Your Guide to the Durham Regional Cancer Centre

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Your

to

Durham Regional Cancer Centre

It is stressful to find out you have cancer. You may have a lot of questions and concerns. You may be unsure what to expect or what to do next. Your first visit to the Durham Regional Cancer Centre (DRCC) can also make you feel this way. This booklet offers information on the care and support available to you at the cancer centre. The cancer centre partners with many organizations to give you care closer to your home. You may have tests, treatments or appointments in the community you live in. Ask a member of your healthcare team about this.

Your appointments at the cancer centre

The cancer centre is part of Lakeridge Health Oshawa. It is located in the C Wing on the main and B1 levels. It can be confusing to get to the right place in the hospital. We have maps and volunteers to help you find where you need to be for your appointments. You will come to the cancer centre for your pre-treatment and treatment appointments. Use hand sanitizer and follow the masking guidelines for Lakeridge Health. You will be asked to complete a Communicable Disease (screening for cold or flu-like symptoms) Questionnaire as part of check in for your appointments.

You may be tested for COVID-19 before starting a cancer treatment. This helps your healthcare team safely give the care and treatment you need. Your healthcare team will tell you if this applies to you. You may also be tested if you develop a COVID-19 symptom(s) during your cancer treatment. If you arrive at the cancer centre with symptoms that may be from COVID-19, a member of the healthcare team will assess you. They will wear personal protective equipment like gloves, gown, eye protection and a mask. After assessing you, they will contact your doctor or nurse practitioner to plan for the next steps in your care. Your appointment times may change. Some of your appointments may be planned as a video or telephone appointment. This is planned if it is the right option for your care and treatment.

Changing, confirming or cancelling your appointments

Call us as soon as possible if you need to cancel or change an appointment, See page 5 for information on who to call.

A nurse will call you if you are cancelling an appointment because you feel unwell. This helps us decide if you need an appointment with a member of your healthcare team or your treatment needs to be delayed.

Your healthcare team at the cancer centre

You are the most important member of your health care team. We encourage you and your family member/partner-in-care to be involved in your care. Your family doctor is also a member of your healthcare team. Schedule regular appointments with your family doctor.

You can call members of your healthcare team at the cancer centre between the hours of 8:30 am and 4 pm from Monday to Friday. The cancer centre is closed on weekends and holidays.

Go to the Emergency Department at the hospital closest to you for a medical emergency. See information on After Hours Symptom Management Support on page 7.

We are committed to keeping your personal health information safe. Your health information is confidential and used only by those who give you care.

NAME PHONE NUMBER

Cancer centre main floor reception

Your surgeon _________________________________

Your nurse practitioner _________________________

Your medical oncologist

Your primary nurse _____________________________

Changing, confirming or cancelling your systemic therapy treatment appointments

905-576-8711 extension 33282

Your radiation oncologist ________________________

Your primary nurse _____________________________

Your radiation therapy treatment team (radiation therapists):

905-576-8711 extension

Team clerk: 905-576-8711 extension

Primary nurse: 905-576-8711

extension

On the day of your appointment:

* Call the Systemic Therapy Suite at 905-576-8711 extension 34030.

* Call your primary nurse at the cancer centre from Monday to Friday, 8:30 am to 4 pm, (except on holidays). Use the phone number your primary nurse gave you.

To cancel an upcoming (or future) appointment

* If you are cancelling because of an illness - call your primary nurse at the cancer centre from Monday to Friday, 8:30 am to 4 pm, (except on holidays). Use the phone number your primary nurse gave you.

* If you are cancelling for other reasons –call the scheduling team at 905-576-8711 extension 34242

Team clerk: 905-576-8711 extension

Primary nurse: 905-576-8711 extension

905-576-8711 extension 33856

Changing, confirming or cancelling your radiation treatment appointment

After Hours Symptom Management Support

905-576-8711 extension 33856 (B1 level reception).

1-877-681-3057 (From 5 pm to 8:30 am, Monday to Friday and on weekends and holidays at any time of the day or night).

Your social worker

Your dietitian

Your speech language pathologist

Your family doctor or nurse practitioner

Other members of your healthcare team

905-576-8711 extension

905-576-8711 extension

905-576-8711 extension

After-Hours Symptom Management Support

The Durham Regional Cancer Centre partners with CareChart Digital Health to offer you afterhours symptom management support. CareChart Digital Health can help you manage your cancer related symptoms at home when the cancer centre is closed. This may help prevent you from going to the Emergency Department. Call 911 or go to the Emergency Department at the hospital closest to you for a medical emergency.

When to contact CareChart Digital Health for a cancer related symptom

Contact CareChart Digital Health from Monday to Friday, 5 pm to 8:30 am and anytime on weekends and holidays for symptom management support.

You can talk to a nurse using one of these options:

• Calling the after-hours telephone line at 1-877-681-3057.

• Requesting a video call by going to carechart.ca.

• Using the CareChart Digital Health App. This App is available to download for iOS or Android devices.

You will be asked for this information:

• Your name, address and phone number

• The name of your emergency contact and phone number

• Your Health Card number

Benefits of using the CareChart Digital Health App

1. You can prepare in advance of talking to a nurse by:

• Creating an account with CareChart Digital Health.

• Completing a symptom assessment before you talk to the nurse.

2. The nurse may share information with you through the App on how to manage your symptom(s).

Will my healthcare team at the cancer centre know I contacted CareChart Digital Health?

The CareChart nurse sends an update to your healthcare team at the cancer centre. This update is seen by your healthcare team during the hours the cancer centre is open.

When to call your primary nurse at the cancer centre

Call your primary nurse at the cancer centre from Monday to Friday, 8:30 am to 4 pm, (except on holidays). Use the phone number your primary nurse gave you.

Call for:

• Symptom management support

• Any other question or concern about your cancer care or treatment

What to bring with you to appointments

• Your Ontario Health Insurance card (health card). You need your health card to check-in for your appointments in the cancer centre.

• A list of the medications you are taking or your medication bottles/containers. We need to know the name of the medication, the dose, and how often you are taking it. This includes medications you do not have a prescription for (examples: antioxidants, Tylenol, Aspirin and vitamins). We need to update the medication list in your health record at most of your appointments. You can update your list of medications in your MyChart account.

• A supply of the medications you need to take during the time you are in the cancer centre.

