Uterine Cancer: uterine leiomyosarcoma | HysterSisters
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uterine leiomyosarcoma uterine leiomyosarcoma

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Unread 04-08-2009, 08:24 PM
uterine leiomyosarcoma

:confused::confused::new::new::new::new::jump:hi there, I'm kinda new here .I've read posts but have never replied or shared my story. After heavy periods with alot of clotting I finally went to the emergency room. I had lost half of the blood in my body. After two blood transfusions and a couple of dnc's . My gyn thought a vag/hyst was perfect for me after all I just had a large benign fibroid. One week after my hysterectomy my doctor called and informed me that the pathology report showed a small amount of cancer. I saw my gyn/onc and he ordered a ct/scan to our relief it showed no malignancies. Three months later my new scan shows three nodules on the lung, which is where this cancer spreads. I'm really scared. I dont know if i even have a future. My gyn/onc referred me to a pulmonologist who is going to present my case to a board of doctors. that makes me feel a little better. Just wondering if anybody out there has a simiilar situation. I have nobody to talk to no friends, no family. I have my husband and kids but its hard to talk to them because they just get relly upset and I cant handle seeing them so worried about their mom. Is leiomyosarcoma going to do me in or is there stil hope.
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Unread 04-08-2009, 10:15 PM
Re: uterine leiomyosarcoma

Hi - I'm so glad that you found us. I haven't had a similar experience but wanted to offer a hug :cybhug: -
Unread 04-09-2009, 06:36 AM
Re: uterine leiomyosarcoma

There are relatively few here with this this of cancer. I am sending you a PM with the name of an excellent group that deals only with leiomyosarcoma.
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Unread 08-13-2009, 05:39 PM
Re: uterine leiomyosarcoma

I'm 40 years old and was recently diagnosed with leiomyosarcoma. It was initially misdiagnosed nearly 7 years ago as a benign uterine leiomyoma (fibroid). It was larger than a cantaulope by the time I had a hystorectomy in January 09. It was discovered to be leimyosarcoma when the pathology results came back.

My advise to anyone having unusual symptoms with mentration is please don't wait. If you were diagnosed with uterine fibroids ask lots of questions. If you feel a mass and it is growing quickly, severe burning pains, and you are having heavy bleeding, large clots or bleeding between periods talk to your doctor at once. Many uterine leiomyosarcomas are not diagnosed in time or are misdiagnosed. Many aren't diagnosed until after menopause when a woman sees her doctor about vaginal bleeding.

I'd like to hear from anyone who has had a similar experience so please feel free to message me anytime.
Unread 08-14-2009, 03:30 PM
Re: uterine leiomyosarcoma

I also am glad you found us. I understand lung nodules are not uncommon and often are benign but of course given your DX this needs to be checked out and monitored to see if they grow, etc. which is exactly what your doctors are doing.
I also did a search on our forum and found the following threads, yours is first, which may contain info on leiomyosarcoma https://www.hystersisters.com/vb2/sea...archid=1234882.
Pls keep us posted. I will keep you in prayer and send positive thoughts too.
Unread 08-16-2009, 03:44 PM
Re: uterine leiomyosarcoma


I think we all have that initial reaction about our survival, once we hear the 'cancer' word. However, our lives do go on! They don't end just because we hear the word 'cancer'. Try to take it day by day, and breathe.

Maybe you could find a cancer support group? You certainly need some friend support at this time, and that may be a great resource for you. You can check with your local cancer society for one.

Hang in there! I was certain I was a goner when I got my diagnosis. But it is 2 years later, and I am still going strong! I'm just as active as I was before cancer, and my quality of life is excellent.

Take care - I think you might feel better once you have a treatment plan in place.
Unread 08-18-2009, 06:34 AM
Re: uterine leiomyosarcoma

I too was diagnosed with leiomyosarcoma (LMS). That was in March of 2008.

My gyn found a large mass on physical exam after I came in with urinary problems; never had any other problems prior to this. He then had an ultrasound and a transvaginal ultrasound done right then in his office. He told me that he was fairly certain that it was a large fibroid and it had to come out. I agreed.

He sent me for an MRI the next week. He told me the MRI convinced him it was a fibroid. He did tell me that 1% of fibroids were cancer so he would do a frozen section while I was in surgery.

That test was positive for cancer and he ended up doing a TAH/BSO. The pathology test took several days and it came back as LMS.

My gyn referred me to an gyn/onc who started me out with a series of CT scans to look for other tumors (none) & to use as a base. My gyn/onc explained that LMS is rare and there isn't a lot of data on treatment but the current protocol is surgery (done). He recommended that I follow that up with adjuvent chemotherapy. I agreed. Had 6 cycles of chemo followed by another set of CT scans. I was all clear with no signs of disease. In september it will be 1 year since my last chemo.

I now see my doc every three months.

I also did a lot of research on the net. Most of it scared the heck out of me. Survival stats are not fun, but I decided that I will be in the percent that survives longterm. After all, someone has to be. So now I focus on enjoy my improved health.

My best to you all.
Unread 01-14-2010, 06:45 AM
Re: uterine leiomyosarcoma

Hi everybody, I hope all is well for you and your families. I became quite aggravated with my first gyn onc after being admitted to the hospital room after my lung biopsy. The biopsy was to confirm whether the uterine leiomyosarcoma had spread to the lungs. Sure enough it had. The lung nodules had to be 1 cm before a biopsy could be performed. By then i had several smaller nodules. I was in the hospital for 5 days. I spent one day at home and returned to the emergency room for stomach pain. They ran a Ct and found out it had also spread to my abdomen. My gyn/onc wouldn't even come to see me in the hospital to let me know that it was found in the abdomen. His Ct never showed anything in the abdomen. We found out when the house doc slipped and told me in front of all of my kids. I demanded to leave the hospital ama. I wasn't waiting for this clown. I was getting a second opinion the following day. I am so glad that i did. I went to Karmanos Cancer Center in Detroit for consultation. They are wonderful and had me all set to sstart chemo the folllowing week. I've been on chemo for seven months 10 rounds so far. The tumors have shrunk with every CT. I haven't had any side effects with the exception of hair loss. I'm doing really good. I'm on Gemzar and Taxotere. The doc is amazed at how well I'm tolerating treatment. I have my next scan Jan. 26th. I hope the news continues to be good. I just wanted to let everybody know that there is hope when being diagnosed with this terrible awful disease. One thing I've learned through this is not to sweat the small stuff and don't take your family for granted. Good luck to you all.
Unread 01-14-2010, 07:15 AM
Re: uterine leiomyosarcoma

I'm so happy you have found a good doctor and you are doing so well with your treatments. I will be praying that your upcoming scan continues to show that you are kicking cancer's butt!
Unread 01-14-2010, 03:27 PM
Re: uterine leiomyosarcoma

Glad to hear the chemo is working! My cousin was recently diagnosed with this same sarcoma and I have been itching for more info about it. We both of gyne cancers but very different ones.

Best of luck to you and hope your scan on the 26th shows amazing things!!

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