doctor-patient

As we all know, cancer is a devastating disease. It is not only devastating to the patient… but it devastates everyone who cares about the patient. Once you have been diagnosed with cancer, your life is never the same.  Every ache, every pain, every bump and every lump makes you worry that your cancer is back. Regardless of what type of cancer you are diagnosed with, all persons with cancer share the same anxieties and fears. Everyone wants to be seen by the best doctors. Everyone wants to be treated with the best treatment available. Everyone wants to live.

When diagnosed with cancer, it is not uncommon for the first reaction to be one of fear of suffering a slow and lingering death. Then the panic sets in. Waiting to get an appointment with the oncologist or surgeon. Waiting to have tests scheduled. Waiting to get the test results. Waiting to see yet another specialist. Waiting for the results of further testing. The waiting causes tremendous anxiety and panic, as the uncertainty of your future lies in the hands of total strangers. You wait, and you panic, and you feel like each day you are not being treated you are that much closer to dying.

Be assured that a few weeks-worth of waiting will not affect your overall treatment outcome.  It is more important to find the right doctor for your type of cancer—a doctor whom you trust and feel comfortable with. You will have no choice but to put your fate into the hands of that cancer specialist (oncologist). They will determine the best form of treatment for your cancer, which may include surgery, chemotherapy, radiation therapy, hormonal therapy, immunotherapy or precision medicine.   You may be treated with one or a combination of these treatment modalities.

While you must have faith in your doctors, you can also make sure that you are informed about the type of cancer you have.  Do your Internet research to increase your understanding of your type of cancer and the standard and not-so-standard treatments available. Bring a notebook and pen with you to every appointment.  Write down all your questions. Ask lots of questions. Ask for clarification when you don’t understand the answers. Ask how to spell the terminology your healthcare team uses. Write down your questions before you visit the doctor, so you don’t forget to ask them. Write down the answers if you feel you need to. Bring a trusted advocate with you to every appointment.  Let your healthcare team know when you’re uncomfortable with decisions being made. Ask them to slow down and let you catch your breath. When you are stressed out, it is hard to concentrate or recall conversations, especially if you are in a patient gown! You may also not ask the important questions.

For all of the above reasons, make sure you bring a trusted advocate with you to each cancer-related appointment. Your advocate will help remind you of the discussion and ask the questions that need to be asked. It is helpful to have the same advocate with you for each appointment, so they will be familiar with your illness and the prescribed treatment. Become Internet-savvy and research the community blogs that are out there for your specific type of cancer. There are folks out there in cyberspace sharing their own stories, their triumphs, their losses, and information and treatments that have helped them. Don’t be afraid to share the stories and info you obtain with your own healthcare team. Some patients find that too much information from too many sources actually increases their anxiety. If you are one of those people, that’s fine. Avoid the overload of too much information. Just to be clear, seeking out information online and from the relevant resources listed below can be very empowering and can give you a voice in all decision-making.

Seek out a second opinion if you feel compelled to do so. Patients do this all the time and it will not jeopardize your relationship with the primary doctor. Most insurance companies will gladly pay for a second opinion. You will feel more in control of the situation if you get the second opinion and it will also give you a sense of security assuming that both doctors agree on the diagnosis and treatment modality. You can become confused if you get two different opinions from two (or more) different doctors.  At that point, you may want to do some research on your own to determine the best course of action to take. While you may be compelled to crisscross the globe going from doctor to doctor for a cure, this is not to your advantage. Most times, those cures don’t exist. In addition, the search will be too exhausting, too expensive and too emotionally draining. At some point, you will have to put your trust in one doctor. Make sure that doctor has a passion for your life.

Be sure to let loved ones and friends support you in this journey. They can help you physically, emotionally and spiritually. Do not shut them out. You will need them now more than ever. Don’t be ashamed to ask for help. Tell people what you need and how they can help you. Don’t refuse help when someone reaches out to you —if you keep refusing, they may stop offering. You cannot do this on your own. Just like it takes a village to raise a child, it takes a village to overcome the challenges associated with a cancer diagnosis. 

You want to keep your support group informed of your status at all times. People can’t help you or pray for you if they don’t know what is going on. Create a free interactive journal at www.CaringBridge.com to keep those who care about you informed about your journey. The personal prayers and inspirational messages supporters send you will raise your spirits each day.  Do be aware that you get none of the monies donated to the CaringBridge organization in your honor.  If the financial aspect of your illness is creating economic challenges for you, have a trusted family member or friend create a GoFundMe.com page for you instead of the CaringBridge page.  It’s an alternative vehicle for keeping in touch with family and friend supporters, and they, in turn, can send you messages and prayers and donations. The people that care about you do not want you to have to declare bankruptcy because of your illness. Unlike the CaringBridge, you will receive all monies donated in your honor on to your GoFundMe page, less the cost of a small administrative fee.  

Be sure to seek out professional counseling for yourself and/or family if any of you are having a hard time coping with the diagnosis, the treatment or the fears associated with such a diagnosis. Don’t be hesitant to discuss this need with your healthcare team. There are resources in your community to help you and your family cope.  Ask any counseling agency you connect with if they take your health insurance for such purpose or if not, ask if they offer sliding scale payments to help you keep control of your out of-pocket medical expenses.  Encourage immediate family members who are directly impacted by your disease, particularly your care partner, to seek out their own support groups. While others may support you all in your journey, there’s no better support than from those who are walking in your shoes. You are not in this alone, nor should you feel like you are facing this alone.

There are many places where cancer patients can go for information, resources and assistance. Some of these include:

    1.     The American Cancer Society at 1-800-227-2345. www.cancer.org

    2.     Cancer Care @ 1-800 -813-HOPE (4673). www.cancercare.org

    3.     Cancer Spiritual Support. www.mystronghold.org

    4.     Cancer Information Service @ 1-800-4-CANCER (226237)

    5.     Advanced Cancer Treatment @ 1-888-447-7357. www.issels.com

    6.     www.cancercenter.com

    7.     www.CaringBridge.org

    8.     St Jude’s Hospital for childhood cancers.   www.stjude.org

    9.     www.cleaningforareason.org   house cleaning for mothers getting chemotherapy

    10.   www.voicesagainstbraincancer.org

    11.   www.cancer.net

    12.  www.stupidcancer.org

    13. I Can Cope classes, American Cancer Society @ 1-800-227-2345. www.cancer.org

    14. Ovarian Cancer Research Fund. www.ocrf.org

    15. What Next? American Cancer Society @ 1-800-227-2345. www.whatnext.com 

    16. www.Livestrong.org

    17. American Childhood Cancer Organization @ 1-855-858-2226.

   18. www.acco.org and www.chemocare.com for info about chemotherapy 

   19. www.PatientPower.info for support of those with blood-related cancers

   20. www.PatientAction.com for patient empowerment and advocacy resources 

   21. READY…SET…ADVOCATE! Your Step by Step Guide to

            Patient Empowerment available online at www.ReadySetAdvocate.com, www.BarnesandNoble.com or www.amazon.com

 

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www.patientaction.com Copyright 2016 Patient Action Patient Advocacy Portal. Healthy World, LLC. All Rights Reserved.


Lorrie Klemons, RN, MSN, Patient Action
Patient Advocate/Coach/Consultant/Educator/Speaker/Author

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.