• If you are a diabetic, bring your glucometer and supplies with you (this may include snacks).

• Eyeglasses and hearing aids if you use them.

• If you are on oxygen, be sure you have enough oxygen to last for 6 to 8 hours.

Checking in for your appointments at the cancer centre

Plan to come 15 minutes before the scheduled time of your appointments. This allows you time to find parking and check in at a computer.

When you arrive, go to one of the cancer centre computers to check in for your appointment. You need to do this even if you completed echeck-in on MyChart (see page 13). This lets your healthcare team know you are in the cancer centre. After you scan the bar code on the back of your health card, the Communicable Disease questionnaire will appear on the computer screen asking you about travel and cold/flu-like symptoms. If you did not complete the Your Symptoms Matter questionnaire as part of eCheck-in, it will appear on the computer for you to complete. See page 18 for information on how to complete the Your Symptoms Matter questionnaire. If you have appointments on both the main and B1 levels, you need to check in at a computer on both levels.

You will be given the information you need if you are scheduled for a telephone or video appointment.

At every appointment, we confirm your identification by asking for your date of birth. For some appointments, we will give you an armband to wear. We review your allergies and overall health for any changes.

Your family member/partner-in-care

The role of family member/partner-in-care is decided by you and can be changed at any time.

Your family member/partner-in-care may:

• Participate in your care and the planning of your care

• Give you support physically and/or emotionally

• Help you write down questions to ask your healthcare team

• Help you write down information to tell your healthcare team

Your permission is needed before any healthcare information is given to your family member/ partner-in-care. The role of family member/partner-in-care is different from the role of your Substitute Decision Maker(s). Talk to a member of your healthcare team if you have any questions about this.

Keeping you safe during your appointments

Wash your hands often for at least 15 seconds or use hand sanitizer to protect yourself. Follow the masking guidelines for Lakeridge Health.

We are a scent free hospital. Do not wear any perfume or scent when you come to the cancer centre or the hospital.

Smoking or vaping is not allowed on the hospital property.

Transportation to the cancer centre

The following provides you with information on transportation programs and services.

1. Ask a family member/partner-in-care to drive you to the cancer centre.

2. Canadian Cancer Society Wheels of Hope Program

The Canadian Cancer Society’s Wheels of Hope Program offers rides to cancer treatment appointments only. For more information, call 1-888-939-3333. There is an annual registration fee.

To be eligible for this program, you need to:

• Have no other options for a ride to your treatment appointments.

• Have your healthcare team at the cancer centre complete the referral form.

• Provide 3 business days advance notice to book a ride.

• Have no cold, flu or COVID-19 symptoms.

You are encouraged to:

• Use hand sanitizer before and after the ride to your appointment.

• Wear a medical grade mask during the ride to your appointment.

If you need help getting in and out of the vehicle, you must arrange to have a family member or friend (18 years of age or older) travel with you in the vehicle. Drivers are not allowed to lift you in and out of the vehicle.

It is important to have a back up plan for your transportation to the cancer centre as these rides are not guaranteed. This may be due to the lack of drivers in your area. Uber drivers may support the Wheels of Hope transportation program in the greater Toronto area (GTA).

If you receive government assistance (for example: ODSP and OW), you can qualify for the Wheels of Hope program. The Canadian Cancer Society’s (CCS) Travel Treatment Fund may be able to offer support for some of your travel costs. A financial assessment is required for this program. This can be applied for once a year while you are having cancer treatment. Call: 1-800-263-6750 or email transportation@cancer.ca.

3. Community Care

Community Care volunteers are available to drive you to your medical appointments. You need to call and register with the Community Care office closest to your home. There is a fee for this service.

For more information or to register:

• Community Care Durham: 1-888-255-6680

• Community Care Peterborough: 705-742-7067

• Community Care Kawartha Lakes: 1-800-461-0327

• Community Care Northumberland: 1-866-514-5774

In Scarborough this program does not provide rides to Oshawa.

4. Durham Region Transit (DRT) and DRT Specialized Services

Durham Region Transit (DRT) has bus service available in the municipalities of Pickering, Ajax, Whitby, Oshawa, Clarington, Scugog, Brock, and Uxbridge. There is a fee for this service.

DRT Specialized Services has accessible door-to-door transit service for residents of the Durham Region who are temporarily or permanently disabled, and not able to ride on a regular bus or walk 175 metres. To qualify, you must meet certain criteria and complete an application form. Part of your application needs to be filled out by your doctor.

For more information, go to the Durham Region Transit website: www.durhamregiontransit.com or call 1-866-247-0055.

5. GO Transit

GO Transit is a regional public transit service for the Greater Toronto Area and surrounding regions. There is a fee for this service.

Website: www.gotransit.com

On this website, you can plan how to get to the cancer centre based on the time of your appointment. This includes:

• When you need to leave for your appointment.

• The route you will take.

• The cost for the trip.

6. Other organizations that offer a fee for service ride to your appointments

To find other transportation options in the area you live, go to the Canadian Cancer Society’s Community Services Locator found at: csl.cancer.ca

7. Ontario Works (OW) or Ontario Disability Support Program (ODSP)

This program offers some funding for transportation to medical appointments. Funds are for pre-existing clients only. Call your Ontario Works social worker to register for the program.

If you have any questions or concerns about your transportation needs, call to talk to a social worker at the cancer centre at 905-576-8711 / 1-866-338-1778 at extension 33282.

Parking

Parking is available:

• On the north side of the hospital on Hospital Court

• On the south side of the hospital at the end of Parkwood Court

Bring the ticket you get when you enter the parking garage with you into the hospital. You need it to pay a fee before you leave the parking garage. Payment can only be made by credit or debit card. Pay stations are located in the main lobby of the hospital and in the parking garages. If you are coming to the cancer centre for regular appointments, buying a 1, 5, 10, or 30 day exit pass will save you money on the daily parking rate.

Call the Parking Office at 905-576-8711 / 1-866-338-1778 at extension 33707 for more information. The Parking Office is located in the north parking garage.

If you are unable to walk from the parking garage, your driver can drop you off at the front of the cancer centre on Parkwood Court (south side of the hospital).

You may be able to claim your parking and transportation costs as medical expenses on your taxes.

