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A candid answer about prognosis

Hello, so I've posted my sister's diagnosis on several posts here. In summary, she was diagnosed with Uterine Cancer. Was staged 1A grade 2 after surgery. Had radiation just as a precaution becuase of the grade 2 cancer. Her CT scan prior to surgery was negative for pelvis, abdomen and lungs.  4 months after surgery, she had a stomach ache, went to ER where they gave her a CT scan and found multiple small masses in her pelvis and abdomen. She had a needle biospsy which confirmed the cancer was back. She is now in her first of 6 Carbol/Taxol treatments, each one 3 weeks apart.  Of course we all hope and wish for the best prognosis, but she's at the point of wanting to know what to expect. She hasnt really asked her Dr about "the prognosis" becuase I dont think she wanted to know at the time. She goes back to see him on the 6th of October where I do believe she will talk to him more about it. In the meantime, aside from the hope that she'll be fine...is it more probable than not that she will go into full remission and stay that way for a long time? Is it inevitable that it will be back within a few years? If anyone with a similar diagnosis could help shed some light on it, I'd really appreciate it. Thanks.  BTW, she is 46, no other serious health issues.

Comments

  • Kaleena
    Kaleena Member Posts: 2,059
    Forget about asking about

    Forget about asking about prognosis, unless you really want to know.    And if you really ask, the doctor's dont really know.   It is based on statistics and as a poster here has said "we are a statistic of 1".    Everyone is different.  Focus on the positive things.   I know it is hard to do.   Also, you can always get a second opinion.   I got 3 in fact one time.   Do what is right for you and your sister.  You take charge.   Listen to what they say and if you don't like it don't do it, or do it. or seek another doctor.   Don't go by what 1 doctor says.   Also for second opinions, make sure your current doctor isn't associated with them.

    I was Grade 2, Stage 3a diagnosed at age 45.   Found by a "routine" hysterectomy.   (I just celebrated by 10 year anniversary in Sept)

    I was also told that I was not curable only treatable.

    I also had my port in for 6 years because no one wanted to remove it "just in case".

    I did have a recurrence in 2009 and maybe looking at something now but I learned you have to be your own advocate.

    My best to you and your sister.

     

    Kathy

  • ayostacey
    ayostacey Member Posts: 57
    Thank you Kathy, I can always

    Thank you Kathy, I can always count on you for good advice.

  • survivingsu
    survivingsu Member Posts: 134
    Kathy has excellent advice!!!

    Kathy nailed it.  We are all statistics of one.  Six years ago I had a very rare form of small cell undifferentiated uterine carcinoma at the age of 50.  No idea of the exact stage or degree, I only knew I was very sick and underwent chemo & radiation simultaneously, then 3 internal brachy radiations, then surgery, then follow-up chemo.  I didn't look up statistics until I was through my treatment, I knew they were bad and wanted to focus on my family, and the good work the drs, nurses and techs were doing instead.  It was a good thing I didn't look at statistics online, they were very, very bad for this form of cancer, and there were very few studies and the studies that were available were out of date, with what looked like zero survivors after 5 years.  I recommend trusting in people rather than statistics - the folks who specialize in your sister's disease, family as support, and your sister's own spirit.

    Sending my very best to you & your sister,

    Susan

     

  • oldbeauty
    oldbeauty Member Posts: 319 **
    ayostacey said:

    Thank you Kathy, I can always

    Thank you Kathy, I can always count on you for good advice.

    Candid answer? Doubtful.

