UPSC 1A - Various treatments/odds?

LizGrrr
LizGrrr Member Posts: 127 Member
in Uterine/Endometrial Cancer #1
I was diagnosed back in October 2011 after an unplanned laparoscopic hysterectomy. After staging surgery I was pronounced 1A and my gyn onc at the time said I needed no further treatment, but given the morcellation of the tumor during the hysterectomy he'd understand if I wanted to do 3 rounds of chemo.

His attitude and recommendation were so wishy-washy that I sought out other opinions - from these boards, from a researcher at NIH, online searches - which led me to question the wisdom of the recommendation. I switched to the senior gyn onc in the practice, and when the 3 rounds of carbo/taxol were complete he recommended radiation and 3 additional rounds of chemo. He also said if I skipped radiation he'd still want me to do the additional chemo.

I met with a radiation oncologist who is recommending external treatment - 25 treatments plus 3 external vaginal boosts. This would zap the abdominopelvic area and kill any cancer cells that may exist but not show up on a CT scan.

Both the 2nd gyn onc and the radiation onc gave me similar prognoses: given the tumor morcellation, if I did nothing more than the 3 chemo rounds I've already had, my chances of recurrence are 65%. If I proceed with the external radiation, the chances of recurrence drop to 50%. If I skip the radiation but do the 3 additional rounds of chemo, the chances drop to 30%. If I do both the radiation and the additional chemo my chance of recurrence falls to 15%.

For all I know these numbers are pulled out of thin air. But as someone said in another discussion thread "we are our own advocates" and I'm glad I'd done enough digging around to question the first recommendation.

When you were given your treatment reco, were you given odds of recurrence broken down by treatment?

Liz in Dallas, starting radiation on Monday

Comments

  • fanniemay
    fanniemay Member Posts: 53
    #2
    UPSC 1A
    Thanks for posting the treatments your dr. recommends. I am now questioning if 4 is enough? I am also 1A with tumor confined inside uterus. I think I am going to ask my surgeon for the sandwich 3 chemos/3 brachtherapy/followed by 3 more chemos. I had my 3rd chemo today and have been tolerating them well.
  • I Will Survive
    I Will Survive Member Posts: 27
    #3
    fanniemay said:

    UPSC 1A
    Thanks for posting the treatments your dr. recommends. I am now questioning if 4 is enough? I am also 1A with tumor confined inside uterus. I think I am going to ask my surgeon for the sandwich 3 chemos/3 brachtherapy/followed by 3 more chemos. I had my 3rd chemo today and have been tolerating them well.

    something I never asked/thought of
    If one woman is getting carboplatin/taxol for Stage 1 UPSC and someone else is getting the same combo for Stage 3 UPSC, is the chemo combination strength the same for both of the women? Or does a later stage get a stronger dose?

    Thanks

    Hannah
  • Rewriter
    Rewriter Member Posts: 493 Member
    #4
    I Will Survive said:

    something I never asked/thought of
    If one woman is getting carboplatin/taxol for Stage 1 UPSC and someone else is getting the same combo for Stage 3 UPSC, is the chemo combination strength the same for both of the women? Or does a later stage get a stronger dose?

    Thanks

    Hannah

    Chemo "strength"
    I am not at all sure about this, but I think that the chemo strength would differ. When I began to develop peripheral neuropathy (which, unfortunately, I still have three years post treatment), my oncologist lowered the chemo dose slightly. I would imagine that dosage would also be determined by stage and grade.


    Jill
  • Pat51
    Pat51 Member Posts: 130
    #5
    Liz,
    The numbers seem to reinforce the therory of more treatment. I am not sure how the dosage is determined. I thought that it was by your weight. My doctor wanted me to maintain my same weight from the beginning until I was finished with chemo. Carbo was the same but the taxetere was lowered by half for the last treatment because of the neurapathy I experienced. Unfortunately the neurapathy is still with me after chemo, just not as bad. I saw two radiologists, and external radiation was not recommended for me. I did have 3 brachy therapy treatments. At my original oncology consultation I was told that I had about a 10-20% chance of recurrence if I did treatment. Without treatment the odds of recurrence were much higher. The odds were never broken down as far as they were for you. You are correct, in that, you are you own advocate. Therefore, you have to do what you feel personally gives you the best chance at survival. Good luck with your treatment. Keep us posted about how you are doing.