Volunteers

We have volunteers who greet you when you come into the hospital. Volunteers can offer directions to the location of your appointment.

Having your bloodwork done

You may be scheduled to have bloodwork done before some appointments with your oncologist or nurse practitioner. Time is needed to test your blood before results appear in your health record. This is why there is a wait time between your appointments for bloodwork and with your oncologist or nurse practitioner. Your oncologist or nurse practitioner reviews your bloodwork results before they see you. This information helps them plan your care and treatment.

We may ask you to have your bloodwork done at a community lab. We will give you the information you need about this if it applies to you.

Tests you may need to have done

Your oncologist or nurse practitioner may order 1 or more of the following tests for you. These tests may be done at Lakeridge Health Oshawa or at a hospital or clinic near your home. Arrive 15 minutes before any scheduled appointment at Lakeridge Health. Your oncologist may order other tests not listed here.

Area Description

Angiography or Interventional Radiology

X-rays, ultrasound and/or CT can be used for special procedures ordered by your oncologist. They include:

• Putting in a central line (PICC or PORT)

• Doing a biopsy

Bone scan

A bone scan uses bone-seeking radioactive materials or tracers and a computer to create a picture of the skeleton (bones).

CT Computed Tomography (CT) or “CAT” scan uses x-rays to take more detailed pictures of the organs and bones.

General X-ray

An x-ray takes pictures of the body. Most often used for bones and lungs.

Mammogram X-rays are used to take pictures of the breast.

MRI Magnetic Resonance Imaging (MRI) is the use of electromagnetic waves to take pictures. Most often used for taking pictures of the brain, spine, abdomen, pelvis and muscles/bones.

Ultrasound

Patient education

Ultrasound uses sound waves to take pictures. A hand-held probe (called a transducer) is used to take pictures of your organs.

We offer you information before, during and after your cancer treatments. This includes sending information to your MyChart account. More information about your care and treatment can be found on the Cancer Care pages of the Lakeridge Health website at: lakeridgehealth.on.ca/en/ourservices/cancercare.asp

Talk to a member of your healthcare team if you have questions or do not understand any information we give you.

What You Need to Know About MyChart Central East Ontario

MyChart allows you to:

• View and print a list of your future and past appointments (view under ‘visits’)

• View and print your bloodwork results

• View and print your diagnostic imaging results (examples: x-rays, CT scans, MRIs)

• View and print consult and other notes written by your healthcare team

• Update, view and print a list of your medications

Bloodwork results, test results, and consult notes written by your physician(s) are available back to March 2018. Your healthcare team can see all of your health records.

You can view and print your health records from Lakeridge Health and any one of these partner hospitals:

• Campbellford Memorial Hospital

• Haliburton Highlands Health Services

• Northumberland Hills Hospital

• Peterborough Regional Health Centre

• Ross Memorial Hospital

• Scarborough Health Network

Release of results to MyChart:

1. Pathology/cytology results (examples: tissue and urine samples) are released after 10 days.

2. Diagnostic imaging reports are released after 5 days.

3. Bloodwork results are released as soon as they are available. Not all results outside of the normal range are ‘abnormal’ or need follow up. This includes low (L) or high (H) results.

4. Genetics results are released as soon as they are available.

How to sign up for MyChart:

• A member of your healthcare team can send you an email or text with the link to complete sign up, or

• Sign up at https://mychart.ourepic.ca.

You can download the MyChart app for your Apple or Android device from the App Store or Google Play Store (the app with the red folder/white heart). Select MyChart Central East Ontario.

Viewing your appointments:

We need you to review your appointments on MyChart. You will receive an automated telephone reminder 2 days before your scheduled appointment. You can also receive text reminders. Provide us with your cell phone number and ask us to update your ‘communication preferences’ for MyChart. You can also update this in your MyChart account by clicking the ‘menu’ button and then choosing ‘communication preferences’.

Checking in for your appointments:

We ask you to complete eCheck-in on MyChart within 24 hours of your scheduled appointment. This allows you to complete:

• Your Symptoms Matter or Your Symptoms Matter: Prostate Cancer and,

• Communicable Disease Questionnaire (screening for cold or flu-like symptoms)

You still need to check-in at a computer when you arrive at the cancer centre. This lets your healthcare team know you have arrived for your appointments. Echeck-in reduces the time you need to be at a computer in the cancer centre. Use a computer located on the same level as your appointment to complete check-in.

Sharing your health record on MyChart:

You can share your health record on MyChart with a family member/partner-in-care. Sharing your health record allows your family member/partner-in-care to see all of the health records and information included in MyChart.

Making decisions about your cancer care and treatment

When you have cancer, there are many decisions to make about your care and treatment. Thinking and talking about your wishes, values, and beliefs in advance can make these decisions easier.

Your healthcare team can help you make the best decisions by explaining:

• The type of cancer you have

• Treatment options available to you

• Your overall health

The best care or treatment decision also considers:

• Your goals

• What you value about your health

• Your fears and concerns

• Your overall health

Before any care or treatment begins, you must give informed consent. Informed consent is a decision made by you/your Substitute Decision Maker (SDM) about treatment after your healthcare team has provided you with the following information:

• Your type of cancer and how it might affect your body

• Your care and treatment options including the expected benefits, risks, side effects, and where you will receive treatment

 Understand information about the proposed

• What may happen if you decide not to have treatment

 Appreciate the likely results of saying yes or

• What may happen if your cancer changes or your treatment doesn’t work as expected

Making decisions about your care and treatment can be difficult and it is normal to feel anxious or scared. It often helps to have someone with you such as your SDM, a family member/ caregiver or friend to support you during discussions with your healthcare team. Ask about the option of a telephone call or video conference if this person cannot be physically present for your appointments.

If you are capable of making decisions about your care and treatment, your healthcare team will talk to you directly. Being capable means, you have the mental capacity (ability) to:

• Understand information about the proposed care or treatment options; and

If you are not capable (due to illness, injury, or disability) talk to your Substitute Decision Maker (SDM)to make behalf (for you). YourSDM musttrytomakethecare and wouldhave made guided by your wishes, values, and Everyone in Ontario has an automatic SDM. Your SDM(s) Ontario’s Health Care Consent Act (1996). The family list is your automatic SDM. If youarenot capable of treatmentdecision,your healthcare team musttalkto

• Appreciate the likely results of saying yes or no to the proposed options.

