Staging after Metastasis

ayostacey

Hello,

 

My sister is about to start chemo for reoccurance of endometrial cancer. It has metastisized to other areas, there are about 6 small tumors found 4 months after surgery and radiation. They never re-staged her, which is something I thought that they'd do. Ive been looking on line at treatment and statistics for her prognosis, but I dont know what stage to assoicate with her. The tumors are in the intraperitoneal and extraperitoneal abdomen and pelvis, lower quadrant peritoneal fat, small midline periumbilial ventral hernia, ectus abdominis muscle anterior surface, external iliac lymph node chaine and pelvic sidewall. Are these mets considered "abdomen and pelvis"? So is she in the III C group?  Its all so confusing. Thanks for any light you can shed on it.

AWK

Hi, sorry to see this.

Your sister's journey is very similar to mine.  Mets were found within a couple of weeks of finishing chemo and radiation.  I was originally Stage IIIC.  They found five mets, all spread out and in my case adjacent to organs including both kidneys, diaphragm, liver and one inside my pericardial sac resting on my heart.  My original diagnosis was in April 2013.  All of my mets are inoperable.  They were only able to biopsy one which reconfirmed UPSC and the assumption is all were the same.  Since then I have gotten a second opinion and two others as we worked with my team to find clinical trials after two different treatment lines stopped being effective.  They kept me stable for a period of time and then we would have more growth or last April through June - more mets.  

With each opinion I was staged IVB although all opinions confirmed my treatments to date as the line and nothing would have been handled differently.  The difference of opinion is related to the distance to my furthest met in my original surgery.  I am now in a clinical trial that is having success so far.  In the meantime I have been told our goal is first stability for extended periods of time, second to shrink or reduce existing cancer.  I have never asked about prognosis and am aware of statistics but am really focused on myself.  I live fully on the days that I feel well, the days that I don't are temporary post treatment things and I rest.  Overall I am doing well.  

I was 50 at diagnosis, very healthy and still menstruating.  My advice, unsolicited of course - stick to the known websites such as the National Cancer Institute, MD Anderson, Memorial Sloan Kettering etc.  Are you able to join her at doctor's appointments?

sending hugs and prayers.  She is lucky to have you.  Anne

ayostacey

AWK said:

Hi, sorry to see this.

Your sister's journey is very similar to mine.  Mets were found within a couple of weeks of finishing chemo and radiation.  I was originally Stage IIIC.  They found five mets, all spread out and in my case adjacent to organs including both kidneys, diaphragm, liver and one inside my pericardial sac resting on my heart.  My original diagnosis was in April 2013.  All of my mets are inoperable.  They were only able to biopsy one which reconfirmed UPSC and the assumption is all were the same.  Since then I have gotten a second opinion and two others as we worked with my team to find clinical trials after two different treatment lines stopped being effective.  They kept me stable for a period of time and then we would have more growth or last April through June - more mets.  

With each opinion I was staged IVB although all opinions confirmed my treatments to date as the line and nothing would have been handled differently.  The difference of opinion is related to the distance to my furthest met in my original surgery.  I am now in a clinical trial that is having success so far.  In the meantime I have been told our goal is first stability for extended periods of time, second to shrink or reduce existing cancer.  I have never asked about prognosis and am aware of statistics but am really focused on myself.  I live fully on the days that I feel well, the days that I don't are temporary post treatment things and I rest.  Overall I am doing well.  