    If your sister really wants a "candid" prognosis, I think she will be disappointed.  No one really knows.  Perhaps she'll be told the statistics about the length of time between progression of disease after her particular chemo regimen.  I wonder how useful that is.  I was diagnosed with endometrial adenocarcinoma in 2005, stage IC, grade II; had a hysterectomy and external radiation and declared "cured."  Recurrence came in 2012 (actually, I believe it was there to be diagnosed in 2010 but my pain complaint was pursued as musculoskeletal to no definitive end until the tumor was discovered in 2012).  Another round of external radiation and put on high-dose progesterone therapy (this done in Australia; in my experience, USA doctors seem to  reject efficacy of hormone therapy).  No one I've seen since I returned to the USA believes I got good treatment in Australia, but at least my current doctor admits,if I'd consulted him about my recurrence, nothing he could have done for me (chemo) could have delivered a superior result to what I have now: 3 years on and no evidence of disease.  I know that eventually the hormone will cease to be effective but no one can say when.  Who knows what tricks they will have learned by then when I have to face the chemo decision.  I think once you are dealing with recurrence you are best served by finding ways to cope with uncertainty and focus on this not as a killer but a chronic disease to be managed.  Of course, that is easier said than done.  I was given to believe I wouldn't last long; sometimes I feel sheepish about meeting up with old friends in robust good health after I'd communicated my impending doom!  The point is she is just a statistic of one and no one really knows what her individual prognosis is.  Perhaps your sister might be aided by consultations with a qualified therapist to help her migrate through the emotions, whether it's grief, anger, uncertainty, fear, etc.  There are many ladies on this board who recurred and have found a way to deal with uncertainty and enjoy a "normal" life.  I am sorry your sister and you are sharing this journey; at least she has a courageous supporter and partner in you; I'm sure you are an enormous source of relief and strength for her at a difficult time.  Best wishes, oldbeauty

  • AWK
    AWK Member Posts: 364
    I haven't ever asked about prognosis.

    I was diagnosed Stage IIIC UPSC in April 2013.  Other opinions have me at Stage IVB Due to differences related to the furthest met from the uterus and taking into consideration involvement of my right ovary.  as the ladies noted - we are statistics of one.   have been in continuous treatment since then with mets discovered right after I finished frontline chemo.  As relayed by my doctors our goal is stability with no new growth first and secondarily reduction in active cancer.  As several doctors have noted - we use a treatment until there is progression and then move on to the next thing.  

    The idea is to string together different treatments that extend stability until the medicines catch up with the disease.  most recently that is happening in a clinical trial I am participating in; not only am I stable but they are seeing reduction in the existing mets preliminarily.  The results are early but encouraging.  

    In my mind and encouraged by my doctors we are looking at this as a chronic disease.  Remission isn't really discussed.  I do live fully though.  We take trips around my treatment schedules, I ride horses, I enjoy life.  I worked up until July of this year - I also took a leave from work during my frontline treatments.  My plan is to get back to work once I settle into this trial and the after effects of it.  

    My goal is living fully each and every day I do, even on bad days vegging out at home.  Hang in there in take things one day at a time.  Sending hugs and prayers.  Anne

  • ayostacey
    ayostacey Member Posts: 57
    oldbeauty said:

    Candid answer? Doubtful.

    If your sister really wants a "candid" prognosis, I think she will be disappointed.  No one really knows.  Perhaps she'll be told the statistics about the length of time between progression of disease after her particular chemo regimen.  I wonder how useful that is.  I was diagnosed with endometrial adenocarcinoma in 2005, stage IC, grade II; had a hysterectomy and external radiation and declared "cured."  Recurrence came in 2012 (actually, I believe it was there to be diagnosed in 2010 but my pain complaint was pursued as musculoskeletal to no definitive end until the tumor was discovered in 2012).  Another round of external radiation and put on high-dose progesterone therapy (this done in Australia; in my experience, USA doctors seem to  reject efficacy of hormone therapy).  No one I've seen since I returned to the USA believes I got good treatment in Australia, but at least my current doctor admits,if I'd consulted him about my recurrence, nothing he could have done for me (chemo) could have delivered a superior result to what I have now: 3 years on and no evidence of disease.  I know that eventually the hormone will cease to be effective but no one can say when.  Who knows what tricks they will have learned by then when I have to face the chemo decision.  I think once you are dealing with recurrence you are best served by finding ways to cope with uncertainty and focus on this not as a killer but a chronic disease to be managed.  Of course, that is easier said than done.  I was given to believe I wouldn't last long; sometimes I feel sheepish about meeting up with old friends in robust good health after I'd communicated my impending doom!  The point is she is just a statistic of one and no one really knows what her individual prognosis is.  Perhaps your sister might be aided by consultations with a qualified therapist to help her migrate through the emotions, whether it's grief, anger, uncertainty, fear, etc.  There are many ladies on this board who recurred and have found a way to deal with uncertainty and enjoy a "normal" life.  I am sorry your sister and you are sharing this journey; at least she has a courageous supporter and partner in you; I'm sure you are an enormous source of relief and strength for her at a difficult time.  Best wishes, oldbeauty