If you are not capable (due to illness, injury, or disability or any other reason) your healthcare team will talk to your SDM to make these decisions on your behalf (for you). Your SDM must try to make the care and treatment decisions you would have made. These decisions should be guided by your wishes, values and beliefs. Your SDM does not make decisions for you when you are still capable.

Everyone in Ontario has an automatic family member SDM. Your SDM is based on a ranked list in Ontario’s Health Care Consent Act (1996). The family member highest on this list is your automatic SDM. If you are unable to make healthcare decisions, your healthcare team must talk to your automatic SDM.

If there is not such a person, or this person is not able, willing, or available to make decisions on your behalf, the healthcare team must ask the next person on the list. This continues until an SDM is identified from this list. If there is more than one person at any level of this list (for example: you have more than one child or sibling), they need to make decisions together.

If you want to choose someone else to be your SDM, you can name a person (or more than one person) to

Court Appointed

Guardian Legally Appointed

SDMs

Attorney for Personal Care

Representative Appointed by Consent and Capacity Board

Parents or Children

Spouse or Partner Automatic Family Member

Parent with Right of Access Only

Siblings

Any other relative

SDMs

Public Guardian & Trustee Court Appointed SDM

Ontario’s Health Care Consent Act, 1996

act as your SDM by legally appointing them as your “Attorney for Personal Care”. You need to do this by completing a document called a “Power of Attorney for Personal Care (POAPC)”.

It is important you tell the healthcare team if you have completed a POAPC. Your healthcare team will contact your Attorney for Personal Care for care and treatment decisions on your behalf if you are not capable.

Your SDM(s) must be:

• 16 years of age or older

• Available in person or by phone or a video call

• Willing to talk with you to understand your wishes, values, beliefs, and care needs

• Willing to carry out your wishes, values, and beliefs even if they are different from their own

• Able to ask questions and talk to your healthcare team

• Able to make difficult healthcare decisions on your behalf that may include:

• Agreeing to tests, treatments, or procedures

• Starting or stopping treatment

• Withdrawing life support

• Being admitted to or discharged from hospital

• Receiving care at home or in the community (for example: a long-term care home or hospice)

The Ontario Power of Attorney Kit can be accessed by visiting the Attorney General of Ontario’s website (publications.gov.on.ca/300975) and search for ‘Power of Attorney Kit’. Call 1-866-2520104 to have a copy mailed to you at no charge. You do not need a lawyer to write your POAPC, but they can help you understand the process and review the document to ensure it is complete. It is important to talk to your SDM(s) about your wishes, values, and beliefs. This will help prepare them to make care or treatment decisions on your behalf if needed in the future. This is called Advance Care Planning (ACP). Consider sharing your wishes, values, and beliefs with your SDM in a video/audiotape or by writing them down. This allows them to review it in the future if needed. For more information about ACP and SDM(s) in Ontario go to advancecareplanningontario.ca.

Talk to a member of your healthcare team if you need support or more information to help you understand your care and treatment.

Preparing for discussions with your healthcare team

1. What do I need to know about my cancer and my overall health? (Example: Has my cancer spread anywhere? How fast is my cancer growing? What can I expect in the future?)

2. What fears or concerns do I have about my cancer and overall health? (Example: Will my cancer come back? Will I have other health issues? I do not know what will happen and that scares me.)

3. What information do I need to make decisions about treatment? (Examples: What is the treatment supposed to do? How will I feel? What will happen if I do not have treatment?)

4. What do I hope treatment will do for me? (Examples: Make my cancer go away, help me to live longer, make my pain better, help me worry less.)

5. What is most important to me? What gives my life meaning? What does a good day look like? (Examples: Time with family and friends, being able to exercise, being able to work, being able to do my hobbies.)

6. What symptoms, side-effects or situations would be hard for me to cope with? (Examples: Losing my hair, not able to have children, not able to do my daily routine, not able to think clearly or make my own decisions.)

7. Am I willing to cope with these symptoms, side effects or situations to achieve what is important to me? (Examples: I would be willing to experience side-effects to be able to attend a special event this summer, I prefer to be comfortable even if it means I would have less time to live.)

8. What gives me strength when I think about the future? (Examples: Having the support of my family and friends, being able to attend a special event, seeing my children or grandchildren grow up.)

The content in this section was adapted from an Ontario Health-Cancer Care Ontario handout.

How to Complete the Your Symptoms Matter

or the Your Symptoms Matter: Prostate Cancer Questionnaire

Complete the Your Symptoms Matter or the Your Symptoms Matter: Prostate Cancer questionnaire before every appointment with a doctor at the cancer centre. Do not complete it more than 24 hours before your appointment.

Complete it:

• As part of eCheck-in on your MyChart account or

• At one of the check-in computers in the cancer centre when you come for your appointment.

Answer the questions based on how you feel at the time you complete the questionnaire. You are also asked to complete a Communicable Disease questionnaire at the time of check in. The Communicable Disease questionnaire asks you about symptoms of a flu, cold, COVID or any other virus. These symptoms are not related to your cancer or cancer treatment.

All male patients

• You are asked if you are being treated for prostate cancer.

• If you answer yes to being treated for prostate cancer, you are asked if you are receiving chemotherapy treatment.

• If you answer no to receiving chemotherapy treatment, you will see the Your Symptoms Matter: Prostate Cancer questionnaire.

• If you answer yes to receiving chemotherapy treatment, you will see the Your Symptoms Matter questionnaire.

What is the Your Symptoms Matter questionnaire?

You are asked to rate 12 common cancer related symptoms on a scale of 0 to 10. “0” means the symptom is not a problem for you and “10” means the symptom is a big problem. These are the symptoms you are asked to rate:

• Pain

• Tiredness (lack of energy)

• Drowsiness (feeling sleepy)

• Nausea

• Appetite (0 means you have a good appetite and 10 means you have no appetite)

• Shortness of breath

• Depression (feeling sad)

• Anxiety (feeling worried)

• Wellbeing (overall how do you feel)

• Sleep

• Constipation

• Diarrhea

You are also asked to rate your activity level in the last month.

What is the Your Symptoms Matter: Prostate Cancer Questionnaire?

You will be asked about the cancer related symptoms you have at the time you complete the questionnaire. The questionnaire has 17 questions. It will take you less than 5 minutes to complete it.

