Uterine cancer metastasized to lung - looking for others to talk to with similar condition

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  • Mosie
    Mosie Member Posts: 16
    #102
    debrajo said:

    Hey Mosie! I am considered
    Hey Mosie! I am considered "in remission" at the moment. I took my last dose of taxol/carboplatin May 8, 2010 and the CA125 is good. I don't like that last visit it was 17, but dr. was comfortable enough to give me 6 month visits now. I am craving sugar and starch, but those were pre cancer cravings also. They tell me the steroids help to put weight on and o keep it on after treatments. I have been eating better, but not able to stop the Caffeine-Free Diet Cokes though I have cut down. I had to have open heart surgery 8 weeks before hysterectomy to replace aortic heart valve that had a birth defect in it. I was walking three miles a day BEFORE surgery...now I am lucky to walk two blocks. That maybe due to the heart, the cancer, the chemo,or the radiation...I just don't know. I do have an in-door stationary bike that I ride when I can. Since Mama has moved in I feel less and less like doing the bike. She tries so hard to help me that she MAKES more work for me. I use to be a big reader( also crochet, sewing, quilting, needlework, and I was a family genealogist for years), not I don't do anything(including cleaning house)except take care of the family( I had six children and so far, nine grandchildren). I am what my daughter calls a dinosaur, I have always been a stay at home Mother. I was a 1a grade C so not quite as bad as some. Do keep in touch...I could use all the input I can get from the braver of you ladies! Best, debrajo

    Your brave too
    Hey Deb ,its good to hear your in remission.You have been through alot.I was a dinosaur too.You had some fun hobbys,but i understand not getting back into them,i lack desire to do my hobbys too.My doctor dosnt do the CA125 he says it dosnt show anything for uterine cancer,but alot of the women have it done. Im waiting for test results, hope to hear tomorrow. Mosie
  • Mosie
    Mosie Member Posts: 16
    #103
    debrajo said:

    Hey Mosie! I am considered
    Hey Mosie! I am considered "in remission" at the moment. I took my last dose of taxol/carboplatin May 8, 2010 and the CA125 is good. I don't like that last visit it was 17, but dr. was comfortable enough to give me 6 month visits now. I am craving sugar and starch, but those were pre cancer cravings also. They tell me the steroids help to put weight on and o keep it on after treatments. I have been eating better, but not able to stop the Caffeine-Free Diet Cokes though I have cut down. I had to have open heart surgery 8 weeks before hysterectomy to replace aortic heart valve that had a birth defect in it. I was walking three miles a day BEFORE surgery...now I am lucky to walk two blocks. That maybe due to the heart, the cancer, the chemo,or the radiation...I just don't know. I do have an in-door stationary bike that I ride when I can. Since Mama has moved in I feel less and less like doing the bike. She tries so hard to help me that she MAKES more work for me. I use to be a big reader( also crochet, sewing, quilting, needlework, and I was a family genealogist for years), not I don't do anything(including cleaning house)except take care of the family( I had six children and so far, nine grandchildren). I am what my daughter calls a dinosaur, I have always been a stay at home Mother. I was a 1a grade C so not quite as bad as some. Do keep in touch...I could use all the input I can get from the braver of you ladies! Best, debrajo

    Your brave too
    Hey Deb ,its good to hear your in remission.You have been through alot.I was a dinosaur too.You had some fun hobbys,but i understand not getting back into them,i lack desire to do my hobbys too.My doctor dosnt do the CA125 he says it dosnt show anything for uterine cancer,but alot of the women have it done. Im waiting for test results, hope to hear tomorrow. Mosie
  • debrajo
    debrajo Member Posts: 1,095 Member
    #104
    Mosie said:

    Your brave too
    Hey Deb ,its good to hear your in remission.You have been through alot.I was a dinosaur too.You had some fun hobbys,but i understand not getting back into them,i lack desire to do my hobbys too.My doctor dosnt do the CA125 he says it dosnt show anything for uterine cancer,but alot of the women have it done. Im waiting for test results, hope to hear tomorrow. Mosie