    "focus on this not as a

    "focus on this not as a killer but a chronic disease to be managed".........I LOVE that. thank you!

  • ayostacey
    ayostacey Member Posts: 57

    Kathy has excellent advice!!!

    Kathy nailed it.  We are all statistics of one.  Six years ago I had a very rare form of small cell undifferentiated uterine carcinoma at the age of 50.  No idea of the exact stage or degree, I only knew I was very sick and underwent chemo & radiation simultaneously, then 3 internal brachy radiations, then surgery, then follow-up chemo.  I didn't look up statistics until I was through my treatment, I knew they were bad and wanted to focus on my family, and the good work the drs, nurses and techs were doing instead.  It was a good thing I didn't look at statistics online, they were very, very bad for this form of cancer, and there were very few studies and the studies that were available were out of date, with what looked like zero survivors after 5 years.  I recommend trusting in people rather than statistics - the folks who specialize in your sister's disease, family as support, and your sister's own spirit.

    Sending my very best to you & your sister,

    Susan

     

    The statistics found online

    The statistics found online are scary for sure! I dont beileve in them and I besides even if it said there is a 5 percent chance of 5 year survival, whose to say she's not going to be the 5 percent...I think her age and overall health will be on her side.

  • ayostacey
    ayostacey Member Posts: 57
    AWK said:

    I haven't ever asked about prognosis.

    I was diagnosed Stage IIIC UPSC in April 2013.  Other opinions have me at Stage IVB Due to differences related to the furthest met from the uterus and taking into consideration involvement of my right ovary.  as the ladies noted - we are statistics of one.   have been in continuous treatment since then with mets discovered right after I finished frontline chemo.  As relayed by my doctors our goal is stability with no new growth first and secondarily reduction in active cancer.  As several doctors have noted - we use a treatment until there is progression and then move on to the next thing.  

    The idea is to string together different treatments that extend stability until the medicines catch up with the disease.  most recently that is happening in a clinical trial I am participating in; not only am I stable but they are seeing reduction in the existing mets preliminarily.  The results are early but encouraging.  

    In my mind and encouraged by my doctors we are looking at this as a chronic disease.  Remission isn't really discussed.  I do live fully though.  We take trips around my treatment schedules, I ride horses, I enjoy life.  I worked up until July of this year - I also took a leave from work during my frontline treatments.  My plan is to get back to work once I settle into this trial and the after effects of it.  

    My goal is living fully each and every day I do, even on bad days vegging out at home.  Hang in there in take things one day at a time.  Sending hugs and prayers.  Anne

    I keep thinking the same

    I keep thinking the same thing...lets keep her stabalized until a better treatment comes along. Its people like you who are doing the trials that are bringing hope for people like my sister! Thank you for that! Praying for your continued success with treatment!

