"Right now, I'm having a day-to-day battle with my brain.&nbsp; I have cancer...do I really have cancer? Oh yes, that's right, I have cancer. What do I do now?." [Erica]

"Are you sure I have cancer" is pertinent, a lulu, and gets right to the heart of the matter.  An even better question is&nbsp; "Are you sure I have leiomyosarcoma?".  Leiomyosarcomas are difficult to treat, it might be a different cancer, one that is easier to treat.

Leiomyosarcoma is extremely rare.  Some pathologists may never have seen one before.  There are, however, pathologists who have a major interest in sarcomas, and who review them all the time.  Your tumor tissue should be examined by a sarcoma pathologist for confirmation.      

And because leiomyosarcomas are rare, difficult to treat, and don't react even like other sarcomas, it would be best to go to an oncologist [cancer doctor] who has a major interest in sarcomas, and treats a lot of patients with them.  We call these doctors, informally, sarcoma oncologists.  They usually practice at a sarcoma center, or a cancer center of some kind.

Sarcoma oncologists recognize that leiomyosarcomas do not respond to some treatments that other sarcomas do respond to.  Where a general oncologist might treat you just like any other soft-tissue sarcoma, there are some situations where the treatments may not give any proven benefit, and do give damage.  There are also some situations where there have been new developments which are very exciting, but require the tumors to be tested.

One of these situations is adjuvant treatment of a truncal LMS that has been removed with clear margins.  Another is the development of STI-571, a new designer drug, which works phenomenally well in clinical trials on GIST LMS. We will discuss these further on.

The&nbsp;"Doctors" section can help you with finding a sarcoma specialist, so can the LMS List at ACOR.org.   See the section on Resources.

After choosing him/her, you might call up the sarcoma oncologist's office and make a tentative appointment.  Make a list of what is required....tissue samples, addresses, reports, referrals.

Go to your primary doctor.  State to him/her: I have a rare cancer.  I have heard that this doctor [the sarcoma oncologist] treats a lot of these particular types of rare cancers.  I would like a referral to this doctor for decisions about treatment and management of my condition. [You are entitled to a second medical opinion by an expert.  See Patients. Rights section.]

Now if you live pretty far from the sarcoma oncologist, the sarcoma oncologist might be making decisions for treatment with you, that your oncologist nearer home will be carrying out.

Go to your general oncologist [if you have been referred to one] and state: The sarcoma oncologist treats a lot of leiomyosarcomas.  I am being referred to him for second opinions on treatment options.   Do you have any objections to this?  Would you be willing to carry out some treatments recommended by the sarcoma oncologist, here, nearer my home, if it were possible?

You can also see another sarcoma oncologist, should things not jell well with the one you are seeing.  Your choice of doctors is very important.  And you can change doctors if you think that your needs would be better met by another doctor.  We would especially recommend that you change doctors if your doctor is not interested, encouraging, helpful and hopeful.