One More ‘ologist’ – Better Strategies for Cancer Survivorship

After staring down Stage IV Non-Hodgkin’s Lymphoma in 2016, I AM HERE. And I am grateful beyond measure.   

But I am also learning that the treatments that saved my life come with a high cost, and that in its own way Survivorship is actually the hardest part of what we now call ‘the Adventure’.

The reality is you never really get off this merry go round. You now have a chronic medical condition that will continue to evolve with new needs and realities for the rest of your life.

My care team are incredibly dedicated, knowledgeable professionals, but it feels like they are not knowledgeable on what survivorship really means. 

As more and more of us survive, we don’t want to just survive, we want to live too -not exist, but LIVE.    

When you’re in active treatment, care is coordinated; all the doctors and members of your care team consult with each other about path forward, especially if they don’t agree.

But when you come to Survivorship, which you actually want to be the longest part of the Adventure, the care is suddenly fragmented.

Doctors don’t consult with each other as they did while I was in active treatment, resulting in me trying to bring doctors to medical détente, me without the medical degree.

For example, when trying to cope with chronic pain I started on a road with one doctor, in this case my neurosurgeon, because it felt like nerve pain, and then another of my doctors objected to the path that had been recommended.

So, I had just spent time, money, angst, had tests done and prescriptions filled, to be told emphatically by a different doctor “No, you shouldn’t be doing that!”

Who do you listen to? Who’s right?

And how do we approach Survivorship to improve patients’ lives and outcomes without burdening an already over-taxed system even more with its myriad of health insurance requirements and parameters? 

Survivorship needs to be a core part of oncology practices, not just a clinic to visit, if they have room for you.

We need a new subclinical specialty of Oncology Survivorship.  

This specialist would serve as a field general for the myriad of care survivors require and be trained in survivorship with all its challenges and nuances and be an integral part of each oncology practice.    

One way to think about this would be to consider the field of gerontology and geriatrics. Those specialties did not exist as they do today 60-70 years ago, simply because the patient population did not exist.

As cancer treatment enable more of us to survive and to survive longer, we are a new patient population with our own needs, and we need our own specialist. Surviving cancer is a completely different beast than treating cancer, with its own unique needs, challenges, and knowledge base required.

We need our own specialist. We need a Survivorship Oncologist.

Onward!



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