Leiomyosarcoma

My husband was just diagnoised with leiomyosarcoma, a rare form of cancer.  He is scheduled to have surgery on his leg to remove a tumor where they found this cancer.  He has undergone 2 MRI's and CT scan to confirm that the tumor in his leg is the primary site of this cancer.  We just got a call from his dr telling us that they found a nodule on his adrenal gland.  We are waiting for the results of his MRI of that area, before going through with the leg surgery....which he has to have done asap.  Any information regarding would be so appreciated. 

 Hi,

 Mother has also recently been diagnosed with lms in her leg.  Because it has spread to her liver and lungs, they have chosen not to operate. I have found the following webite very useful.

http://leiomyosarcoma.org.uk/

Also this list of lms survivors

http://listserv.acor.org/archives/l-m-sarcoma.html

 Hope this helps. 

 Deb

On 5/7/2009 mustangsally72 wrote:

My husband was just diagnoised with leiomyosarcoma, a rare form of cancer.  He is scheduled to have surgery on his leg to remove a tumor where they found this cancer.  He has undergone 2 MRI's and CT scan to confirm that the tumor in his leg is the primary site of this cancer.  We just got a call from his dr telling us that they found a nodule on his adrenal gland.  We are waiting for the results of his MRI of that area, before going through with the leg surgery....which he has to have done asap.  Any information regarding would be so appreciated. 

 

My father was diagnosed with LMS in September of '08 and it is a scary unknown cancer....  Do you live near a medical center that has sarcoma specialists?  We have found that it really helps to have a Dr. that has experience with Sarcoma's.  Stay strong.

 

On 6/16/2009 acc1974 wrote:

My father was diagnosed with LMS in September of '08 and it is a scary unknown cancer....  Do you live near a medical center that has sarcoma specialists?  We have found that it really helps to have a Dr. that has experience with Sarcoma's.  Stay strong.

Thanks so much for your response.  My husband had a lesion on his leg that was removed 1 month ago.  They said they got all the cancer at that site.  They did an abdominal MRI and found a 31mm X22mm multi mass on his adrenal gland.  That is all we know at this time.  His primary care doctor does not want to folow up with this for 3 months.  I am so frustrated to think that this may be the primary site for his cancer, and they are delaying this follow-up.  He will not tell his daughters about the additional mass that they found.  One of his daughters is a nurse, and would be upset to think he is waiting, and not returning to his cancer doctor.  In order to do this, he needs another referral.  When he first saw the cancer doctor, he only addressed the leg issue, and knew nothing of the other masses on his adrenal gland.  They do not biopsy an adrenal gland.....they have to do open surgery.  Please offer any other information that you may have.  Thanks again for sharing.....

I would get a 2nd opinion from a different oncologist.  If the site in his abdomen is a sarcoma they can grow very fast and should be looked at immediately upon detection.  Positive energy flowing your way.  Stay strong

 

On 5/7/2009 mustangsally72 wrote:

My husband was just diagnoised with leiomyosarcoma, a rare form of cancer.  He is scheduled to have surgery on his leg to remove a tumor where they found this cancer.  He has undergone 2 MRI's and CT scan to confirm that the tumor in his leg is the primary site of this cancer.  We just got a call from his dr telling us that they found a nodule on his adrenal gland.  We are waiting for the results of his MRI of that area, before going through with the leg surgery....which he has to have done asap.  Any information regarding would be so appreciated. 

 

Hi , I was diagnosed with Leiomyosarcoma almost two years ago.  It orginated in the uterus and spread to the pelvis and lungs.  I have been taking Mistletoe (IV) from a naturopath  and having acupuncture.   I have also had radiation,  clinical trial with VEG F trap and surgery.   I am very healthy and think that the alternate approach has helped me  a great deal.  I wish you luck and keep a positive attitude.  Remember  the doctors do not know everything and the will of the person is an amazing thing. I would be really interested to know what other people are doing.   Many thanks  Penny

I have uterine leiomyosarcoma that was diagnosed in 1993. I have an adrenal doctor (endocrinologist with a PH.D in adrenal) and when we discovered a tumor on my adrenal gland, he said get that gland out asap.   It was the general consensus among my other doctors' also.  It was not a hard procedure and I am doing fine with only one adrenal.  I don't understand why they didn't immediately operate to remove your adrenal gland along with this tumor.  Where do you live?  I have had many tumors over the years and when they appear, I have had them removed; sometimes at my insistence when they doctors' didn't quite believe they were cancer - which they were.  I am my own advocate and a fierce one.  If you need to talk, please drop me a line and I will try to help.

 Good luck and God Bless

 Brenda

Thanks so much for your reply regarding Leiomyosarcoma.  After a recent CT scan, they have now found that he has a mass on his adrenal gland.  The only way to address this is to remove the mass.  We have been told that they don't like to remove this unless it is 3 inches large.  It is currently 2 5/8 inches......go figure.  I don't understand why you would wait around for 3 months to see if it grows before remvoing it.  They did surgery on his leg May 13th, and said at that time they would wait on the other mass for the additional 3 months.  In the meantime, we do not know if the cancer on the leg was the original location of the cancer, or if this was a metasis of the main tumor.....wherever that may be.  It is a nasty disease, from what I have read.  I took a break for a while from researching.  Sometimes we can know too much.....I am sure you can relate.  I hope that the mistletoe continues to work for you.  Thanks for your interest in our situation.  Take care and I will keep you in my prayers.

 

 

On 7/21/2009 mustangsally72 wrote:

Thanks so much for your reply regarding Leiomyosarcoma.  After a recent CT scan, they have now found that he has a mass on his adrenal gland.  The only way to address this is to remove the mass.  We have been told that they don't like to remove this unless it is 3 inches large.  It is currently 2 5/8 inches......go figure.  I don't understand why you would wait around for 3 months to see if it grows before remvoing it.  They did surgery on his leg May 13th, and said at that time they would wait on the other mass for the additional 3 months.  In the meantime, we do not know if the cancer on the leg was the original location of the cancer, or if this was a metasis of the main tumor.....wherever that may be.  It is a nasty disease, from what I have read.  I took a break for a while from researching.  Sometimes we can know too much.....I am sure you can relate.  I hope that the mistletoe continues to work for you.  Thanks for your interest in our situation.  Take care and I will keep you in my prayers.

 

I had a brother that was diagnosed with leiomyosarcoma on April 21 2009. The location of the cancer was in his left lung and they performed surgery and removed the tumor and the top lobe of his left lung on May 15 2009. Approximately a month later he started coughing up fresh and dried blood and they went back in to the incision under his left arm to see if a blood vessel had ruptured from the surgery but they found no problem and shortly afterwards the bleeding stopped. A short time later in July he started bleeding again and his hemoglobin was 6.7 so they gave him 12 units of blood to try and get his hemoglobin back up, which they did but it didn't stay up. He continued to bleed and they continued to give him blood time and time again but they told him after they had went back in to try and find a rupture blood vessel that the cancer was back and the blood that they got out of his chest contained cancer cells, many cancer cells and he was terminal. On October 10 2009 he passed away in the hospital. So I urge you to get them to do any and every thing they can to remove all signs of this dreaded cancer from his body and let someone from a sarcoma center treat this man. They are probably the only ones that can save his life, I'm not trying to scare you but this cancer is nothing to play with, insist that they go ahead and remove anything that looks to be infected with this horrible cancer as soon as possible and good luck to you and him. God be with you, you are in my prayers.