I was 50 at diagnosis, very healthy and still menstruating.  My advice, unsolicited of course - stick to the known websites such as the National Cancer Institute, MD Anderson, Memorial Sloan Kettering etc.  Are you able to join her at doctor's appointments?

sending hugs and prayers.  She is lucky to have you.  Anne

Hi, yes, I was reading one of

Hi, yes, I was reading one of your posts about the sucess so far with your clinical trial. I was so happy for you and EVERYONE becuase that means they are discovering new things to help  flight and beat cancer! I was going to the Dr appointments with my sister up until she had her initial surgery and then the radiation. I thought she was on the road to recovery since the Dr's pretty much told her she had a 99 percent chance it will never come back.  I had to travel out of the country for business and I was here when she told me it came back.  Ive been devestated being so far from her and I cant get back til next month! Meanwhile she starts her chemo tomorrow.  One of the most frustrating things about this journey has been the waiting. Waiting to see the Dr..waiting to get the test results...waiting to start the treatment. And now it will be 3 months into her chemo before she has a CT scan to even know if its working. I wil stick to those sites and I also try to take into comsideration that a lot of information on the web might be outdated. 

Thank you so much for sharing your story and knowledge! Im praying for your continued success in treatment! ...Stacey

AWK

ayostacey said:

Hi, yes, I was reading one of

Hi, yes, I was reading one of your posts about the sucess so far with your clinical trial. I was so happy for you and EVERYONE becuase that means they are discovering new things to help  flight and beat cancer! I was going to the Dr appointments with my sister up until she had her initial surgery and then the radiation. I thought she was on the road to recovery since the Dr's pretty much told her she had a 99 percent chance it will never come back.  I had to travel out of the country for business and I was here when she told me it came back.  Ive been devestated being so far from her and I cant get back til next month! Meanwhile she starts her chemo tomorrow.  One of the most frustrating things about this journey has been the waiting. Waiting to see the Dr..waiting to get the test results...waiting to start the treatment. And now it will be 3 months into her chemo before she has a CT scan to even know if its working. I wil stick to those sites and I also try to take into comsideration that a lot of information on the web might be outdated. 

Thank you so much for sharing your story and knowledge! Im praying for your continued success in treatment! ...Stacey

Hang in there

The waiting is tough and I think harder on those around us than the patient at times.  Three months for the scans is pretty typical; they need to give the drugs time to work and hopefully for new healthy cells to replace dying bad cells.  How often are her treatments?  We would do something to mark the end of each cycle.  It gives me something to look forward to and helps pass the time while continuing to make new memories.  

Hang in there.  I still say the support team has the hardest job.  My circle has been amazing but I see how tough it is.

hugs and prayers for both of you.  Anne

ayostacey

AWK said:

Hang in there

The waiting is tough and I think harder on those around us than the patient at times.  Three months for the scans is pretty typical; they need to give the drugs time to work and hopefully for new healthy cells to replace dying bad cells.  How often are her treatments?  We would do something to mark the end of each cycle.  It gives me something to look forward to and helps pass the time while continuing to make new memories.  

Hang in there.  I still say the support team has the hardest job.  My circle has been amazing but I see how tough it is.

hugs and prayers for both of you.  Anne

She will have chemo every

She will have chemo every three weeks for 6 sessions. Carboplatin/Taxol. Is chemo really debilitating ? Or is it different for everyone? And do you stay sick the whole time you are in treatment? I hate to think of her sick during the holidays! Thank you for all your help..its so generous of you to help other people goign through the process. Stacey

TeddyandBears_Mom

ayostacey said:

She will have chemo every

She will have chemo every three weeks for 6 sessions. Carboplatin/Taxol. Is chemo really debilitating ? Or is it different for everyone? And do you stay sick the whole time you are in treatment? I hate to think of her sick during the holidays! Thank you for all your help..its so generous of you to help other people goign through the process. Stacey

Stacey

Chemo impacts each of us a bit differently but still has a lot of similarities. Several of us are posting the impacts on another thread that may help you get a sense of what to expect. The title of the thread starts out with Ladies currently going through treatment (or something like that). It is up higher in the list of topics. Anne (AWK) started it for us.  The 6 rounds of Carbo/Taxil is the "standard" treatment from what I understand.  And, based on what others have said, there are generally 3-4 days in the cycle that are the most impactful. Sometimes a few more days too.

