So, you heard the dreaded “C” word. Your life went from being full of goals and a prosperous future to resembling a black slate. No matter how old you are, the dreaded C word gives the same devastating gut punch. I feel for you, I understand you, and I also received the devastating news. This path may feel like a never-ending chase, but hopefully we will always be one step ahead of this monstrous beast. We cannot predict our future, but we can position ourselves to have the best chance to keep the beast at bay – with a dream team!

I did a very informal survey of long-term patients (5+ years), asking, “What is something you should have done when you were first diagnosed?”.

The overwhelming response was to do extensive research in the early part of their Cancer journey.

Some of the other answers were these:

“Biomarker testing is one of the first things you need to have done.”

“Sign up with a counselor.”

“.. go to an NCI designated cancer center and see a thoracic oncologist before any treatment, preferably an ALK specialist.”

“I wish I had trusted my own instinct and not rushed into a treatment that I wasn’t totally on board with.”

“I would not have quit my job so early on. I quit because I was given 2 years to live, but I’m coming up on 8 years of thriving.”

Let’s have a look, one step at a time, at the different pieces of the puzzle.

First, your oncologist is like your central hub for all information. This person is very critical, because he or she advises you on the current treatment plan and makes sure you are being monitored properly. This oncologist can be a general oncologist who treats all cancers. He/she can also be a specialist for thoracic oncology, someone who specializes in tumors that are found inside the chest. Or this oncologist can be a thoracic oncologist who is more specialized in tumors associated with genetic mutations such as ALK, EGFR, KRAS, and others. Furthermore, there are a few thoracic oncologists who are genetic specialists and who focus on ALK mutations specifically. Most likely, geographic limitations will determine who your primary oncologist can be. If you live near a major urban city like New York City, your choices are more abundant.

You may choose to drive a few hours to see a particular oncologist, or to a designated NCI (National Cancer Institute hospital determined by the National Cancer Act of 1971) in the US https://www.cancer.gov/research/infrastructure/cancer-centers.

On the ALK Positive Facebook group site, there is a list of oncologists who our members recommended. They are on the list only because our members know they have some knowledge of the ALK cancer. If you are an international patient, there is also informal member information to help you find the right oncologist. No matter who you chose or who is assigned to treat you, you need to be able to talk to the oncologists and make sure they understand your ideas. You also need to be able to understand their reasoning for your treatment plan.

You need to be your own advocate for your own treatment.

If you are unable to understand what the doctor is telling you, please bring a notebook and have the doctor or the nurse write down what they are planning to do. Since Covid, there may be limitations on who can be present at the doctor’s office, making it harder for patients to have a family member present. Plan your questions ahead of time, so you don’t forget while you are in the doctor’s office.

Most likely, you will also have a pulmonologist, a doctor who specializes in lung disease. You might have a biopsy under the guidance of the pulmonologist. They might order a breathing assessment and help you with any breathing problems you may have.

Depending on the stage of your cancer, you might be referred to a thoracic surgeon who can operate on your chest cavity for a lung surgery.

Again, depending on your situation, you might have a radiation oncologist who can treat your disease with radiation therapy.

In some instances, you might encounter a neural-radiation oncologist, a specialized doctor who is focused on radiation therapy on the brain or nervous system.

At times, a cardiologist will be called upon to monitor you because of a side effect from your treatment. For example, Lorlatinib may cause some higher-than-normal cholesterol or triglyceride levels that may affect your heart health.

If you have aches and pains that bother you, you may want a palliative care team on your side. They are special doctors and nurses who are specialized in good pain management during your journey. You may be referred to them by your oncologist.

As with any difficult health issue, we are bombarded with stress and anxiety. You may want to have a good mental health practitioner on your side. A psychiatrist is a doctor who can prescribe medication for you. A psychologist or a counselor (therapist) can help you overcome your emotional issues by talking and exploring various mental or physical activities.

You may want to find a social worker who can help you navigate the intricacies of retirement benefits and health care plans that best suit you after diagnosis. They may help point you to local resources for cancer support.

If you are unhappy with the weight you may have gained while on a TKI, you can find a registered dietitian to help guide you. Usually, you can be referred to a dietitian by your oncologist or your social worker.

A good pharmacist can help you order the right medications to be regular, all the time! On our website, there have been discussions of which pharmacy is best suited for our specialized medicine. Ask!..

Don’t be afraid to ask your team for help. They are here to help us get better, faster.

https://www.webmd.com/lung-cancer/guide/lung-cancer-treatment-team

MY ONCOLOGY TEAM CHECK LIST

Questions to ask your oncologist

• What do I have? What stage is that? What does it mean?

• Did you send my biopsy for genetic testing? What markers will I get tested for?

• Is my biopsy being tested via FISH, IHC, or Next-generation sequencing (NGS)? Which company is doing it? How soon will my result be back?

• Can I have a copy of my results?

• Do you have an after-hours contact? Is there a special oncology nurse telephone number that I can call in case of emergency?

• What do you see as my treatment plan? If the initial treatment does not help, what’s my next plan?

• What do I do before my biopsy results come back?

• Do you have referrals for _________________ or ______________?

• Will I be monitored via CT scan? PET scan? How often?

• Will I get a brain MRI? If not, why not? If yes, how frequent?

• I feel pain ________________ . What can I take for it? Is there local treatment for that?

• Which medications can I take with my treatment medication? I am currently taking __________, _____________ and ______________.

• Which supplements would you recommend me to begin?

• What about vitamin D supplements? Calcium? Vitamin C injections?

Author: Alice Chou

ALK-positive Best Care 101