This questionnaire asks about:

• Dribbling of your urine

• Urinating (or peeing) often

• Feelings of ‘burning’ when you urinate

• Bowel movements that cause you pain

• Firmness of your erections

• Hormonal symptoms such as hot flashes or breast tenderness

You are also asked to rate your activity level in the last month. What happens after you complete the Your Symptoms Matter or the Your Symptoms Matter: Prostate Cancer questionnaire

After you complete the questionnaire, your doctor and nurse will:

• Review your symptom scores before they see you

• Understand the symptoms that are a problem for you

• Talk to you about your symptoms and how to manage them

These questions are for you to answer though someone may help you complete the questionnaire. It is how you feel, not how others think you feel.

Talk to your healthcare team about any symptom that is a problem for you!

Your cancer treatment(s)

Systemic Therapy

Systemic therapy is the treatment of cancer using medications. Your systemic therapy treatment may also be called chemotherapy or immunotherapy. You can be given these medications by mouth, injection or intravenous (IV). You may be given more than one medication. The treatment you are given is based on the type of cancer you have. Medications may be given to you at the cancer centre, at a clinic in the community or for you to take at home. Each person is different. Each cancer and treatment plan can also be different. Systemic therapy treatment is given in cycles. A cycle has days of treatment and days of rest. Days of rest let your body build new healthy cells and regain strength.

Before you start your treatment:

1. You will be asked to watch 2 videos. These videos offer information on what you can expect as you start treatment. A link to these videos will be sent to your MyChart account or emailed to you. You can also find these videos at lakeridgehealth.on.ca/en/ourservices/systemic-therapy-patient-education.asp

2. You will be given an appointment with a pharmacist at the cancer centre. The pharmacist will talk to you about the medications you will receive. You will also be given information about side effects and how you can manage them. We encourage you to have a family member/partner-in-care participate in this appointment with you. This allows someone else to hear the information you are given.

You will be scheduled for a pre-treatment appointment to have bloodwork and see your oncologist and nurse. You may not see your oncologist at every pre-treatment appointment. This appointment may be scheduled with a nurse on the same day as your treatment. These appointments will take place in the Systemic Therapy Suite. If you need to have bloodwork done, it will be scheduled the day before your treatment. This gives our Pharmacy time to get your medications ready. Your nurse will talk to you about safety in the Systemic Therapy Suite and at home. You can also watch the ‘Safety at Home When You are on Systemic Therapy’ video found at: lakeridgehealth.on.ca/en/ ourservices/systemic-therapy-patient-education.asp

Every patient having systemic therapy treatment is given this Fever Card.

A fever can be a medical emergency when you are having systemic therapy treatment. Take this card with you if you go to the Emergency Department (ED) with a fever. It is important you show it to the ED nurse and the ED doctor. One side of the card tells you when to go to emergency. The other side of the card helps the ED nurse and ED doctor know how to care for you.

If you are taking an immunotherapy medication, you will be given this Immunotherapy Card.

The side effects you have when taking an immunotherapy medication can be life threatening. Take this card with you if you go to the Emergency Department (ED). It is important you show it to both the ED nurse and the ED doctor. One side of the card tells you when to go to the ED. The other side of the card will help the ED doctor know what care and treatment you need.

How to Manage Your Systemic Therapy Treatment Appointments

We need you to review and confirm each scheduled systemic therapy treatment appointment on MyChart. This includes your appointments for bloodwork, with the nurse and oncologist and for treatment. Talk to a member of your healthcare team if you have concerns about this.

How to review and confirm your appointments

1. Sign in to your MyChart account. See the information on page 12 if you have not already signed up for MyChart.

2. Click on the ‘visits’ button to see a list of your upcoming visits (appointments). Your next appointments for systemic therapy treatment will appear on MyChart no later than 3 days before your next appointment with the oncologist.

3. Click on ‘appointment details’ for each upcoming (or future) visit.

4. Click the green ‘confirm’ button.

This notifies the healthcare team that you know about your appointments.

Changing or cancelling a systemic therapy treatment appointment

On the day of your appointment:

• Call the Systemic Therapy Suite at 905-576-8711 extension 34030.

• Call your primary nurse at the cancer centre from Monday to Friday, 8:30 am to 4 pm, (except on holidays). Use the phone number your primary nurse gave you. You can leave a non-urgent message after-hours and on weekends or holidays.

To cancel an upcoming (or future) appointment

• If you are cancelling because of an illness - call your primary nurse at the cancer centre from Monday to Friday, 8:30 am to 4 pm, (except on holidays). Use the phone number your primary nurse gave you.

• If you are cancelling for other reasons – call the scheduling team at 905-576-8711 extension 34242.

Talk to a member of your healthcare team if you have questions or concerns about this.

When you come for your systemic therapy treatments

We give you a new armband to wear for each of your treatment appointments. We scan your armband and any medication we give you with a hand held scanner. Plan to have someone drive you to and from your first appointment. The treatment medications are new to you and we do not know how they will make you feel. Bring the blue folder and the medication handouts you were given. The nurse will answer any questions you have. It is important you:

3 Arrive 15 minutes before the time of your appointment.

3 Bring a supply of the medications you need to take during the time you are in the Systemic Therapy Suite.

3 Drink 2 to 3 cups (500 to 750 ml) of fluids before you come for your treatment.

3 Bring personal items such as a tablet or phone with headphones, or a book to read to help you pass the time. There are some TVs available.

3 Wear layers of clothing. This allows you to take off or add clothing if needed.

3 Bring snacks or a lunch with you. You may eat or drink in the Systemic Therapy Suite. Your family member or partner-in-care may not eat while they wait with you. They can have a drink.

3 Do not use or wear any product that has a perfume or scent. You may bring one family member/partner-in-care with you. Pregnant women and children under the age of 18 cannot come into the Systemic Therapy Suite. This is for their protection. Let us know if you have any questions about this.

Drink 6 to 8 cups of fluid on the day of treatment and for 2 days after your treatment.

