What does cancer survivorship mean?

Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be The Informed Patient, with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

Some people who are treated for cancer believe their life will be different after cancer. Today, I'll be talking about life after cancer with Susan Tiffany. She's a registered nurse, certified in oncology nursing. Welcome to "The Informed Patient," Ms. Tiffany.

Nurse Susan Tiffany: Thank you so much. Thank you for having me.

Host Amber Smith: From time to time we hear about how many people are diagnosed with cancer or who die from cancer. Do you have numbers for how many people who are diagnosed with cancer actually survive the disease?

Nurse Susan Tiffany: I can talk about survivorship in general, but it really depends on a lot of variables: what type of cancer, when they were diagnosed. breast cancer for a five-year survival, we have 90%. Colon has gone way up, to 87%. And even lung cancer, if diagnosed in early stages, people are surviving 50% for five years.

Host Amber Smith: So it sounds like more people are surviving cancer now than ever before.

Nurse Susan Tiffany: Oh, absolutely. Just for some statistics, in 1971, there was 3 million survivors. In '22, we have 18 million survivors, and I think it's projected for 2030, 26 million people. So yes, many people are surviving cancer, much longer periods of time.

Host Amber Smith: At what point do you consider a patient is in survivorship? Because I wonder, is it when treatment concludes, ordoes it start when they're in treatment, or does it start a certain number of years after treatment ends?

Nurse Susan Tiffany: Survivorship, definition of survivorship from the National Cancer Institute, is Stage Zero, time of diagnosis, to the end of their life.

Host Amber Smith: Is that how things work at the Upstate Cancer Center as well? Is someone considered in survivorship from Day One?

Nurse Susan Tiffany: That is the definition. Our survivorship program typically is for curative intent, and so people are referred to me, and then I call them, and we go over a multitude of things, including diagnosis, their treatment, late-term, long-term side effects, surveillance, cancer screening and surveillance for the cancer they've been diagnosed with.

And then a big part of survivorship is also talking about health promotion going forward and making sure that also, there's good communication between the patient and their primary care doctors.

Host Amber Smith: Now during this survivorship, I understand a medical team will be checking on physical aspects or medical aspects over the years. Is that right?

Nurse Susan Tiffany: Absolutely. Absolutely. Patients are followed by the specialist for approximately five years. It depends on the interval and what they're being treated with, but then eventually they are reunited with their primary care doctor. And that communication is extremely important to make sure that the follow-up continues, to make sure that the patient feels safe and that they're continuing to be followed.

Host Amber Smith: Let me ask you a little about some of the emotional and mental aspects of survivorship. I wonder, is relief a universal feeling for people who have survived cancer, or is that relief mixed with a constant fear that the cancer's going to come back?

Nurse Susan Tiffany: A constant fear. I think a lot of people have that constant fear.

In fact, they've given it a name, "scanxiety." When they come in to have their scans done, it causes a lot of fear and anxiety, so helping those people through that is part of what we do. They can have trouble sleeping, they can feel irritable, trouble eating. And so what we try and do is explain to them that it's a normal response that they're feeling, try and get them to name the physical response that they're feeling in their chest, what kind of stress release they're having, response. Meditation and mindfulness are two practices that can help with that.

Host Amber Smith: Do you see people who are more anxious about their overall health after cancer treatment than they ever were before?

Nurse Susan Tiffany: Absolutely. And that can bring a lot of positive changes, and that's the part with health promotion that we can do. I think there's a time for that post-traumatic, positive improvement.

Host Amber Smith: Now, what about survivor's guilt? Have you ever helped people who successfully survived cancer and feel survivor's guilt?

Nurse Susan Tiffany: Yes, yes I have. Many people have survivor's guilt.

It's the same type of guilt that our military (and) survivors of 9/11 have had. Somebody has passed with the same diagnosis that they have and they have this feeling with, "Why me? Why didn't it happen to me?" So that can be very hard. It's different degrees for different people. We try and tell them that that's very normal, it means they're compassionate. However, if it does interfere with their activities of daily life, then we do suggest that they get some professional help, and I'll make a referral to our psychosocial oncology program.

Host Amber Smith: How might a person's relationships change during or after cancer treatment? I'm thinking about with family members, with friends, with romantic partners.

Nurse Susan Tiffany: That's hard. It's different for everybody, but I see a lot of people who have been diagnosed with cancer, and it's very difficult for them to talk to their family members about their fears. Family members have their own fears.

And I think that's where the nursing staff comes in, the doctors, the nursing staff, comes in at Upstate, is allowing those patients to express their fears and anxiety that they're having because family members are just too close. Another aspect of that is feeling as though they're a burden. They need transportation, they're a little more needy than they were before the diagnosis.

Women have a hard time with that. It's also a time that they can try and learn how to let go and let somebody take care of them.