  • pinky104
    pinky104 Member Posts: 574
    ayostacey

    When I was first diagnosed, I asked my oncologist what my odds were.  He said he didn't like to discuss that.  He said that if you have a cancer where 90% of the people survive, but you happen to be in the other 10%, the odds do you no good.  I called another employee at the Cancer Center who told me she researched the odds for me.  The only place she could find a mention of them at the time was on oncolink.com.  I'd seen my CT scan report at that time (I worked in the hospital) but didn't know my stage.  I knew my cancer was pretty extensive in the abdomen. She told me it sounded like I was in a stage where my odds for survival would be about 15%.  I really didn't want to hear that.

    After surgery, I was found to have stage IVB UPSC, with cancer in the uterus, both ovaries, and the small intestine.  A few months ago, someone posted a link on this site to a report of a society of gynecological oncologists, who said that in stage IV, there is a 9% survival rate for UPSC.  I should be dead, going by the odds.  Instead I'm five years out from surgery and chemo (no radiation) and am in remission with no recurrences.  I'm very glad to be one of the 9%.  I don't know if it'll last forever or not, but it's great to be where I am now.  There are just no guarantees in life.  Just take life day to day and fight the battles when they occur.  That's all you can do, and all your sister can do.  Good luck.

  • ayostacey
    ayostacey Member Posts: 57
    pinky104 said:

    ayostacey

    When I was first diagnosed, I asked my oncologist what my odds were.  He said he didn't like to discuss that.  He said that if you have a cancer where 90% of the people survive, but you happen to be in the other 10%, the odds do you no good.  I called another employee at the Cancer Center who told me she researched the odds for me.  The only place she could find a mention of them at the time was on oncolink.com.  I'd seen my CT scan report at that time (I worked in the hospital) but didn't know my stage.  I knew my cancer was pretty extensive in the abdomen. She told me it sounded like I was in a stage where my odds for survival would be about 15%.  I really didn't want to hear that.

    After surgery, I was found to have stage IVB UPSC, with cancer in the uterus, both ovaries, and the small intestine.  A few months ago, someone posted a link on this site to a report of a society of gynecological oncologists, who said that in stage IV, there is a 9% survival rate for UPSC.  I should be dead, going by the odds.  Instead I'm five years out from surgery and chemo (no radiation) and am in remission with no recurrences.  I'm very glad to be one of the 9%.  I don't know if it'll last forever or not, but it's great to be where I am now.  There are just no guarantees in life.  Just take life day to day and fight the battles when they occur.  That's all you can do, and all your sister can do.  Good luck.

    Amazing! Thank you for your

    Amazing! Thank you for your reply. I think she is at the point now....maybe over the initial shock of it all....where she is trying to know what to expect. Up until now, she hasnt aksed a lot of questions because I just don't think she wanted to know. She has a husband and 2 teenage boys and as she put it, "I want to know for everyone else's sake".   My initial reply was exactly what you all have been telling me...that the Dr's themselves really dont know.  She goes on the 6th of October to see her Dr again, hopefully he gives her a positive outlook.  She likes her Dr, I thougt he was great...but then again, I only saw him with her prior to surgery when he basically said this will be done and over! ugh.

  • ayostacey
    ayostacey Member Posts: 57
    I just found out my sisters

    I just found out my sisters cancer was actually grade 3 not grade 2 with LVI. I think this info was from the Path report after surgery. Does this change her prognosis or treatability?

  • Hybridspirits
    Hybridspirits Member Posts: 209
    ayostacey said:

    I just found out my sisters

    I just found out my sisters cancer was actually grade 3 not grade 2 with LVI. I think this info was from the Path report after surgery. Does this change her prognosis or treatability?

    grade 3 LVI

    I believe LVI is Lymphatic vessel invasion?  possibly on the way but didn't make it to the lymph notes.  My pathology was grade 3 not MMT/USPC. I actually had two second opinons to confirm this.  the Oncologist at Dana Farber explained that grade 3 not MMT/USPC was much better than MMT/USPC but the grade 3 presents itself as unpredictable.  Not always negative just unpredictable.  My stage was 1A with one second opinion saying defniately not LVI (Dana Farber) and the second second opinion at Memorial Sloan said LVI.  Go figure,  Dana Farber knowing this actually asked for another sample and still insisted on not.  Either way I haven't focused on prognosis as all my Dr's do remind me that what happens to someone else is so different than me and the factors involved are not the same so it is hard to extropolate historical data on the future.