To learn more about your systemic therapy treatment, read the Canadian Cancer Society booklet “Chemotherapy and Other Drug Therapies: A Guide for People with Cancer” found under publications at cancer.ca

Rapid Response Oncology Clinic (RROC)

You may have other appointments scheduled in the RROC to receive treatment medications or procedures that do not need to be given in the Systemic Therapy Suite. The RROC is located on the B1 level of the cancer centre. You need to check in at a computer on this level when you arrive for your RROC appointment. Take a seat in the waiting room after you check-in. We call you from the waiting room when it is time for your appointment. Patients scheduled for radiation treatment appointments also use this waiting room.

Radiation Therapy

Radiation therapy is the treatment of cancer using radiation. Radiation is used to damage cancer cells. This can be done in different ways. Your radiation oncologist will talk with you about your choices for treatment. If you decide to have radiation treatment, your healthcare team will tell you what will happen.

Your radiation therapy team

Your radiation therapy team includes radiation oncologists, radiation therapists, medical physicists, oncology nurses, clerks, physics associates and, service engineers as well as other healthcare professionals.

Before your appointments

Go to the Cancer Care pages of the Lakeridge Health website lakeridgehealth.on.ca/ en/ ourservices/Radiation-Therapy.asp to watch videos about what to expect during your CT simulation and radiation treatment appointments.

Location of your appointments

Radiation Therapy is located on the B1 Level of the cancer centre. Take the elevator or the stairs to the B1 or lower level of the cancer centre. Check in at the B1 reception desk for your first appointment. Our clerical staff will show you how to check in using our check in computers for your remaining appointments.

Your Computed Tomography (CT) simulation appointment

The first step is to plan your radiation treatments. This is done before your treatment starts. You will need to come to the DRCC for a planning appointment (it is called radiation simulation on your list of appointments). During this planning appointment you will have a CT scan. The information on your CT scan is used to plan your radiation treatment. Plan to arrive 15 minutes before your appointment time.

Before you leave your CT Simulation appointment you will be given your first treatment appointment.

Your radiation treatment appointments

You will come to the cancer centre for your daily treatment appointments. Plan to arrive 15 minutes before the time of your first treatment appointment. You will see an oncologist and/or a nurse for a radiation treatment review once a week while you are on treatment.

Check your appointment list on MyChart regularly. It is important to confirm the time of your appointments everyday as they may change up to 2 days before the appointment.

To learn more about your radiation therapy:

• Read the Canadian Cancer Society booklet ‘Radiation Therapy: A Guide for People with Cancer” found under publications at cancer.ca.

Patient Lodge

The Patient Lodge for the cancer centre is located at a local hotel. You may be able to stay at the Patient Lodge if you:

• Are not able to travel to your daily treatment appointments and

• Live more than 50 km away from the cancer centre.

Rooms are free of charge if booked through the cancer centre. Talk to a member of your healthcare team about this.

Some retirement homes offer rooms and care for a fee. You may want to call local homes to obtain more information about this.

Genetics Clinic

You may be referred to the Genetics Clinic by a member of your healthcare team. The Genetics team will look at your personal and family history of cancer to see if there is a chance the cancers in your family might be inherited.

You may be referred to the Genetics Clinic if you have:

• Many family members with cancer, especially the same type of cancer

• Family members who had cancer at an unusually young age (for example: colon cancer before age 60 or breast cancer before age 35)

• A family member with ovarian cancer at any age

• Family members with rare cancers (for example: breast cancer in a male)

• A family member with more than one cancer (for example: a woman with breast and ovarian cancer)

• A family history of a known hereditary cancer mutation (examples: BRCA1/2, APC)

When your doctor refers you to the Genetics Clinic, you may be asked to give some of this information about your family members. If you are given an appointment for the Genetics Clinic, it may be a video, telephone or in-person appointment. If you are not given an appointment, it is because your family history of cancer does not meet the conditions for genetic counselling. During your appointment in the Genetics Clinic, genetic testing may be offered to you or suggested for your family members. You do not have to have Genetic testing. Genetic testing may help guide your choices for treatment. It may also give you and your family useful information about your future risk of cancer and what cancer screening you may need. Some people who do not qualify for provincially covered genetic testing may choose to pay for testing. Information about self-pay genetic testing can be found on the Lakeridge Health website under Hereditary Cancer Genetics. You can call the Genetics Clinic at 905-433-2733.

Clinical

Trials

Many of the cancer treatments we use are because patients volunteered to be in a clinical trial. A clinical trial is a kind of research that decides the safety and usefulness of treatments and screening and prevention methods. There are many reasons why people choose to be in a clinical trial. Some patients join a clinical trial because their treatments did not work or there are no other treatment options. By participating in a clinical trial, you may find out about new treatments before they are widely available. Talk to your oncologist to see if a clinical trial is a choice for you.

Did you know?

• Chemotherapy and immunotherapy were developed as a result of clinical trials.

• You can ask about participation in clinical trials at any time during your treatments.

• The DRCC Clinical Trials Program has been involved in over 262 clinical trials to date. For more information on the clinical trials available at the Durham Regional Cancer Centre, go to canadiancancertrials.ca

For more information on clinical trials, go to the Lakeridge Health website at lakeridgehealth.on.ca and search for research. You may also want to go to itstartswithme.ca

Palliative Care

Palliative care is a special kind of healthcare for individuals living with a life-limiting illness. The goal of palliative care is to provide comfort and dignity as well as the best quality of life. You may be seen by a palliative care doctor or team because you have pain or other symptoms from your illness. You may be given palliative care support at any time throughout your cancer journey. You may be given this care while you are at home or in the hospital.

Your family doctor or specialist can refer you to a palliative care doctor or team.

• If you are at home, you may be seen by a palliative care doctor or team in the area where you live. If you cannot leave your home for an office visit, the palliative care doctor may come to your home.

• If you are coming to the Durham Regional Cancer Centre, you may be given an appointment to see the outpatient Palliative Care Team. You may be seen at the cancer centre or by telephone or video appointment.

• If you are in the hospital, you may be seen by a palliative care doctor or team.

Complementary and alternative therapies

Complementary and alternative therapies are products and practices not part of standard medical treatment. It is important you make safe and informed choices about complementary and alternative therapies. Some complementary therapies can interact in a harmful way with your cancer treatment. Talk to a member of your healthcare team if you are using or planning to use any complementary or alternative therapies. This includes any vitamins.