Host Amber Smith: It's one thing to let your family and your close friends know that you have cancer. How do you advise people, they have work friends that they're really not that close to: Do they need to know that the person has cancer?

Nurse Susan Tiffany: They do not need to know that. Absolutely not. That's up to the individual, how much they want to share and how much they feel comfortable sharing. So, no, that's not something that is often expressed to people. And, in fact, a lot of people don't want to share that information. They don't want people to feel sorry for them.

They don't want people to know that they have a diagnosis. They don't want to feel outcast. They don't want to feel different. They don't want to feel as though they're getting privileges that maybe somebody else didn't have.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith.

I'm talking with Susan Tiffany from the Upstate Cancer Center. She's a registered nurse, certified in oncology nursing.

How long is a person considered in survivorship, and I wonder if that works the same for a person who was diagnosed with childhood cancer versus a person with cancer that they developed in their 50s or 60s?

Nurse Susan Tiffany: It should be all the same. Survivorship starts with diagnosis and goes to end of life. Now, the difference with children Is the cancer treatment that they received. We want to keep a close eye on it. There's some cancer treatments that could cause problems later in life with lungs and the heart. And so we, keep a close eye on that.

Host Amber Smith: Do you find people who are not interested in survivorship, they just want to put their cancer behind them? Or do you find people that see value years, decades later, in staying active in survivorship programs?

Nurse Susan Tiffany: Absolutely, Amber. There is some folks that do not want to talk about survivorship. They don't want to be called a survivor. They don't want to talk about their cancer at all. They don't participate in any of the fundraisers or, they just want ... their diagnosis is over. When their treatment ended, that's it, they don't want to know anything else.

Then there's folks that are so grateful that they finish their treatment, they want to help other people. They want to be mentors. They participate, volunteer at fundraisers. They want to be part of the program.

Host Amber Smith: it sounds like you meet a variety of people. Do they ever talk with you about personal growth that they've experienced because of or tied to a cancer diagnosis?

Nurse Susan Tiffany: They have. And that is one of the aspects of the survivorship program that I feel very fortunate about, is to help bring out these positive changes in people.

Actually, it's called "post-traumatic growth." That's what it is. And it describes the changes that people develop. As a result of this frightening experience, stressful experience, that they've gone through, oftentimes it deepens their connections with their families and their friends. They have more of an appreciation for life.

Often people have developed more of a spiritual practice, and also, their health becomes more important and they want to know more about exercise and nutrition and stress reduction.

Host Amber Smith: So let me ask you, when you connect with people about survivorship and you talk with them, what sorts of resources do you make them aware of, and how do you go about connecting them?

Nurse Susan Tiffany: At Upstate, we have a lot of resources. We have a great program. Our psychosocial oncology program is a supportive service that we have, and they address the psychological, psychosocial, social, behavioral, emotional, issues that come up with a cancer diagnosis. And that's one resource.

But then we also have palliative care. We have pain management, we have social work services, financial counselors. Smoking cessation is important. And then we do have some support groups at Upstate. We do have the Pink Champions, which is a breast cancer support group. And then we have a support group for the head and neck folks, people who have been diagnosed with head and neck cancers.

And Men to Men is a support group for prostate (cancer) patients.

Host Amber Smith: Now you mentioned that some of the process of survivorship is for the patient to go back to their primary care doctor rather than seeing their oncologist all the time. Can you help someone who doesn't have a primary care doctor find one?

Nurse Susan Tiffany: Absolutely. So far, that hasn't been an issue. But if they didn't have a primary care, I would definitely help them find one. And then also I do send a letter to their primary care, letting them know, very brief letter, about their diagnosis and where they are in surveillance: When's the last time they had a colonoscopy? When did they have a pelvic exam? Mammograms. Immunizations, even.

Host Amber Smith: Even for the people that want to put cancer way behind them and forget that it ever happened, it is still part of their medical history for life, right?

Nurse Susan Tiffany: Correct. It is. It is.

Host Amber Smith: So how do you advise people to balance the importance of knowing about, that cancer history and like always keeping it in the back of your head, but living your life without dwelling on it? How do you balance those two things?

Nurse Susan Tiffany: Education. That's the only thing we can do, is educate. It may be too stressful of an event that they can't discuss. They want to put it behind them. It's so individual, but the most important thing is education, explaining to them why it's important that they're followed, why other health care providers need to know about their diagnosis. And then also finding out what the fear is and possibly getting them help through our psychosocial oncology program, support groups. Online now, there are so many support groups and so much information that's out there. Even our Upstate Cancer Center, looking around the Upstate Cancer Center website support services.

We have so much information on there and education for our patients.

Host Amber Smith: Ms. Tiffany, I really appreciate you making time for this interview.

Thank you so much for having me.

My guest has been Susan Tiffany. She's a registered nurse, certified in oncology nursing, at the Upstate Cancer Center.

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed.

This is your host, Amber Smith, thanking you for listening.