Just diagnosed with UPSC

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Comments

  • Sandy3185
    Sandy3185 Member Posts: 228
    Chemo wash

    I've been reading online about a relatively new research where they wash the entire abdominal cavity with chemo when surgery is completed. It has been used for several different kinds of cancer inside the abdomen. I haven't seen it used in uterine cancer, but it sounds really promising! I am going to ask my doctor about doing it when I have my surgery next week. It's probably to close but it can't hurt to ask.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Sandy3185 said:

    Chemo wash

    I've been reading online about a relatively new research where they wash the entire abdominal cavity with chemo when surgery is completed. It has been used for several different kinds of cancer inside the abdomen. I haven't seen it used in uterine cancer, but it sounds really promising! I am going to ask my doctor about doing it when I have my surgery next week. It's probably to close but it can't hurt to ask.

    Sandy

    I have not heard of this.  I had  cancer cells in my abdominal wash at the time of surgery.  But they were not suspecting my cancer to spread.  They thought I would have the hysterectomy and I would be done.  I had no symptoms before surgery.

    since they have to mix the chemo when needed, I can't imagine they would have it in a timely manner during surgery.  I guess it might be possible if they already suspected you had cancer that spread.  I will be interested to hear what your doctor says.  

    I know some people on the ovarian board talk about getting chemo through IP.  They have a port inserted in their abdomen and get chemo intra peritoneal.  But I have not seen anyone with uterine cancer getting chemo that way.

    good luck with your surgery.

  • Sandy3185
    Sandy3185 Member Posts: 228
    Had my surgery last week

    I had my hystorectomy etc last Thursday. I am hoping to go home today. This is the first major surgery I Have ever undergone. The staff and facility( Moffitt cancer center) are wonderful. I have an appointment next Friday to go over the test result and treatment recommendations. I was really surprised by how wiped out I am feeling! The doctors told me that they found cancer in my uterus and in my cervex. I hope that thIs is the whole extent.

    Thanks again everyone for your support!

    Sandy

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    Sandy3185 said:

    Had my surgery last week

    I had my hystorectomy etc last Thursday. I am hoping to go home today. This is the first major surgery I Have ever undergone. The staff and facility( Moffitt cancer center) are wonderful. I have an appointment next Friday to go over the test result and treatment recommendations. I was really surprised by how wiped out I am feeling! The doctors told me that they found cancer in my uterus and in my cervex. I hope that thIs is the whole extent.

    Thanks again everyone for your support!

    Sandy

    Thank you

    For the update.  Hopefully you are home now.  Take good care of yourself for at least the next 6 weeks.  You don't want to overdo and create problems with adhesions or hernias.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Sandy3185 said:

    Had my surgery last week

    I had my hystorectomy etc last Thursday. I am hoping to go home today. This is the first major surgery I Have ever undergone. The staff and facility( Moffitt cancer center) are wonderful. I have an appointment next Friday to go over the test result and treatment recommendations. I was really surprised by how wiped out I am feeling! The doctors told me that they found cancer in my uterus and in my cervex. I hope that thIs is the whole extent.

    Thanks again everyone for your support!

    Sandy

    Good to hear from you Sandy!

    So glad to hear from you and you are finally on your way. 

  • Sandy3185 said:

    Had my surgery last week

    I had my hystorectomy etc last Thursday. I am hoping to go home today. This is the first major surgery I Have ever undergone. The staff and facility( Moffitt cancer center) are wonderful. I have an appointment next Friday to go over the test result and treatment recommendations. I was really surprised by how wiped out I am feeling! The doctors told me that they found cancer in my uterus and in my cervex. I hope that thIs is the whole extent.

    Thanks again everyone for your support!

    Sandy

    Underway

    Sandy- Glad to hear the surgery is over. One step out of the way. I was diagnosed with UPSC July 26, 2011. I had surgery July 29th, then flew back to Alaska and had 6 rounds of carbo/taxol followed by three internal brachy radiation. NED since then. Take one day at a time, laugh whenever possible and plod along. The brave ladies of this site are inspiration and support, so rant, rave, cry and celebrate with your sisters here. I'll be reading along to see how you are doing.

    Susette

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Sandy3185 said:

    Had my surgery last week

    I had my hystorectomy etc last Thursday. I am hoping to go home today. This is the first major surgery I Have ever undergone. The staff and facility( Moffitt cancer center) are wonderful. I have an appointment next Friday to go over the test result and treatment recommendations. I was really surprised by how wiped out I am feeling! The doctors told me that they found cancer in my uterus and in my cervex. I hope that thIs is the whole extent.

