagnosed with metastatic endometrial cancer, Stage 4, eight years ago. I had surgery to remove the tumor which was the size of a tennis ball from my colon and pelvic bone. I was given very little hope. I opted for radiation of that area but not chemo. It was a long road back to feeling normal but after a few years, I took a turn for the better and now, eight years later, I am like a new person. I have no sign of the cancer, my CA 125 remains stable at 7 or 8 and I am able to live a normal life. My oncologist calls me her Miracle Patient. Why did this happen to me? God only knows. When I was diagnosed, I totally accepted God's will for me. I surrendered to his love and accepted what my fate would be. I asked everyone to pray for a peaceful death for me. I received the Sacrament of the Sick from my parish priest and then visited several hospices to see which would work best for me. Now, eight years later, it seems so surreal, a dream that I woke up from. No one can explain my long remission. I accept it and praise and thank God each day for my new state of feeling great and hardly a sick day. If it can happen to me, it can happen to you. God bless you, Christina

monik_lisett

Cee Bee said:

Stage 4 survivor
If I can add my unusual experience, I was diagnosed with metastatic endometrial cancer, Stage 4, eight years ago. I had surgery to remove the tumor which was the size of a tennis ball from my colon and pelvic bone. I was given very little hope. I opted for radiation of that area but not chemo. It was a long road back to feeling normal but after a few years, I took a turn for the better and now, eight years later, I am like a new person. I have no sign of the cancer, my CA 125 remains stable at 7 or 8 and I am able to live a normal life. My oncologist calls me her Miracle Patient. Why did this happen to me? God only knows. When I was diagnosed, I totally accepted God's will for me. I surrendered to his love and accepted what my fate would be. I asked everyone to pray for a peaceful death for me. I received the Sacrament of the Sick from my parish priest and then visited several hospices to see which would work best for me. Now, eight years later, it seems so surreal, a dream that I woke up from. No one can explain my long remission. I accept it and praise and thank God each day for my new state of feeling great and hardly a sick day. If it can happen to me, it can happen to you. God bless you, Christina

Your story is encouraging
Wow, Thank God for the miracle he did in your life! Its so encouraging to read stories like yours.

TiggersDoBounce

Cee Bee said:

Stage 4 survivor
If I can add my unusual experience, I was diagnosed with metastatic endometrial cancer, Stage 4, eight years ago. I had surgery to remove the tumor which was the size of a tennis ball from my colon and pelvic bone. I was given very little hope. I opted for radiation of that area but not chemo. It was a long road back to feeling normal but after a few years, I took a turn for the better and now, eight years later, I am like a new person. I have no sign of the cancer, my CA 125 remains stable at 7 or 8 and I am able to live a normal life. My oncologist calls me her Miracle Patient. Why did this happen to me? God only knows. When I was diagnosed, I totally accepted God's will for me. I surrendered to his love and accepted what my fate would be. I asked everyone to pray for a peaceful death for me. I received the Sacrament of the Sick from my parish priest and then visited several hospices to see which would work best for me. Now, eight years later, it seems so surreal, a dream that I woke up from. No one can explain my long remission. I accept it and praise and thank God each day for my new state of feeling great and hardly a sick day. If it can happen to me, it can happen to you. God bless you, Christina

Bless you Christina
Your story is truly inspirational...

Thanks for sharing!

norma2

Cee Bee said:

Stage 4 survivor
If I can add my unusual experience, I was diagnosed with metastatic endometrial cancer, Stage 4, eight years ago. I had surgery to remove the tumor which was the size of a tennis ball from my colon and pelvic bone. I was given very little hope. I opted for radiation of that area but not chemo. It was a long road back to feeling normal but after a few years, I took a turn for the better and now, eight years later, I am like a new person. I have no sign of the cancer, my CA 125 remains stable at 7 or 8 and I am able to live a normal life. My oncologist calls me her Miracle Patient. Why did this happen to me? God only knows. When I was diagnosed, I totally accepted God's will for me. I surrendered to his love and accepted what my fate would be. I asked everyone to pray for a peaceful death for me. I received the Sacrament of the Sick from my parish priest and then visited several hospices to see which would work best for me. Now, eight years later, it seems so surreal, a dream that I woke up from. No one can explain my long remission. I accept it and praise and thank God each day for my new state of feeling great and hardly a sick day. If it can happen to me, it can happen to you. God bless you, Christina

thank you for posting Cee Bee
I just had my 1 year check up...NED (NO EVIDENCE OF DISEASE) at M. D Anderson Cancer Center in Houston where I was treated. So far there is no cancer to be found. And these folks leave nothing to chance. Colonoscopy, CAT scans, X-rays, blood work, physical exams, etc.....I am blessed. Ca 125 is 23 and has remained so for 10 months. Thanks go to God, who in her infinite mercy saw fit to give me more time, and the super medical care I was lucky enough to have available. I was diagnosed Stage IIIC Grade 2 endometrial cancer with 1 lymph node involved out of 30 Oct/09. Each day is a miracle.