    Hey Mosie, I have never
    Hey Mosie, I have never heard of a dr. NOT using the ca125 at least as a base-line in the beginning. Mine was only 42 before surgery so I guess it was just getting started good. I've had one EVERYTIME I step into the doors at M.D. Anderson! I will be waiting to hear from you when you get your test back. I will be praying for good results!Some times we cuss the numbers for making us stress, but how sweet it is when the are good! Best, debrajo
  • Mosie
    Mosie Member Posts: 16
    #105
    debrajo said:

    Hey Mosie, I have never
    Hey Mosie, I have never heard of a dr. NOT using the ca125 at least as a base-line in the beginning. Mine was only 42 before surgery so I guess it was just getting started good. I've had one EVERYTIME I step into the doors at M.D. Anderson! I will be waiting to hear from you when you get your test back. I will be praying for good results!Some times we cuss the numbers for making us stress, but how sweet it is when the are good! Best, debrajo

    test results
    Hey debrajo, i had a lung scan done the nodule they found was not cancer, they allready removed met.cancer a few months back from my lung.Sometimes i really wonder about my doctors,i think they feel i wont make it so why put effort into my case. Mosie
  • Mosie
    Mosie Member Posts: 16
    #106
    debrajo said:

    Hey Mosie, I have never
    Hey Mosie, I have never heard of a dr. NOT using the ca125 at least as a base-line in the beginning. Mine was only 42 before surgery so I guess it was just getting started good. I've had one EVERYTIME I step into the doors at M.D. Anderson! I will be waiting to hear from you when you get your test back. I will be praying for good results!Some times we cuss the numbers for making us stress, but how sweet it is when the are good! Best, debrajo

    Do you have this????
    I wondered if anyone has a problem with a discharge,i know this is personall,but my doctors havnt much of a clue what it is.They said its one of three things, 1.infection 2.a side effect of internall radiation 3.cancer. The doctor said i dont have an infection and i had this before radiation i believe,it was one of my first symptions.So that leaves cancer, meaning the chemo didnt work? If anyone can help me with this ,please answer back. Thanks Mosie
  • debrajo
    debrajo Member Posts: 1,095 Member
    #107
    Mosie said:

    Do you have this????
    I wondered if anyone has a problem with a discharge,i know this is personall,but my doctors havnt much of a clue what it is.They said its one of three things, 1.infection 2.a side effect of internall radiation 3.cancer. The doctor said i dont have an infection and i had this before radiation i believe,it was one of my first symptions.So that leaves cancer, meaning the chemo didnt work? If anyone can help me with this ,please answer back. Thanks Mosie

    Hey now!!! Do not jump to
    Hey now!!! Do not jump to any conclusions! Dr.s are not God! They make mistakes all the time...I know! It sounds like an infection to me. You had a hysterectomy, right?Have you been sick lately? Sometimes the lymphatic system just goes hay-wire all by itself. Wait for the ca125 and if it's high, get them to do a scan. Get a second opinion if they keep scratching their heads! Keep us up on what the heck is going on! Best, debrajo
  • Mosie
    Mosie Member Posts: 16
    #108
    its very confusing
    It very confusing,I had the hysterectomy 2006 or 2007,no treatment for cancer afterward they got it all.Last summer i had bleeding and discharge,and they found a tumor and removed it,then i had internal radiation,after that they found uterine cancer in my lung,then took it out of my lung,this has been the last9,or 10 months.Three doctors gave me a year.They wont do the CA125 test.I see the dr. in 3 months after that another body scan.The doctor who did the radiation says this discharge is cancer too?? I had it for 9 months. I wish i knew what it was.I asked my dr. dont other women with uterine cancer get this? thats when he said its 1 of 3 things.I understood uterine cancer that reacurred isnt common, one dr. said there is no cure for it its going to kill me,becaus it took so long to come back,its a bad sign. thats it in a nutshell. Thank God for my sence of humor! it gets me through.
  • debrajo
    debrajo Member Posts: 1,095 Member
    #109
    Mosie said:

