Uterine Sarcoma

wwingo
wwingo Member Posts: 1
edited March 2014 in Uterine Cancer #1
I was told their are only 15 case studies of this cancer. I can't find much information about it on the web. I was diagnosed with this feb 2009 finished my chemo in august 09. I was treated with Gemzar and Texitier. I was wondering if their is anyone else with this type of cancer
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  • d.lee
    d.lee Member Posts: 31
    uteran sarcoma
    hi, i was diag. with metastasized uteran sarcoma stage 4 in dec 2009 i had surgery and had a tumor was taken out and ive been on chemo for almost a year im on doxil i go to chemo once a month. i dont if its the same exact cancer.
  • 1at009
    1at009 Member Posts: 1
    UPSC Uternine Papillary Sarcoma Carcinoma
    Hi I was "re diagnosed in January with it. They say only 3% of female cancers are this type. I think there are more than 15 people that have it though. I need to talk with people who have gone through therapy and survived and are doing well. I am on Carboplatin and Taxil every 3 weeks with the possibility of surgery in the future Is anyone out there who has licked this sucker? Anyone that is on top of the game?
  • catbird
    catbird Member Posts: 33
    1at009 said:

    UPSC Uternine Papillary Sarcoma Carcinoma
    Hi I was "re diagnosed in January with it. They say only 3% of female cancers are this type. I think there are more than 15 people that have it though. I need to talk with people who have gone through therapy and survived and are doing well. I am on Carboplatin and Taxil every 3 weeks with the possibility of surgery in the future Is anyone out there who has licked this sucker? Anyone that is on top of the game?

    ulms
    i have uterine leiomyosarcoma - is that what you have? sarcomas are very rare. there's like 50 different kinds & about 15,000 people a year that get some type of sarcoma.
  • cleo
    cleo Member Posts: 144
    catbird said:

    ulms
    i have uterine leiomyosarcoma - is that what you have? sarcomas are very rare. there's like 50 different kinds & about 15,000 people a year that get some type of sarcoma.

    Carcino sarcoma
    I have the above, which I assume is the same. A combination of two cancers. A surgeon told me that it is very rare and little research has been done.
  • faith316
    faith316 Member Posts: 25
    Uterine Sarcoma
    It is interesting that I have been watching this site for well over a year and this is the first time I have seen a post detailing my treatment for uterine sarcoma. My lab reports also indicate this cancer by a combination of other names but my obg/gyn has referred to it as uterine sarcoma on all lab/test orders. I was diagnosed November, 2008 after a D&C/hysterscopy. I orginally went to my ob/gyn due to bleeding four years after menopause. After a suspicious ultrasound, she recommended the D&C and I am so glad she did. I was then referred to an ob/gyn oncologist. He performed my hysterectomy and developed my treatment plan. (Gemzar first week, Gemzar-Taxotere second week with Neulasta shot, off three weeks and start again) I went to OSU James Cancer Center for a second opinion. The doctor I consulted with was new to OSU but came from Sloan Kettering in NY. He was in agreement with my local doctor so we started treatment mid December, 2008, January and February, 2009. Radiation ended in May 2009. (25 external and 3 internal) I took off until August, 2009 to spend the summer with my three grandchildren enjoying our traditional vacations together. Went back to treatment for August, Sept. and October, 2009. I have been out of treatment since even though PET/CT scans have shown some area of concern in my liver and lungs. The spots are all too small to biopsy and follow up PET/CT scans show slow growth. After consulting with my doctor (whom I love)I have chosen to enjoy spending time with my family and wait to make any more decisions until my next PET/CT. I feel great!!! Energy levels are better than prior to my diagnosis, appetite good, walking on my treadmill daily, taking care of my family and thanking God for each day.
  • donna1960
    donna1960 Member Posts: 2
    catbird said:

    ulms
    i have uterine leiomyosarcoma - is that what you have? sarcomas are very rare. there's like 50 different kinds & about 15,000 people a year that get some type of sarcoma.

