When Treatment Ends, Support Shouldn’t Stop in Cancer Care

For younger women with cancer, or survivors of cancer at a young age, supportive care remains an essential component of their care, as it helps these individuals address both emotional and physical needs before, during and after treatment, according to Natalie Schnaitmann.

To further expand on this topic, Schnaitmann sat down for a Q&A-style interview where she delved into the importance of education, self-advocacy and access to second opinions when symptoms are dismissed.

“If someone tells you no, you go to someone else, and you keep asking those questions and getting second and third opinions until you feel like someone's really listening and seeing you as a whole human being, not just a patient on their schedule,” she emphasized.

In the interview, she also delved into the importance of recognizing emotional and physical challenges that patients are presented with post-treatment, as well as highlighted the specialized needs that are necessary when treating adolescent and young adult patient populations.

Schnaitmann currently serves as the executive director of the Department of Supportive Care Medicine at City of Hope, located in Duarte, California.

CURE: How can supportive care specialists help young women navigate their risk proactively, especially when there's no family history or history or clear guidelines for screening?

Schnaitmann: That's a really good question. I think we often view supportive care as part of the active treatment and as part of the long-term care after that treatment. However, if I'm understanding you correctly, when we talk about navigating risk proactively, that primarily goes back to awareness and education. This is where supportive care can truly make a difference by elevating the awareness of primary care providers, gynecologic oncologists, and women's internal medicine physicians.

These providers can help by not only asking about familial risk (as we know, unfortunately, cancers are diagnosed even without a hereditary component) but also by having an elevated awareness in general. There are clear guidelines available, and it's important to encourage people to follow them. This can often be an increased challenge in various cultural circumstances, whether due to a culture of not feeling safe within the medical community, lacking access, or not having the necessary education. Despite these challenges, those guidelines for pre-cancer screening exist and should be strongly encouraged through awareness and education.

With survivorship now spanning decades for a lot of younger patients, what should long-term supportive care look like post-treatment, especially in terms of mental health, fear of recurrence and body image?

That's a great question, and you've highlighted three of the biggest factors. The cancer experience doesn't end on the last day of treatment. I think that's a mistake we make in the medical community, and often even within the support circles of family and friends who might think, “Oh, it's your last chemotherapy, your last radiation. Let's celebrate!”

It's very common for the emotional components of dealing with the entire cancer experience to begin when treatment ends. We see this all the time: during treatment, it's ‘fight mode’ or ‘action mode.’ You're at the hospital or treatment center daily, weekly; it's a full-time job of treatment, very focused. It's when that stops, when the quiet sets in, when it gets a little less busy, that the emotional flood occurs. This includes the flood of fear of recurrence, as you mentioned, and the flood of the actual physical and emotional trauma someone has endured. That is a significant issue.

There are also lasting symptoms. The side effects don't just disappear on the last day; they can persist for a good year, depending on the specific cancer treatment someone has gone through.

So, what I believe is crucial is offering that support and education — whether through in-person groups or other formats — proactively and early, as treatment is nearing its close. We often schedule a patient for their six chemotherapy sessions, and that's perceived as the end. People show up, the nursing staff, the physicians, everyone is great during the process, and then you ring the bell and go home. There's rarely a moment, perhaps a month before, when someone stops to say, “You know what? This can be really hard. These are some things, physically, emotionally, with symptom management, and psychologically, that patients can experience when their treatment is over. Can we talk about that for a little bit? Can we give you this education? Can we give you this time to ask your questions and know what supports and resources are out there for you?” Because there are many resources available to help you through that time.

Again, it's about normalizing this experience and making it a standard of care so patients don't end their treatment feeling like many do — “Oh, I should be so happy. I should be so excited. Why am I still struggling and suffering in this way?”

How can younger patients advocate for themselves if they feel concerned, or if they feel their concerns are being dismissed or minimized? What resources or strategies do you recommend to ensure that their voices are heard from the beginning of their care?

That's a great question. I think a root problem, even before that, is that people don't know. You don't know what could be going on with you or what the symptoms are. So, you go to medical providers, and there's trust — there should be trust, but not blanket trust, not 100% trust. These physicians, nurses, and people doing the screenings and testing are not all-knowing, powerful beings. Because we don't know, we go into that ignorant, and we kind of depend on them, which is okay.

What that means is still trusting your gut. You should seek medical confirmation, but if something doesn't feel right, believe in yourself. If something isn't going away or doesn't seem to be what other people in your age group are experiencing — like irritable bowel syndrome or menstruation side effects, whatever you're being told — it's always, always worth that second opinion, that third opinion.

It feels really hard, I think, for young people, but truthfully, for older people too, to push back. There's still a strong sense of hierarchy and physicians being an authority figure. I think that's something still very built into our culture, and it's hard for young people to say no, for young women to say, “This isn't right. I am demanding more.” That's not always built into who we are.

That goes back to one of your earlier questions: How do we spread awareness? How do we spread education about pre-screening, the tests you should be taking, and what you should be demanding for symptoms you're experiencing? I used to work in gynecologic oncology as a clinician, and so many of those young women were told they had irritable bowel syndrome, or were just bloated, or other sorts of nonsense. If you look around at your peers and you see, “Hey, this is not normal, and this feels very wrong,” don't stop. If someone tells you no, you go to someone else, and you keep asking those questions and getting second and third opinions until you feel like someone's really listening and seeing you as a whole human being, not just a patient on their schedule.

I would say that part of this movement for supportive care comes from a groundswell — it comes from the patients themselves. The more patients who go to a hospital or cancer center and experience cancer treatment that is just medical, when cancer is not just a medical issue and medical concern, the more they will ask, make their voices heard, and not be shy. They need to say, “This is hard, and I need to talk with someone about this.” “I need help managing these symptoms, like pain, nausea, diarrhea, whatever it might be.” “I need help managing the mental symptoms like fear, insomnia, sadness, and anger.” “I need help understanding the practical components, and where can I ask for support to manage these practical, resource, and financial issues along the way?” So, don't be afraid to ask, I guess, and to help swell that wave of awareness across the patient population as well.

How is your institution addressing the unique supportive care needs of younger women with cancer, and what models or programs have proven effective in closing gaps in care?

Yes, there are many models of care out there. What I would say is that at City of Hope, we have truly built the dream model, the gold standard of supportive care. We've been working on it for nearly 20 years and have served as a model for other medical centers in how to build and deliver comprehensive supportive care.

We have a large, integrated interdisciplinary team that addresses all the factors I've mentioned: physicians, nurses, clinicians, social workers, chaplains, educators, and Child Life specialists, among others. All of these professionals come together into one interdisciplinary team, meaning the patient and family are truly at the center, enveloped by comprehensive support. We provide supportive care professionally; it's a specialty and an integrated one at that. We also teach our oncology colleagues about supportive care skills, continuously striving to expand their abilities. We train them in goals-of-care conversations, and over time, we have developed some very special, innovative programs to address specific challenges patients face.

I've mentioned our Couples Coping Together Against Cancer program. We also have a special adolescent and young adult program, recognizing their particular needs as we discussed today. We offer a number of different targeted clinics and programs for older individuals facing cancer. Additionally, we've partnered with a growing integrative oncology program that includes both clinics and research. This program provides all forms of integrative oncology for patients and families, overlapping with supportive care, ensuring we bring the best of both specialties into the personalized treatment of our patients.

Transcript has been edited for clarity and conciseness.

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