Perspectives of Young Women with Breast Cancer: Patient Experiences Indicate Opportunities to Improve Treatment

Abstract

In this focus group study of 11 women younger than 45 years of age treated at Memorial Sloan Kettering Cancer Center (New York, NY, USA) between March 2020 and April 2021, patients were asked about their preferences for types of resources, and timing and method of information delivery. Patients expressed interest in personalized medicine, access to integrative health and a holistic approach to treatment, and early consultation for fertility preservation. Their narratives elaborated on how age at diagnosis influences interpersonal relationships and quality of life, and provides direction for interventions to better counsel and support this population.

Breast cancer accounts for ∼30% of malignancies in young adult (YA) women age 18–39 years, making it the most common cancer in this demography.¹ Although it has been estimated that only 4.4% of breast cancers diagnosed in 2023 will occur in YA women,² their prevalence in this cohort has been increasing steadily since 2004.¹ Unfortunately, this rise also notes an increase in the number of women with regional/distant disease.³ In addition to the fundamental differences in their tumor biology, young women with breast cancer face challenges distinct from those experienced by older women with breast cancer.⁴ At our institution, we created a Young Women with Breast Cancer (YWBC) program and expanded the YA cohort to women age <45 years.

Young women adjust to their breast cancer as they are experiencing significant physical/psychosocial changes. Physical changes not only influence cancer biology and response to treatment⁵ but also, from a phenomenological perspective,⁶ shape personal identity. As women transition to financial and social independence, treatment adherence may be compromised by the cost of cancer care and difficulty managing their appointments/treatment schedules.⁴ These and other barriers to receiving effective, high-quality care require further investigation. We now expand on previous investigations highlighting the needs and experiences of YA women with breast cancer^7,8 with this interview-based study inquiring as to how practices at an NCI-designated cancer center with a targeted YWBC program could be improved.

Methods

Patient population/study design

Women age 18–44 years who were either undergoing or had completed treatment for stage 0–III breast cancer at Memorial Sloan Kettering Cancer Center (MSKCC) between March 2020 and April 2021 were invited to participate. Although the strict definition of YA involves women aged ≤39 years, the MSKCC YWBC program includes women age <45 years. Patients were recruited by their medical or surgical oncologist to participate in a 90-minute focus group of their peers as a needs-assessment strategy for an institutional quality improvement initiative (QII). Interested patients confirmed willingness to participate by email. Patients were eligible to participate if they were currently undergoing/had completed their treatment at MSKCC and were able to read/communicate in English. Patients undergoing active treatment included those receiving surgery or chemotherapy within a month of study participation. Those who were on endocrine therapy were eligible to participate as long as their systemic, surgical, or radiation treatment(s) had been complete for at least 1 year and they had not had a local or distant recurrence. Patients for whom more than 3 years had lapsed since treatment completion were excluded.

Procedures

Two focus groups differing by treatment status (active versus completed) were conducted virtually (via Zoom) during separate 90-minute sessions. Eligible patients were identified by a surgeon (M.L.G.) or a medical oncologist (S.B.G.). Participants provided signed informed consent. Demographic information was obtained as part of the recruitment process to screen individuals. However, to facilitate candid discussions and protect anonymity, no patient, disease, or treatment characteristics were retained or collected for data analysis. No incentive was provided. This study was approved as a QII by MSKCC’s institutional review board.

Focus groups were moderated by a trained qualitative methodology expert using a semistructured interview guide. As this study was designed as a QII, the treating medical oncologist and surgical oncologist for the women who participated were present. Questions were formulated after in-depth review of the literature in order to elicit narratives germane to the YWBC experience (Table 1). These questions underwent an iterative judgmental review process during which members of a multidisciplinary advisory panel provided feedback on items to allow for clear and relevant communication. A moderator employed follow-up inquiries in order to fully explore participant responses. Major topics of discussion were summarized to avoid misunderstandings and allow participants to elaborate on and clarify their narratives. Audio recordings of the focus groups were transcribed; identifying information was redacted.

Table 1.