    leiomyosarcoma
    Jan 2009 had total hysterectomy turned out low grade leiomyosarcoma.Being seen at Uof MI have Cts of abdomin and chest x-rays every 6 months. I went for my mammogram in Jan 2010 to find a growth then learned it was there 11/08 guess what its a low grade leiomyosacroma same as before. They say rare to travel here. Talking about tomoxifen. I go in May for my CT we will do chest and ab. I'm a nervous wreck anyone have any advise?
  • catbird
    catbird Member Posts: 33
    faith316 said:

    Uterine Sarcoma
    It is interesting that I have been watching this site for well over a year and this is the first time I have seen a post detailing my treatment for uterine sarcoma. My lab reports also indicate this cancer by a combination of other names but my obg/gyn has referred to it as uterine sarcoma on all lab/test orders. I was diagnosed November, 2008 after a D&C/hysterscopy. I orginally went to my ob/gyn due to bleeding four years after menopause. After a suspicious ultrasound, she recommended the D&C and I am so glad she did. I was then referred to an ob/gyn oncologist. He performed my hysterectomy and developed my treatment plan. (Gemzar first week, Gemzar-Taxotere second week with Neulasta shot, off three weeks and start again) I went to OSU James Cancer Center for a second opinion. The doctor I consulted with was new to OSU but came from Sloan Kettering in NY. He was in agreement with my local doctor so we started treatment mid December, 2008, January and February, 2009. Radiation ended in May 2009. (25 external and 3 internal) I took off until August, 2009 to spend the summer with my three grandchildren enjoying our traditional vacations together. Went back to treatment for August, Sept. and October, 2009. I have been out of treatment since even though PET/CT scans have shown some area of concern in my liver and lungs. The spots are all too small to biopsy and follow up PET/CT scans show slow growth. After consulting with my doctor (whom I love)I have chosen to enjoy spending time with my family and wait to make any more decisions until my next PET/CT. I feel great!!! Energy levels are better than prior to my diagnosis, appetite good, walking on my treadmill daily, taking care of my family and thanking God for each day.

    lms - same treatment
    I had the same chemo treatment & shot except I was off only 2 wks. did it for 5 mos & finished it in jan 2010. get another cat scan in april, every 3 to 4 mos for several yrs is what I was told. I had no radiation. My lms was found by a fibroid tumor at my uterus & originally told it would not be cancer so imagine my surprise. Mt scan in dec showed changes to liver & lungs but report said stable. My dr told me it usually moves to the lungs & liver so it's a wait & see game. To the lady with the breast cancer being lms, I would have radical surgery if it was me but that is an individual decision. Sad we have such a rare disease with little research on treatment. There is a good lms site that may be helpful http://sa.sarcomaalliance.org
  • maggie_wilson
    maggie_wilson Member Posts: 596
    1at009 said:

    UPSC Uternine Papillary Sarcoma Carcinoma
    Hi I was "re diagnosed in January with it. They say only 3% of female cancers are this type. I think there are more than 15 people that have it though. I need to talk with people who have gone through therapy and survived and are doing well. I am on Carboplatin and Taxil every 3 weeks with the possibility of surgery in the future Is anyone out there who has licked this sucker? Anyone that is on top of the game?

    upsc uterine papillary serous carcinom
    hi,
    i've been diagnosed with the above, (i think it's the same as the one above) had radical hysterectomy surgery, staged 4, and the 18 weeks of chemo--once every 3 weeks of carboplatin and taxol ( think that's how it's spelled). last chemo was in november 09, so only 4 months, but so far so good. i am anxious, however, about my next ca 125, since i've had miscellaneous pains lately around upper abdomen. knowledgeable people have said it could be any number of things like adhesions, gas, etc., and it could be a reoccurence. one never knows. so, i, too, would be interested in hearing from others with this diagnosis that has been thriving for awhile. it gives us all hope.
    thanx,
    maggie
  • cleo
    cleo Member Posts: 144
    catbird said:

    lms - same treatment
    I had the same chemo treatment & shot except I was off only 2 wks. did it for 5 mos & finished it in jan 2010. get another cat scan in april, every 3 to 4 mos for several yrs is what I was told. I had no radiation. My lms was found by a fibroid tumor at my uterus & originally told it would not be cancer so imagine my surprise. Mt scan in dec showed changes to liver & lungs but report said stable. My dr told me it usually moves to the lungs & liver so it's a wait & see game. To the lady with the breast cancer being lms, I would have radical surgery if it was me but that is an individual decision. Sad we have such a rare disease with little research on treatment. There is a good lms site that may be helpful http://sa.sarcomaalliance.org