I am so glad for you Cee Bee...you are an inspiration. Thanks for posting your story!!!

daisy366

norma2 said:

thank you for posting Cee Bee
I just had my 1 year check up...NED (NO EVIDENCE OF DISEASE) at M. D Anderson Cancer Center in Houston where I was treated. So far there is no cancer to be found. And these folks leave nothing to chance. Colonoscopy, CAT scans, X-rays, blood work, physical exams, etc.....I am blessed. Ca 125 is 23 and has remained so for 10 months. Thanks go to God, who in her infinite mercy saw fit to give me more time, and the super medical care I was lucky enough to have available. I was diagnosed Stage IIIC Grade 2 endometrial cancer with 1 lymph node involved out of 30 Oct/09. Each day is a miracle.

I am so glad for you Cee Bee...you are an inspiration. Thanks for posting your story!!!

Thank you Christina
I find your story profound - faith and acceptance to the max. Obviously, your work here on earth is not finished. I am taking this lesson from you.

Thanks for sharing, Mary Ann

kkstef

Cee Bee said:

Stage 4 survivor
If I can add my unusual experience, I was diagnosed with metastatic endometrial cancer, Stage 4, eight years ago. I had surgery to remove the tumor which was the size of a tennis ball from my colon and pelvic bone. I was given very little hope. I opted for radiation of that area but not chemo. It was a long road back to feeling normal but after a few years, I took a turn for the better and now, eight years later, I am like a new person. I have no sign of the cancer, my CA 125 remains stable at 7 or 8 and I am able to live a normal life. My oncologist calls me her Miracle Patient. Why did this happen to me? God only knows. When I was diagnosed, I totally accepted God's will for me. I surrendered to his love and accepted what my fate would be. I asked everyone to pray for a peaceful death for me. I received the Sacrament of the Sick from my parish priest and then visited several hospices to see which would work best for me. Now, eight years later, it seems so surreal, a dream that I woke up from. No one can explain my long remission. I accept it and praise and thank God each day for my new state of feeling great and hardly a sick day. If it can happen to me, it can happen to you. God bless you, Christina

Inspirational story!
Christina....what a wonderful, hopeful message you posted. It is obvious that you have a lot more living left. Simply awesome!!

Take care! Karen

bonniep

norma2 said:

thank you for posting Cee Bee
I just had my 1 year check up...NED (NO EVIDENCE OF DISEASE) at M. D Anderson Cancer Center in Houston where I was treated. So far there is no cancer to be found. And these folks leave nothing to chance. Colonoscopy, CAT scans, X-rays, blood work, physical exams, etc.....I am blessed. Ca 125 is 23 and has remained so for 10 months. Thanks go to God, who in her infinite mercy saw fit to give me more time, and the super medical care I was lucky enough to have available. I was diagnosed Stage IIIC Grade 2 endometrial cancer with 1 lymph node involved out of 30 Oct/09. Each day is a miracle.

I am so glad for you Cee Bee...you are an inspiration. Thanks for posting your story!!!

M.D. Anderson Cancer Center
I live in Houston & was diagnosed last year with USPC Stage IIIC. I am going for my 6 month check up next week. I had the surgery, the chemo & the radiation & in Jan, 2011 I was declared 'cancer free'. Even though I love my GYM/ONC, I am really struggling with this remission thing. I look healthy, my bloodwork is excellent, but I don't feel well. In fact I regularly get pain in my mid back area that actually makes me sick to my stomach. It's frequent, but not debilitating. Did I sleep crazy or pull a muscle? Is this all in my head? Since I don't know how this cancer spreads, I have no clue what symptoms should be of concern or not. My ONC seems adament there are specific things to look for so he doesn't seem to be concerned about my specific symptons. I've thought of going to M.D. Anderson but am wondering if it's just because I'm scared.

