Need some advice...UPSC STAGE IIIC

vbpeterson13

My mother was diagnosed with UPSC stage 3c in august of 2013.  She had 6 rounds of chemo and then radiation.  By the end of radiation treatments (March 2014) she started to complain of neckaches.  She put it off thinking that she would wait until her radiation was over to see a chiropractor.  The neckache continued after radiation so she went to her chiro and adjustments were not working.  In the meantime she saw her oncologist in April 2013 and he told her that she was in remission.  We were elated with the news.  At that appointment, the onocologist ordered a cat scan and told her to wait for a call to confirm her appt.  She never got a call.  Three weeks pass and she went to her family dr to have her neck looked at.  The dr took an xray which showed a mass on her spine and a fracture.  Dr sent the X-ray to a neurologist he ordered a cat scan.  Cat scan showed tumor on her spine, spots on her liver and pelvic lymph nodes. The neurologist contacted her radiologist and he ordered a PET.  The results confirmed cancer had MET to all three locations.  Oncologist was made aware of the results.  Oncologist office called to make an appointment 5 weeks after PET results!!!  She is starting radiation on the tumor on her spine on Monday but what about the lymph nodes and liver???  Since last week a hard lump has been growing from her abdomin and is getting larger everyday.  The radiologist said it is her liver.  I feel like we are losing precious time.

1st question:  Should we be searching for a new oncologist??

2nd question:  What should we be doing??  We feel lost on a path we should take, questions we should be asking, what we should be expecting?

Please, any advice would be so helpful so incredibly helpful!  

Carrie

ConnieSW

Oh, Carrie

I am so sorry for what has happened to your mom.  I haven't had a recurrence of UPSC so don't have practical experience to offer you but know someone who does will be along soon.  However, I would be thinking seriously about another oncologist or at least a second opinion.  Thank goodness the rest of her medical team was looking out for her.  You didn't say but I'm assuming she had surgery with her earlier treatment?  Are you able to go to appts with her?

 

stick with us.  We care.

connie

vbpeterson13

ConnieSW said:

Oh, Carrie

I am so sorry for what has happened to your mom.  I haven't had a recurrence of UPSC so don't have practical experience to offer you but know someone who does will be along soon.  However, I would be thinking seriously about another oncologist or at least a second opinion.  Thank goodness the rest of her medical team was looking out for her.  You didn't say but I'm assuming she had surgery with her earlier treatment?  Are you able to go to appts with her?

 

stick with us.  We care.

connie

Thank you

Thank you so much, Connie.  I am scared beyond belief and exhausted from researching and crying at the same time.  Yes, my mom had a total hysterectomy a week following her diagnosis.  Everything was going so well following the surgery and throughout her treatments.  We were blindsided by this recent news.  We knew of the high rate of reoccurance but we were so sure that she had beaten this horrible cancer. My mom is incredibly positive and prepared to fight again even though she is pain at this time.  I havent had the opportunity to go to appointments with my mom, however, my sister has gone to most of her appointments and if she cannot go, my mom's sisters go with her.  I am a full-time teacher and live two hours away from my mom.  The good news is that my summer break begins next Friday and I will be able to spend a lot of the summer with her.

Thank you for trying to comfort me.  I really need the support.

Carrie

NoTimeForCancer

vbpeterson13 said:

Thank you

Thank you so much, Connie.  I am scared beyond belief and exhausted from researching and crying at the same time.  Yes, my mom had a total hysterectomy a week following her diagnosis.  Everything was going so well following the surgery and throughout her treatments.  We were blindsided by this recent news.  We knew of the high rate of reoccurance but we were so sure that she had beaten this horrible cancer. My mom is incredibly positive and prepared to fight again even though she is pain at this time.  I havent had the opportunity to go to appointments with my mom, however, my sister has gone to most of her appointments and if she cannot go, my mom's sisters go with her.  I am a full-time teacher and live two hours away from my mom.  The good news is that my summer break begins next Friday and I will be able to spend a lot of the summer with her.

