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The medical leads of The Jackie Aziz AYA program are Dr. Ramy Saleh and Dr. Virginia Lee. The new positions for the program are Nurse Navigator, Rachelle Dinur, and Clinical Research Coordinator, Mahafarin Maralani. To improve outcomes for AYA patients, the team initiated collaboration between the Montreal Children鈥檚 Hospital and the Cedars Cancer Center, and the crossover of staff between hospitals is a major achievement! They鈥檙e tapping into PROFYL ( and ORCID to research the biologic features of cancer in AYA patients.

In 2021, approximately 2100 AYAs were followed at the Cedars Cancer Centre with approximately 360 newly diagnosed AYA patients.

AYA is a Unique Population with Unique Needs.

Rachelle Dinur

Role of Nurse Navigator

As a Nurse Navigator in the Jackie Aziz AYA Program, Rachelle Dinur describes herself as the 鈥減oint person鈥�. She plays a crucial role in helping patients transition from a pediatric to an adult centre, in assessing patients, and in providing resources to address their needs. Rachelle draws on available online material from different sources such as the Young Adult Cancer Canada (YACC) and Le Programme 脿 F茅lix (Fondation Qu茅b茅coise du Cancer) and then coaches patients to find what works best for them.

鈥�When I see my patients, I perform an initial assessment. I ask, are you working, in school, are you in a relationship, how is your partner handling this, do you live alone, do you have coping mechanisms, have you spoken about fertility, is this a stressor for you? You get into topics that are specific to that individual AYA patient. Once I have done that assessment, my goal is to follow them at moments of crisis and or of need. Some have not started families yet, or they are trying, and now their diagnosis disrupts everything. Fertility is a big topic that can lead to a crisis, and also school and work, because at this point in their life, they are trying to develop their careers or they don鈥檛 want to get behind in school. I help them find a balance, provide them resources to go onto the next step and later on, they can come back to me as needed.鈥�

Emily

A Patient鈥檚 Perspective

Emily was diagnosed at age 34 with Stage IV breast cancer. She underwent treatment at Cedars Cancer Centre (first chemo, then a partial mastectomy, radiation, and currently preventive therapy and immunotherapy). Post treatment, Emily experiences ongoing pain and needs adapted exercises to help her stay active and manage the pain. When she discovered the AYA exercise program, she signed up right away. 鈥淭hey were offering a kinesiology program for young adults. Post op and post radiation, I have a lot of pain and limited range of motion. I got in touch with nurse Rachelle and she told me about the program. I had no idea! This isexercise adapted to where you are at and that鈥檚 what I needed.鈥�

Nurse Navigator Rachelle Dinur is proud of the AYA program, including the free-of-charge kinesiology program which was the result of collaboration with Cedars Can Support and the Quebec Cancer Foundation.

鈥淲e have a kinesiologist who works with the Quebec Cancer Foundation who offered free courses in a group setting. Movement is proven to help in terms of energy, self-esteem and well-being, anxiety, and treatment side effects. The course was tailored to the AYA population so they were part of a group of people they could socialize with.鈥�

In addition, Emily, like many other young cancer patients, suffers from treatment side effects, including vaginal atrophy as a result of chemically-induced menopause. The result is painful sexual intercourse which impacts negatively on her quality of life.

鈥淐hemotherapy affects your entire body. To preserve fertility, you spend a few weeks doing intense hormone treatment to make your follicles mature more quickly to preserve your eggs. Then you are on a hormone blocker that shuts down your ovaries so you are thrown into a medically-induced menopause. I was 35 when that happened. No one explains the symptoms that come along with this including vaginal atrophy. It creates very painful intercourse. Thousands of women every year, even just in Montreal, go through this. The oncology team does everything possible so that you live to your life expectancy, but what is my quality of life going to be like? Some young women stop the hormone therapy because their quality of life is more important that the risk that the cancer will come back. This is an example of where the AYA program can work to help meet the needs of younger cancer patients.鈥�

Future Plans and the Link to Palliative Care

Jackie and/et Lynn

鈥�I remember my daughter Jackie telling her sister, 鈥淚f I die you鈥檙e going to have to take care of mom because she鈥檚 going to lose it.鈥� My reaction was, 鈥淥h Jackie don鈥檛 talk like that!鈥� But Jackie needed to share her thoughts about dying with me, and I let her know it was ok, I just needed to get used to it.

Over time and over many hospital nights where I lay beside her in her bed, we shared stories and spoke about her thoughts and wishes for what we鈥檇 call her celebration of life, because it was too hard to say funeral! Those conversations were precious gifts.

But I found the DNR conversation impossible to have, I didn鈥檛 want Jackie to feel I was losing hope or giving up. Maybe now with what I鈥檝e learned I would find a way to approach it, but she was my 23-year- old-daughter, and this conversation seemed impossible.鈥�

The DNR conversation finally did happen, very abruptly in an emergency room with a doctor who had no connection to Jackie. Lynn Aziz believes that many healthcare professionals are not comfortable having conversations about dying with their patients, especially in someone so young. Although Lynn and her husband wished the conversation had taken place with more compassion, they were relieved that their daughter was given the opportunity to express her wishes.