    its very confusing
    It very confusing,I had the hysterectomy 2006 or 2007,no treatment for cancer afterward they got it all.Last summer i had bleeding and discharge,and they found a tumor and removed it,then i had internal radiation,after that they found uterine cancer in my lung,then took it out of my lung,this has been the last9,or 10 months.Three doctors gave me a year.They wont do the CA125 test.I see the dr. in 3 months after that another body scan.The doctor who did the radiation says this discharge is cancer too?? I had it for 9 months. I wish i knew what it was.I asked my dr. dont other women with uterine cancer get this? thats when he said its 1 of 3 things.I understood uterine cancer that reacurred isnt common, one dr. said there is no cure for it its going to kill me,becaus it took so long to come back,its a bad sign. thats it in a nutshell. Thank God for my sence of humor! it gets me through.

    Good Lord girl, where in the
    Good Lord girl, where in the world do you get treatment? Sounds like you found all the Stooges at once! Get the heck to a good gyc/ong...now, and demand a ca125! let us know what is going on! best debrajo
  • Mosie
    Mosie Member Posts: 16
    #110
    Hey Deb, I live in Buffalo
    Hey Deb, I live in Buffalo New York,so everyone thinks Roswell is the best so thats where i went after the cancer spread.When this started last summer i did go to a different doctor, she took the tumor out and another dr. did the internal radiation.Im going to check into the CA125 with my regular Doctor.Ill wait about a month and see what we can do.You wouldnt believe what they have said and done to me. Thanks for being so nice. Mosie
  • Mosie
    Mosie Member Posts: 16
    #111
    Mosie said:

    Hey Deb, I live in Buffalo
    Hey Deb, I live in Buffalo New York,so everyone thinks Roswell is the best so thats where i went after the cancer spread.When this started last summer i did go to a different doctor, she took the tumor out and another dr. did the internal radiation.Im going to check into the CA125 with my regular Doctor.Ill wait about a month and see what we can do.You wouldnt believe what they have said and done to me. Thanks for being so nice. Mosie

    Does anyone else have any
    Does anyone else have any information about Uterine cancer and mets.lung cancer??What test their haveing done ? and this discharge? How long you have had it? any information. Thanks
  • Karenhopeful
    Karenhopeful Member Posts: 38
    #112
    Mosie said:

    Does anyone else have any
    Does anyone else have any information about Uterine cancer and mets.lung cancer??What test their haveing done ? and this discharge? How long you have had it? any information. Thanks

    My oncologist does not do the CA 125 test. They don't think it correlates to uterine cancers.
    My oncologist tells me I'll be around for a long time, my cancer will be treated like a chronic illness. My radiologist doesn't give a time, but says we are all going to die sometime and her treatment is just palliative, we can't predict how long I may hang around -so I should be doing things that make me happy.
    My oncologist says my cancer is metastatized stage one grade 3, like my original finding, only it has spread. My radiologist says it is stage 4 grade 3 because it has spread so much.
    I am feeling slightly more hopeful right now. My back pain is much less, part of the nerve pain in my lower arm is gone, the pain in my underarm is almost gone, the nerve pain under my upper arm is much less. I think the tumor that was pressing on that nerve bundle is regressing. I still only sweat on one side, and my eye still droops. But maybe those can come back to normal too. I find out tomorrow if I'll be getting more radiation. Tuesday will be the end of my initial 15. The bad thing is I have a similar size tumor in the same position in my other lung. It has grown in a different direction - hopefully it doesn't connect with the nerve bundle under that shoulder!! I am like you, tired, no energy, no motivation to do much of anything, can't walk far or stand long without getting out of breath.
    Another comparison of my two doctors: my oncologist says uterine cancer seldom goes to the brain, dont worry.I already have a shadow on my brain found by my radiologist who ordered the brain MRI.
    I will have a ct scan around July 16. I'm anxious to compare the two tumors. Both at the top of each lung to see if we should also do radiation on my other side.
  • snowbird_11
    snowbird_11 Member Posts: 160
    #113
    Karenhopeful said:

