RSS

Each time I am asked to interview a candidate to help choose future medical students, residents, and fellows, the same question goes through my mind: What will make a good doctor?

In my experience, cancer treatment plans rarely progress linearly. The further we veer from the anticipated course, the more wrong and dark and sinister it feels. 

Comments

Elizabeth Glosik, BS

Jan, 23 2018 12:28 PM

As a patient advocate, I am always looking to find ways to get the patient's and doctor's perspective to mesh.  Thank you for addressing the resiliency aspect of disease management, and the importance of coaching the elements that are not innate in many patients.  That being said, patients need to be offered the resources for those elements so they can really capitalize on their benefits, and this is where the disconnect often happens.

Our patients bring the context of their lives into the hospitals and cancer centers where they receive care, including experiences of abuse and trauma. Patient-centered care means addressing situations that...

My hope for the new year is that more of our patients with cancer will experience a miracle thanks to precision medicine.

The burden of cancer weighs most heavily in the areas with the fewest health resources. Essential to this fight are dedicated, curious local experts conducting scientifically rigorous cancer research and...

We all have them: the needy patients who take an extraordinary amount of your time and effort. Consider that they aren't needy, but in need. And we can help.

Comments

Peggy Zuckerman,

Dec, 22 2017 11:18 AM

As a long-term survivor of Stage IV kidney cancer, which had since turned me into a patient advocate, I must applaud the recognition of the value of the social support systems that other patients and advocates provide. The patient is usually the least prepared to handle the demands of the medical system--he's sick! Unless given that necessary support and education, the patient will remain overwhelmed and vulnerable to despair, helplessness and quackery. 

In my case, I was misdiagnosed as having a scabbed over stomach ulcer which was to account for my severe anemia, and treated futilely for 8 months.  At last, the doctor decided an alcoholic --no questions to me about the possibility--as my liver was failing, in need of a liver biopsy. A simple ultrasound showed a mass on my kidney.  At that moment, the US tech turned away the screen, told me 'the doctor will talk to you", set up a CT where no one would talk to me. When the doctor did finally call me to say I had a mass, and that some other doctor would 'talk to me' about this, as soon as he figured how who.  Thus silenced repeatedly and in shock, I did not even think to ask how large the mass was.  I assumed it was a pea or peanut size, and only after getting myself to Mayo Clinic, was I told that it was a 10cm mass. Plus, the CT scan of the previous week had clearly shown that I had multiple lesions in my lungs, a fact not given me by the 'doctor'.  From the zero of a scabbed over stomach ulcer to metastatic kidney cancer, all while being treated with iron pills and Protonix, and a large helping of silence.

What had I been taught in those early days?  I had been taught to be silent, not to ask questions, not to expect complete information, and that I could no longer trust the doctor who had cared for me to be accurate in his diagnosis, nor in his willingness to give me proper care.

But Mayo sent me home with a binder full of information, including my medical records with simple charts to explain my care, a recommendation for treastment post-surgery, a precisely chosen local oncologist knowledgeable about kidney cancer, and a plan for treatment.  That was 13 years ago, and that binder and my subsequent successful care taught me that I was lucky.  And 'getting lucky' is not the best way to run a health system or to stay alive.

The luck of finding other patients and support groups helped me utilize the services, to make decisions with some confidence, and to learn to cope with the stunning diagnosis of a terminal disease.  As a long-time member of the Society for Participatory Medicine www.participatorymedicine.org, I repeat the simple admonition, "Let patients help!" and expand it to "Let patients help each other!" .  

There are credible patient resources, one of which, www.smartpatients.com, can be invaluable. We now have a dramatically improved atmosphere for the involvement of patients in their own diagnoses, in research, in education, and in shaping the medical system supportive of patient engagement.  As the author knows, it can be overwhelming without a team, and the patient benefits from team-training, as do the medical personnel.  Thanks for the honesty in the tone of this article, and for the recognition that patient participation is essential for improved outcomes.

 

 

 

We all hope that our families will stick together through thick and thin, be there to celebrate in each other’s joy, and be the people who will catch us when we fall. But, I know that there is no rule book...

I understood cancer as an oncologist: I understood its breadth. The manifestation of disease. Now, as a cancer caregiver, I understand its depth.

Comments

Don S. Dizon, MD, FACP

Dec, 01 2017 1:20 PM

Rick, Great post!!! Welcome to Connection dear friend! D

 

L H

Dec, 08 2017 10:22 PM

As a patient and a cancer caregiver, I too, believe hope is essential, but not at the expense of honesty.   Physicians need to also understand that we believe everything you say, and that is precisely why we chose you to be our doctor.  You  are the expert, and we know that we can't even begin to unravel an understanding of this disease without your help.  However, unless we have informed you otherwise, we expect you to keep us informed when we are showing improvement, and likewise when our disease is progressing, but even then, such news does not have to be without hope.  Hope can be found in the most unlikeliest of places, and although you may believe there is no hope, patients find ways to create their own idea of hope which may not even remotely resemble your version if it.

Anthony Frank Provenzano, MD

Dec, 09 2017 9:41 AM

Today marks the one year anniversary of my beautiful wife Elizabeth's death from a rare carcinosarcoma of the uterus after tamoxifen years ago. Nine weeks from diagnosis to death... I knew little about grief before she died and thus began my journey with my family that has been filled with so much pain and sorrow. And yet, little miracles have happened since she passed... A flock of cardinals lining up in my daughter's backyard in single file just staring at the house.... her appearnce to me in several dreams over the last year that were visceral and comforting... on the anniversary of a massive pulmonary embolus that harkened her decline (while I spoke to her one night as I lay crying in bed and asking God to let me know she was okay) a lamp suddenly turned on... what I learned?.. that grief plants the seeds of mercy in our hearts which helps us all, including our patients and their families..

Subscribe to RSS