I am getting weekly treatments instead of every 3 weeks and my impacts are 3 crappy days, 3 good days and chemo day.  The hardest part for me has been the fatigue. Energy levels never get up to what I would consider normal. But, the good days are good enough to do house keeping and cooking type stuff. I wouldn't want to try to run a marathon though. :-)

Hope this helps. I know it is hard being that far away from your sister.

Cindi

ayostacey

TeddyandBears_Mom said:

Stacey

Chemo impacts each of us a bit differently but still has a lot of similarities. Several of us are posting the impacts on another thread that may help you get a sense of what to expect. The title of the thread starts out with Ladies currently going through treatment (or something like that). It is up higher in the list of topics. Anne (AWK) started it for us.  The 6 rounds of Carbo/Taxil is the "standard" treatment from what I understand.  And, based on what others have said, there are generally 3-4 days in the cycle that are the most impactful. Sometimes a few more days too.

I am getting weekly treatments instead of every 3 weeks and my impacts are 3 crappy days, 3 good days and chemo day.  The hardest part for me has been the fatigue. Energy levels never get up to what I would consider normal. But, the good days are good enough to do house keeping and cooking type stuff. I wouldn't want to try to run a marathon though. :-)

Hope this helps. I know it is hard being that far away from your sister.

Cindi

Thankk you again for your

Thankk you again for your information. I found the thread and I'm sharing some of the experiences I'm reading on it with her. Thanks for your help!!

pinky104

ayostacey

Regarding the staging, this is what happened to me with my original diagnosis:  I had cancer found in the uterus, both ovaries, the omentum, and the small intestine.  Nothing was found in my lymph nodes.  When my gyn/onc told me my stage, he said it was IVb (the worst possible stage) only because it had "spread out of the pelvis."  I'm a 5 year survivor with no metastases.  I'm not sure if this helps you or not, but I thought I'd throw in my two cents.

ayostacey

pinky104 said:

ayostacey

Regarding the staging, this is what happened to me with my original diagnosis:  I had cancer found in the uterus, both ovaries, the omentum, and the small intestine.  Nothing was found in my lymph nodes.  When my gyn/onc told me my stage, he said it was IVb (the worst possible stage) only because it had "spread out of the pelvis."  I'm a 5 year survivor with no metastases.  I'm not sure if this helps you or not, but I thought I'd throw in my two cents.

wow, 5 years out after Stage

wow, 5 years out after Stage IVb, may God continue to bless you!!! If her mets were found in her peritoneum  and lower abdomen, is it considered, distant or regional? Does anyone know?

Abbycat2

ayostacey said:

wow, 5 years out after Stage

wow, 5 years out after Stage IVb, may God continue to bless you!!! If her mets were found in her peritoneum  and lower abdomen, is it considered, distant or regional? Does anyone know?

Chemo is doable, ayostacey

 

I am sorry to hear about your sister and can only imagine how difficult this is for you, especially not living close to her.  I was diagnosed with UPSC Stage 3A in Oct, 2013 and had 6 cycles of Carboplatin and Taxol.  This is usually the initial treatment for an aggressive cancer like UPSC.  For the most part, I breezed through the chemo.  My chemo induced symptoms- nausea especially- appeared three days after each chemo cycle.  The worst part was the very severe back pain that I developed after cycle 1, so severe in fact that I had to have two epidural shots which eliminated my suffering.  I also have neuropathy in my toes and balls of both feet, thanks to the Taxol. This has not improved or gotten worse.   I am not sure if when cancer progresses,  the person's stage is actually changed.  If a woman has distant metastases- in the upper abdomen or lungs or liver, for example, I believe that makes it a stage 4. Regional metastasis would be cancer that remains in the pelvic area, such as in the lymph nodes, cervix, ovaries or urinary bladder.

