Navigating Cancer Survivorship: What Comes Next After a Diagnosis

Hearing the word “cancer” turns your whole world upside down in an instant. But as Meg McQuarrie, executive director of The Elixir Fund, shares, cancer survivorship begins the moment you get that life-altering diagnosis. From the initial shock to the ongoing challenges of post-treatment life, survivorship is a journey—one filled with fear, uncertainty, and, yes, hope. We asked McQuarrie for advice to help cancer survivors navigate this new chapter of life.

New Jersey Family: What are the stages of cancer survivorship?

Meg McQuarrie: Survivorship begins at the time of diagnosis. In the beginning stage of survivorship, getting the diagnosis is shocking and life-altering. It’s about acclimating to having the diagnosis and getting your treatment regimen set up.

Once you’re in treatment, the different stages include getting into a routine, your scans, your doctors’ appointments, whatever your treatment schedule is.

Then post-treatment is a whole other ball of wax, shall we say, because patients say, Now what? Some survivors are so scared of cancer recurrence that they don’t go to their follow-up appointments anymore; some feel comfort going to follow-up appointments because they want to monitor for anything abnormal. t. Others aren’t sure who to talk to when they’re released by their oncologist.

NJF: What are the mental health challenges that cancer survivors often face?

MM: Scanxiety, which is the emotional turmoil patients experience around medical scans and testing, adds another layer of stress. So many survivors say they dread going in for their doctors’ appointments. People don’t fully embrace the highs because they are waiting for the other shoe to drop. It’s hard to find a middle ground or find joy.

They also have a fear of recurrence, that they often don’t how to communicate to their family, or to their healthcare providers. They have to deal with the changes to their body and may have anger. Once you hear those words, “You have cancer,” suddenly you are faced with your mortality. A diagnosis of cancer brings it to the forefront of your mind.

My brother hesitated to go through treatment because he was afraid of being sick. Once he started going through treatment, it was a totally different experience than what had been billed to him. Seeing other people go through treatment, he had a different experience.

NJF: What strategies can survivors use to cope with the ongoing fear of cancer recurrence?

MM: Find a support group, talk to family and friends, treat yourself with kindness, and consider therapy. There are complementary therapies, like meditation, Jin Shin Jyutsu, which is a Japanese healing art that can help reduce stress and anxiety, and acupressure. Even simply holding your thumb can help with anxiety while you’re waiting for scans.

I encourage people to celebrate the wins when they come because you can’t prepare for the worst. Living your life expecting the worst isn’t a very joyful place to be. You should spend time with loved ones and continue to make memories.

ScreenNJ is a statewide service that provides education about cancer prevention and detection to the community and professionals. ScreenNJ supports NJ residents to obtain cancer screening through navigation and mobile health services regardless of their ability to pay. For more information about ScreenNJ visit screennj.org.

NJF: What kinds of body image issues do cancer survivors face?

MM: Cancer brings about a lot of changes to your body. The primary one people think about often is hair loss. There are scars and there could be loss of body parts.

We have to acclimate to the change in what we see in the mirror. I think as supporters of survivors, you have to give space and give time because you don’t know what it feels like until you’re faced with it.

NJF: How can survivors maintain or improve their physical health post-treatment?

MM: The key is in some way, shape or form to incorporate movement. That’s going to help your mental health. That’s going to help the fatigue. That’s going to help your physical outlook and your treatment. Pick a small achievable goal, like going for a walk every day, and build from there.

NJF: In terms of diet, is there anything you should be doing, or anything you should avoid?

MM: This varies according to the needs of each patient and should be discussed with a doctor or nutritionist. It also depends on whether your goal is to lose weight or to put on weight. You can make small changes, like adding shakes or smoothies made with fruits, vegetables, and nut butters. Food can also be a source of comfort. If ice cream brings you joy, have some ice cream, in moderation.

NJF: How can doctors best support survivors experiencing long-term side effects from medications that are used during treatment?

MM: There is a lot of conversation now surrounding shared decision-making. This is when doctors and patients work together to make choices about the patient’s treatment. Doctors should give you space, and tools, and be open with dialogue. The key is listening. I think it’s important for people to listen to their bodies and to share with their doctor.

ScreenNJ is a statewide service that provides education about cancer prevention and detection to the community and professionals. ScreenNJ supports NJ residents to obtain cancer screening through navigation and mobile health services regardless of their ability to pay. For more information about ScreenNJ visit screennj.org.

NJF: What activities can help survivors deal with the stressors of their situation?

MM: Survivors may benefit from finding somebody who specializes in oncology massage. A licensed yoga practitioner can help patients find relief through breathwork and gentle movement. It’s important to find a hobby that brings you joy. Spend time with family and friends.

A lot of joy and a lot of memories can be made in whatever time we’re given. A cancer diagnosis brings to light just how precious time really is. My brother called it the greatest gift in really ugly wrapping.

NJF: What resources should cancer survivors know about?

MM: The Elixir Fund was started to help people take a break from cancer. Don’t wait to “get back to” the life you were living, because nothing is a guarantee for anyone. Our goal has always been to help people assimilate their diagnosis and keep moving forward.

The Elixir Fund provides support to survivors and their caregivers. We can help you find resources in your local area. We also have online programs.

NJF: How can family and friends best support survivors?

MM: The main way is to have an open dialogue and really listen. Survivors may be open and want to discuss it, and it’s hard for family and friends to hear, but you should give them that space.

Some people may appreciate if you decide to raise money or shave your head in solidarity. We’ve all encountered well-meaning friends and family who say this or that, but step back and don’t necessarily come in with what you think are the answers, but really leave that space to listen and hear what somebody wants. Don’t rush in to fix anything; give the person 24 hours to digest new information.

A lot of times people step up and provide food because that’s easy. I tend to prefer gift cards because I think it’s nice if people can choose the food they want. But the main need we hear from survivors is transportation, especially when you’re in the thick of treatment. You need reliable transportation and having someone available to drive you to appointments, possibly wait if there is a delay, or pick you up; but also being the right person, gauging where the survivor is and if they want to talk or not.

It’s going to vary based on the type and stage of cancer. If someone’s terminal, that’s a different level of support that they’re going to need.

NJF: In that light, how might survivorship affect personal relationships?

MM: It can help and it can hurt. Some survivors have stories of friends and family members who disappeared during their most challenging times, while their neighbors stepped up unexpectedly.

Sometimes, friends and family don’t know what to say, what to do, or how to be there for the survivors in their lives.

ScreenNJ is a statewide service that provides education about cancer prevention and detection to the community and professionals. ScreenNJ supports NJ residents to obtain cancer screening through navigation and mobile health services regardless of their ability to pay. For more information about ScreenNJ visit screennj.org.

NJF: How important is it for survivors to have a tailored survivorship care plan, and what should that include?

MM: A survivor I spoke with said it should just be called a future health care plan. For example, if you’re a breast cancer patient and you had radiation, you’d want to have a cardiologist on board.

What does the survivor want to know? There are some people who want blinders on and there are some people who want to know everything.

We’ve also talked about a survivor’s form that a person can take to their doctor to get the critical information they need to know. It would be easier to digest. Survivors can take notes, with the help of their doctors, so that they can share with family members.

Meg McQuarrie is the executive director of The Elixir Fund, a nonprofit dedicated to supporting cancer survivors and caregivers. 

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