LMS- What is it?
Leiomyosarcoma: a rare cancer of the soft tissues of the body. Leiomyosarcoma (LMS) strikes four in every one million people. Too many patients to be considered an orphan cancer with government research dollars granted and too few to gather the attention from the drug manufacturers.
I have LMS- Now What Do I Do?
First realize that it is NORMAL to be afraid. LMS is not a cancer that many doctors treat. Many Oncologists never treat a LMS patient in their careers.
Being diagnosed with Cancer is not a death sentence and neither is being diagnosed with LMS. Our foundation has many members that are living with tumors that are stabilized after proper treatement. Some members have lived decades with LMS tumors that have not been removed surgically due to the tumors being in an inoperable position in the body OR through treatment choice.
On our Sarcoma Treatment Centers page on this website,www.nlmsf.net/ you will be able to find a Sarcoma specialist (a Dr. who sees 100 or more sarcoma patients each year). You may have to travel but it is vital to your treatment plan to have a qualified doctor treating this disease. Often some of the larger treatment centers will develop a treatment plan that can be administered through cooperating oncologists where you live.
Second (sometimes third) opinions are good BUT not at the risk of no treatment at all. Get started on a treatment if it is recommended by the Sarcoma Specialist or the tumor boards. LMS is too aggressive to be ignored. It will NOT just go away!
Often, if the original tumor was surgically removed with clean margins and there are no signs of any other LMS, the doctors will suggest either 1) Wait & watch or 2) adjuvant treatment with chemo and/or radiation.
Reach out to others in the foundation and on the yahoo discussion groups.........we have all worn your shoes and are here to help.
Finally, living through being diagnosed with cancer will cause you to go through stages of grief. You may cry or become depressed, you may become angry, you may bargain with your God, you may go through denial and finally you will learn to accept this life with LMS.
Remember - it is your life and it has changed. It will never be the same but in some ways it may become enriched through the wonderful community you will find in this foundation.
How Often Do I Need Scans?
Once you have been diagnosed and have a treatment plan, CT scans and x-rays will become a regular part of your treatment routine. In the first two years - you should receive scans every 3 months. If those scans are clean (no evidence of disease), you may then "graduate" to scans every 4-6 months After 2 more years of additional clean scans, your doctor may want you to begin annual exams.
DO NOT SKIP YOUR SCANS!!! LMS is not a disease that you can walk away and trust that it won't return. It is unpredictable and can return. Frequent monitoring is the best medicine to stay one step ahead of the disease.
If you are afraid or anxious during the weeks prior to and while waiting on the results of your scans.......that is normal. Our members call this "scanxiety" and we have all gotten scanxiety, you are not alone.
I have LMS- Now What Do I Do?
First realize that it is NORMAL to be afraid. LMS is not a cancer that many doctors treat. Many Oncologists never treat a LMS patient in their careers.
Being diagnosed with Cancer is not a death sentence and neither is being diagnosed with LMS. Our foundation has many members that are living with tumors that are stabilized after proper treatement. Some members have lived decades with LMS tumors that have not been removed surgically due to the tumors being in an inoperable position in the body OR through treatment choice.
On our Sarcoma Treatment Centers page on this website,www.nlmsf.net/ you will be able to find a Sarcoma specialist (a Dr. who sees 100 or more sarcoma patients each year). You may have to travel but it is vital to your treatment plan to have a qualified doctor treating this disease. Often some of the larger treatment centers will develop a treatment plan that can be administered through cooperating oncologists where you live.
Second (sometimes third) opinions are good BUT not at the risk of no treatment at all. Get started on a treatment if it is recommended by the Sarcoma Specialist or the tumor boards. LMS is too aggressive to be ignored. It will NOT just go away!
Often, if the original tumor was surgically removed with clean margins and there are no signs of any other LMS, the doctors will suggest either 1) Wait & watch or 2) adjuvant treatment with chemo and/or radiation.
Reach out to others in the foundation and on the yahoo discussion groups.........we have all worn your shoes and are here to help.
Finally, living through being diagnosed with cancer will cause you to go through stages of grief. You may cry or become depressed, you may become angry, you may bargain with your God, you may go through denial and finally you will learn to accept this life with LMS.
Remember - it is your life and it has changed. It will never be the same but in some ways it may become enriched through the wonderful community you will find in this foundation.
How Often Do I Need Scans?
Once you have been diagnosed and have a treatment plan, CT scans and x-rays will become a regular part of your treatment routine. In the first two years - you should receive scans every 3 months. If those scans are clean (no evidence of disease), you may then "graduate" to scans every 4-6 months After 2 more years of additional clean scans, your doctor may want you to begin annual exams.
DO NOT SKIP YOUR SCANS!!! LMS is not a disease that you can walk away and trust that it won't return. It is unpredictable and can return. Frequent monitoring is the best medicine to stay one step ahead of the disease.
If you are afraid or anxious during the weeks prior to and while waiting on the results of your scans.......that is normal. Our members call this "scanxiety" and we have all gotten scanxiety, you are not alone.