Do you understand your cancer treatment and prognosis?

Cancer treatment has gotten better and better over the years, and being diagnosed with cancer is not necessarily a death sentence.  There are more effective treatments with fewer side effects, nausea is controlled and many people with cancer view it as a “detour”, and “inconvenience” and go on to live normal lives.  Unfortunately, this is not always true.  Not all cancers are curable, but they may be treatable; it is possible to go into remission and live quality filled life for quite some time.

 However, if you are diagnosed with a “Stage 4” cancer, it means that it has spread beyond the original site, and while you may go into remission, you will most likely never be “cured.”  We always hear of the person with a metastatic cancer which “disappears”. Lance Armstrong, the bicyclist was diagnosed with testicular cancer that had metastasized to his brain in 1996 and he has done quite well.  This is not the typical course, and while we always recommend to “hope for the best,” anyone in this position should “prepare for the worst.”  This includes having conversations with your health care providers and your family; not easy conversations, but necessary and it ultimately makes it easier for everyone. 

 I have found that some health care providers don’t like to have difficult conversations: the reasons are many, perhaps they don’t want you to lose hope. Also, it takes time, and providers are limited in the amount of time they can spend, and sometimes your providers aren’t comfortable with these discussions. However, most people need to know, and appreciate knowing what to expect.

 I am working with a client with a metastatic cancer, and the only way we find out what is really going on, is when I ask.  There is not much voluntary information given out, leaving her and her family in the dark.   Ask your provider what the prognosis is, “will I get better”, “what can I expect”, “will I always be in pain”, “why is my pain worse”, “will this wound heal?”

 And then we are all afraid of the word “hospice”, which we shouldn’t be.  Hospice is supportive comfort care, for those with incurable illnesses, be it cancer, heart disease, renal disease, lung disease.  And don’t forget palliative care, which is exactly what it sounds like, providing relief from symptoms and stress of an illness, improving the quality of life for the patient and family.  Patients enrolled in palliative care get additional support in terms of pain control, family support, equipment (ie walkers) and patients enrolled in hospice can be treated IF it is determined that the treatment will improve the quality of your life.  Radiation can possibly be given for pain relief, blood transfusions are allowed if you will feel better, and sometimes even tube feedings if it helps. We also know that those enrolled in hospice live longer and have more quality to their life than those who continue to be treated until the end of their time.

 What is the goal and my recommendation? Ask, ask, ask.  Don’t be intimidated by the health care system, ask the above questions.  While it is easier to put our head in the sand, it will come back to bite you at some point, and you and your loved ones will be happier that you did.

 In all of my years as a Physician Assistant in oncology, I never had anyone tell me they were sorry they enrolled in hospice, just that they were sorry they waited so long.

 #patientadvocate, #beinformed, #askquestions, #palliativecare, #hospicecare