Focus Group Prompts

Areas of exploration
Timing of consults	1. Who would be the most helpful for you to see on your initial visit at MSK? 3. What are your thoughts on coordinated appointments? (in other words, coordinating times so that you see multiple providers on a single visit) a. (If helpful): What are some of the ways it’s helpful? b. Is it overwhelming or “too much”? 5. Are there any services for which you would like to be referred preemptively (e.g., genetics, sexual health)? Or only when you develop symptoms/specific concerns? a. Why, or why not?
Delivery of information	1. When you were diagnosed, what were some of your immediate concerns? 3. What resources do you currently use when you have a question about breast cancer or its treatment? a. Are there any questions where you prefer to ask your doctor instead of looking up the information? What kind of questions? 5. How do you usually prefer to receive health-related information? a. Probe: Online materials? Written handouts? Verbal? 7. Would you go to an app or website for educational materials? a. (If already): which websites/apps? b. What about a website made by MSK? 9. If there was a website or app with information about your treatment, what kind of info would you want to see? a. How often do you think you would use an app like this? 11. Is there any other information that you feel would be helpful as you navigate treatment?
Psychosocial needs	1. Did you utilize social work or psychiatry services for support during or after your treatment? a. What was your experience? b. What did you find helpful? c. Was there anything you would’ve wanted to change? 3. What do you think about the timing of your referral to psych/social work? a. Would you have wanted this earlier in your treatment? At a later time? 5. When do you think patients would benefit from psychiatry or social work support? a. How would you like to be approached about this, as a patient? 7. Has anyone here attended a patient support group? a. What did you like about it/what would you change? b. What would the ideal group look like for you? 9. What are some emotional supports or resources that could be helpful for patients? a. What would you want these resources to look like?
Financial distress	1. What was your experience with financial toxicity? a. What were some of the challenges you experienced? 3. At the beginning of your treatment, did you experience financial toxicity? What about as time went on? 5. How supportive was your employer during treatment? a. Did you take paid leave at any point? b. Did you need to quit your job? Start a new job? 7. What’s something about the financial impact of cancer treatment that you wish you knew earlier? 9. How can MSK better support patients who experience financial toxicity?
Treatment and side effects	1. Did you find that you received enough information about side effects of your therapies? 2. Are there any services that did not inform you well enough about the possible side effects that you may experience/sequelae of treatment? a. Could you tell me more about that? 3. What were your expectations prior to treatment? a. How did that compare to the outcome? 4. In general, which symptoms are the most difficult for patients to manage? 5. What is something that helps make symptom management easier? Or helped you cope with your symptoms? 6. Is there any other information you would’ve wanted about symptoms or side effects?
Involvement with research	1. Has anyone here participated in research studies at MSK? 3. When would you have wanted to discuss research studies with your care team? a. Did you ever feel overwhelmed by how many research studies were discussed with you? b. How many studies do you think is reasonable to discuss with a patient at one time? 5. Would you prefer to be approached at one time about all studies or at separate times for each study? a. How many studies are appropriate? 7. What are some things that could make it easier to participate in research at MSK? 9. At what time would it be best to discuss study 12-245 and IMPACT testing? Integrated Mutation Profiling of Actionable Cancer Targets (MSK-IMPACT is a targeted tumor-sequencing test available to MSK patients. MSK-IMPACT can detect mutations and other critical changes in the genes of both rare and common cancers)
Overall satisfaction	1. How was your MSK support during treatment? a. What was most helpful during your treatment course? b. What could we improve? 2. Do you have any regrets? Or anything you wish you had done differently? 3. What would have improved your experience at MSK? a. How could your care have been better streamlined for you?

Analysis

Transcripts were analyzed using thematic content analysis (S.P.M. and J.G.).^7–9 Using the focus group transcripts, two coders developed a coding schema based on a priori domains in the interview guide and emergent themes from patient narratives. The coders met to reach consensus on codes and definitions. Transcripts were then reviewed and coded independently. Once all transcripts were coded, codes were categorized and grouped. The team reviewed the coded content, across all transcripts, grouped within a category. Following this review, the team met to reach consensus on the primary themes that emerged. Coding was facilitated using qualitative data analysis software NVivo14 (QSR International, Burlington, MA). Given the limited sample size for this study aimed at institutional quality improvement, statistics and frequencies were not obtained.

Results

Eleven women participated in two focus groups. The first group consisted of seven women who had completed treatment. The second comprised four women who were in the midst of treatment. Four primary themes emerged from patient narratives: (1) information delivery timing, (2) type of information and mode of delivery, (3) desired resources for patients, and (4) difficulties with diagnosis and treatment (Table 2).

Table 2.

