Clustering My Healthcare

Clustering is my approach to optimizing my health and wellbeing while meeting the lifelong follow up demands of cancer survivorship.

So, what is it?

Clustering is ALL about being intentional when it comes to medically necessary and predictable appointments that promote my health and wellbeing AND screen for late effects of my cancer treatment.

How do I accomplish this in my life?

  1. I have a master list of every follow up recommendation
  2. I designate the months of my year that I am willing to schedule those appointments (presently, my intervals are either 6 or 12 months and my months are November and May)
  3. When something happens that breaks with my November/May clustering, I simply schedule the next appointment in either November or May: easy-peasy

Why do I cluster? I cluster because I want my healthcare needs/concerns to be addressed within the confines of two months of the year inasmuch as that is possible leaving me with 10 months to myself.

I am a highly capable, well informed individual with a lot of fire in my pants; therefore, I exercise the responsibility I carry for my health and wellbeing with great intention and the utmost compliance without sacrificing the moments I am present to enJOY.

Clustering provides me with 10 out of every 12 months of blissful freedom from a healthcare delivery system that is so, and too often, driven by a disease mindset and would much prefer to view me as a sick individual as opposed to the vital well person that I am.

Cluster with me, won’t you?

Primary Care Provider: Essential

Fact: primary care providers  are essential in the life of the cancer survivor.

Fact: medical education does not speak to the potential late effects of cancer treatment and appropriate screenings across time.

Fact: we, survivors, have a tendency to feel safe [and] secure under the umbrella of our oncologists; however, our oncologists have a tendency to focus solely on our cancer at the expense of our primary healthcare needs as we age.

If your cancer treatment summary is the little black dress of your survivorship wardrobe, then a primary care provider is the string of pearls around your neck.

Truth: I have not seen an oncologist in 35 years which was 2 years after I was given my last dose of chemotherapy. I grew up as [a well child, a well teenager, a well young adult, a well individual], and I believe, I am ALL the better for it as I never viewed myself as chronically ill.

Truth: I find myself reluctant to step out from under my PCP’s care unless it is absolutely necessary which, to be quite candid it, usually isn’t. I will admit to you that my internist is second to none.

She is the head coach of my healthcare team [and] we utilize our special teams [if/when] we need to do so. Forgive the football analogy, but I LOVE football (Gator Nation; Steelers Nation).

She knows me.

She knows my history.

She knows my risk factors.

She respects that I know my body.

She not only cares for me, but she also cares about me.

She approaches my care with an attitude of humility and grace that allows her to know the limits of her expertise.

She is my advocate [and] we are  truly partners with regard to my health and wellbeing.

Like I said, she is second to none.

Survivors, we need PCP’s who are focused on prevention with a healthy respect of the potential late effects we are at risk for across our lives.

Again, you want a PCP who will partner with you on the screening for late effects; a PCP who will be responsible without being overly vigilant; a PCP who cares for you [and] about you. A PCP who knows the limits of his/her expertise. A PCP who is invested in your wellness.

I live a life-full [and] I am hope-full with a vision for my future.

I fully intend to watch my grandchildren grow up: BOOM!

It is possible to find such doctors and nurse practitioners; they are out there though it may take some time in interviewing.

Persevere.

Further Reading: Creating a Multidisciplinary Healthcare Dream Team.

Little Black Dress: Got One?!

Truth: every wardrobe needs ‘kicky’ little black dress [or black tie] just as every cancer survivor needs a cancer treatment summary [CTS].

A CTS is a detailed summary of your diagnosis, treatment along with your risk profile for late effects and recommendations for future monitoring diagnostics.

A thorough CTS includes the following:

  • Treating Institution
  • Treating Physician
  • Diagnosis, including Primary site
  • Age at Diagnosis
  • Year of Treatment
  • Extent of Disease
  • Surgery: date and type
  • Radiation: Total given, type of radiation, and the area involved in the radiation field
  • Chemotherapy: names of agents and total doses, if applicable [i.e. anthracyclines and alkylators]
  • Personalized Risk Profile
  • Recommended Screening Diagnostics

Late effects monitoring should be done as part of the greater wellness plan and in keeping with the Children’s Oncology Group Survivorship Guidelines.

A copy of your CTS should be given to your Primary Care Provider [PCP] and each specialist involved with your care. You should also have a copy for your records.

Next Post: Why you need a Primary Care Provider