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15 Things to Do When Diagnosed With Cancer
If you or someone you love hears the words ‘it’s cancer,’ don’t hesitate. The faster you search for an answer, the greater your chances of survival
Elias Stein
I’m an author and lecturer who studies how to improve health care outcomes. So when my own father was diagnosed with cancer, I knew that there was only one way to respond: aggressively and creatively. You can read about my father’s diagnosis and cancer journey here.
Some of the most important decisions will be made early on, when patients and their families know the least and feel the most destabilized.
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Here are 15 vital steps that helped extend my dad’s life years beyond his original prognosis. I recommend that all patients and their families consider making these moves to help optimize their care.
Elias Stein
1. Learn a lot, fast
Most cancer types have nonprofit associations, patient and family groups, and websites. Take, for example, the following:
- Cancercommons.org (Email: HelpMe@cancercommons.org) provides free expert advisers to help patients explore their diagnoses and options.
- The Patient Advocate Foundation (800-532-5274) offers case management services and financial aid to Americans with chronic, life-threatening and debilitating illnesses.
- CancerCare.org (800-813-4673) provides free counseling, workshops and financial assistance.
Many hospitals and insurance programs provide similar services. In addition, most diseases, even rare cancers, have nonprofit organizations that can help you in your fight. (Try typing your diagnosis and “foundation” into your search bar.)
2. Find a great oncologist
And don’t be afraid of younger doctors. Although experience is extremely valuable, younger oncologists might be more up to date on the latest science. If you have a younger physician, ask them whether they are consulting with colleagues who have other backgrounds.
3. Play an active role in your care
Tell your oncologist right away that you’re hoping to be as informed and constructive as possible. Building trust with and within your care team is essential. Ask your oncologist what steps you can take to make your partnership as successful as possible.
4. Inquire about personalized procedures
Ask your doctor about having the cancer cells sequenced and grown as cancer organoids, which can lead to more targeted and personalized treatment options. These processes can often be initiated right away, sometimes even before you have a full diagnosis. While sequencing is becoming more commonplace, growing cancer organoids — three-dimensional lab models that can help your doctor better understand your cancer — is considered more experimental.
5. Seek second opinions
Don’t be afraid to tell your care team that you are seeking an additional consultation. At its best, oncology is a team sport. (See: How Can I Get a Second Opinion? on AARP.)
6. Think deeply about your priorities
Some patients might prioritize quality of life over aggressive treatments; others may choose survival at any cost. Doctors might think about the risks and rewards of various approaches differently, compared with patients and their families.
7. Keep an ongoing list of questions
This is a stressful time, so feeling overwhelmed is a natural response. Jot down any thoughts that occur to you or questions that arise.
8. Talk openly with your family
Have loving and honest conversations with your family about end-of-life care and make sure you have an up-to-date living will that describes your treatment and other preferences.
You can download your state’s form on the AARP website. Once you fill out the form, you will need to have the document notarized or signed by two witnesses, depending on your state, before sharing it with your care team.
9. Stay active in your care
Respect the critical expertise of your care team, but don’t take yourself out of the equation. Cancer care can be as much of an art as a science. The four most important steps are (1) finding the right and best possible care team, (2) getting the most appropriate diagnostic tests as quickly as possible, (3) determining the range of possible treatments and (4) deciding the order in which the applicable treatments will be administered.
Educated patients and families can and should play a constructive role in all these decisions.
10. Consider clinical trials
Learn about ongoing trials that may be relevant for your type of cancer on the U.S. government’s clinicaltrials.gov website.
11. Consider your overall health
Ask your care team about consulting with a nutritionist and a social worker, and make a plan for maintaining the healthiest possible diet and remaining active. Healthy eating and regular physical activity can significantly contribute to your overall well-being. Even breathing exercises, yoga and daily walks can be extremely helpful, both physically and emotionally.
12. Invest in the support communities around you
Cancer can be terrifying and even isolating, but try your best not to feel alone. Connect with communities of patients and families who have received the same diagnosis. You can find support groups for various cancer types through the websites of the American Cancer Society and other reputable cancer organizations.
13. Set up a home health-monitoring system
There are options for all budgets. They include wearing a device such as an Apple Watch or Oura Ring to monitor your heart rate, temperature, sleep and other vital signs. Also, you can check your oxygen saturation each morning with a simple oximeter.
Log these daily figures on your phone or in a notebook. If you see big changes, let your care team know.
14. Don’t be intimidated by statistics
Cancer survival rates are averages. They may not give you an accurate picture of your own chances for cure or remission. Hope is your greatest ally, so don’t give it up.
15. Embrace your life
Set big and exciting goals for family celebrations or other milestones. Your battle is about gaining time, happiness and meaning. Even after a cancer diagnosis, you’re just as alive as anyone else. New and wonderful memories are waiting to be made. Make them.
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