Since myelodysplastic syndromes (MDS) are rarely cured, most patients never actually complete treatment. Patients may go through a series of treatments with rest in between. Some people stop active treatment in favor of supportive care. Learning to live with cancer that does not go away can be difficult and very stressful. Our document, When Cancer Doesn't Go Away, talks more about this.
Even if you have stopped your treatment for MDS, it is still very important to go to all follow-up appointments. During these visits, your doctors will ask about symptoms, physically examine you, and order blood tests. They will continue to watch for signs of infection and progression to leukemia, as well as for short-term and long-term side effects of treatment. This is the time for you to ask your health care team any questions you need answered and to discuss any concerns you might have.
Almost any cancer treatment can have side effects. Some may last for a few weeks to several months, but others can be permanent. Don’t hesitate to tell your care team about any symptoms or side effects that bother you so they can help you manage them.
It is also important to keep your health insurance. With a chronic disease like MDS, your treatment may never really be over. You don’t want to have to worry about paying for it. Many people have been bankrupted by medical costs.
Seeing a new doctor
At some point after your diagnosis and treatment, you may find yourself in the office of a new doctor who does not know your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Make sure you have this information handy:
- A copy of your pathology report(s) from any biopsies or surgeries
- If you had surgery, a copy of your operative report(s)
- If you were in the hospital, a copy of the discharge summary that doctor prepare when patients are sent home
- Finally, since some drugs can have long-term side effects, a list of your drugs, drug doses, and when you took them
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Revised: 07/02/2015