Stage IV Mastasized to Lungs-Newly Diaganosed - Help

spudcat

spudcat

Sorry I am new to this forum

Sorry I am new to this forum and am having some difficulties trying to figure out how to post without all the garbled html info mixed in to the comment, I hope this works this time.

 I was diagnosed in 2015 with Endometrial Carcinoma FIGO II,G2, treated with TAH-BSO.  On April 26 I was given my results and am now FIGO Stage IV since it has mastasized to my right upper lung lobe.
I have been told by my Radiation Oncologist I will be receiving 5 consecutive rounds of radiation and then see my Gyno Oncologist for chemo treatment.  It has been explained to me that this metastasis is not curable but treatable.
I am finding that the doctors won’t give me any definite answers.  They seem to dance around the subject when asked if this is terminal, or what the mortality rate is for this kind of diagnosis.  I understand they do not like to do this however, I am very realistic and am the type of person who needs to know approximately.  If it’s a year or 10 years.  I also understand it is hard for them to say as we do not know yet how I will respond to treatment.  I have read that the prognosis of this is not favorable, if the mass/tumor is over 2 cm you have less chances of survival past 1 year. My question is, does this go into remission or has it gone into remission?  Has anyone gone into remission?
Anyone willing to talk/share their experience, I would be very appreciative of this. 
To all of you who have survived and are going through this now and perhaps again, kudos to you for being strong courageous women.  I beat it first time and you will too.  I cannot stress how important it is to keep that positive attitude.  It worked for me, yes there were days I was down and out but you must pull up your boots straps from the depth of despair and rage on…YOU CAN DO THIS…YOU ARE STRONG ENOUGH TO BEAT THIS!!  Please take those words to heart.  Surround yourselves with support, be it here, internet, facebook, or in person, home, group therapy, whatever, you need that push.
Thanks for listening and sorry for being preachy.  I am still reeling for my news.  Still very emotional.

 

pinky104

Stage IVb Survivor

I was diagnosed with endometrial adenocarcinoma in March of 2010.  It was uterine papillary serous carcinoma, which is a very aggressive (grade 3) form of cancer.  I had surgery and six rounds of chemo, and came out of it with no evidence of disease.  The cancer had metastasized to both ovaries, the omentum, and the small intestine, so my surgery was extensive (I also had my gallbladder and appendix out at the same time as gallstones were found in my CT scan).  I did well for 6 years, then my CA-125 started going just a few points higher, but still in the normal range.  I was told not to worry.  I had a hemoccult test to look for blood in the stool last year, which came back positive in one of the three smears I'd done. I had to have a colonoscopy, which found cancer growing on the outside of my ascending colon.  The gastroeneterologist could see it with the camera in his instrument he used.  He even took a picture of it for me.  I had to have a CT scan, then a PET scan a couple of days later.  I was rushed to surgery the next week as my oncologist in the hospital where I'd had my chemo (where I used to work) and my GYN/onc in another hospital where I'd had my surgery thought I could end up with a bowel obstruction from the cancer wrapping itself around the intestine if I didn't get surgery right away.  Cancer was also found in the peritoneum and the paracolic gutter and it was in the muscle next to my pelvic bone.  Also, I'd had surgery for an incisional hernia (a result of the first big surgery) in 2012.  I kept feeling like the hernia had come back.  It turned out that my intestines had grown into the mesh from the hernia surgery.  My GYN/onc and a general surgeon both worked on me.  My GYN/onc summed it all up by saying "you were a mess inside."  I had two bowel resections and was in the hospital 6 days just like the first time.  I had chemo again and am now with no evidence of disease again.  However, my GYN/onc. thinks it will probably come back again in another 5 years or so.  It was found in two lymph nodes, where the first time, no cancer in them.  So I've now survived 8 years after my original diagnosis.  This is a sneaky cancer.  I thought after five years that I was safe.  However, my mother had breast cancer twice, ten years apart, so I knew it was possible to get it back again more than five years later.  I'm very lucky to be alive with this aggressive cancer.  In just a two month period, my CA-125 went from 14 to 129, so my cancer really grew fast.  I don't have much in the way of symptoms when I have it, so it's hard to know when it's back. 

