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.
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ADVOCACY
Learn to be your own advocate. Keep a copy of all of your medical records at home - you never know when you
will need to send a copy to a treatment center. RESEARCH, RESEARCH, RESEARCH - if you don't know how..........it is time
to learn.
Family members will try to help but you must become your own advocate. You may have to educate doctors
and nurses about LMS (remember many will never see another LMS patient). By being your own advocate, you will help your family
and friends learn about this disease and they can help advocate for you when you may be too tired or weak.
NEW(er) TREATMENT CHOICES
Cyberknife (CK) - is a targeted
radiation that is only being performed at certain treatment facilities across the United States. CK radiation can reach inoperable
tumors to debulk and hopefully destroy the tumor. For more information, type Cyberknife into your favorite search engine.
Clinical Trials - new Chemotherapy
options are being developed each year. See our Treatment Center page for the link to the latest trials being offered
to LMS patients. These lists are updated every 14 days, so the options are never too old. Remember to research and ask many
questions to see if a clinical trial may be right for you.
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