Connecting Patients with Others with the Same Cancer

It is easy for healthcare professionals to tell a patient that they’ll be fine, but unless the person telling them this has HAD the same type of cancer for which they are about to undergo treatment, it may not be believed.

As nurse and patient navigators, we should consider developing and implementing a cancer survivor volunteer team for this purpose. While not everyone you’ve treated may be a good fit to volunteer, you should be able to think back to several patients who took their diagnosis and treatment in stride and may serve as a good peer mentor for newly diagnosed patients with the same cancer.

I started a breast cancer survivor volunteer team called “Survivors Helping Survivors” in 1997, beginning with 5 breast cancer survivors. Two of those individuals are still on the team providing support to newly diagnosed patients, and, over the years, we have added others while some have dropped off due to moving away, family commitments, or even dying of stage IV breast cancer.

In this group, 13 of these amazing women have succumbed to stage IV breast cancer. All but 1 was still providing support to newly diagnosed stage IV patients within weeks of their own deaths. They felt it was part of their purpose. There are 22 volunteers currently on the team, and they range in age from mid-20s to mid-70s, stages 0 to IV, all races, and all mixtures of demographics. We even have a core group that comes on site to hold hands of women having biopsies when the radiologist feels the pathology results will confirm it is breast cancer.

Specific criteria for volunteers:

• Have the time to spend on the phone or in person
• Be objective and do not discuss the specifics of their own care team
• Cannot, under any circumstances, provide medical advice, even if they themselves are nurses or doctors (as several of ours are)
• Respect barriers and boundaries. When told concerning information, such as a patient has decided not to undergo surgery and instead chose alternative medicine therapy, they need to report this in real time so the navigator can intervene

Consider the following when interviewing for volunteers:

• Role playing a situation between volunteer and new patient
• Learn why they want to volunteer
• Gauge how much spare time they have
• It is best to have the individual be 1 year out from completion of active treatment (surgery, chemo, and radiation) before signing on for this volunteer role
• Those with stage IV breast cancer need to be well enough to be able to engage with others newly diagnosed. Over time they will get sicker, and this will require candid conversations between you and them about how much longer they want to continue volunteering

Patients should be matched to a survivor volunteer based on:

• Age at diagnosis
• Stage of disease clinically at first
• Prognostic factors
• Similarities in treatments

If a patient is receiving a relatively new treatment, it is important that all of the survivor volunteers be educated about it at quarterly dinner meetings so that they are aware of the treatment and how it works. These dinner meetings are great for education and networking. You should also consider them helpful for community outreach events at health fairs and other venues; you can even consider an annual awards dinner!

Newly diagnosed patients usually stay in touch with the survivor volunteer for as long as they desire, becoming an extended family member. Make sure to check in on your volunteer team members to ensure no one is dealing with compassion fatigue or burnout. You can also conduct surveys with patients to learn their experience and satisfaction with the survivor volunteer you assigned to them and was supported by them.

I could never have accomplished as much as I have within the Johns Hopkins Breast Center without my amazing team, so I encourage everyone to implement a volunteer team at their facilities.