Warm Wishes,

Cathy

 

 

 

ayostacey

Abbycat2 said:

Chemo is doable, ayostacey

 

I am sorry to hear about your sister and can only imagine how difficult this is for you, especially not living close to her.  I was diagnosed with UPSC Stage 3A in Oct, 2013 and had 6 cycles of Carboplatin and Taxol.  This is usually the initial treatment for an aggressive cancer like UPSC.  For the most part, I breezed through the chemo.  My chemo induced symptoms- nausea especially- appeared three days after each chemo cycle.  The worst part was the very severe back pain that I developed after cycle 1, so severe in fact that I had to have two epidural shots which eliminated my suffering.  I also have neuropathy in my toes and balls of both feet, thanks to the Taxol. This has not improved or gotten worse.   I am not sure if when cancer progresses,  the person's stage is actually changed.  If a woman has distant metastases- in the upper abdomen or lungs or liver, for example, I believe that makes it a stage 4. Regional metastasis would be cancer that remains in the pelvic area, such as in the lymph nodes, cervix, ovaries or urinary bladder.

Warm Wishes,

Cathy

 

 

 

Ok, so if some of the mets

Ok, so if some of the mets were found in lower abdomen that would be considered distant? I just still cant beleive its only been four months since surgery and radiation and there are already tumors. I would think that the "cells" or "seedings" as I think I saw someone refer to them as would've been discovered at time of surgery. My sister has had a back injury since right before this began. She had been consulting a spine dr who was going to treat it as minimally as possible, then more invasive if necessasry...but then she found out she had cancer and that has all been put on the backburner. Since her chemo yesterday her back and stomach have been hurting badly. She's assuming the back is from her initial injury and is not associating it with the chemo, but i will let her know that you had that as one of your side effects. She is not really supposed to be taking Advil because of bleeding (she spotted the first day of chemo), but she says nothing else really works to relieve the pain. She has tried 2 Vicodin (hydrocodone) and it works for about an hour and then it comes right back.  Thank you once again for your helpful information. This whole forum has been a wealth of information for me.

Sandy3185

Grading

If I'm not mistaken, your grading doesn't change if you have metastasis. So if she was originally diagnosed stage II grade 3, it will not change. It is just a label, I guess. It doesn't really matter what you call it, its very scary. What matters now is making sure she gets the best treatment. 

Everybody reacts differently to chemo. Some get through without to many reactions. Others have a harder time. But we all get through it and for many of us it is the end of cancer's hold on us. Drinking plenty of liquids, trying to get some exercise every day and most of all having someone who cares about you will help her get through this. Your sister is lucky to have you!  Sandy

ccfighter

ayostacey said:

Ok, so if some of the mets

Ok, so if some of the mets were found in lower abdomen that would be considered distant? I just still cant beleive its only been four months since surgery and radiation and there are already tumors. I would think that the "cells" or "seedings" as I think I saw someone refer to them as would've been discovered at time of surgery. My sister has had a back injury since right before this began. She had been consulting a spine dr who was going to treat it as minimally as possible, then more invasive if necessasry...but then she found out she had cancer and that has all been put on the backburner. Since her chemo yesterday her back and stomach have been hurting badly. She's assuming the back is from her initial injury and is not associating it with the chemo, but i will let her know that you had that as one of your side effects. She is not really supposed to be taking Advil because of bleeding (she spotted the first day of chemo), but she says nothing else really works to relieve the pain. She has tried 2 Vicodin (hydrocodone) and it works for about an hour and then it comes right back.  Thank you once again for your helpful information. This whole forum has been a wealth of information for me.

I have cervical cancer, not

I have cervical cancer, not uterine, but I can say that for cervical cancer the stage does not change.  Instead, they add to it.  For example I was diagnosed stage 2A2.  I later had a recurrence (my first post treatment scan spotted it) in my lung and abdomen.  I was then considered a stage 2A2 recurrent and metastatic cervical cancer patient.  I think they do this for statistical purposes.  It doesn't really matter.  I am equivalent to stage IVB and was given my dismal prognosis as such.  That was almost 3 years ago.  I remain NED.  Hope that helps.  Hugs.

ayostacey

ccfighter said:

I have cervical cancer, not

I have cervical cancer, not uterine, but I can say that for cervical cancer the stage does not change.  Instead, they add to it.  For example I was diagnosed stage 2A2.  I later had a recurrence (my first post treatment scan spotted it) in my lung and abdomen.  I was then considered a stage 2A2 recurrent and metastatic cervical cancer patient.  I think they do this for statistical purposes.  It doesn't really matter.  I am equivalent to stage IVB and was given my dismal prognosis as such.  That was almost 3 years ago.  I remain NED.  Hope that helps.  Hugs.