I thought I heard somewhere that your original stage of cancer is the one to go by, even if it spreads further.  I was considered a stage IVb originally because mine had spread out of the pelvis.  I guess that doesn't really matter.  A spread is a spread, no matter what stage it's called.  I wish you luck with yours.  I hope your treatment is successful.  I thought I'd let you know there are many of us survivors on this site.

 

Kathy G.

Welcome Spudcat!

Welcome Spudcat!

I don't visit the board as often as I used to nor do I post often. However, your fear resonated with me. I remember that fear when diagnosed in 2012. I have been fortunate that I had early stage & low grade cacer, but still...cancer is a life changer. Alot of women here use the term 'your new normal.'

I encourage you to use this board for support, information & education. These ladies are phenominal! I am not sure how well I might have fared mentally & emotionally had I not been here.

 

I wish you the best as you travel this journey.

 

Kathy

spudcat

pinky104 said:

Stage IVb Survivor

I was diagnosed with endometrial adenocarcinoma in March of 2010.  It was uterine papillary serous carcinoma, which is a very aggressive (grade 3) form of cancer.  I had surgery and six rounds of chemo, and came out of it with no evidence of disease.  The cancer had metastasized to both ovaries, the omentum, and the small intestine, so my surgery was extensive (I also had my gallbladder and appendix out at the same time as gallstones were found in my CT scan).  I did well for 6 years, then my CA-125 started going just a few points higher, but still in the normal range.  I was told not to worry.  I had a hemoccult test to look for blood in the stool last year, which came back positive in one of the three smears I'd done. I had to have a colonoscopy, which found cancer growing on the outside of my ascending colon.  The gastroeneterologist could see it with the camera in his instrument he used.  He even took a picture of it for me.  I had to have a CT scan, then a PET scan a couple of days later.  I was rushed to surgery the next week as my oncologist in the hospital where I'd had my chemo (where I used to work) and my GYN/onc in another hospital where I'd had my surgery thought I could end up with a bowel obstruction from the cancer wrapping itself around the intestine if I didn't get surgery right away.  Cancer was also found in the peritoneum and the paracolic gutter and it was in the muscle next to my pelvic bone.  Also, I'd had surgery for an incisional hernia (a result of the first big surgery) in 2012.  I kept feeling like the hernia had come back.  It turned out that my intestines had grown into the mesh from the hernia surgery.  My GYN/onc and a general surgeon both worked on me.  My GYN/onc summed it all up by saying "you were a mess inside."  I had two bowel resections and was in the hospital 6 days just like the first time.  I had chemo again and am now with no evidence of disease again.  However, my GYN/onc. thinks it will probably come back again in another 5 years or so.  It was found in two lymph nodes, where the first time, no cancer in them.  So I've now survived 8 years after my original diagnosis.  This is a sneaky cancer.  I thought after five years that I was safe.  However, my mother had breast cancer twice, ten years apart, so I knew it was possible to get it back again more than five years later.  I'm very lucky to be alive with this aggressive cancer.  In just a two month period, my CA-125 went from 14 to 129, so my cancer really grew fast.  I don't have much in the way of symptoms when I have it, so it's hard to know when it's back. 

I thought I heard somewhere that your original stage of cancer is the one to go by, even if it spreads further.  I was considered a stage IVb originally because mine had spread out of the pelvis.  I guess that doesn't really matter.  A spread is a spread, no matter what stage it's called.  I wish you luck with yours.  I hope your treatment is successful.  I thought I'd let you know there are many of us survivors on this site.

 

pinky104, Thank you. And

pinky104, Thank you. And thank god you posted.  I totally appreciate your story.  I wish this didn't happen to you, I wish this didn't happen to any of us but it does and well, we learn to live with it and do what we need to, to survive.

You have given me hope just when I was thinking all hope is dismal.  Your story is courageous and I love your strong spirit.  Thank you again. 

takingcontrol58

spudcat said:

Sorry I am new to this forum

Sorry I am new to this forum and am having some difficulties trying to figure out how to post without all the garbled html info mixed in to the comment, I hope this works this time.