    Thanks again everyone for your support!

    Sandy

    Sandy, good to hear from you

    Glad you made it through your surgery.  Remember it is major surgery, so you need to take it easy.  Hope you get to go home tomorrow.  Glad you had a good experience at Moffitt.  Hope you get good results next week, too.  Take it one day at a time.  In peace and caring.

  • Sandy3185
    Sandy3185 Member Posts: 228
    Ro10 said:

    Sandy, good to hear from you

    Glad you made it through your surgery.  Remember it is major surgery, so you need to take it easy.  Hope you get to go home tomorrow.  Glad you had a good experience at Moffitt.  Hope you get good results next week, too.  Take it one day at a time.  In peace and caring.

    Feeling so much better!

    Well, it's been 4 weeks and I am feeling good. I had a big problem with nausea. Started eating normally on Christmas( my best present!) and have a lot more energy, although I still tire easily. I am also battling a insidious rash that started before I had surgery. Just went to my primary care again and he started as different treatment. I just hope it's gone before I start chemo on the 17th. The doctor says I am stage 2 and that the cancer was contained within the uterus and cervix. He biopsies over 20 lymph nodes and they were all negative! Also the abdominal washings etc. At this point I am feeling very positive.    Thanks. Sandy

     

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    Sandy3185 said:

    Feeling so much better!

    Well, it's been 4 weeks and I am feeling good. I had a big problem with nausea. Started eating normally on Christmas( my best present!) and have a lot more energy, although I still tire easily. I am also battling a insidious rash that started before I had surgery. Just went to my primary care again and he started as different treatment. I just hope it's gone before I start chemo on the 17th. The doctor says I am stage 2 and that the cancer was contained within the uterus and cervix. He biopsies over 20 lymph nodes and they were all negative! Also the abdominal washings etc. At this point I am feeling very positive.    Thanks. Sandy

     

    Good news, Sandy

    Way to start the new year.  Here's hoping your chemo goes as well asmine did.  I'd as soon not had the experience but it was much easier than I expected.  It's been nearly 1 1/2 years  and, like childbirth, the memories are fading.

  • Ann55
    Ann55 Member Posts: 48
    Sandy3185 said:

    Feeling so much better!

    Well, it's been 4 weeks and I am feeling good. I had a big problem with nausea. Started eating normally on Christmas( my best present!) and have a lot more energy, although I still tire easily. I am also battling a insidious rash that started before I had surgery. Just went to my primary care again and he started as different treatment. I just hope it's gone before I start chemo on the 17th. The doctor says I am stage 2 and that the cancer was contained within the uterus and cervix. He biopsies over 20 lymph nodes and they were all negative! Also the abdominal washings etc. At this point I am feeling very positive.    Thanks. Sandy

     

    Wonderful news!  Happy Happy

    Wonderful news!  Happy Happy New Year.

     

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Sandy3185 said:

    Feeling so much better!

    Well, it's been 4 weeks and I am feeling good. I had a big problem with nausea. Started eating normally on Christmas( my best present!) and have a lot more energy, although I still tire easily. I am also battling a insidious rash that started before I had surgery. Just went to my primary care again and he started as different treatment. I just hope it's gone before I start chemo on the 17th. The doctor says I am stage 2 and that the cancer was contained within the uterus and cervix. He biopsies over 20 lymph nodes and they were all negative! Also the abdominal washings etc. At this point I am feeling very positive.    Thanks. Sandy

     

    Sandy glad you are feeling better

    Sorry to hear about the nausea.  Glad it is better, too.  Your nutrition is important for you.

    glad all your lymph nodes and abdominal washings were negative.  Good luck with your first chemo.  Continue to keep the positive attitude.   In peace and caring.

  • Sandy3185
    Sandy3185 Member Posts: 228
    Ro10 said:

    Sandy glad you are feeling better

    Sorry to hear about the nausea.  Glad it is better, too.  Your nutrition is important for you.

    glad all your lymph nodes and abdominal washings were negative.  Good luck with your first chemo.  Continue to keep the positive attitude.   In peace and caring.

    chemo and radiation

    2014-02-11 Its been a while since I last posted! I started chemo and had my second round last Tuesday. I have had a lot of side effects both times and they started sooner, have been stronger and are lasting longer. Now i am really afraidof the next round! Thse qnumbness inmy finwger tips is theleast of it, although very annoying. But the pain in my knees, ankles, feet and toes increased,sometimes it really hurts to walk. Problems with constipation, loss of appetite and problems sleeping due to discomfort. Hopefully it will wear off soon.