Helpful supports

Cancer Centre Pharmacy

We have a specialized oncology pharmacy located in the Durham Regional Cancer Centre. It is next to the Systemic Therapy Suite on the main level of the cancer centre. Our pharmacists, pharmacy technicians and drug access facilitators are part of your healthcare team in the cancer centre. This healthcare team has expertise in your cancer care and treatments. We recommend you fill the prescriptions for your treatment medications at the cancer centre pharmacy because we specialize in:

• Preparing your systemic therapy treatment medications.

• Preparing you for your cancer treatment.

• Making expensive or hard to find treatment medications available to you if needed.

• Helping you find coverage options for treatment medications prescribed for you.

• Working together with your oncologist to plan your cancer treatment.

Your Cancer Centre Pharmacy Team

Our Pharmacist will:

• Provide you with information about your medications such as:

• What they are used for

• How to take them correctly

• How to prevent and manage side effects

• Answer questions about your medications or their side effects

• Review your cancer treatment plan to safely prepare the medications ordered by your oncologist

• Communicate directly with your oncologist at any time

• Review the list of medications you are taking to check for possible drug interactions

• Be available to meet with you while you are in the cancer centre

• Be available to talk with you by phone

• Communicate with your community pharmacist if needed

Our Pharmacy Technicians:

• Prepare your systemic therapy treatment medications

Our Drug Access Facilitators:

• Help you review your insurance coverage for cancer treatment medications

• May be able to help you find options to cover the cost of your medications if you don’t have private insurance

How to contact a member of the Cancer Centre Pharmacy Team

• Ask a member of your healthcare team to contact the Pharmacy Team while you are in the cancer centre.

• Call the Pharmacist at 905-743-6900.

• Call the Drug Access Facilitator at 905-576-8711 / 1-866-338-1778 extension 32837.

Cancer Centre Pharmacy hours

We are open from Monday to Friday, 8:30 am to 4:30 pm. We are closed on weekends and holidays.

The Psychosocial Oncology Team

The diagnosis and treatment of cancer can be very difficult and overwhelming. You and your family member/partner-in-care will have questions and concerns. It may be helpful for you to talk to a member of the Psychosocial Oncology Team.

Dietitian

Eating is not always easy when you are undergoing cancer treatments. Nutrition is an important part of your cancer care. A dietitian can work with you to meet your individual needs and preferences.

A dietician can help you:

• Manage symptoms or side-effects that affect your eating

• Maintain your weight and muscles

• Stay hydrated

• Find foods you enjoy and tolerate

• Answer questions and concerns about nutrition, diets and supplements

Nutrition can be a confusing topic. A dietitian can offer you nutrition advice based on research.

Ask any member of your healthcare team for a referral to a dietitian.

Speech-Language Pathologist (S-LP)

Swallowing problems can be caused by your cancer diagnosis affecting your ability to eat. You may also have changes to your voice and ability to talk.

A speech-language pathologist can help you by:

• Answering questions or concerns

• Offering information on how to manage swallowing problems

• Finding foods and liquids you can safely eat and drink

• Referring you to other members of the healthcare team if needed.

Social Worker

A social worker is a trained counsellor. A social worker can help you and your family member/ partner-in-care cope with challenges during your cancer care and treatment. This includes how to:

• Cope with your diagnosis

• Manage your feelings of fear, anxiety, sadness, anger or a sense of loss

• Support your sexual health concerns

• Manage changes in your relationships because of cancer

A social worker can also provide you with information on:

• Advance care planning

• Financial supports

• Community programs

We want to help you and your family member/partner-in-care take an active role in adjusting to life with cancer.

To make an appointment with a dietitian, speech language pathologist or social worker call: 905-576-8711 / 1-866-338-1778 at extension 33282.

BETTER Clinic

Are you feeling anxious or depressed? Do you have worries or concerns that are hard to manage? It can be very difficult and overwhelming for you to live with a diagnosis of cancer. You may be unsure of what to expect or what to do next.

To support you with the changes in your emotions, we have the BETTER Clinic - Building Emotional Therapies Through Education and Relationships. A social worker will call you after you are referred to the BETTER Clinic. The social worker will give you information on what you can do to manage your worries and concerns. Together, a social worker and psychiatrist will work with you to plan for the next steps in your care. You will also be given information about supports and resources in the community that may help you.

Talk to a member of your healthcare team if you want to know more, or be seen in the BETTER Clinic.

Medical forms and letters

Sometimes an insurance company wants information about your medical history, diagnosis, lab results and x-rays.

If you need a medical form or letter filled out by your oncologist, please give them to the receptionist when you arrive at the cancer centre. You will be asked to sign a consent form to have your information released. There is a fee for this service.

Other forms you may need help with:

• Employment Insurance (EI) - Sickness Benefits and Compassionate Care Benefits

• Canada Pension Plan (CPP) disability benefit forms

• Off work forms

• Return to work forms

• Short and long term disability forms

It can take up to 30 calendar days for your forms to be ready for you.

Indigenous Navigator

The Indigenous Navigator offers support to self-identified First Nations, Inuit, Metis, and Urban Indigenous (FNIMUI) patients and families in the Central East.

The Indigenous Navigator can:

• Help you connect with cultural and translation services.

• Help you plan care that is focused on your goals and wishes.

• Give you support before, during and after your appointments.

• Help you get answers to questions about your care.

• Help you and your family access care and services at home.

Call 905-576-8711 / 1-866-338-1778 at extension 32554 if you have questions or want to set up a time to meet. You can also ask a member of your healthcare team to refer you to the Indigenous Navigator.

Spiritual Care

A spiritual health practitioner can offer you support for spiritual care and emotional needs. Many people find this helpful when faced with a serious illness.

Ask a member of your healthcare team to contact a spiritual health practitioner for you.

Benefits of quitting smoking

Quitting smoking is one of the best things you can do to help your cancer treatment work better. It can help reduce treatment side-effects and the chance of your cancer coming back.

Choosing to quit smoking can be hard but you can do it. We can help.

There are people and programs to help you quit smoking. You can:

• Ask a member of your healthcare team at the cancer centre for a referral to the Quit Coach. The Quit Coach offers counselling support and will help you create a plan to quit smoking. This appointment can be scheduled by telephone, video, or in-person. You will also receive free nicotine replacement therapy (“the patch”, gum, lozenges, etc.) to help you with cravings.

• Talk to your community pharmacist, family doctor, or nurse practitioner.