     

    what I found to be useful is to focus on doing everything possible to insure the best outcome as possible.  Get second opinions if that will help you feel more comfortable.  After we had differences in pathology reports between three hospitals, my primary team had me got back to Dana Farber for a second opinion on radiation.  I find that this while takes time and resources helps you feel  you are doing eveything possible to get the best out come

     

    I am 57 years old, diagnosed 11/2012, surgery 12/12/12, chemo and internal radiation 2013.  Have had scans every 6 months since and so far things are okay.  I have added a naturopath that specializes in oncology to my approach which my regular dr's are aware of which has helped insure my body/immune system is as strong and protective as I can make it. 

     

    Your sister is very lucky to have you as her advocate

     

    Sharon

  • ayostacey
    ayostacey Member Posts: 57

    grade 3 LVI

    I believe LVI is Lymphatic vessel invasion?  possibly on the way but didn't make it to the lymph notes.  My pathology was grade 3 not MMT/USPC. I actually had two second opinons to confirm this.  the Oncologist at Dana Farber explained that grade 3 not MMT/USPC was much better than MMT/USPC but the grade 3 presents itself as unpredictable.  Not always negative just unpredictable.  My stage was 1A with one second opinion saying defniately not LVI (Dana Farber) and the second second opinion at Memorial Sloan said LVI.  Go figure,  Dana Farber knowing this actually asked for another sample and still insisted on not.  Either way I haven't focused on prognosis as all my Dr's do remind me that what happens to someone else is so different than me and the factors involved are not the same so it is hard to extropolate historical data on the future.

     

    what I found to be useful is to focus on doing everything possible to insure the best outcome as possible.  Get second opinions if that will help you feel more comfortable.  After we had differences in pathology reports between three hospitals, my primary team had me got back to Dana Farber for a second opinion on radiation.  I find that this while takes time and resources helps you feel  you are doing eveything possible to get the best out come

     

    I am 57 years old, diagnosed 11/2012, surgery 12/12/12, chemo and internal radiation 2013.  Have had scans every 6 months since and so far things are okay.  I have added a naturopath that specializes in oncology to my approach which my regular dr's are aware of which has helped insure my body/immune system is as strong and protective as I can make it. 

     

    Your sister is very lucky to have you as her advocate

     

    Sharon

    Thank you Sharon, I had asked

    Thank you Sharon, I had asked on the other post, where you had commented about the LVI, about your cancer and if you had a reoccurance. I'm glad to see you have not and are still going strong.  Thanks for your reply and the great information. 

     

    May you continue to remain blessed!

     

    Stacey

  • pinky104
    pinky104 Member Posts: 574
    ayostacey

    If it helps any, I had grade 3 cancer, UPSC, with my stage IVb diagnosis.  My lymph nodes were not affected at all and no LVI was mentioned.  I  had a regional spread (uterus, both ovaries, omentum, and small intestine). 

  • Abbycat2
    Abbycat2 Member Posts: 644
    pinky104 said:

    ayostacey

    If it helps any, I had grade 3 cancer, UPSC, with my stage IVb diagnosis.  My lymph nodes were not affected at all and no LVI was mentioned.  I  had a regional spread (uterus, both ovaries, omentum, and small intestine). 

    Pinky, about that research study

    you mentioned on 9/29 above , it is one that I posted almost a year ago. It states that disease free survival was 6% for stage IVB and overall survival was 9%. To find my post, type in the title Research study on UPSC and it will come up. It's the only research study I found that quoted survival statistics for this grade 3 cancer based on stage and treatment.

    Cathy