Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 23

Making Treatment Decisions
CONSIDERING LATE EFFECTS
lease and relief. My ties to cancer were over.
Or so I thought. A few months later I started
a master's program that put me on a trajectory
that I had not ever considered. Over the next
six years, I would immerse myself in the Adolescent
and Young Adult (AYA) cancer community,
serving as the program manager of the
AYA-dedicated survivorship care focused Reid
R. Sacco Adolescent & Young Adult Cancer
Program at Tufts Medical Center.
Through the survivorship (i.e., long-term
follow up) care provided by the program,
attending cancer conferences, reading the
research literature, and talking to other survivors,
I have learned a lot about the importance
of cancer survivors knowing their treatment
history and how it can impact our future
health. I understand the linkage between certain
types/cumulative dosage of therapy and
the potential health consequences.
I have learned that cancer treatment can
cause a myriad of long-lasting immediate
and/or late effects, and that there are oncology
guidelines (e.g., National Comprehensive
Cancer Network, NCCN1
; Children's
Oncology Group, COG2), and dedicated
specialists to help manage and monitor for
these potential risks. These include, mental
distress (psychologist, social worker); heart
problems (ECHO test, cardio-oncologist);
second cancer (dermatologist, breast health
specialist/oncologist); reduced lung function
(pulmonary function test; pulmonologist);
infertility (gynecologist; urologist); sexual
problems (sexual counselor); cognitive deficits
(neurocognitive testing); hearing loss (audiogram);
thyroid dysfunction (endocrinologist,
labs); and/or neuropathy (neurologist; rehabilitation
specialist).
While I learned this information many
years after my treatment ended, by sharing
my experience, I hope that newly diagnosed
patients will realize that they can ask questions
when discussing their treatment plan
with their oncologist. These questions could
include:
* What are my treatment options?
* What are the risks and the benefits of
each option?
*
In addition to side effects that may occur
during treatment, what are the potential
long-term or late effects (see above paragraph)
that could impact my future health?
The time surrounding diagnosis and treatment
decision-making can be fraught with
feelings of uncertainty, fear, and a sense of being
overwhelmed. Discussing this information
upfront can impact the treatment plan, help
alleviate certain fears, and prepare you for the
potential of future cancer-related health issues.
There are some of us who are lucky enough
to have completed treatment, who now just
want to be done with cancer. And for others
just talking about their cancer experience can
be anxiety provoking. But, for me, understanding
my personal cancer treatment-related risks
has been empowering. Cancer appeared like
an insidious mist, coming from nowhere and
completely blindsiding me. But, staying on top
of my medical care and knowing that there are
things I can do to improve my future health
have helped me to become an engaged patient
and helped ease any fears.
A dedicated survivorship program can
help tailor recommendations to each person,
though I know it often falls on the survivor's
shoulders to seek and coordinate their own
care. Knowing this is one of the reasons why
I feel privileged to work in my current role. I
help welcome AYAs into our program who
will receive specialized care and a dedicated
Survivorship Care Plan from our doctors and
nurses. Receiving long-term follow-up care
might mean seeking survivorship care at a
hospital where you were not originally treated.
When I relocated for graduate school and
found our survivorship program, I brought the
(incomplete) Treatment Summary that I had
received with me to my initial appointment.
I noted that the last infusion was missing because
by then I knew that the total amount of
each chemotherapy drug could impact what
my recommended care would look like moving
forward. I was provided with a Care Plan
outlining recommended survivorship care and
was assured at the visit that some things I had
been concerned about were unlikely to be an
issue for me in the future. I walked away from
that visit feeling more confident and knowledgeable
regarding my own long-term health.
For anyone who has not yet established
survivorship care or has not discussed their
potential late effects with a clinician, it's not
too late to do so. I had my initial survivorship
appointment nearly eight years after finishing
treatment. If you are not sure where to start,
see if your treating hospital has a survivorship
program. If not, look for one in your area or
check with your primary care physician/pediatrician.
As with most doctor visits, there will
likely be a co-pay so it's highly recommended
that you also check that the doctor is covered by
your insurance plan as an in-network provider.
It's helpful to bring your Treatment Summary
or be prepared to request your treatment
history from the hospital where you received
treatment. During the visit, it is recommended
you have some questions to ask your care team,
these could include:
* How could my cancer and/or treatment
impact my future health?
* Are there signs or symptoms of these
late effects?
* What specialty appointments or tests
should I have? Who will order these tests
and tell me the results?
I have often heard Hodgkin's described as
being one of the good cancers, likely perpetuated
by the high survival rate. I struggle with
that statement, not only because I don't think
any cancer is good, but also because there is no
reference to the potential long-lasting health
impacts of the cancer. Thanks to the efforts
by the Hodgkin's medical community, who
try to balance long-term survival rates with
late effects3
, in the 13 years since I completed
treatment, patients may receive less toxic
chemotherapy or receive newly developed
immunotherapy. While these changes may
reduce their risks in the future, it's essential
every survivor learn about their potential for
late effects and how to monitor and manage
them into the future, just as I did. l
1 National Comprehensive Cancer Network (NCCN) Guidelines for Patients 2020. National Comprehensive Cancer Network website.
www.nccn.org/patients. Accessed July 16, 2021.
2 Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 5.0 (October 2018). Children's Oncology
Group website. www.survivorshipguidelines.org. Accessed July 16, 2021.
3 Reid JH, et al. Contemporary treatment options for a classical disease: Advanced Hodgkin lymphoma. Crit Rev Oncol Hematol. 2000;148:102897.
ELEPHANTSANDTEA.COM
HODGKIN LYMPHOMA ISSUE 2021
23
http://www.nccn.org/patients http://www.survivorshipguidelines.org http://www.ELEPHANTSANDTEA.COM

Elephants and Tea: Hodgkin Lymphoma Issue 2021

Table of Contents for the Digital Edition of Elephants and Tea: Hodgkin Lymphoma Issue 2021

Contents
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover1
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover2
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 1
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Contents
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 3
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 4
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 5
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 6
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 7
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 8
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 9
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 10
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 11
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 12
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 13
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 14
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 15
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 16
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 17
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 18
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 19
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 20
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 21
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 22
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 23
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 24
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 25
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 26
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 27
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 28
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 29
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 30
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 31
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 32
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover3
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover4
https://www.nxtbookmedia.com