 I was diagnosed in 2015 with Endometrial Carcinoma FIGO II,G2, treated with TAH-BSO.  On April 26 I was given my results and am now FIGO Stage IV since it has mastasized to my right upper lung lobe.
I have been told by my Radiation Oncologist I will be receiving 5 consecutive rounds of radiation and then see my Gyno Oncologist for chemo treatment.  It has been explained to me that this metastasis is not curable but treatable.
I am finding that the doctors won’t give me any definite answers.  They seem to dance around the subject when asked if this is terminal, or what the mortality rate is for this kind of diagnosis.  I understand they do not like to do this however, I am very realistic and am the type of person who needs to know approximately.  If it’s a year or 10 years.  I also understand it is hard for them to say as we do not know yet how I will respond to treatment.  I have read that the prognosis of this is not favorable, if the mass/tumor is over 2 cm you have less chances of survival past 1 year. My question is, does this go into remission or has it gone into remission?  Has anyone gone into remission?
Anyone willing to talk/share their experience, I would be very appreciative of this. 
To all of you who have survived and are going through this now and perhaps again, kudos to you for being strong courageous women.  I beat it first time and you will too.  I cannot stress how important it is to keep that positive attitude.  It worked for me, yes there were days I was down and out but you must pull up your boots straps from the depth of despair and rage on…YOU CAN DO THIS…YOU ARE STRONG ENOUGH TO BEAT THIS!!  Please take those words to heart.  Surround yourselves with support, be it here, internet, facebook, or in person, home, group therapy, whatever, you need that push.
Thanks for listening and sorry for being preachy.  I am still reeling for my news.  Still very emotional.

 

A Stage IV survivor- in complete remission

Spudcat,
I was originally diagnosed with Stage 3b, Grade 3 endometrioid adenocarcinoma in Nov 2014.
Two months later, cancer metastasized all over my body, before I was to start chemo, for
a total surface area of 34 cm of tumors (liver, spleen, vaginal cuff/outer rectum, nodules
on lungs, outer colon and spleen).
My only standard cancer treatment was a hysterectomy and 6 infusions of Taxol/Carbo.
No radiation.

You can read my entire story that I posted on this site back in Jan 2016.

https://csn.cancer.org/node/299313

I personally believe that the only way to get to remission when you have advanced or
metastatic cancer is with integrative cancer treatment. A combination of minimal standard
treatment and complementary treatments.  You have to treat the root causes of your cancer
or new cancer can always return.  Chemo and radiation do not address the root causes of what
made cancer grow in your body. They may kill an existing tumor but do not prevent new tumors
from forming.  And be aware, surgery can spread cancer.  I am a perfect example of that. When
you do surgery on a toxic body, the cancer cells get loose and travel elsewhere.

After acquiring 34cm of new tumors after surgery, nearly 90% of them disappeared
two months later, after only 3 chemo sessions and going on metformin.  After my 6th
and last chemo, I still had 2cm of tumors left (which disappeared without any
additional cancer treament). That is what you are starting with (about 1in of tumor).
I was no longer afraid with only 2cm of tumors. Doctors were pushing more chemo
and another cancer pill, but I said no.

My post above goes into a bit more detail.  I am also on a supplementation plan of 44 
supplements and aspirin, though some supplements are for other issues than cancer.

My last chemo was 3 years ago.  I have been in remission since March 2015- in total
remission since August 2015.

Your doctor doesn't know who will live or die.  I hate when doctors tell patients these things.
They give you these stats because this is what happens when you follow their instructions
exactly and get too much "standard"cancer treatment.  Ask your doctor if he ever put a 
patient in complete remission from Stage IV cancer who has remained in complete remission
for nearly 3 years.

I do not believe you can ever cure cancer, but you can heal your cancer.  Just like you heal
a wound.

Please be careful with getting too much "standard' cancer treatment.  It is very dangerous.
Remember, cancer is "you" your cells, not some monster.  Treat your cells well so they can heal.
I never believed cancer was going to kill me.  You have to believe in yourself and your body's
ability to heal.

If you want to know more about all I did and still do today to stay in remission, you can send me a private message.

Takingcontrol58