Thank you for trying to comfort me.  I really need the support.

Carrie

Carrie, as Connie said, I am

Carrie, as Connie said, I am sure there are other women who will jump in but I am glad to hear two things:

1.  Your mother is going to fight.  Never, ever, ever, ever, ever, ever, give up. It is a tough disease but there are women on this board and who I have met who have battled (and it is a battle) and beat this disease.

2.  Your ability to get there and be with your mom.  There is nothing like your family knowing what you like or how you do things.  Laugh with her, cry with her, it is all good.  I had my best friend go to the doctor appointments with me and she wrote notes and notes and notes.  My sister sent me questions and my friend wrote as I asked the oncologist those questions.  Push and fight for your mother.  Every patient needs to have an advocate for them when they can't do it themselves.

I can't imagine what my mother and sisters were thinking when I told them I had cancer, but I am pretty sure you can. 

Take a breath.  Find out what you can and come back to visit us with questions. 

Ro10

Carrie I am so sorry

I am so sorry you and your family are having to go through this.  I am curious how the onocologist determined your Mom was in remission.  Did she have a CAT scan after her chemo and radiation?   Is she senstive to the CA 125?   It is not a good marker for everyone.   Does your Mom have a gyn/onocologist?  UPSC is such an aggressive disease and a gyn/onocologist is the best doctor to go to because they have more experience with UPSC.  As others have suggested I would get a second opinion from another doctor.   I hope you get some answers soon.  Chemo is usually the way to get to the cancer in the lymph nodes.  Chemo and radiation are also used for the liver, but since your Mom is getting radiation for the tumor on her spine, I don't think that  radiation to the liver is an option for your Mom.  But she may be able to get chemo with her radiation to the spine. 

I am a UPSC stage 3-C survivor.  I have had 2 recurrences and am working on a third recurrence.  Luckily for me my recurrences have always been in the lymph nodes.  I can still get the Taxol/Cisplatin.  I had 9 doses of Carboplatin and had a severe reaction, so was switched to Cisplatin.  That will be my drug of choice when I go back on chemo again.  You and your Mom will remain in my prayers.  Come back with any questions you may have.  I know it must be very overwhelming for all of you.  In peace and caring.

vbpeterson13

Ro10 said:

Carrie I am so sorry

I am so sorry you and your family are having to go through this.  I am curious how the onocologist determined your Mom was in remission.  Did she have a CAT scan after her chemo and radiation?   Is she senstive to the CA 125?   It is not a good marker for everyone.   Does your Mom have a gyn/onocologist?  UPSC is such an aggressive disease and a gyn/onocologist is the best doctor to go to because they have more experience with UPSC.  As others have suggested I would get a second opinion from another doctor.   I hope you get some answers soon.  Chemo is usually the way to get to the cancer in the lymph nodes.  Chemo and radiation are also used for the liver, but since your Mom is getting radiation for the tumor on her spine, I don't think that  radiation to the liver is an option for your Mom.  But she may be able to get chemo with her radiation to the spine. 

I am a UPSC stage 3-C survivor.  I have had 2 recurrences and am working on a third recurrence.  Luckily for me my recurrences have always been in the lymph nodes.  I can still get the Taxol/Cisplatin.  I had 9 doses of Carboplatin and had a severe reaction, so was switched to Cisplatin.  That will be my drug of choice when I go back on chemo again.  You and your Mom will remain in my prayers.  Come back with any questions you may have.  I know it must be very overwhelming for all of you.  In peace and caring.

Thank you Ro10

I am going to ask my mom to join the discussion board today so that she can give more details on what is going on.  I know that at the completion of chemo (dec 2013) she had a clear cat scan.  After radiation (April 2014) is when she was told she was in remission.  Her CA 125 numbers looked good (but I don't know the exact number she was given).  At that same appt, the oncologist ordered a cat scan but there was no follow through from her onocologists office.  She picked up the drink for the scan and was waiting on a call for her appt but nothing.  in those three weeks of waiting for the cat scan appt she went to her family dr to get her neck checked out and here we are today.  And yes, my mom does have a gyne/oncologist.

One of my concerns is that she should have received the "sandwich" technique when receiving her treatments.  Her oncologist dismissed that chemo-radiation-chemo was an old way of treating UPSC.  Reading on the blogs tells me different...that it is still the technique used by most oncologists today.  Hind sight is 20/20 and I guess we can't do anything about that now but it just makes me angry that the oncologist brushed it off and said it was old news.

We are willing to go anywhere to find a supportive, proactive oncologist that is willing to listen and be open to exploring all options.  We live in Pittsburgh area and Johns Hopkins in only a few hours away.

Thank you!

Carrie

Ro10

vbpeterson13 said:

Thank you Ro10

I am going to ask my mom to join the discussion board today so that she can give more details on what is going on.  I know that at the completion of chemo (dec 2013) she had a clear cat scan.  After radiation (April 2014) is when she was told she was in remission.  Her CA 125 numbers looked good (but I don't know the exact number she was given).  At that same appt, the oncologist ordered a cat scan but there was no follow through from her onocologists office.  She picked up the drink for the scan and was waiting on a call for her appt but nothing.  in those three weeks of waiting for the cat scan appt she went to her family dr to get her neck checked out and here we are today.  And yes, my mom does have a gyne/oncologist.

One of my concerns is that she should have received the "sandwich" technique when receiving her treatments.  Her oncologist dismissed that chemo-radiation-chemo was an old way of treating UPSC.  Reading on the blogs tells me different...that it is still the technique used by most oncologists today.  Hind sight is 20/20 and I guess we can't do anything about that now but it just makes me angry that the oncologist brushed it off and said it was old news.

We are willing to go anywhere to find a supportive, proactive oncologist that is willing to listen and be open to exploring all options.  We live in Pittsburgh area and Johns Hopkins in only a few hours away.

Thank you!

Carrie

Carrie

I did have the sandwich treatment in 2009.  At my last appointment I asked my gyn/ Ono if I was diagnosed today, would he still recommend the sandwich treatment?  He said yes he would.  Someone else who went to the same cancer center (Moffitt) recently  but a different doctor had all her chemo and then radiation.  Her doctor felt that if you stop chemo after 3 treatments and do radiation, the cancer has time to spread.  My doctor said there are different theories on how to treat UPSC, but he still recommends the sandwich treatment.  Most people did get their chemo first and then radiation.  

I have never been in remission.  My CA 125 goes to normal with the chemo, but then as soon as I go off chemo, the marker rises.  

Sometimes you have to make a pest of yourself if you don't get the follow through you want.  Keep calling and ask for what you want.  If you have had a test done and don't get the results from the doctor or nurse in a timely matter, you can always go to the medical records department of wherever the test was done and get a copy of the results.  I hope your Mom is getting copies of everything that has been done.  This will be especially important if she is going for another opinion.  It's not easy to remember everything, so it is good to have it in writing.  I usually pick up my test results before my appointment with the doctor so I can be prepared and have my questions ready.   Writing down your questions is important so you don't forget to ask them.  

Good luck and I hope the radiation helps the pain your Mom is having.  In peace and caring.

vbpeterson13

Ro10 said:

Carrie

I did have the sandwich treatment in 2009.  At my last appointment I asked my gyn/ Ono if I was diagnosed today, would he still recommend the sandwich treatment?  He said yes he would.  Someone else who went to the same cancer center (Moffitt) recently  but a different doctor had all her chemo and then radiation.  Her doctor felt that if you stop chemo after 3 treatments and do radiation, the cancer has time to spread.  My doctor said there are different theories on how to treat UPSC, but he still recommends the sandwich treatment.  Most people did get their chemo first and then radiation.  

I have never been in remission.  My CA 125 goes to normal with the chemo, but then as soon as I go off chemo, the marker rises.  

Sometimes you have to make a pest of yourself if you don't get the follow through you want.  Keep calling and ask for what you want.  If you have had a test done and don't get the results from the doctor or nurse in a timely matter, you can always go to the medical records department of wherever the test was done and get a copy of the results.  I hope your Mom is getting copies of everything that has been done.  This will be especially important if she is going for another opinion.  It's not easy to remember everything, so it is good to have it in writing.  I usually pick up my test results before my appointment with the doctor so I can be prepared and have my questions ready.   Writing down your questions is important so you don't forget to ask them.  

Good luck and I hope the radiation helps the pain your Mom is having.  In peace and caring.

Carries Mom

Hi! This is Carries Mom. Thank you all for your support & prayers.. Last saw my chemo oncology Dr in Jan and had a cat scan before that visit/ it didn't show anything new from the one I had before my operation.. Then started my radiation in Feb/ 5 days a week for 5 weeks and then two seed implants at the hospitat the end of March/ with the last one Apr 4th..

Had an app. with my chemo oncologist Apr 22 (had app. for months/ with blood work before) Got into the room and his assistant came in to tell me she would talk to me that day as the Dr. was very busy and if I wanted to see him I could, but I would have to wait.. Let her go over my blood work / my white count was ok but my red count was low so I was anemic..  Still wanted to see the Dr. so I told her I would wait..Dr finally came in and I asked him some questions and also wanted to know if I was in remission,which he said I was..he also was going to request a cat scan and they would call when it was approved and scheduled/ picked up my cat screen drink before I left..It has been sitting in a a bag on my dining room chair since then...

Went to my family Dr with neck pains and he requested an x ray that day..his office called later that day to inform me that I had a fracture in my neck and not to push,pull or lift anything and that he was calling my insurance to approve a cat scan of my neck..Had cat scan the next day and Dr called to let me know that my cancer had spriead to my neck.. He hated to give me the news over the phone but wanted to get the ball rolling asap on my neck/called a neurology surgeon and got an app. for my the next morning..went to surgeon and he said I needed toget radiology on my neck..he couldn't operate at this time..got surgical collar..Went to radiology Dr. the next day and he ordered a pet scan with approval from my insurance.(this was Thursday) Finally got pet scan approval the next Tues and had the Pet scan on Wed. Results on Fri.were that the cancer had spread to my liver and a lymph node in my pelcic area as well as my neck..

Am starting radiation on my neck this Mon..

Thanks again for all your help,

Mary

 

 

 

Ro10

vbpeterson13 said:

Carries Mom

Hi! This is Carries Mom. Thank you all for your support & prayers.. Last saw my chemo oncology Dr in Jan and had a cat scan before that visit/ it didn't show anything new from the one I had before my operation.. Then started my radiation in Feb/ 5 days a week for 5 weeks and then two seed implants at the hospitat the end of March/ with the last one Apr 4th..

Had an app. with my chemo oncologist Apr 22 (had app. for months/ with blood work before) Got into the room and his assistant came in to tell me she would talk to me that day as the Dr. was very busy and if I wanted to see him I could, but I would have to wait.. Let her go over my blood work / my white count was ok but my red count was low so I was anemic..  Still wanted to see the Dr. so I told her I would wait..Dr finally came in and I asked him some questions and also wanted to know if I was in remission,which he said I was..he also was going to request a cat scan and they would call when it was approved and scheduled/ picked up my cat screen drink before I left..It has been sitting in a a bag on my dining room chair since then...

Went to my family Dr with neck pains and he requested an x ray that day..his office called later that day to inform me that I had a fracture in my neck and not to push,pull or lift anything and that he was calling my insurance to approve a cat scan of my neck..Had cat scan the next day and Dr called to let me know that my cancer had spriead to my neck.. He hated to give me the news over the phone but wanted to get the ball rolling asap on my neck/called a neurology surgeon and got an app. for my the next morning..went to surgeon and he said I needed toget radiology on my neck..he couldn't operate at this time..got surgical collar..Went to radiology Dr. the next day and he ordered a pet scan with approval from my insurance.(this was Thursday) Finally got pet scan approval the next Tues and had the Pet scan on Wed. Results on Fri.were that the cancer had spread to my liver and a lymph node in my pelcic area as well as my neck..

Am starting radiation on my neck this Mon..

Thanks again for all your help,

Mary

 

 

 

Mary

I am so sorry to hear your story.  It is hard to believe that your cancer progressed so quickly, and especially to your neck, liver, and lymph nodes.  I hope the radiation helps with your pain.  I am at a loss for words to know what to say.  You and your family will remain in my prayers.  In peace and caring.

sunflash

Ro10 said:

Mary

I am so sorry to hear your story.  It is hard to believe that your cancer progressed so quickly, and especially to your neck, liver, and lymph nodes.  I hope the radiation helps with your pain.  I am at a loss for words to know what to say.  You and your family will remain in my prayers.  In peace and caring.

So sorry to hear about your

So sorry to hear about your struggles! Sending gentle hugs and prayers for a successful radiation experience and clear treatment plan for you from your doctor.

 

Abbycat2

vbpeterson13 said:

Carries Mom

Hi! This is Carries Mom. Thank you all for your support & prayers.. Last saw my chemo oncology Dr in Jan and had a cat scan before that visit/ it didn't show anything new from the one I had before my operation.. Then started my radiation in Feb/ 5 days a week for 5 weeks and then two seed implants at the hospitat the end of March/ with the last one Apr 4th..

Had an app. with my chemo oncologist Apr 22 (had app. for months/ with blood work before) Got into the room and his assistant came in to tell me she would talk to me that day as the Dr. was very busy and if I wanted to see him I could, but I would have to wait.. Let her go over my blood work / my white count was ok but my red count was low so I was anemic..  Still wanted to see the Dr. so I told her I would wait..Dr finally came in and I asked him some questions and also wanted to know if I was in remission,which he said I was..he also was going to request a cat scan and they would call when it was approved and scheduled/ picked up my cat screen drink before I left..It has been sitting in a a bag on my dining room chair since then...

Went to my family Dr with neck pains and he requested an x ray that day..his office called later that day to inform me that I had a fracture in my neck and not to push,pull or lift anything and that he was calling my insurance to approve a cat scan of my neck..Had cat scan the next day and Dr called to let me know that my cancer had spriead to my neck.. He hated to give me the news over the phone but wanted to get the ball rolling asap on my neck/called a neurology surgeon and got an app. for my the next morning..went to surgeon and he said I needed toget radiology on my neck..he couldn't operate at this time..got surgical collar..Went to radiology Dr. the next day and he ordered a pet scan with approval from my insurance.(this was Thursday) Finally got pet scan approval the next Tues and had the Pet scan on Wed. Results on Fri.were that the cancer had spread to my liver and a lymph node in my pelcic area as well as my neck..

Am starting radiation on my neck this Mon..

Thanks again for all your help,

Mary

 

 

 

Your present situation

Mary, I am so sorry to hear about your situation.  You will find that quite a few women here also have UPSC or another aggressive cancer with recurrences.  They are survivors and I think you will be too, with appropriate treatment.  Taking a loved one with you to appointments, getting a second or even third opinion, getting copies of your records, and writing down the questions that you want your gyn/onc to answer are all good approaches in dealing with cancer.  I was diagnosed with UPSC stage 3-A and my doctor told me recently that I am currently  "cancer free".  I am cautiously keeping my fingers crossed, but I am also aware of how serious my situation is.  I will be thinking about you and praying for a great response to your treatment. 

Best wishes to both you and your family

Cathy