Anyone who reads this, what kind of symptons are related to USPC. Is there a particular path of recurrance or does it just 'show up' somewhere? I am trying to stay positive, but just don't know what to do when I feel the way I do. Is it real or fear?

Who is your Oncologist? Do you have a team of doctors?

daisy366

bonniep said:

M.D. Anderson Cancer Center
I live in Houston & was diagnosed last year with USPC Stage IIIC. I am going for my 6 month check up next week. I had the surgery, the chemo & the radiation & in Jan, 2011 I was declared 'cancer free'. Even though I love my GYM/ONC, I am really struggling with this remission thing. I look healthy, my bloodwork is excellent, but I don't feel well. In fact I regularly get pain in my mid back area that actually makes me sick to my stomach. It's frequent, but not debilitating. Did I sleep crazy or pull a muscle? Is this all in my head? Since I don't know how this cancer spreads, I have no clue what symptoms should be of concern or not. My ONC seems adament there are specific things to look for so he doesn't seem to be concerned about my specific symptons. I've thought of going to M.D. Anderson but am wondering if it's just because I'm scared.

Anyone who reads this, what kind of symptons are related to USPC. Is there a particular path of recurrance or does it just 'show up' somewhere? I am trying to stay positive, but just don't know what to do when I feel the way I do. Is it real or fear?

Who is your Oncologist? Do you have a team of doctors?

Bonnie
I'm a UPSC sister. I don't have a team - my doc has 2 colleagues and they are the only practice for hundreds of miles. Fortunately he is highly regarded in this field and knows his stuff - I have great confidence and rapport with him. When I started surveillence he told me that anything that lasts 2 weeks and any change in duration, frequency, or intensity of symptom should be reported. He also watched my ca125 which was a good indictor for ME - for others this is not reliable.

I had a recurrence in my supraclavicular lymph nodes. Interestingly I found it - not doc or tests. I found a lump in my neck and brought to doc's attention. He decided to biopsy (it was taken out by EENT and confirmed as UPSC). We then watched ca125 for 4 more months and when it continued to rise a CT/PET was done and then tx done.

So back to you. I'd ask him WHY he is discounting your symptom and go from there. I think your pain is worth an evaluation, though. A second opinion would probably make you feel better - it would me (I had one in beginning). This is done all the time and your doctor shouldn't be bothered by this. Since you are right there, MD Anderson sounds like the best place to go - they have such a good reputation.

Keep us posted here. Sending you courage and hope, Mary Ann

lkchapman

bonniep said:

M.D. Anderson Cancer Center
I live in Houston & was diagnosed last year with USPC Stage IIIC. I am going for my 6 month check up next week. I had the surgery, the chemo & the radiation & in Jan, 2011 I was declared 'cancer free'. Even though I love my GYM/ONC, I am really struggling with this remission thing. I look healthy, my bloodwork is excellent, but I don't feel well. In fact I regularly get pain in my mid back area that actually makes me sick to my stomach. It's frequent, but not debilitating. Did I sleep crazy or pull a muscle? Is this all in my head? Since I don't know how this cancer spreads, I have no clue what symptoms should be of concern or not. My ONC seems adament there are specific things to look for so he doesn't seem to be concerned about my specific symptons. I've thought of going to M.D. Anderson but am wondering if it's just because I'm scared.

Anyone who reads this, what kind of symptons are related to USPC. Is there a particular path of recurrance or does it just 'show up' somewhere? I am trying to stay positive, but just don't know what to do when I feel the way I do. Is it real or fear?

Who is your Oncologist? Do you have a team of doctors?

gallstones
Hi Bonnie,
I finished treatment for my UPSC Stage IIIC in Aug 2009. Not long after I finished I started having pain that radiated to my back. My Gynonc ordered an abdominal ultrasound and found gallstones. Once I had my gallbladder removed the pain diminished although I do still have minor pain in the same place. All my CTs have been clear so far.
If you had taxol your doctor may want to rule out pancreatitis. Although taxol induced pancreatitis is rare, you may have developed it. Pancreatitis pain is frequently felt in the back and that would also explain the nausea.
See if he will check your amylase and lipase levels.

Try not to let fear get the upper hand. I know it kind of feels like you've been abandoned by your doctor once you've finished treatment. It does get better and there are many wonderful women on this board who will lend an ear.

I'm treated at MD Anderson by Dr. Micheal Frumovitz, no team, just the one. )

Hang in there.
Laura