    My oncologist does not do the CA 125 test. They don't think it correlates to uterine cancers.
    My oncologist tells me I'll be around for a long time, my cancer will be treated like a chronic illness. My radiologist doesn't give a time, but says we are all going to die sometime and her treatment is just palliative, we can't predict how long I may hang around -so I should be doing things that make me happy.
    My oncologist says my cancer is metastatized stage one grade 3, like my original finding, only it has spread. My radiologist says it is stage 4 grade 3 because it has spread so much.
    I am feeling slightly more hopeful right now. My back pain is much less, part of the nerve pain in my lower arm is gone, the pain in my underarm is almost gone, the nerve pain under my upper arm is much less. I think the tumor that was pressing on that nerve bundle is regressing. I still only sweat on one side, and my eye still droops. But maybe those can come back to normal too. I find out tomorrow if I'll be getting more radiation. Tuesday will be the end of my initial 15. The bad thing is I have a similar size tumor in the same position in my other lung. It has grown in a different direction - hopefully it doesn't connect with the nerve bundle under that shoulder!! I am like you, tired, no energy, no motivation to do much of anything, can't walk far or stand long without getting out of breath.
    Another comparison of my two doctors: my oncologist says uterine cancer seldom goes to the brain, dont worry.I already have a shadow on my brain found by my radiologist who ordered the brain MRI.
    I will have a ct scan around July 16. I'm anxious to compare the two tumors. Both at the top of each lung to see if we should also do radiation on my other side.

    I am glad you are getting
    I am glad you are getting such positive results, Karen. Do you know what type of uterine cancer you have? Some uterine cancers do have a correlation to ca 125, as mine does; other do not. When i had to change gyn-oncs a few years ago, the NP handled processing of test orders per Dr's protocols. I noticed they were no longer monitoring my ca125 and i asked her why not. Her response was the same - not relevant to uterine cancer. I then set her straight and I am regular monitored and it is quite reflective of the status of my disease progression, treatment response. The brain met issue with uterine cancer is that it rarely mets to brain unless one gets lung mets which can then metastasize to brain.
    Are you doing both chemo and radiation together?
    Best of luck for continued good response to treatments.
    Annie
  • Mosie
    Mosie Member Posts: 16
    #114
    Karenhopeful said:

    My oncologist does not do the CA 125 test. They don't think it correlates to uterine cancers.
    My oncologist tells me I'll be around for a long time, my cancer will be treated like a chronic illness. My radiologist doesn't give a time, but says we are all going to die sometime and her treatment is just palliative, we can't predict how long I may hang around -so I should be doing things that make me happy.
    My oncologist says my cancer is metastatized stage one grade 3, like my original finding, only it has spread. My radiologist says it is stage 4 grade 3 because it has spread so much.
    I am feeling slightly more hopeful right now. My back pain is much less, part of the nerve pain in my lower arm is gone, the pain in my underarm is almost gone, the nerve pain under my upper arm is much less. I think the tumor that was pressing on that nerve bundle is regressing. I still only sweat on one side, and my eye still droops. But maybe those can come back to normal too. I find out tomorrow if I'll be getting more radiation. Tuesday will be the end of my initial 15. The bad thing is I have a similar size tumor in the same position in my other lung. It has grown in a different direction - hopefully it doesn't connect with the nerve bundle under that shoulder!! I am like you, tired, no energy, no motivation to do much of anything, can't walk far or stand long without getting out of breath.
    Another comparison of my two doctors: my oncologist says uterine cancer seldom goes to the brain, dont worry.I already have a shadow on my brain found by my radiologist who ordered the brain MRI.
    I will have a ct scan around July 16. I'm anxious to compare the two tumors. Both at the top of each lung to see if we should also do radiation on my other side.

    Karen, i was wondering if
    Karen, i was wondering if they call what you have in your lung nodules? I had a small part of my lung removed, they didnt have to do that to you? I hope you improve and feel better,I have heard of so many miracles with cancer its amazing!!! Mosie
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #115
    Mosie said:

    Karen, i was wondering if
    Karen, i was wondering if they call what you have in your lung nodules? I had a small part of my lung removed, they didnt have to do that to you? I hope you improve and feel better,I have heard of so many miracles with cancer its amazing!!! Mosie

    Mosie and Annie
    Your stories of doctors is pretty sobering. It's crazy that you, Annie, had to educate your cancer treatment team!! Shows that there are some dull tacks out there. And with rare cancers we can't afford anything but the most educated and open-minded practitioners.

    Mosie, with UPSC (which Annie and I have) the CA125 is often a reliable marker. If you have this then it would make sense to do the CA125. If you don't feel valued and comfortable with your team, please get some second (or third) opinions.

    All the best, Mary Ann
  • Mosie
    Mosie Member Posts: 16
    #116
    daisy366 said:

    Mosie and Annie
    Your stories of doctors is pretty sobering. It's crazy that you, Annie, had to educate your cancer treatment team!! Shows that there are some dull tacks out there. And with rare cancers we can't afford anything but the most educated and open-minded practitioners.

    Mosie, with UPSC (which Annie and I have) the CA125 is often a reliable marker. If you have this then it would make sense to do the CA125. If you don't feel valued and comfortable with your team, please get some second (or third) opinions.

    All the best, Mary Ann

    Hi Mary Ann,thanks for
    Hi Mary Ann,thanks for writing.I had three doctors at Roswell all tell me the same thing.The doctor before that wasnt much help either.He did internal radiation which was very painfull,they said hold the nurses hands and scream if you need to.I later read you can be given something to help the pain.When i came out the nurse in the hall way laughed and said i lied to you it does hurt!They didnt think chemo would help,one Dr.said if it was him hed just enjoy the time he had left.I asked them to be honest with me,and they were.Later he denied saying that, but i always had someone with me,they heard it too.A few places are booked up ,no appointments that people recomended.Ill go back once more in three months and maybe by then,hear of another Dr, Thank you , Mosie
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #117
    Mosie said:

    Hi Mary Ann,thanks for
    Hi Mary Ann,thanks for writing.I had three doctors at Roswell all tell me the same thing.The doctor before that wasnt much help either.He did internal radiation which was very painfull,they said hold the nurses hands and scream if you need to.I later read you can be given something to help the pain.When i came out the nurse in the hall way laughed and said i lied to you it does hurt!They didnt think chemo would help,one Dr.said if it was him hed just enjoy the time he had left.I asked them to be honest with me,and they were.Later he denied saying that, but i always had someone with me,they heard it too.A few places are booked up ,no appointments that people recomended.Ill go back once more in three months and maybe by then,hear of another Dr, Thank you , Mosie

    gut feeling
    Mosie,

    I'm from upstate NY and I always had good impression of Roswell. However, after my beloved brother in law was chemo-ed to death (my thoughts)there, my impression changed. Your experiences have confirmed my thoughts. There must be other places to get treatment - it sounds like a systemic problem.

    Have you checked online for independent gynecologic oncologists?
  • sunflash
    sunflash Member Posts: 197 Member
    #118
    daisy366 said:

    gut feeling
    Mosie,

    I'm from upstate NY and I always had good impression of Roswell. However, after my beloved brother in law was chemo-ed to death (my thoughts)there, my impression changed. Your experiences have confirmed my thoughts. There must be other places to get treatment - it sounds like a systemic problem.

    Have you checked online for independent gynecologic oncologists?

    Mosie, it's inexcusable to
    Mosie, it's inexcusable to be treated like that by your doctor! To have a nurse tell you she lied to you!! Unbelievable.

