A New Support Program for Head and Neck Patients With Cancer

A support group is a wonderful way to get help when going through an experience as challenging as cancer.

It’s a safe place where you can exchange with people who have gone or are going through similar situations. It’s easier for them to understand you and for you to feel heard.

Why create a head and neck support program?

Although you can get a lot of comfort from people who have had other forms of cancer, sometimes you want to hear from someone who has the same type as you.

That’s one reason Sandy Lipkus is working to set up a new support program for head and neck patients with cancer.

The idea of a head and neck cancer support group came about when a medical resident, Samer Salameh, approached Hope & Cope. He was working with McGill’s head and neck team and was interested in creating a support group for those patients.

A previous attempt at creating a similar group at Hope & Cope did not work as expected, because this group was offered to patients during their treatment.

So this time, the approach will be different. Instead of a support group, it will be a support program.

The goals of the new head and neck cancer support program

Sandy explains that the primary goals of this upcoming program is to provide support and information.

People often face ongoing issues after completing treatment. They think everything will be OK after treatment, but a few years later, they may experience long-term side effects, such as loss of taste, too much or too little saliva.

After consulting the ENT team of doctors and nurses, they recommended starting with patients who are being treated for oral cancers. This would include cancer in the mouth, tongue or the throat at the back of the mouth.

Patients can meet with guest speakers such as a doctor, nurse, dietician, speech pathologist, and a professional from a smoking cessation program. These experts can also address any concerns people may have.

The ultimate goal is to ensure group members are well educated and knowledgeable about the potential side effects and long-term impacts of the treatments. This helps them manage their expectations and cope better with their recovery journey.

It’s also an opportunity to connect with others experiencing similar challenges and learn whether their symptoms are common.

Should you join this program?

If you are still undergoing treatment, it might be too early to join. You need to consider travel to attend in-person meetings, transportation difficulties, and scheduling conflicts.

A virtual or hybrid model is under consideration, and that might be more appealing if you live far from the hospital or have mobility challenges.

This support program can help both patients and caregivers by offering resources and education on topics such as nutrition, cooking, and maintaining a healthy lifestyle. There may even be cooking demonstrations at the Hope & Cope Wellness Centre to help you learn how to prepare healthy and easily consumable meals.

This series of information sessions can provide you with a greater understanding of long-term side effects from your treatments and can provide other information as well. By connecting with peers who have faced similar challenges, you can find comfort and learn from one another.

We invite you to take part if you are a caregiver or family member. You can benefit from understanding your loved one’s experiences and challenges.

If you would like to get more information, or you would like to join the head and neck support program, please contact Sandy Lipkus at 514-340-8222 extension 22591.

More about head and neck cancer treatments

People who are undergoing head and neck treatments don’t want to join a group at that time. It’s too hard.” says Sandy. “It’s very difficult to think about anything outside getting through the treatment and illness.

Head and neck cancer treatments often involve surgery and radiotherapy. Chemotherapy is less common.

The process is difficult, and patients need to come in for treatment every day. Some patients may need to undergo reconstructive surgery, such as rebuilding the tongue or undergoing a laryngectomy.

One of the challenges of radiotherapy treatment is the need for a customized mask, which can be quite scary.

The mask is molded to the patient’s face and bolted down during treatment to ensure the radiation targets the exact spot without harming other areas. It also keeps the patient from moving their head during their treatment.

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After completing their treatments, some patients opt to repurpose their masks into planters or other creative uses, although some patients prefer to leave their masks and the memory it represents at the hospital

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Sandy says the success rate for these treatments can be quite good if the cancer is detected in time.

After their treatment, they can have a good life,” she notes. “Some of our volunteers who’ve had throat cancer are doing well seven or eight years later. They’re volunteering, they’re going back to work, they travel and they can enjoy being with their family and friends.”

About Sandy Lipkus

Sandy joined Hope & Cope in 2000. She has a background in social work and education, with a Master of Social Work and experience in teaching both kindergarten and at McGill University. Her diverse skill set made her a great fit for the organization.

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She has trained facilitators for various support groups, and has organized support groups herself, though not specific to head and neck cancer.

Besides her work with Hope & Cope, Sandy has volunteered in bereavement work. She facilitated support groups for people who have lost loved ones through the Living with Loss program at McGill. She also facilitated a Parkinson’s support group.

Sandy believes that group work can be highly beneficial.

I love doing group work and I see the benefit for some patients,” she says. “It’s not for everybody, but the ones who do attend definitely benefit from having been part of the group process.”

Closing words

Despite the challenges, many people maintain a positive attitude while going through their treatments.

For Sandy, their strength serves as a source of inspiration and motivation, showcasing the power of the human spirit in overcoming obstacles.

Many healthy people complain when the weather is bad,” Sandy notes. But when I see head and neck patients coming in for their treatments day after day with a positive attitude, despite the rain or the cold, I say to myself—there goes a real hero.”

If you would like to get more information, or you would like to join the head and neck support program, please contact Sandy Lipkus at 514-340-8222 extension 22591.

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