    Light ['tho' dim!] on the subject of sarcomas??!!
    This from a UK newspaper. Gives me clearer insight into how little is known about sarcomas and it seems as though the value of research is only just being understood. No wonder we can't find any info ladies!!!

    New treatments for the most common cancers could come from the cutting-edge research into the rarest tumours.
    At a conference in Milan this week, researchers and leading experts will discuss exciting advances on sarcomas, rare tumours in muscle, blood vessels, deep skin tissues, nerves and tissue round joints.
    They affect relatively few people but understanding them could have wide ramifications.
    "Because sarcomas have well-characterised molecular alterations, they are an ideal model for developing new therapies", said French cancer specialist Dr Jean-Yves Blay.
  • faith316
    faith316 Member Posts: 25
    catbird said:

    lms - same treatment
    I had the same chemo treatment & shot except I was off only 2 wks. did it for 5 mos & finished it in jan 2010. get another cat scan in april, every 3 to 4 mos for several yrs is what I was told. I had no radiation. My lms was found by a fibroid tumor at my uterus & originally told it would not be cancer so imagine my surprise. Mt scan in dec showed changes to liver & lungs but report said stable. My dr told me it usually moves to the lungs & liver so it's a wait & see game. To the lady with the breast cancer being lms, I would have radical surgery if it was me but that is an individual decision. Sad we have such a rare disease with little research on treatment. There is a good lms site that may be helpful http://sa.sarcomaalliance.org

    leiomyosarcoma (catbird)
    I have only logged in once on this site but have seen your name while just keeping an eye on others posting under various threads. Wondering how old you were when diagnosed and what your original staging was at surgery? Are you having PET/CT Scans or CT scans for monitoring? I wish we could isolate the few women who are participating on this site who have uterine leiomyosarcoma so we could get to know each other and relate our stories for reference information and share our good news for encouragement. Thanks for posting...it sure is comforting to know others may be able to understand our concerns, fears, faith and hopefulness.
  • catbird
    catbird Member Posts: 33
    faith316 said:

    leiomyosarcoma (catbird)
    I have only logged in once on this site but have seen your name while just keeping an eye on others posting under various threads. Wondering how old you were when diagnosed and what your original staging was at surgery? Are you having PET/CT Scans or CT scans for monitoring? I wish we could isolate the few women who are participating on this site who have uterine leiomyosarcoma so we could get to know each other and relate our stories for reference information and share our good news for encouragement. Thanks for posting...it sure is comforting to know others may be able to understand our concerns, fears, faith and hopefulness.

    faith 316 - ct scan not good
    I have been out of town & funny I checked this today as I am very busy with work. Had a ct scan 2 weeks ago, everything clear except a lump on my stomach area that you can see, etc, came thro the abdominal wall, gyn surgeon told me it was a hernia 6 weeks ago for several reasons & nothing to be alarmed about or to further investigate - now do not know what to think as he knows all about the LMS etc. So, had a biopsy today but don't know the full answer till next week. radiologist said it's a tumor & it was not there on the 12/22/09 ct scan per the onc dr. I am 56 yrs old now, dig 8/2009, stage 1b. I contacted MDA in houston today for either additional evaluation or for review of pathology & 3 ct scans. difficult trying to figure out what to do etc & who to trust since the dr's have such different answers. Onc dr said there were masses all over the abdominal wall & he wanted biopsy's of everything. (I had 2 surgeries the same day, scar tissue?) yet the radiologist only was concerned about the lump?? makes one wonder, upsetting to say the least as the onc dr was watching my lungs & liver which are reportedly clear of cancer. would be good to have just uterine lms "board" since it is so different but seems like there's just not enough of us.
  • faith316
    faith316 Member Posts: 25
    catbird said:

    faith 316 - ct scan not good
    I have been out of town & funny I checked this today as I am very busy with work. Had a ct scan 2 weeks ago, everything clear except a lump on my stomach area that you can see, etc, came thro the abdominal wall, gyn surgeon told me it was a hernia 6 weeks ago for several reasons & nothing to be alarmed about or to further investigate - now do not know what to think as he knows all about the LMS etc. So, had a biopsy today but don't know the full answer till next week. radiologist said it's a tumor & it was not there on the 12/22/09 ct scan per the onc dr. I am 56 yrs old now, dig 8/2009, stage 1b. I contacted MDA in houston today for either additional evaluation or for review of pathology & 3 ct scans. difficult trying to figure out what to do etc & who to trust since the dr's have such different answers. Onc dr said there were masses all over the abdominal wall & he wanted biopsy's of everything. (I had 2 surgeries the same day, scar tissue?) yet the radiologist only was concerned about the lump?? makes one wonder, upsetting to say the least as the onc dr was watching my lungs & liver which are reportedly clear of cancer. would be good to have just uterine lms "board" since it is so different but seems like there's just not enough of us.

    CT Scan
    I am glad you checked in today but am sorry your scan did not go well. I know it must be difficult to keep your thoughts clear when you are getting conflicting messages from multiple sources. Sometimes we just have to take a deep breath and take the time to review all the information and all the options layed out before us to make a good informed decision about what we want to do next. Another review and opinion from MD Anderson may be exactly what you need. Please keep me posted on how your next visit goes. I will be thinking of you as I go for my PET scan this week and back to my doctor next week. We are very close to the same age. I am 57, live near Toledo, OH, diag. High grade Stage 111 on original path reports. Since surgery we have new areas of concern-lungs and liver. Last treatment November, 2009. Not sure what may come next but have enjoyed the six month break with my twin granddaughters (16) and my grandson (12). Keep faith in your heart and keep me posted.
  • catbird
    catbird Member Posts: 33
    faith316 said:

    CT Scan
    I am glad you checked in today but am sorry your scan did not go well. I know it must be difficult to keep your thoughts clear when you are getting conflicting messages from multiple sources. Sometimes we just have to take a deep breath and take the time to review all the information and all the options layed out before us to make a good informed decision about what we want to do next. Another review and opinion from MD Anderson may be exactly what you need. Please keep me posted on how your next visit goes. I will be thinking of you as I go for my PET scan this week and back to my doctor next week. We are very close to the same age. I am 57, live near Toledo, OH, diag. High grade Stage 111 on original path reports. Since surgery we have new areas of concern-lungs and liver. Last treatment November, 2009. Not sure what may come next but have enjoyed the six month break with my twin granddaughters (16) and my grandson (12). Keep faith in your heart and keep me posted.

    faith316 - tumors are back
    dr says the pelvic area is filled with tumors & too many for surgery so back on chemo. talked to mda, they said it would be 6 wks to get in so I will go ahead & start chemo with my regular dr. My insurance, ppo humana, wants to cut off my current dr/clinic which doesn't make sense as 80% of the oncologists in this state are connected with this clinic, my boss says maybe we will change insurance. all of the major hospitals are with this oncology clinic so that is a primary reason for going to mda is to direct a new dr here, etc. I wonder if when the gyn surgeon did the surgery & cut up the tumor in me not knowing it was cancer caused these tumors & the chemo kept it gone till i went off it. Who knows but discouraging. oncologist said back on gem/tax but if no luck the next treatment is adriamycin & ifosfamide & last is temodar (chemo pill for brain cancer they are trying) - these are the 3 treatments mda is using for leiomyoma. What happened at your pet scan? please post & let me know. i live in dallas.
  • kkstef
    kkstef Member Posts: 688
    catbird said:

    faith316 - tumors are back
    dr says the pelvic area is filled with tumors & too many for surgery so back on chemo. talked to mda, they said it would be 6 wks to get in so I will go ahead & start chemo with my regular dr. My insurance, ppo humana, wants to cut off my current dr/clinic which doesn't make sense as 80% of the oncologists in this state are connected with this clinic, my boss says maybe we will change insurance. all of the major hospitals are with this oncology clinic so that is a primary reason for going to mda is to direct a new dr here, etc. I wonder if when the gyn surgeon did the surgery & cut up the tumor in me not knowing it was cancer caused these tumors & the chemo kept it gone till i went off it. Who knows but discouraging. oncologist said back on gem/tax but if no luck the next treatment is adriamycin & ifosfamide & last is temodar (chemo pill for brain cancer they are trying) - these are the 3 treatments mda is using for leiomyoma. What happened at your pet scan? please post & let me know. i live in dallas.

    So sorry to hear your news....
    Catbird....I am so sorry to hear that you are headed back to chemo and worst of all, you are having the added stress of uncertainty about your insurance! That is a lot to handle. Please know that I am thinking of you and sending you big (((HUGS)))!! Please keep us posted about how you are doing!

    Best to you!! Karen
  • faith316
    faith316 Member Posts: 25
    catbird said:

    faith316 - tumors are back
    dr says the pelvic area is filled with tumors & too many for surgery so back on chemo. talked to mda, they said it would be 6 wks to get in so I will go ahead & start chemo with my regular dr. My insurance, ppo humana, wants to cut off my current dr/clinic which doesn't make sense as 80% of the oncologists in this state are connected with this clinic, my boss says maybe we will change insurance. all of the major hospitals are with this oncology clinic so that is a primary reason for going to mda is to direct a new dr here, etc. I wonder if when the gyn surgeon did the surgery & cut up the tumor in me not knowing it was cancer caused these tumors & the chemo kept it gone till i went off it. Who knows but discouraging. oncologist said back on gem/tax but if no luck the next treatment is adriamycin & ifosfamide & last is temodar (chemo pill for brain cancer they are trying) - these are the 3 treatments mda is using for leiomyoma. What happened at your pet scan? please post & let me know. i live in dallas.

    Catbird - Thinking of you
    I am so sorry that you will be back in treatment. What a mixed bag of emotions we have to continuously deal with. We want to know the results, we don't want to hear the results. We dread the treatment, we are grateful for the opportunity for treatment. We hate that it is us, we are grateful it isn't someone else that we love. What a challenge it is to find the balance in dealing with all that.

    Unfortunately it is near impossible for us to begin to guess what goes on between insurance carriers and providers. I pray that you will not be anxious about anything associated with your insurance coverage. If I understood you correctly, going to MD Anderson may provide you with a path to another oncologist if your carrier should cancel their contract with your doctor/clinic. Even though it may be stressful to change doctors or treatment centers I am confident there are many caring and competent doctors for us to place our trust in. MDA would be a wonderful resource for that referral.

    Like you my doctor also had to dissect my tumor to remove it. Because cancer cells can travel through our body via our blood and lymph nodes there is really no way to know if cells escaped long before our surgeries, during our surgery or even after our surgery. The most we can do is take control of those things we do have control over. We can participate in decisions regarding each phase of our treatment, we can look to diet, exercise and nutritional options that help to make us stronger and we can be thankful for every little blessing along the way.

    My PET scan was Friday and my doctor appointment yesterday (Wednesday). The lesion on my liver is only slightly larger, the original nodules on my lungs have also only increased slightly and a few more are now showing on this scan. So here is our plan: We are sending another tissue sample to another lab and having it tested for drug reaction. I am to call in two weeks to hear the results of that test. The doctor mentioned two drugs and perhaps one pill form of chemo that we could consider if we need to. So far my disease is growing very, very slowly and I have no symptoms causing me any distress. My doctors wife is an Oncology RN, nutritionist, practices Chinese medicine, herbs and acupunture. I will be making an appointment with her next week to investigate a program to strengthen my body to help it fight the cancer. Even though the news could have been better I am feeling very blessed and confident that I am on the right path.

    Please keep in touch. I would love to continue communicating. This venue is okay with me but if you would prefer to email please let me know and I will send you my address.

    God's peace,
    Pam
  • kkstef
    kkstef Member Posts: 688
    faith316 said:

    Catbird - Thinking of you
    I am so sorry that you will be back in treatment. What a mixed bag of emotions we have to continuously deal with. We want to know the results, we don't want to hear the results. We dread the treatment, we are grateful for the opportunity for treatment. We hate that it is us, we are grateful it isn't someone else that we love. What a challenge it is to find the balance in dealing with all that.

    Unfortunately it is near impossible for us to begin to guess what goes on between insurance carriers and providers. I pray that you will not be anxious about anything associated with your insurance coverage. If I understood you correctly, going to MD Anderson may provide you with a path to another oncologist if your carrier should cancel their contract with your doctor/clinic. Even though it may be stressful to change doctors or treatment centers I am confident there are many caring and competent doctors for us to place our trust in. MDA would be a wonderful resource for that referral.

    Like you my doctor also had to dissect my tumor to remove it. Because cancer cells can travel through our body via our blood and lymph nodes there is really no way to know if cells escaped long before our surgeries, during our surgery or even after our surgery. The most we can do is take control of those things we do have control over. We can participate in decisions regarding each phase of our treatment, we can look to diet, exercise and nutritional options that help to make us stronger and we can be thankful for every little blessing along the way.

    My PET scan was Friday and my doctor appointment yesterday (Wednesday). The lesion on my liver is only slightly larger, the original nodules on my lungs have also only increased slightly and a few more are now showing on this scan. So here is our plan: We are sending another tissue sample to another lab and having it tested for drug reaction. I am to call in two weeks to hear the results of that test. The doctor mentioned two drugs and perhaps one pill form of chemo that we could consider if we need to. So far my disease is growing very, very slowly and I have no symptoms causing me any distress. My doctors wife is an Oncology RN, nutritionist, practices Chinese medicine, herbs and acupunture. I will be making an appointment with her next week to investigate a program to strengthen my body to help it fight the cancer. Even though the news could have been better I am feeling very blessed and confident that I am on the right path.

    Please keep in touch. I would love to continue communicating. This venue is okay with me but if you would prefer to email please let me know and I will send you my address.

    God's peace,
    Pam

    Did you know....
    Pam...did you know that you can email via this site? Just go to sign on page, on left side of page under discussion group, cursor down and click on CSN email. If you put in the recipients CSN name, enter it, write your message and send. If you have the person in your "friends" list...you can just click on it and it will come up.

    I didn't realize for a long time that was possible!

    enjoy.....Karen
  • faith316
    faith316 Member Posts: 25
    kkstef said:

    Did you know....
    Pam...did you know that you can email via this site? Just go to sign on page, on left side of page under discussion group, cursor down and click on CSN email. If you put in the recipients CSN name, enter it, write your message and send. If you have the person in your "friends" list...you can just click on it and it will come up.

    I didn't realize for a long time that was possible!

    enjoy.....Karen

    Thanks Karen
    Karen - Thank you so much. I didn't realize we could email through this site. I will have to check out the benefits of the friends list too. I see your posts often and appreciate your positive attitude and encouraging words for everyone.

    Thanks again,

    Pam
  • kkstef
    kkstef Member Posts: 688
    faith316 said:

    Thanks Karen
    Karen - Thank you so much. I didn't realize we could email through this site. I will have to check out the benefits of the friends list too. I see your posts often and appreciate your positive attitude and encouraging words for everyone.

    Thanks again,

    Pam

    You are Welcome!
    Hope the email works for you!! Karen
  • daisy366
    daisy366 Member Posts: 1,458 Member
    kkstef said:

    You are Welcome!
    Hope the email works for you!! Karen

    thanks for email tip Karen

    thanks for email tip Karen
  • catbird
    catbird Member Posts: 33
    kkstef said:

    You are Welcome!
    Hope the email works for you!! Karen

    thanks
    thanks for the tip too! didn't know about that