    I talked to the radiologist/onc about my treatment after the chemo and I am very undecided. I kknow UPSC is very agressive, but I am really worried about the side effects. Dr. Whatley, mygyn/onc suggested a second opinion but, really, which radiologist would not recommend radiation? Have any ofyou opted out of the radiation?

    Thanks everyone, Sandy

     

     

     

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Sandy3185 said:

    chemo and radiation

    2014-02-11 Its been a while since I last posted! I started chemo and had my second round last Tuesday. I have had a lot of side effects both times and they started sooner, have been stronger and are lasting longer. Now i am really afraidof the next round! Thse qnumbness inmy finwger tips is theleast of it, although very annoying. But the pain in my knees, ankles, feet and toes increased,sometimes it really hurts to walk. Problems with constipation, loss of appetite and problems sleeping due to discomfort. Hopefully it will wear off soon.

    I talked to the radiologist/onc about my treatment after the chemo and I am very undecided. I kknow UPSC is very agressive, but I am really worried about the side effects. Dr. Whatley, mygyn/onc suggested a second opinion but, really, which radiologist would not recommend radiation? Have any ofyou opted out of the radiation?

    Thanks everyone, Sandy

     

     

     

    Sandy

    Sorry you are having so many side effects and they are lasting longer.  I had radiation in between my chemo.  3 chemo, 28 radiation external, 28 hour internal, and the 3 more chemo.  I had the IMRT radiation and had minimal side effects.  I have not had any long term side effects that I am aware of.

    some people did not get radiation, they only got chemo.   Maybe you don't want your second opinion from a radiologist, but a different gyn/ Ono and see if they recommend radiation.

    i hope your next treatment goes better for you and the side effects are of shorter duration for you.  Are you starting your medicines for constipation a day or two before you have your chemo and then several days after chemo.  Are you drinking lots of fluids?  Have you discussed the joint pain with your doctor or chemo nurse.  They may have suggestions for what you could take for the discomfort so you can sleep better.  In peace and caring.

  • Hybridspirits
    Hybridspirits Member Posts: 209
    Ro10 said:

    Sandy

    Sorry you are having so many side effects and they are lasting longer.  I had radiation in between my chemo.  3 chemo, 28 radiation external, 28 hour internal, and the 3 more chemo.  I had the IMRT radiation and had minimal side effects.  I have not had any long term side effects that I am aware of.

    some people did not get radiation, they only got chemo.   Maybe you don't want your second opinion from a radiologist, but a different gyn/ Ono and see if they recommend radiation.

    i hope your next treatment goes better for you and the side effects are of shorter duration for you.  Are you starting your medicines for constipation a day or two before you have your chemo and then several days after chemo.  Are you drinking lots of fluids?  Have you discussed the joint pain with your doctor or chemo nurse.  They may have suggestions for what you could take for the discomfort so you can sleep better.  In peace and caring.

    side effects

    Have you tried L-Glutimine?  I did that a day before chemo, day of and a few days after and it made the tingling in the fingers go away. I still got it for a week but it went away. Constipation,  i would agree get on it right away,  could try Miralax.  Pain is that from a shot?  I had the "nasty plasta (what I called it don't remember the name) was given suggestion of claridan d day before, day of and a few days after. Worked like a charm

    second opinions,  I had oncologist second opinions and a radiologist seocnd opinion.  The radiologist didn't agree with mine, gave the reasons and then mine agreed witht eh second opinion

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Sandy3185 said:

    chemo and radiation

    2014-02-11 Its been a while since I last posted! I started chemo and had my second round last Tuesday. I have had a lot of side effects both times and they started sooner, have been stronger and are lasting longer. Now i am really afraidof the next round! Thse qnumbness inmy finwger tips is theleast of it, although very annoying. But the pain in my knees, ankles, feet and toes increased,sometimes it really hurts to walk. Problems with constipation, loss of appetite and problems sleeping due to discomfort. Hopefully it will wear off soon.

    I talked to the radiologist/onc about my treatment after the chemo and I am very undecided. I kknow UPSC is very agressive, but I am really worried about the side effects. Dr. Whatley, mygyn/onc suggested a second opinion but, really, which radiologist would not recommend radiation? Have any ofyou opted out of the radiation?

    Thanks everyone, Sandy

     

     

     

    So good to hear from you!