Amazing!! 3 years NED !

Amazing!! 3 years NED ! That's so fabulous. And Ok, I get what you mean now...so they really dont "re-stage" it.  Thanks for sharing.

ayostacey

Sandy3185 said:

Grading

If I'm not mistaken, your grading doesn't change if you have metastasis. So if she was originally diagnosed stage II grade 3, it will not change. It is just a label, I guess. It doesn't really matter what you call it, its very scary. What matters now is making sure she gets the best treatment. 

Everybody reacts differently to chemo. Some get through without to many reactions. Others have a harder time. But we all get through it and for many of us it is the end of cancer's hold on us. Drinking plenty of liquids, trying to get some exercise every day and most of all having someone who cares about you will help her get through this. Your sister is lucky to have you!  Sandy

Thank you Sandy. Yes, Ive

Thank you Sandy. Yes, Ive been telling her to stay hydrated and try to eat even if its small amounts at a time, just to keep her strenght and energy up. Good suggestions and answers.  Thanks!

TeddyandBears_Mom

ayostacey said:

Thank you Sandy. Yes, Ive

Thank you Sandy. Yes, Ive been telling her to stay hydrated and try to eat even if its small amounts at a time, just to keep her strenght and energy up. Good suggestions and answers.  Thanks!

Your sister's back ache

Stacey,

I have no idea if I'm right about this but I'm going to share what I believe happens to me.  I am finding that if I have an area that hurts on my body, it hurts way more after my chemo treatment. So, I have come to the conclusion that chemo elevates the pain to areas that are already hurt/weak or healing.  That may be why your sister's back is hurting more.  I hope she is able to find relief for her pain.

Glad you are there for her. The emotional support is priceless.

Take care,

Cindi

ayostacey

TeddyandBears_Mom said:

Your sister's back ache

Stacey,

I have no idea if I'm right about this but I'm going to share what I believe happens to me.  I am finding that if I have an area that hurts on my body, it hurts way more after my chemo treatment. So, I have come to the conclusion that chemo elevates the pain to areas that are already hurt/weak or healing.  That may be why your sister's back is hurting more.  I hope she is able to find relief for her pain.

Glad you are there for her. The emotional support is priceless.

Take care,

Cindi

Thank you Cindi, that seems

Thank you Cindi, that seems to be the consensus. She's coping with Advil for now, she doesnt like how Vicodin makes her feel and she also doesnt find much relief from it.

Abbycat2

ayostacey said:

Thank you Cindi, that seems

Thank you Cindi, that seems to be the consensus. She's coping with Advil for now, she doesnt like how Vicodin makes her feel and she also doesnt find much relief from it.

ayostacey, your sister has a true supporter in you!

 

You mentioned that you didn't understand why the doctors didn't know that there was still cancer present- individual cells. A pelvic wash done during surgery could detect individual cancer cells floating around in the peritoneal fluid, but there is no other test that can do that. So the word "remission" or the expression "NED" which stands for no evidence of disease, doesn't necessarily mean a cure. Although I am currently NED, my UPSC could be quietly and sneakily growing inside me. My doc assesses my cancer status 3 ways- he wants to know how I feel, that is, do I have symptoms of disease? He checks my Ca 125 Assay test results, although I don't think this is a good marker for me. Lastly, he also does an internal exam to feel for tumors. I think cancer found in the lower abdomen would be considered a local metastasis.

Wishing you and your sister the best,

Cathy