    Pat
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #6
    Hi Liz:
    I know you said you
    Hi Liz:

    I know you said you were diagnosed with Stage 1A, but you never indicated what grade and what type (ednometrial adenocarcinoma, sarcoma, MMMT, papillary, etc.) It really depends on the type and grade of cancer with regard to recurrence projections. I was told that the usual protocol for any stage is the Carbo/Taxol as the first line of defense - I was to have 6 treatments. I was allergic to taxol so they changed me to gemzar. After my staging surgery, they did not find any additional cancer, and suggested chemo as a preventative (which I had) and then later on 3 brachytherapies. I don't know why they changed their minds after a year about the radiation, but they did. But that was before when I wasn't my own advocate.

    Kathy

    P.S. Ooops - I see know that you were diagnosed with UPSC - sorry
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #7
    Kaleena said:

    Hi Liz:
    I know you said you
    Hi Liz:

    I know you said you were diagnosed with Stage 1A, but you never indicated what grade and what type (ednometrial adenocarcinoma, sarcoma, MMMT, papillary, etc.) It really depends on the type and grade of cancer with regard to recurrence projections. I was told that the usual protocol for any stage is the Carbo/Taxol as the first line of defense - I was to have 6 treatments. I was allergic to taxol so they changed me to gemzar. After my staging surgery, they did not find any additional cancer, and suggested chemo as a preventative (which I had) and then later on 3 brachytherapies. I don't know why they changed their minds after a year about the radiation, but they did. But that was before when I wasn't my own advocate.

    Kathy

    P.S. Ooops - I see know that you were diagnosed with UPSC - sorry

    neuropathy
    I am sure there is a thread for this topic but I am too tired to look for it.

    Jill, it is very discouraging to pass that one-year, post-chemo mark and still have neuropathy. My doctor told me that if I still have it now I always will. And you have had it for three years! Awful.

    I have tried everything known to man to try to get rid of this, but the cold hard fact is that once that myelin sheath on the nerves is destroyed, there is little to no chance of it regenerating after a year. It's not like you can do exercise or take a pill or herb to MAKE the myelin.

    My latest attempt is anodyne therapy. If anyone else is contemplating this, do not bother.

    I keep telling myself that at least I do not have the pain with the neuropathy. But the constant tingling/numbness/coldness in extremities/hypersensitivity/balance problems are bad enough.

    Right now, I am having a BIG hot flash (due to Arimidex) yet my feet and hands are freezing!

    JoAnn
  • jazzy1
    jazzy1 Member Posts: 1,379
    #8
    JoAnnDK said:

    neuropathy
    I am sure there is a thread for this topic but I am too tired to look for it.

    Jill, it is very discouraging to pass that one-year, post-chemo mark and still have neuropathy. My doctor told me that if I still have it now I always will. And you have had it for three years! Awful.

    I have tried everything known to man to try to get rid of this, but the cold hard fact is that once that myelin sheath on the nerves is destroyed, there is little to no chance of it regenerating after a year. It's not like you can do exercise or take a pill or herb to MAKE the myelin.

    My latest attempt is anodyne therapy. If anyone else is contemplating this, do not bother.

    I keep telling myself that at least I do not have the pain with the neuropathy. But the constant tingling/numbness/coldness in extremities/hypersensitivity/balance problems are bad enough.

    Right now, I am having a BIG hot flash (due to Arimidex) yet my feet and hands are freezing!

    JoAnn

    Peripheral Neuropathy
    A friend of mine works as physical therapist and swears by exercise and therapy. I fortunately had only minor neuropathy which subsided once treatments ended.

    Below is excerpt from her literature card. Tried exercise yet? Or hire physical therapist who can direct you thru the proper movements.

    JoAnn, I do feel for you not only the neuropathy but now hot flashes. I didn't make it thru treatments without being hit by something to remind me...I've got the sciatica pain going on...been 2 years. Makes one want to start the adult drinking right awawy.

    Hang in there my friend....
    Jan

    1.
    What is Peripheral Neuropathy?
    * Peripheral neuropathy is a condition that affects the nerves. It impacts the way the central nervous system (brain and spinal cord) connects and communicates with the muscles, skin and internal organs. Most people who have peripheral neuropathy are affected mainly in the hands and feet. The condition is often a symptom of other diseases, such as cancer, diabetes, HIV or AIDS, Guillain-Barre syndrome and many others. While some forms of peripheral neuropathy can be cured, most forms cannot.
    What Are Its Symptoms?
    * Symptoms of peripheral neuropathy depend on what nerves are affected and where they are located. For instance, if the nerves to the skin are affected, then the patient may experience numbness and tingling, oversensitivity to touch, a burning or freezing sensation in the toes and fingers, an inability to feel or a decreased sensitivity to heat or cold. If the nerves to internal organs are affected, then the patient may experience constipation, loss of bladder control or sexual dysfunction. Nerve damage to the muscles may cause muscle weakness, cramping, spasms or an inability to maintain balance.

