Elephants and Tea - September 2019 - 9

photo: istock.com, Ekaterina79

20% to 80% experience severe or life-threatening complications
during adulthood.
So, what happens when you are driving down the proverbial road
of life and need to make a pit stop that's not cancer related? Where
do you go? This is another area of "transition" for many childhood
survivors. It's incredibly important to establish a relationship with
a primary care physician (PCP). A primary care physician provides continuous medical care. They are trained in a wide variety
of health-related problems, they are oriented toward general health
maintenance and disease prevention and refer to specialists as
needed. They can collaborate with your medical oncology team to
provide ongoing medical care that is informed of potential risks of
late effects. Think of it this way, you want every member of your pit
crew to have access to pertinent information so that you can stay in
the race. Your PCP is part of your crew, make sure they have a copy
of your survivorship care plan too.
You got this, you are in the driver's seat. You might be wondering,
this is great but how do I stay on track if I don't have a pit crew? The
good news is you can put your own crew together. Where to start?
We'd recommend starting with securing a copy of your survivor
owner's manual. The COG recommends that your Cancer Treatment
Plan should include the following information:
1. Name of your diagnosis, the date you were diagnosed, and the
date you completed treatment.
2. Date and descriptions of any relapses.
3. Name, address, and phone number of hospital or clinic where
you received care.
4. Name, address, and phone number of your pediatric oncologist,
and other health care team members responsible for your care.
5. Names of the chemotherapy drugs you received and how they

W H I T N E Y B. H A DL E Y, M A , M S W,
L S W, IS A 2 2 Y E A R C H I L DHO OD
C A NC E R SU RV I VOR , AYA SU PP ORT
SPE C I A L IS T A N D C OM M U N I T Y
OU T R E AC H C O OR DI NATOR ; A NGI E
FOW L E R , A D OL E S C E N T & YOU NG A DU LT
C A NC E R I NS T I T U T E , U H R A I N B OW BA BI E S &
C H I L DR E N ' S HOSPI TA L

were given (by mouth or into a vein).
6. Total (cumulative) doses of chemotherapy drugs and date of the
first dose of each one given.
7. Name and area of any surgery that you had and name of surgeon.
8. Dates, areas, total doses and number of treatments (fractions) of
any radiation you received.
9. Dates, and times of bone marrow, or stem cell transplant, and the
name and phone number of the supervising doctor.
10. Type of condition (chemotherapy/radiation) received for bone
marrow or stem cell transplant.
11. Blood products received, and date you received the first blood
product.
12. Names and dates of any significant complication ad treatments
received for complications.
13. Current medications.
14. Major side effects (such as kidney or heart injury).
15. The number and location of previous central line.
You'll want to reach out to your treating physician and or the clinic where you were treated and request copies of your records. While
you're at it, ask them to complete your Cancer Care Plan. You can also
download and print a blank survivor care plan from ASCO at www.
cancer.net and the American Cancer Society at www.cancer.org. Our
friends at Triage Cancer have created a short video (https://vimeo.
com/347517561) on this topic. It explains what survivorship care plans
are, what should be included in them, and how to get one. Be sure
to share the owner's manual with all members of your crew, which
includes any physicians or providers who are taking care of you, like
PCPs, and any specialists you may be seeing. Stay on track, follow the
owner's manual, work with your pit crew on a regular basis and never
forget that you are in it to win it!

A M E L I A BA F FA IS A N U R SE NAV IG ATOR AT A NGI E FOW L E R
A D OL E S C E N T A N D YOU NG A DU LT C A NC E R AT U H R A I N B OW
BA BI E S & C H I L DR E N ' S HOSPI TA L . A S A P S YC H I AT R IC
M E N TA L H E A LT H N U R SE PR AC T I T ION E R , W I T H Y E A R S OF
E X PE R I E NC E WOR K I NG W I T H A D OL E S C E N T A N D YOU NG A DU LT
C A NC E R PAT I E N T S , A M E L I A PROV I DE S T H E R E A DE R W I T H FAC T UA L
I N FOR M AT ION A S W E L L A S H E L PF U L S T E P S TO TA K E W H E N DE A L I NG W I T H
T H E SE NSI T I V E IS SU E S OF SE X UA L I T Y A S A C A NC E R SU RV I VOR .

ELEPHANTSANDTEA.COM
SEPTEMBER 2019

9
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Elephants and Tea - September 2019

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