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About this blog

A communication passport is a way of supporting a vulnerable person with communication difficulties when they have to transition through different events, such as changing schools, or their first job.

  • Patient Name: Ryan
  • Cancer Type: NK/T-cell Lymphoma
  • Age when diagnosed: 14

Questions to ask after Cancer diagnosis

16th May 2018

Cancer sucks

I have shared with you Ryan’s lymphoma journey we talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I’ve never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer.

Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you won’t even think of the questions necessarily or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead.

General Information

  • What type of cancer do I have?
  • Where is it located?
  • What are the risk factors for this disease?
  • Is this type of cancer caused by genetic factors? Are other members of my family at risk?
  • What lifestyle changes—such as diet, exercise, and rest—should I make to be healthy before, during, and after treatment?
  • Where can I find more information about this type of cancer?

Symptoms

  • What are some common symptoms of this type of cancer?
  • How can I prevent or manage them?
  • What are the treatment options for my symptoms?
  • Will certain activities make my symptoms worse?
  • What should I do if I notice new symptoms or if existing symptoms worsen?

Diagnosis

  • What diagnostic tests or procedures will I need? How often?
  • Where will I go to have the tests or procedures?
  • How can I prepare for them?
  • What will we learn from the tests or procedures?
  • When will I get the results, and how will I receive them?
  • What does my pathology report tell us about the cancer?
  • Will I need to repeat any tests or procedures if I seek a second opinion?
  • How and when should I communicate with loved ones about my diagnosis?

Staging

  • What is the stage of the cancer? What does this mean?
  • Has cancer spread to my lymph nodes or any other parts of my body?
  • How is staging used to help decide the best type of cancer treatment?
  • What is my chance of recovery?

Treatment

  • What are my treatment options?
  • Which treatments, or combination of treatments, do you recommend? Why?
  • What is the goal of the treatment? Is it to eliminate the cancer, help me feel better, or both?
  • What clinical trials are available for me? Where are they located? How do I find out more about them?
  • Who will be part of my cancer care team? What does each person do?
  • How much experience do you or other members of the cancer care team have treating this type of cancer?
  • Will I need to stay in the hospital for treatment? Or will this treatment happen in an outpatient clinic?
  • What is the expected timeline for my treatment? Do I need it immediately?
  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
  • What are the short- and long-term side effects of this treatment?
  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?
  • How will you treat side effects that I experience during treatment?
  • How can I keep myself as healthy as possible during treatment?

Clinical Trials

  • What are clinical trials?
  • How do clinical trials help people with cancer?
  • What happens during a clinical trial?
  • What are the benefits and risks of participating in a clinical trial?
  • How will I be cared for during the clinical trial?
  • What are my responsibilities during the clinical trial?
  • Are there any costs associated with my participation in a clinical trial?
  • Where can I learn more about clinical trials?

Support

  • What support services are available to me? To my family?
  • May I contact you or the nurse if I have other questions?
  • Whom should I call with questions or concerns during non-business hours?
  • Can you recommend a social worker to help locate support services?
  • Where can I find resources for children? For teenagers? For young adults? For older adults?
  • If I’m worried about managing the costs of cancer care, who can help me?
  • Who handles health insurance concerns in your office?

Follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?
  • What long-term side effects or late effects are possible based on the cancer treatment I received?
  • What follow-up tests will I need? How often will I need them?
  • How do I get a treatment summary and survivorship care plan to keep in my personal records?
  • Who will be leading my follow-up care?
  • What survivorship support services are available to me? To my family?

Mind Blowing

These are a lot of question, I know. Many of them will be answered as part of your consultation with your consultant(s). I would suggest however you print these off and have them with you for several appointments as you will need to go over information as you have a chance to process all the new jargon and guidance you are being given. I have listed on a separate page at the top some specific questions I asked about Ryan’s particular type of Cancer. They are quite in depth so may well not be appropriate to your situation, but they are there for you to look at of so wish to do so and you can reword them to suit if the above questions do not answer all of your queries.

This article was reproduced by with permission from author, [Sarah] and was originally published at: bellybuttonpanda.co.uk
16.05.18