    Treatment for peripheral neuropathy typically includes management of the condition causing the neuropathy and alleviation of discomfort or pain. Making proper exercise and physical therapy part of the treatment is beneficial for many neuropathy patients. Ideally, an exercise regimen to treat neuropathy involves the supervision of a physician or physical therapist to monitor how much and what type of exercise the patient performs. Some conditions are severe enough that unsupervised and strenuous exercise can do harm, since many people afflicted with this condition will have a loss of sensitivity, particularly to some forms of pain. Unregulated exercise may lead to injury without the person being aware of it.

    Effects of the Condition and Why Exercise Is Important
    * One of the possible effects of the condition is paralysis in the limbs. If the patient does not use his limbs regularly, the muscles will waste away. A person with peripheral neuropathy can often experience an increased risk of falls or other injuries due to a lack of muscle control and a decreased sensitivity to heat, cold and pain. Therefore, exercise is a critical component of many therapies, since it can build muscle strength while increasing circulation and coordination. Exercise may also reduce some forms of pain associated with the condition and improve the body's ability to control blood sugar levels.
  • fanniemay
    fanniemay Member Posts: 53
    #9
    jazzy1 said:

    Peripheral Neuropathy
    A friend of mine works as physical therapist and swears by exercise and therapy. I fortunately had only minor neuropathy which subsided once treatments ended.

    Below is excerpt from her literature card. Tried exercise yet? Or hire physical therapist who can direct you thru the proper movements.

    JoAnn, I do feel for you not only the neuropathy but now hot flashes. I didn't make it thru treatments without being hit by something to remind me...I've got the sciatica pain going on...been 2 years. Makes one want to start the adult drinking right awawy.

    Hang in there my friend....
    Jan

    1.
    What is Peripheral Neuropathy?
    * Peripheral neuropathy is a condition that affects the nerves. It impacts the way the central nervous system (brain and spinal cord) connects and communicates with the muscles, skin and internal organs. Most people who have peripheral neuropathy are affected mainly in the hands and feet. The condition is often a symptom of other diseases, such as cancer, diabetes, HIV or AIDS, Guillain-Barre syndrome and many others. While some forms of peripheral neuropathy can be cured, most forms cannot.
    What Are Its Symptoms?
    * Symptoms of peripheral neuropathy depend on what nerves are affected and where they are located. For instance, if the nerves to the skin are affected, then the patient may experience numbness and tingling, oversensitivity to touch, a burning or freezing sensation in the toes and fingers, an inability to feel or a decreased sensitivity to heat or cold. If the nerves to internal organs are affected, then the patient may experience constipation, loss of bladder control or sexual dysfunction. Nerve damage to the muscles may cause muscle weakness, cramping, spasms or an inability to maintain balance.

    Treatment for peripheral neuropathy typically includes management of the condition causing the neuropathy and alleviation of discomfort or pain. Making proper exercise and physical therapy part of the treatment is beneficial for many neuropathy patients. Ideally, an exercise regimen to treat neuropathy involves the supervision of a physician or physical therapist to monitor how much and what type of exercise the patient performs. Some conditions are severe enough that unsupervised and strenuous exercise can do harm, since many people afflicted with this condition will have a loss of sensitivity, particularly to some forms of pain. Unregulated exercise may lead to injury without the person being aware of it.

    Effects of the Condition and Why Exercise Is Important
    * One of the possible effects of the condition is paralysis in the limbs. If the patient does not use his limbs regularly, the muscles will waste away. A person with peripheral neuropathy can often experience an increased risk of falls or other injuries due to a lack of muscle control and a decreased sensitivity to heat, cold and pain. Therefore, exercise is a critical component of many therapies, since it can build muscle strength while increasing circulation and coordination. Exercise may also reduce some forms of pain associated with the condition and improve the body's ability to control blood sugar levels.

    I just read a research paper done in 2011, that the reaccurance rate of UPSC 1A is 15% with 6 chemos and 30% with 4 chemos. So now I am confused because my oncologist says 4 is enough;so should I just stick with the 4? I'll probably bring it up at my next appointment. Hugs to everyone :)
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #10
    jazzy1 said:

    Peripheral Neuropathy
    A friend of mine works as physical therapist and swears by exercise and therapy. I fortunately had only minor neuropathy which subsided once treatments ended.

    Below is excerpt from her literature card. Tried exercise yet? Or hire physical therapist who can direct you thru the proper movements.

