About Leiomyosarcoma
wdaytonco August 8th, 2007
What is Leiomyosarcoma?
Darrin’s cancer started with mild pain in his right pectoral muscle during exercise. At first he (and his doctor) thought it was a torn muscle. After a couple of weeks of no improvement, Darrin went in for more testing and the doctors tried to “drain” the hematoma. When this was unsuccessful, they sent him in or an Ultra-Sound. This also indicated a torn muscle and the treatment was to simply not exercise.
However, after a couple of more weeks, Darrin complained to his doctors and they suggested an exploratory surgery. During this surgery they discovered that his right pectoral muscle contained a very large High Grade, Giant Cell Leiomyosarcoma. The doctor was hesitant to move forward, so he simply closed up the entry point and referred Darrin to an Oncologist.
The Oncologist immediately referred Darrin for surgery to remove the cancer, as well as his entire Pectoral Major (Chest Muscle). Darrin underwent this surgery, and after 5 weeks of healing, he started radiation. The doctors were sure that they had gotten all of the cancer, and clean margins were obtained. After several months of radiation treatment, Darrin was asked to have a final CAT scan. This scan showed that the cancer had already spread to both lungs, and was growing at an exceptional pace. Darrin was immediately put on chemotherapy and everyone thought it might be a success story for Darrin.
The chemotherapy treatment was once a week (5 hours) for two weeks, then a week off to recover. After four chemotherapy sessions, Darrin had no hair, was pretty weak and exhausted. However, shortly after that, Darrin began to have more breathing problems, and additional scans indicated that the cancer had shrunk, to the level that it was now possible to remove the cancer from one lung.
He had one lung surgery which removed a significant part of his lung, and received two more chemotherapy sessions. Two scans in a row showed that the cancer was gone. Unfortunately, the third scan showed the cancer has spread to his other lung, and the doctors are refusing to operate, as they suspect that the surgery may kill Darrin, and the tumors are too many to remove them all and leave enough lung to be able to breathe properly.
At this point, Darrin elected (with the assistance of his doctors) to dis-continue further chemotherapy. The “best” form of chemotherapy was no longer working, and the options for further chemotherapy were not sure to extend his life beyond December 2007. This is where we are at when we decided to create this web site.
In the meantime, Katee Clock, Darrin’s daughter was diagnosed with colon cancer, and Darrin has embarked upon a newer, but highly experimental chemotherapy, in the hopes that it would prolong his life while his daughter receives her cancer treatments. There are no guarantees with this new treatment, and it’s never been used on Darrin’s type of cancer.
Leiomyosarcoma is very rare. Here is some information we could find on Leiomyosarcoma:
Leiomyosarcoma is one of the forms of a very rare and aggressive cancer called Sarcoma.A sarcoma is a cancer of the connective or supportive tissues of the body. These tissues include bone, cartilage, fat, muscle, and blood vessels. The word sarcoma comes from the Greek word meaning ‘fleshy growth’.Sarcomas can invade surrounding tissue and can metastasize (spread) to other organs of the body, forming secondary tumors. The cells of secondary tumors are similar to those of the primary (original) cancer. Secondary tumors are referred to as “metastatic (mets)” These mets are part of the original cancer and are not a new disease.
Leiomyosarcoma (LMS)is a type of sarcoma cancer. Leiomyosarcomas are malignant tumors which develop from smooth muscle tissue. Smooth muscle cells make up the involuntary muscles in our body. Involuntary muscles are those which we do not move consciously with our brain. Involuntary muscles are found in most parts of the body: in uterus, lungs, liver, stomach and intestines, walls of all blood vessels, and skin.The exact causes of Leiomyosarcoma are not known, but studies have indicated that there are genetic and environmental risk factors associated with it. Certain inherited conditions that run in families could possibly increase the risk of developing Leiomyosarcoma. High-dose radiation exposure, such as radiotherapy used to treat other types of cancer, has also been linked to Leiomyosarcoma and it is possible that exposure to certain chemical herbicides might increase the risk of developing this disease, but a direct association has not been proven.
Most patients with Leiomyosarcoma choose to be cared for by a multidisciplinary team of health professionals. It is important to get help with this rare form of cancer from a sarcoma center which sees a large number of Leiomyosarcoma patients. Many local oncologists rarely see more than one or two cases of Leiomyosarcoma in their entire career. Most sarcoma centers will work with your local oncologist in trying to help make the best choices for your care. See Sarcoma Centers.After diagnosis, your tumor will be staged to determine how far the cancer has advanced. This is important because treatment varies depending on the stage. Stage is determined by the size of the tumor, whether the tumor has spread to nearby lymph nodes, whether the tumor has spread elsewhere in the body, and what the cells look like under the microscope.
A pathologist will examine your tissue samples under the microscope, using special chemical stains, then he can classify your tumor as high grade or low grade. High-grade tumors have the more rapidly growing cells and so are considered more serious.
Tumors are staged using numbers I through IV. The higher the number, the more the tumor has advanced. Stage IV Leiomyosarcoma means it has involved either lymph nodes or has spread to distant parts of the body.
The outlook for patients with Leiomyosarcoma varies. It depends on the location and size of the tumor and its type and extent of spread. Some patients with low grade tumors or with tumors that have not spread beyond Stage I have had excellent prognoses. There are numerous long term survivors from this group. In general, high-grade tumors that have spread widely throughout the body have less favorable survival rates.
Several clinical studies are underway and offering more options to Leiomyosarcoma patients. You can learn more about some of these clinical trials and treatment possibilities under the Patients Resources portion of this website. These pages are not all inclusive, but we work to keep them frequently updated.
Since the causes of Leiomyosarcoma are not known, there are no recommendations about how to prevent its development.
- Comments(14)
Prayers are sent your way…
Love
Charlotte
For more information and on-line support groups for leiomyosarcoma go to:
http://www.lmsdr.org/support.php
Blessings,
Sharon in San Francisco
Uterine leiomyosarcoma (LMS)
5 yr. survivor
i am 14 years down the line now since being diagnosed with lms
LMS came back 2 years after my uterus was remove. This time it returns to my lungs. One large tumor at lower part of righ lung and six small ones on both. My oncologist decided to treat me with chemo in order to shrinks those tiny tumors down before surgically removing the big lump. I’m keeping my fingers crossed and trying to be optimistic.
I hope I could repeat Richard’s comment.
Best of wishes for Darrin.
I was diagnosed with Stage IV Uterine Leiomyosarcoma in March 2006. The sarcoma has metastisized to the lungs. I have had chemo twice, 2 lung surgeries, and the primary tumor in my uterus was removed successfully. Unfortunately, the chemo and surgeries have only given me short periods of having clean lungs. I am currently involved in a clinical trial infusion with the goal of keeping the 6 tumors in my lungs from growing…or shrinking them. After 3 months, 3 tumors have shrunk and 3 have not. My quality of life is good, although I have to use oxygen when moving at all because I become very short of breath. Thanks for letting me share. I have hope for some more time.
Best wishes for Darrin
My hysterectomy pathology showed a large leiomyosarcoma, scans showed it has metastasized to the lungs. Two tumors were removed from my right lung, and I’m about to start chemo to shrink the others, perhaps 6 are visible on a CT scan. I may have more surgery to remove what’s left. Stage IV doesn’t sound good, and I’m concerned that chemo is not considered effective. But here’s hoping, and good luck to everyone who shares this boat with me.
Pat, age 55
Pat and Karen,
We are so sorry to hear about your leiomyosarcoma. All we can tell you is to fight it as hard and tough as Darrin did – to the bitter end and don’t settle. If one Dr. runs out of options, talk to others. Darrin fought it ever step of the way and it bought him 2 more years of time that no doctor ever thought he would have.
Don’t give up! We’re praying for you!
My husband had leiomyo, diagnosed in 2004. The best treatment he had was taxotere and gemzar mix which bought him an extra year of quality life. The toxicity of the chemo finally caused the doc to stop the treatment. He went to Dana Farber for yondellis treatment, which was experimental, but yielded no response. After five years of chemo, radiation, etc., he decided to stop treatment. He was tired, extremely thin, and life quality was poor. He had no taste in his mouth, so even food was not pleasurable any more. His cancer metatisized very quickly into his pancreas, colon and brain. He subsequently died from a stroke from the brain mass. We had a super oncologist locally who constantly found new studies to try to help my husband keep going. We went to Sloan Kettering at first who diagnosed the cancer, but treated us like mannequins. We were left in a room for two hours once when the chemo doc forgot about us. We received excellent treatment at Dana Farber and the Norwalk Cancer Center. We were treated with respect and dignity. Just some thoughts to share. Best wishes to all who are fighting this rare and insidious cancer. Prayers are with you all.
My mom has been diagnosed with lms 11 months now, it has spread to both lungs and to one side of the heart, she uses oxygen 24 hrs per day. We have been advised that there is no use in continuing the Chemo or even Radiation. The good thing is that she experiences no pain.
My prayers are with all patients of this disease. Never give up!!!!
My mum has just been diagnosed with stage 1v uterine leiomyosarcoma.It had spread to her hips which have been replaced and she has 3 maybe more spots on her lungs. We are seeing a specialist at a sarcoma unit this week for a second opinion as her current oncologist will not perfom a hysterectomy, I have read about other people also with stage 1v who say they have had surgery so we can only pray the same will be offered for mum.
Hi there,
I was diagnosed 5 yrs ago with stage 4 LMS. When found, it had already mets to the liver and had damaged one artery. I had 2 surgeries performed in an attempt to remove them, but was very unsuccessful and eventually left me with 2 hernias. I was started on gemcitabine weekly X 3 and off a week and was on for 9 months. My oncologist (who specializes is sarcoma) told me I needed a break from the drug, unfortunately 3 months later it had spread to my lung. I was then treated with Doxirubicin for 6 cycles. After treatment I developed cardiac cardiomyopathy. But the good thing was I was able to stay off drugs for 2 yrs. 1 1/2 yrs ago, my tumors were on the grow again, so I am now in a clinical trial with Yondellis and have been since then. My side effects have been minimal and I have no pain, which is a blessing. I am thankful that I have been able to have good quality of life… I have seen kids graduate with degrees, get engaged, married and have been blessed with becoming a grandma X2. I have also been able to travel a little bit. I am a firm believer that attitude has much to do with how we feel, not only emotionally but physically. I wish the best for all.
I have just started chemo for Leo that’s what i call it. I think i’m in stage 2. this is really scary. I have a 16 year old and she says i better be around for her kids. My husband thinks they got it all in surgery. He’s my Mr. Positive. I went to Indy for their specialists on sarcomas. I have Adramycin and Dacarbazine for 5 days then I’m off 16 days. I have lots of people praying for me and i will pray for all of you too.
Hi. I had leiomysarcoma of the womb 4 years ago. It has now spread to the skin on my head, both lungs and liver. Have just under gone chemo which has not worked and the tumour in both lungs have grown. Finding support in Swansea is almost non existence as no one knows what to do with me. Have even been told by consultant that if I want to see him to discuss my case I will have to go private and pay to see him. Feel so alone. Thank goodness for web sites like this
My mother has been fighting leiomysarcoma for 10 years now. It started in the uteris and had a historec..it then moved to the lung but was succsesfully removed..it then moved to femur..she went through a femur replacement and was cancer free for 2months..it now has spread to both lungs,liver,spine,shoulder and rib…they have decided surgery is not a option anymore and said he has approx 2 years at best due to how many areas the cancer has spread and being stage 4..she is so high spirited and she seems to be my rock through her ongoing battle..the have suggested that she go through 3 weeks of chemo..3 off and then another 3 weeks…her quality of life is very well right now..she isnt showing many symptoms..they suggest she have chemo soon but said it will reduce the quality of her life a great deal. they always say to her that she must be a fighter as she is so strong and is fighting this disease with everyhting she has..after reading all of the battles you all have gone through i know there is hope. I thank you all for sharing your battles and my prayers are with you all