Quotes Representative of Themes

Themes	Subthemes	Illustrative quotes from patients
Theme 1: Timing of information delivery	Information at specific visits—impact testing, integrative medicine, and fertility services	“I joined that as soon as I was told about the [targeted tumor] sequencing, I signed up. [This should be discussed during the] first meeting.”
		“Something that would have been helpful: someone could have told me about the different other departments or services at MSK because I actually went online and researched the integrative department because I really wanted to see an integrative oncologist.”
		“Figuring out the IVF. I did it after surgery but before I had chemo but I didn’t realize that I needed to do it so the timing was a little touch and I think talking about that during your initial meeting is important.”
	When and how to approach with information—repeating information and not approaching during acute treatment	“Between the nurses providing the education, sitting and talking with you, the oncologist, the chemo-nurses who reinstate what we are going to be going through every single time we go, [we are kept] well abreast of what we could experience.”
		“I was paired with the nutritionist at MSK. But the nutritionist came in one day during my second round of chemo, which was a horrific experience every time I was in the chair. I was just like, now is not the time to chat with you about taking a Mediterranean diet. I just need to get through this chemo session. I never really followed up with him.”
Theme 2: Type of information and mode of delivery	Clinical information—desire for individualized information and utility of hospital websites/apps	“One of the things I was thinking about was […] you do not know where to focus or what information applies or if it applies in your case or not. I think it would be absolutely phenomenal although really challenging to tailor the information in a more personalized way. Maybe at the intake of the patients as you were being plugged in to MSK system, if you already know your stage, then there are a number of different priorities that you should be focusing on.”
		“Knowing that MSK has its own portal and all of that information here is top-notch, very well researched. […] I know that some of my after-surgery care information was shared with me through the portal. If I couldn’t find the page I was looking for when I got home, I was able to go to the portal and look there.”
	Experiential information—from friends, family, and peers, and web-based media	“My favorite aunt had breast cancer and went through chemo and radiation. As a family member, for her to just to say, “if you have any questions, you need anything, just let me know, I have been through it, done it”. Knowing I had that support is great.”
		“I know I Googled a lot. Sometimes it was a bad thing because it is too much information out there. [My oncologist] really helped because I tried to ask her my questions when I went to visit her rather than Google.”
	Importance of having a plan and knowing options—up-to-date information and visual representations	“I would love to be able to easily keep up with new research that is coming out because I know there are so many trials for new treatment and new drugs that can treat different kinds of breast cancer. Being able to easily access research or new drugs/information that is applicable to our individual situation would be super helpful.”
		“Some kind of tentative road map, or just the timeline. Just say, ‘ok-you may have 4 steps ahead of you, but you have done 1 and you have killed it. You are on to the next step.’ It would be a little more encouraging and hopeful other than, ‘in 3 weeks’ time you are going to be referred to this doctor in a different building. They will tell you X, Y, and Z’.”
	Ease of access to information—organization of information/resources and usability considerations for digital resources	“You almost need a pamphlet. You get all this information in the beginning, and you are in this state of overwhelm you almost need a—‘you’re almost done or basically done and here are the resources again’—I wish you could all just be more organized.”
		“I used the portal a lot and would message the office of the doctor if I was having any side effects or in between meetings. The portal is great but if there is something that is a little bit more easy to use. The messaging function is good, but it takes a little while to figure out.”
Theme 3: Desired resources for patients	Clinical resources—navigation assistance (financial/insurance and work leave/disability)	“I think a big barrier to entry in starting with the therapist at Sloan is wondering if your insurance is going to cover it. You can’t call and say, ‘do you take United Health?’, because they have you go back through insurance. I wish that when you came in as a patient, they ran it for you and said, ‘Dr. So and So applies to you or doesn’t or would be 100 dollars per session. If you are out of network, this is your social worker and here is your number’.”
		“Just figuring out leave of absence from work, whether or not that is the right thing to do, and that is obviously something with your own job, but I think that is something that should be talked about because it was so stressful just making the decision-do I really need to be here or should I take the time for my health? At 26 years old, work is the most important thing, but it’s not, because life is.”
	Experiential resources—caregiver support and peer-to-peer support	“One of the things that was challenging for me was that I needed to support my husband as he was struggling that his wife had cancer as opposed to being able to take the patient role and feel supported. I wonder if there is this resource […] to have the support for your social support.”
		“I did not really pursue a lot of the mental health stuff until actually after all of it was done but at the beginning what I really wanted was someone in my age group who was like, ‘let’s get a drink’.”
Theme 4: Difficulties with diagnosis and treatment	Changes in body	“For a lot of women, we get put into menopause permanently or temporarily in some cases. You are learning this whole new body.”
	Emotional overwhelm	“I didn’t know when this nightmare was going to end and not knowing that really caused a bit of distress and anxiety going through treatment.”
	Dealing with others’ expectations	“You don’t want to tell them the truth to scare the hell out of them and you don’t want people to think you are less than or different and you are very much so are. You don’t feel good at all, but you do everything you can to hide it or maybe to prove yourself and maybe to pretend, and maybe it is playing pretend, that you are still you and to remind them of that.”
	Learning about illness as a young person	“It is just different because you are in your early 30s and you are used to your friends living a certain lifestyle and now you can’t really keep up with them as much anymore.”
	Learning the “sick role”	“When I do tell people, I get this weird, ‘oh my gosh, what happened! So young!’ There is a lot of explanation that is needed, and I felt like I had to stand there and tell my whole story.”

Information delivery timing

Patients expressed interest in receiving information on molecular testing, integrative medicine, and fertility early in treatment. One noted the importance of targeted tumor sequencing in providing individualized treatment. Another indicated that integrative medicine services were of interest. Patients emphasized the importance of discussing fertility preservation soon after diagnosis, given the urgency of pursuing related procedures before gonadotoxic chemotherapy. