CSN Login
Members Online: 5

You are here

Uterine Sarcoma

wwingo
Posts: 1
Joined: Mar 2010

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

d.lee
Posts: 31
Joined: Jan 2010

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
Posts: 1
Joined: Mar 2010

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
Posts: 33
Joined: Sep 2009

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
Posts: 145
Joined: Sep 2009

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.

donna1960
Posts: 2
Joined: Aug 2009

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?

tracyrenaewilson's picture
tracyrenaewilson
Posts: 5
Joined: Jul 2010

Are you religious??? I found it easy to deal with my cancer (which was also a low grade LMS in the uterus also) by giving every worry and concern to GOD! You are not suppose to carry worry and fear with you! You give it to GOD and he carries it! I know that sounds like whatever but, it worked for me! Trust in him and he will bring you relief! If you are a praying person, well then prayer helps also! If you need anyone to talk to then please let me know!

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

faith316
Posts: 25
Joined: Mar 2010

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.

catbird
Posts: 33
Joined: Sep 2009

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

cleo
Posts: 145
Joined: Sep 2009

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
Posts: 25
Joined: Mar 2010

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
Posts: 33
Joined: Sep 2009

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
Posts: 25
Joined: Mar 2010

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
Posts: 33
Joined: Sep 2009

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's picture
kkstef
Posts: 706
Joined: May 2008

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
Posts: 25
Joined: Mar 2010

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's picture
kkstef
Posts: 706
Joined: May 2008

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
Posts: 25
Joined: Mar 2010

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's picture
kkstef
Posts: 706
Joined: May 2008

Hope the email works for you!! Karen

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

thanks for email tip Karen

catbird
Posts: 33
Joined: Sep 2009

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

catbird
Posts: 33
Joined: Sep 2009

you must need to change something as I could not send a response to you, it says "faith316 does not accept private e mails". try a test again & I will try too.
will be interesting to hear what the dr's wife has to say. I know someone who is a Dr of chinese medicine. Ask about the no sugar does that include fruit, no soy, no flaxseed, no dairy, etc. Glad to hear that your tumor was also cut up inside you. starting 2.5 hrs once a week for 4 wks on the lite chemo gemzar as the dr wants to wait before giving me the strong stuff as to what MDA will say. I feel fine except my hair was a light brown & came back all gray & sorta wavy, it's about 1.5 " long now. funny take care

faith316
Posts: 25
Joined: Mar 2010

I did have to change a setting in my profile. I will send another test for your reply. When do you start your treatments? Did you get an appointment confirmed at MDA? I think you originally said six weeks so the timing should be just about right to get your second opinion.

Isn't it great just to have hair again? Unfortunately, my hair has been white since I was in my early forties. I have never colored it because it never really bothered me. I think it bothered my daughter sometimes more than it did me. Besides it really is a nice white and I just couldn't see spending the time or money to get it done. Mine did come back white and wavy both times. I think they use to pay for these finger waves in the 20's. Since my last treatment was in November I am actually due for a haircut. I've been putting it off because I don't want to cut of what just came back.

I am glad you are feeling well. Keep me posted.

Pam

Wonderland
Posts: 2
Joined: May 2010

I was diagnosed with Uterine Carcinosarcoma in Aug 09. I had surgery and then 3 cycles of Taxol and Carboplatin, followed by external and internal radiation, ending Dec 18,09. In January '10, the doctors found that the cancer recurred in the vagina and spread to one of my lungs. I started a new chemo protocol in January '10 and just finished cycle 7 of Ifosfamide and Taxol. The tumors have been shrinking. Is anyone else receiving the same chemo?

rheadr43
Posts: 2
Joined: Jul 2010

Yes, my mother just started the 6 cycles of taxol and ifosfamide. She just finished cycle 1. She was diagnosed in April -2010. She had a total hysterectomy. the good news they were able to get all the cancer and it had not spread to any other area. the lymph nodes were okay too. Everything I read so far is pretty grim abt this type of cancer, it has a high rate of coming back. How did your body handle the ifosfamide and taxol?

Rachel S
Posts: 2
Joined: Jun 2010

Hello ~

My Mother was diagnosed with (stage 3c) LeioMyoSacroma in March 2010. I am looking to make a connection in Northwest, Ohio or Columbus, Ohio Please. Please please contact me if you live near this area. :) I greatly appreciate it so much!

faith316
Posts: 25
Joined: Mar 2010

I am sorry to hear about your Mom. I am not sure if you saw my previous post above but I am near Toledo, OH. I did get a second opinion through OSU in Columbus. Please let me know how I can help. Gods peace.

Rachel S
Posts: 2
Joined: Jun 2010

Thank you SO much!! I will try and send you a message!! My Mother lives in Toledo! I live and 1 hour and 15 mins south of Toledo.

Rachel :)

rheadr43
Posts: 2
Joined: Jul 2010

She's 66 just had a total hysterectomy and now going through chemo. she has 6 cycles every 21 days of Taxol (day 1) and Isofamide (day 2 & 3). She's just finished cycle 1 yesterday. From what I've read, its grim and survivors after 5 yrs is rare. Can anyone offer me help, advise or additional eduacation to help my mom through this terrible time. My name is Courtney

cbotts
Posts: 6
Joined: Feb 2010

Hi Courtney, my mom went though the same thing.
She was 58 when diagnosed with uterine sarcoma (cancer also found in the pelvic lymph nodes) in dec '08, she had a hysterectomy then chemo and radiation finishing in Aug '09. Its been a year now and she is doing well. Don't go reading the survival rates, they are too depressing and the stats are probably outdated by now. Its such a rare cancer that there is not much out there. I would just focus on taking things one day at a time and helping her through her chemo treatments. Have you found any information by now, as I was never really able to find much.
My thought are with you and your mom.
Christine

SheaBear3335's picture
SheaBear3335
Posts: 6
Joined: Oct 2010

I was diagnosed with Uterine Carcinosarcoma at 27 I'm now 29 and I was wondering if there are any side effects that some of you may still be going through??? I'm a year post treatments and still having tons of trouble. All my paps come back bad and some inconclusive. They have me doing them twice a month. I notice a few of you are older than myself and have had children. I've had a totaly hysterectomy with complete lymph node removal...completed chemo/Rad both external and internal. I've never had children. This all came about when I started to have hemorrhaging and my GYN completed a D&C. Sometimes I cannot use the restroom with out so much pain that I double over. if there are any of you who've gone through this please share.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Although I do not share your diagnosis, I am sending prayers your way for some relief from the stress and the pain...Hang in !

Laurie

Subscribe to Comments for "Uterine Sarcoma"