    JoAnn, I do feel for you not only the neuropathy but now hot flashes. I didn't make it thru treatments without being hit by something to remind me...I've got the sciatica pain going on...been 2 years. Makes one want to start the adult drinking right awawy.

    Hang in there my friend....
    Jan

    1.
    What is Peripheral Neuropathy?
    * Peripheral neuropathy is a condition that affects the nerves. It impacts the way the central nervous system (brain and spinal cord) connects and communicates with the muscles, skin and internal organs. Most people who have peripheral neuropathy are affected mainly in the hands and feet. The condition is often a symptom of other diseases, such as cancer, diabetes, HIV or AIDS, Guillain-Barre syndrome and many others. While some forms of peripheral neuropathy can be cured, most forms cannot.
    What Are Its Symptoms?
    * Symptoms of peripheral neuropathy depend on what nerves are affected and where they are located. For instance, if the nerves to the skin are affected, then the patient may experience numbness and tingling, oversensitivity to touch, a burning or freezing sensation in the toes and fingers, an inability to feel or a decreased sensitivity to heat or cold. If the nerves to internal organs are affected, then the patient may experience constipation, loss of bladder control or sexual dysfunction. Nerve damage to the muscles may cause muscle weakness, cramping, spasms or an inability to maintain balance.

    Treatment for peripheral neuropathy typically includes management of the condition causing the neuropathy and alleviation of discomfort or pain. Making proper exercise and physical therapy part of the treatment is beneficial for many neuropathy patients. Ideally, an exercise regimen to treat neuropathy involves the supervision of a physician or physical therapist to monitor how much and what type of exercise the patient performs. Some conditions are severe enough that unsupervised and strenuous exercise can do harm, since many people afflicted with this condition will have a loss of sensitivity, particularly to some forms of pain. Unregulated exercise may lead to injury without the person being aware of it.

    Effects of the Condition and Why Exercise Is Important
    * One of the possible effects of the condition is paralysis in the limbs. If the patient does not use his limbs regularly, the muscles will waste away. A person with peripheral neuropathy can often experience an increased risk of falls or other injuries due to a lack of muscle control and a decreased sensitivity to heat, cold and pain. Therefore, exercise is a critical component of many therapies, since it can build muscle strength while increasing circulation and coordination. Exercise may also reduce some forms of pain associated with the condition and improve the body's ability to control blood sugar levels.

    yes yes yes
    Yes, Jan, I have tried everything.....I have done extensive PT, supervised exercise, exercises for balance, acupuncture, compounded gabapentin cream, gabapentin by mouth, electric stim, heat, cold, massage, epsom salts, heating pads, an electric massager, and every cream and lotion known to man. One day I spent $150 at our local health food store - on linaments and creams.

    NOTHING worked. Now I know why.....because there is no way to force the body to make the myelin sheath that covers the nerve. I am sure your friend knows this. Why some people have myelin spontaneously regenerate is a puzzle that scientists have been trying to solve for a long time.

    joann
  • fanniemay
    fanniemay Member Posts: 53
    #11
    6 carbo/taxol is the norm now
    Hi, I persuaded my dr. to give me a total of 6 chemos and 3 radiation. I wonder if you read the same study I did. It showed that with 6 chemos and 3 radiation the reaccurance rate if 15%(which is good) I hope others read this with 1A and have 6 chemos and not any less. My dr. recommended 4, but I told him about the study I read...and he uped it to 6. He also said, "with 6 you can be absolutely sure that we have done everthing we can from the cancer coming back" That gave me much comfort as If I would have gone with the 4, and it did reaccure I would totally blame myself. God BLess
  • fanniemay
    fanniemay Member Posts: 53
    #12
    6 carbo/taxol is the norm now
    Hi, I persuaded my dr. to give me a total of 6 chemos and 3 radiation. I wonder if you read the same study I did. It showed that with 6 chemos and 3 radiation the reaccurance rate if 15%(which is good) I hope others read this with 1A and have 6 chemos and not any less. My dr. recommended 4, but I told him about the study I read...and he uped it to 6. He also said, "with 6 you can be absolutely sure that we have done everthing we can from the cancer coming back" That gave me much comfort as If I would have gone with the 4, and it did reaccure I would totally blame myself. God BLess
  • imackie48
    imackie48 Member Posts: 96
    #13
    Pat51 said:

    Liz,
    The numbers seem to reinforce the therory of more treatment. I am not sure how the dosage is determined. I thought that it was by your weight. My doctor wanted me to maintain my same weight from the beginning until I was finished with chemo. Carbo was the same but the taxetere was lowered by half for the last treatment because of the neurapathy I experienced. Unfortunately the neurapathy is still with me after chemo, just not as bad. I saw two radiologists, and external radiation was not recommended for me. I did have 3 brachy therapy treatments. At my original oncology consultation I was told that I had about a 10-20% chance of recurrence if I did treatment. Without treatment the odds of recurrence were much higher. The odds were never broken down as far as they were for you. You are correct, in that, you are you own advocate. Therefore, you have to do what you feel personally gives you the best chance at survival. Good luck with your treatment. Keep us posted about how you are doing.

