Understanding the BC Cancer Agency & Affiliate Programs
There is likely no other diagnosis that instills such fear of the unknown and abject anxiety than hearing the words, “You have cancer.” For most people, the conversation essentially stops there: The doctor keeps talking, and the rest is a blur.
No cancer is the same. There are multiple subtypes within each type of cancer. Some are easily treated, and others are not. Some spread quickly, while others move slowly. Some will have stayed in place while others have spread beyond their boundaries and, possibly, to other organs. Treatment for some cancers is immediate, while others will be controlled for many years.
An empowered patient is informed and supported. Seek information and support. The same holds true for loved ones and care partners.
Understand your values, beliefs, and preferences for future care. Assertive and ongoing communication with your healthcare team and loved ones throughout your journey is essential.
Your healthcare teams are waiting for you to bring up sensitive topics such as prognosis, symptom and pain control, suspending or withdrawing treatment, and end-of-life discussions.
Build Your Team
For all appointments — especially the initial intake — and wherever possible, have someone (hopefully a person who is calm, cool, and logical) with the patient to take notes, ask questions, and write a summary of what was said.
If you are attending your first appointment alone, ask if you can record the conversations, take short notes (and fill in the blanks as quickly as possible after your appointment). Attempt to stay in logic mode. See, The Power of the Notebook.
Prepare for Your Initial Appointment
In your initial appointment, you will likely talk to two or three nurses, possibly a resident, and at least one oncologist. The appointment will take at least two hours.
The doctors will likely speak quickly in words you have never heard before. Some oncologists are more compassionate than others. Say something if you don’t understand something (you will likely not understand a lot of information). “I didn’t understand that. Would you repeat that, please?” Often, you will need the information repeated at least three times. Don’t feel stupid for not understanding; be assertive about asking for the information as often as needed.
Therapies and Treatments
Every person with cancer wants to be seen and treated immediately, and waiting is torture. Unfortunately, the labour shortage has hit the cancer system as hard as everywhere else.
Referrals to the BC Cancer Agency are triaged based on the type and progression of the cancer the patient has or is suspected of having. For instance, a brain tumour or ovarian tumours are seen as an emergency but a small, contained breast tumour or prostate tumour might be able to wait. That doesn’t mean that you should just sit back and wait for the phone to ring … follow up, and then follow up again.
If it is a cancerous (malignant) tumour (as opposed to systemic cancer such as leukemia), the oncologist and surgeon will decide if it is best to have surgery first or if a course of radiation or systemic therapy is advised to shrink the tumour first. This decision is highly specific to the kind of cancer and if it has spread.
The patient may be given or offered several types of treatment, and the order of the treatments will vary, depending on the cancer. BC Cancer and the Canadian Cancer Foundation have very thorough resources and information for all treatments that they use and recommend.
Surgery
You may have emergent or urgent surgery prior to being seen by oncologists at BC Cancer (or an affiliated program). Most surgeons work closely with the BC Cancer Agency. The surgeon might recommend a period of healing for the surgical site before cancer therapies begin, and they might recommend what types of cancer therapies would be best for the type of cancer.
Ask the surgeon or their medical office assistant if the referral has been sent to the BC Cancer Agency (or affiliated cancer program) and when you should hear from them.
If you have not heard anything when expected, phone your surgeon’s office back and ask them to check, or call your local BC Cancer Agency (or affiliate program) directly and ask for the department that handles patient referrals and intake to find out where you are on the list.
Systemic therapy
Systemic therapy is provided by medical oncologists. It is any medication or treatment that travels through the body via the bloodstream to target and destroy cancer cells. It includes oral, injectable, and intravenous (IV) therapies that are in the form of chemotherapy, immunotherapy, or targeted therapies.
Radiation therapy
Radiation therapy is provided by radiology oncologists (affectionately known as RadOncs). Radiation therapy is literally laser-focused on tumours or the area where the tumour was located (prior to surgery.) It can be used to eliminate or shrink the tumour(s), to “mop up” any cancer cells that might have remained behind after surgery, or as palliative radiation to relieve pain and symptoms from tumours that cannot be surgically removed.
Cancer Patient Folder
During the first appointment, patients should be given a folder with very important phone numbers and information about their team and treatment. Keep it and read it right away (this is not to sit unread on your bedside table) and put the important numbers in your phone — you will need them. Refer to this folder frequently and add new information to it.
Inside the front flap, you will see your BC Cancer ID number. Record this and keep it in your wallet and on your cell phone.
One of the most important phone numbers is for the 24-hour nursing line. Call as early in the day as possible so that your oncologist can be notified to answer your concerns. After 5:00 p.m. and until 9:00 a.m. (and on weekends), if you are not feeling well or have urgent questions, don’t hesitate to call. Listen to the prompts. You will likely get a voicemail. Calmly and clearly state your name, ID number, and the reason for the call. State the urgency of your call. If your call is urgent or emergent and you have not heard back within an hour, call again.
Don’t hesitate to go to your local emergency room. Let them know that you are a cancer patient and give them your BC Cancer ID number and the name of your lead oncologist (and their local number if you have it). If you are receiving systemic therapy, let the triage nurse know and ask that you be given an isolation room as quickly as possible.
Pain and Symptom Management
No matter where you are in your cancer journey — and whether your cancer is expected to be cured or is life-threatening — if you are having symptoms and pain that your oncologist is having difficulty getting under control, ask to be referred to the Pain and Symptom team.
This used to be called “palliative services,” which means the same thing, but the words have a terrible, deadly connotation with the public and the healthcare community. As a result, patients are often referred only after prolonged suffering. Ask for this service sooner rather than later.
Research Your Disease and Treatments
You may want to do your research. Use reputable sources. Many research articles are just abstracts on the internet. Consider contacting the UBC Medical Library, which will have full access to the articles you are interested in reading. You will likely see words you’ve never heard, and you will want to have a medical dictionary at hand. Several are available at local bookstores and on the internet: search for “layperson’s medical dictionary.”
Sources and Resources:
Inspire Health: Supportive Cancer Care
Paul Sugar Palliative Support Foundation – North and West Vancouver