    When I had internal radiation 5 yrs ago, I was admitted to the hospital and given an epidural. I felt absolutely no pain.

    My doctor told me, "don't try to be a hero. If you have pain tell me and we'll deal with it. Studies have shown that patients who don't experience pain heal faster and better!"

    I'm stunned that someone would do that to you.

    Hope you are able to find a more compassionate team.
  • Mosie
    Mosie Member Posts: 16
    #119
    Thanks for your help,
    I will have to see where i can go next, i have an apointment i was going to keep its for three months and they will do a scan to see if cancer is gone.Meanwhile ill check around and see whats available.The radiation i had was with the seeds is that what you had? and it left me with discomfort internally. Mosie
  • Karenhopeful
    Karenhopeful Member Posts: 38
    #120
    Mosie said:

    Thanks for your help,
    I will have to see where i can go next, i have an apointment i was going to keep its for three months and they will do a scan to see if cancer is gone.Meanwhile ill check around and see whats available.The radiation i had was with the seeds is that what you had? and it left me with discomfort internally. Mosie

    Up date July 18, 2012
    Gosh, a month since my last post. I had 19 radiations of my right lung. New CT scan had better results than the last: tumor in abdomen is gone, no sign of any activity in lymph nodes anywhere, no new tumors, right lung decreased by half (where I had 19 radiations), left lung slightly decreased and called stable. These are big tumors - not nodules. They started at 9cm x 6 cm approximately. I will have the scheduled 6th chemo tomorrow and will continue with one a month for number 7 and number 8 as long as it continues to help. I am feeling quite good, no more back pain, nerve pain in arm almost entirely gone and what is left I don't really notice. I still get out of breath really fast, but it is a little better. I need to take a rest (long naps) after even slight physical activities. The other side effects are that I only sweat on my left side, my right eye droops.
    Radiologist said no treatment for left lung unless it should also start to bother me. She also said the good news is that my tumors are sensitive to radiation.
    The radiologist showed me her scans of where the tumor was pressing against my esophagus(I think, one of those pipes in my throat) and caving it in, also how it was nearly into the openings of my spine which could cause paralysis. This was never mentioned in the ct reports I received or by my oncologist. So glad the tumor shrunk!! I will have another MRI on Friday to check on the shadow on my brain. Since my small stomach tumor disappeared, I'm hoping the shadow on the brain is the same or gone. It was only about 3mm by 2 mm.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #121
    Karenhopeful said:

    Up date July 18, 2012
    Gosh, a month since my last post. I had 19 radiations of my right lung. New CT scan had better results than the last: tumor in abdomen is gone, no sign of any activity in lymph nodes anywhere, no new tumors, right lung decreased by half (where I had 19 radiations), left lung slightly decreased and called stable. These are big tumors - not nodules. They started at 9cm x 6 cm approximately. I will have the scheduled 6th chemo tomorrow and will continue with one a month for number 7 and number 8 as long as it continues to help. I am feeling quite good, no more back pain, nerve pain in arm almost entirely gone and what is left I don't really notice. I still get out of breath really fast, but it is a little better. I need to take a rest (long naps) after even slight physical activities. The other side effects are that I only sweat on my left side, my right eye droops.
    Radiologist said no treatment for left lung unless it should also start to bother me. She also said the good news is that my tumors are sensitive to radiation.
    The radiologist showed me her scans of where the tumor was pressing against my esophagus(I think, one of those pipes in my throat) and caving it in, also how it was nearly into the openings of my spine which could cause paralysis. This was never mentioned in the ct reports I received or by my oncologist. So glad the tumor shrunk!! I will have another MRI on Friday to check on the shadow on my brain. Since my small stomach tumor disappeared, I'm hoping the shadow on the brain is the same or gone. It was only about 3mm by 2 mm.

    Karen thanks for the update
    Glad your rumors have shrunk. Glad you are responding to the chemo and radiation. Wishing you good news on your MRI. Prayers continue to come your way. In peace and caring.

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