    Pat

    Side effect
    Pat,
    I am getting ready to get my brachytherapy treatment next week, how did you manage them, we're there many side effects. I'm going for my fitting Friday. I have a one hr drive home from the hospital, will I have trouble sitting after the procedure?
  • Pat51
    Pat51 Member Posts: 130
    #14
    imackie48 said:

    Side effect
    Pat,
    I am getting ready to get my brachytherapy treatment next week, how did you manage them, we're there many side effects. I'm going for my fitting Friday. I have a one hr drive home from the hospital, will I have trouble sitting after the procedure?

    No Side Effects
    Hi imackie48,

    I had my radiation done at a facility about 2 hours from where I live. The treatments were a breeze for me. I had no side effects from the procedure. The procedure was painless. I had no problem with the ride home. Good luck with your treatments. I hope that the procedure is as easy for you as it was for me.

    Pat
  • debrajo
    debrajo Member Posts: 1,095 Member
    #15
    Numbers
    Hi Liz
    Just saw your post. I was diagnosed in July 09 with 1a UPSC. I am being treaded at M.D. Anderson in Houston. From what the told me, with the surgery and nothing else you have a 70% chance of it comming back, with surgery and radiation it's50/50. With chemo, surgery, and internal radiation you have about a 20-30% chance of it comming back. They did not grade mine for some reason, but said it didnt really matter, because with UPSC they treat any grade as stage four just because of it's agression. I had the radical hysterctomy, five rounds of internal radiation, and six rounds of taxol/carboplaint. In May of this year, God willing. I will be two years of NED with not even a hint of reacurrence! Hope this helps! Debrajo
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #16
    debrajo said:

    Numbers
    Hi Liz
    Just saw your post. I was diagnosed in July 09 with 1a UPSC. I am being treaded at M.D. Anderson in Houston. From what the told me, with the surgery and nothing else you have a 70% chance of it comming back, with surgery and radiation it's50/50. With chemo, surgery, and internal radiation you have about a 20-30% chance of it comming back. They did not grade mine for some reason, but said it didnt really matter, because with UPSC they treat any grade as stage four just because of it's agression. I had the radical hysterctomy, five rounds of internal radiation, and six rounds of taxol/carboplaint. In May of this year, God willing. I will be two years of NED with not even a hint of reacurrence! Hope this helps! Debrajo

    God is smiling on you
    God is smiling on you debrajo. Happy NED forever.

    Mary Ann
  • imackie48
    imackie48 Member Posts: 96
    #17
    Pat51 said:

    No Side Effects
    Hi imackie48,

    I had my radiation done at a facility about 2 hours from where I live. The treatments were a breeze for me. I had no side effects from the procedure. The procedure was painless. I had no problem with the ride home. Good luck with your treatments. I hope that the procedure is as easy for you as it was for me.

    Pat

    Thanks Pat
    Pat, thanks for the info, did you have them spaced a week apart, my therapist said I could decide on weekly or biweekly.

    I am the onw who is Neutropenic, so I am having a white count done prior to each treatment, just in case I need an Neupogen shot.

    Irene
  • Pat51
    Pat51 Member Posts: 130
    #18
    imackie48 said:

    Thanks Pat
    Pat, thanks for the info, did you have them spaced a week apart, my therapist said I could decide on weekly or biweekly.

    I am the onw who is Neutropenic, so I am having a white count done prior to each treatment, just in case I need an Neupogen shot.

    Irene

    Hi Irene
    Hi Irene,

    I started the brachytherapy about 2 weeks after my last chemo. I had three treatments done once a week. The radiation oncologist said that I could have two of them in one week if I wanted but since the facility was so far from my home I chose to drive there just once per week.

    I was not neutropenic, that I know of. I had a Neulasta shot after each chemo treatment to help keep my blood counts up. When I had radiation, my blood counts were down because I had just finished chemo. The counts came back up to normal, naturally over time.

    I hope that you have easy treatments with no side effects, like I did. Good luck.

    Pat

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