    Sandy, I wondered how you were doing.  I think Ro gave you some good advice and let me chime in with a few things too.  I had the chemo/radiation/chemo sandwich special and understand your pain and fear for my 1A UPSC.

    I had pain in my hips and knees too.  I thought if THIS is what kind of pain people with arthritis have I know why they seek releif!  The first round pain was the worst, and I was fortunate that it was never as bad as that.  When I had finished all my treatment I asked my sister to find something to help with the joint pain.  I know it sounds crazy, but eggshell membrane capsules helped tremendously.  I still have stiffness (not sure if that is age or what!) but it is better than it was.  Check with your doc.

    My trick to beat constipation was to take Miralax the night before chemo, a couple times the day of chemo, and for a few days after chemo.  You can check with your onc nurse to see what she thinks but my nurse said OK!!  I figured after major abdominal surgery the last thing I wanted to worry about was constipation!  I also have been taking probiotics for years and my colon thanks me.  In fact, I was given a slides from a presentation that showed how 1/2 of 63 cervical cancer patients were given probiotics and the other half wasn't.  (I am going to talk more about this under the radiation part below)

    As for that eating?  I never imagined I wouldn't want to eat and then came chemo. I had to force myself to eat and as much protein as possible to help heal and keep the numbers up. If there is a dietician who specializes in working with cancer patients where you go maybe she can be of help.

    Now, let's talk about radiation.  It absolutely terrified me.  When I walked out of meeting with him I cried like a baby.  The possible long-term side effects are frightening.  I talked to the patient advocate at the cancer center as I was scared and angry and that lovely woman listened.  She also said that you never have to do anything you want. It is always YOUR CHOICE to have or not have treatment. 

    The short-term side effects are as terrifying as the long-term.  The slide show (mentioned above) illustrated how the women who took probiotics had a significant decrease in side effects.  A large number of the women not given probiotics were hospitalized with dehydration.  I have got to find that document!!

    In the end I had the IMRT radiation because I want to do everything I can to kill this cancer forever.  I still hate the thought, but it was wanted I needed to do for me.

    You can do this, Sandy.  It is hard and you will amaze yourself.  Promise.

  • Dee5678
    Dee5678 Member Posts: 37

    So good to hear from you!

    Sandy, I wondered how you were doing.  I think Ro gave you some good advice and let me chime in with a few things too.  I had the chemo/radiation/chemo sandwich special and understand your pain and fear for my 1A UPSC.

    I had pain in my hips and knees too.  I thought if THIS is what kind of pain people with arthritis have I know why they seek releif!  The first round pain was the worst, and I was fortunate that it was never as bad as that.  When I had finished all my treatment I asked my sister to find something to help with the joint pain.  I know it sounds crazy, but eggshell membrane capsules helped tremendously.  I still have stiffness (not sure if that is age or what!) but it is better than it was.  Check with your doc.

    My trick to beat constipation was to take Miralax the night before chemo, a couple times the day of chemo, and for a few days after chemo.  You can check with your onc nurse to see what she thinks but my nurse said OK!!  I figured after major abdominal surgery the last thing I wanted to worry about was constipation!  I also have been taking probiotics for years and my colon thanks me.  In fact, I was given a slides from a presentation that showed how 1/2 of 63 cervical cancer patients were given probiotics and the other half wasn't.  (I am going to talk more about this under the radiation part below)

    As for that eating?  I never imagined I wouldn't want to eat and then came chemo. I had to force myself to eat and as much protein as possible to help heal and keep the numbers up. If there is a dietician who specializes in working with cancer patients where you go maybe she can be of help.

    Now, let's talk about radiation.  It absolutely terrified me.  When I walked out of meeting with him I cried like a baby.  The possible long-term side effects are frightening.  I talked to the patient advocate at the cancer center as I was scared and angry and that lovely woman listened.  She also said that you never have to do anything you want. It is always YOUR CHOICE to have or not have treatment. 

    The short-term side effects are as terrifying as the long-term.  The slide show (mentioned above) illustrated how the women who took probiotics had a significant decrease in side effects.  A large number of the women not given probiotics were hospitalized with dehydration.  I have got to find that document!!

    In the end I had the IMRT radiation because I want to do everything I can to kill this cancer forever.  I still hate the thought, but it was wanted I needed to do for me.

    You can do this, Sandy.  It is hard and you will amaze yourself.  Promise.

    Hi, I am too new in this

    Hi, I am too new in this journey to offer advice. Just wanted to say that it was good to read all your follow-up posts here. Thanks for doing that!  We are all rooting for you, Sandy. You are strong and you can do it. One day at a time!