Cancer Sucks
I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have 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 will not think of the questions you need to ask 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 questions I know. Many of them will be answered as part of your consultation with your consultant and medical team. 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.
Take someone with you to the meetings as you will not be able to process all the information yourself. Take notes and keep a diary/journal as it is a long and bumpy road trip ahead.
We can relate to all of these observations. Josie sat in shock - speechless, I was the one refusing to believe and "Are You Sure" / "Where do we get a second opinion" / "Have you investigated every alternative treatment" etc., etc., etc., flooded out I even lost my temper and demanded that someone do something - any thing - and now / immediately!!!!! You want to hit out blindly - why us - we did nothing wrong - its the wrong diagnosis - there must be something that can avoid radical surgery!!!! Then depression, worry, frantic reading up, what can I DO? Is this another medical blunder? The feeling that the life that was so buoyant has come crashing down.
ReplyDeleteAll I can say, three years on, is that you do find that there is light at the end of the tunnel. The human psyche is resilient and medical services are fantastic these days.
You will pull through and look on this as just a blip on the "joys?" of being a parent.
Love to all four of you - Yes, all four, the family are ALL under unbearable strain.
You are our children and we would strip the burden off you, in an instant - if we only could!
I absolutely agree with the desire to strip my child of the burden. I think that the single hardest thing as a parent, handing over your child's life to the hands and minds of strangers. Not being in control. Not being able to help, to make it all better.
DeleteThanks for sharing the questions one need to ask after cancer diagnosis. Click here cancer care for more information!
ReplyDeleteThanks for the Link Chris.
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