• Call Health Connect Ontario at 811. This is a free, confidential telephone-based service available 7 days a week.

• Call, text, or email Talk Tobacco. It is a free, confidential and culturally safe program available to Indigenous Peoples. Call 1-833-998-8255 or go to talktobacco.ca for more information.

Watch these videos to learn more about why it is important for you to quit smoking: youtube.com/watch?v=scKrYJ5WuoU youtube.com/watch?v=NO-IXFpo-5k

After you finish treatment

As you finish treatment, you and your family members/partners-in-care will have questions and concerns about the future. This is normal. Some of the challenges and changes that patients talk about are: relationships, fertility, finances, sexuality, employment, depression and anxiety. Talk to any member of the healthcare team about your questions and concerns.

When you finish your cancer treatment at the Durham Regional Cancer Centre, we encourage you to watch the After Cancer Treatment Teaching video found on our website at lakeridgehealth.on.ca/en/ourservices/life-after-cancer-treatment.asp.

This video offers information on:

• Your new normal

• The next steps in your care

• Your worries and fears

• How to live a healthy lifestyle

• Resources and supports available to you and your family member/partner-in-care

Talk to a member of your healthcare team if you want more information about this video. The Canadian Cancer Society has a booklet called “Life after Cancer Treatment” that may be helpful to you. You can find this booklet on the Canadian Cancer Society’s website at cancer.ca under publications. Hearth Place Cancer Support Centre offers programs and support groups for you and your family member/partner-in-care.

Helpful supports and resources in your community

Peer support: Talking to someone who has been there

We know it is stressful to find out you have cancer. Talking to other people that have cancer can be helpful. Many cancer organizations offer a telephone helpline where you can talk to someone who has the same type of cancer as you. This person has special training to give support and information to you. Talk to a member of your healthcare team about this.

Hearth Place Cancer Support Centre

Hearth Place Cancer Support Centre is a centre for patients and their family members/partnersin-care. The Centre offers support, information and wellness programs to men and women. There are also programs for children and caregivers. Hearth Place is located at 86 Colborne St. West in Oshawa. Parking is free.

Phone: 905-579-4833

Email: hearthplace@hearthplace.org

Website: hearthplace.org

Canadian Cancer Society (CCS)

A cancer diagnosis can make you feel alone and raise many questions and concerns. For family and friends, caregiving can be a lonely and exhausting experience. Our online community –CancerConnection.ca – helps people with cancer and their loved ones share their experiences and build supportive relationships.

Cancer Information Service: This service is a toll free line that provides information about cancer. Information can also be mailed to you. There is information on topics such as: cancer and cancer treatment, research and other resources and organizations.

Phone: 1-888-939-3333

Website: cancer.ca

Community Services Locator

The Community Services Locator can help you find services and programs closest to you. Website: csl.cancer.ca

Ontario Health atHome

Ontario Health atHome connects you with the care you need to have at home. Referrals to the Ontario Health atHome can be made by you, a family member, caregiver, friend or a member of your healthcare team. When you call, a care coordinator will talk with you about your needs and develop a plan with you. You may be connected with nurses, personal support workers or other members of the healthcare team.

Phone: 1-800-263-3877

Website: ontariohealthathome.ca

Look Good Feel Better

Look Good Feel Better offers virtual and in-person workshops on how to manage the effects of cancer and treatments on your physical appearance. These workshops offer information on skin care and hair alternatives. Go to lgfb.ca for more information.

Queering Cancer

Queering Cancer offers resources and supports from LGBTQ2+ communities for you and your family members/partners-in-care. Website: queeringcancer.ca

Young Adult Cancer Canada (YACC)

YACC offers online supports and resources. You will find a list of activities and retreats on the website that can help you connect with other young adults. Call 1-877-571-7325 Website: youngadultcancer.ca

Wellspring

Wellspring offers online support groups and educational workshops. Call 1-877-499-9904 Website: wellspring.ca/online-programs

Hospice Programs

Hospice programs offer palliative care support and bereavement services to individuals and their family members/partners-in-care. Hospice programs support people living at home, in the hospital, long-term care homes, retirement homes and shelters. Support for family members/partners-incare to cope with the death of a loved one is also available.

VON Durham Hospice Services

Phone: 905-240-4522 or 1-877-668-9414

Hospice Peterborough

Phone: 705-742-4042 or 1-800-790-0867

Hospice/Community Care Northumberland

Phone: 705-653-0955 or 1-866-514-5774

Hospice Kawartha Lakes

Phone: 705-879-4123 or 1-800-461-0327

Scarborough Centre for Healthy Communities: Hospice and Caregiver Wellness Centre

Phone: 416-642-9445 extension 4419

For information on other cancer supports and resources available to you, go to lakeridgehealth. on.ca/en/ourservices/psychosocial-oncology-patient-education.asp.

Ask a member of your healthcare team for the handout ‘Cancer Information and Supports’. This handout can be found at lakeridgehealth.on.ca/en/ourservices/resources/Cancer/CancerInformation-and-Supports.pdf

We want to hear about your experience!

We are committed to giving you the best care possible. We want to hear about your experience with the care we have given you. Hearing about your experience helps us continue to support processes that have gone well. It also helps us identify areas where we can improve the care we give.

Tell us about your experience with care by:

• Completing the Your Voice Matters survey at isaac.ontariohealth.ca/yvm/cancer. A member of your healthcare team may share a card with information on how to complete this survey. This survey is anonymous and cannot be seen by your healthcare team. It takes about 3 minutes to complete.

• Talking to any member of your healthcare team.

• Asking to talk to a Manager in the cancer centre.

• Calling the Patient Experience Program of Lakeridge Health at 905-576-8711 / 1-866-338-1778 extension 34402. You can also send an email to: PatientExperience@lh.ca

Consider joining the DRCC Patient and Family Advisory Council. For more information call Debbie Devitt, Patient Experience Lead at 905-576-8711 / 1-866-338-1778 extension 36401. The leadership and healthcare teams of the cancer centre partner with patients and their family members/partners-in-care on many projects and committees.

Community supporters

Lakeridge Health/Durham Regional Cancer Centre would like to thank our community supporters. However, we do not represent or endorse any specific organization listed in this booklet.

www.facebook.com/patientdirectory.ca

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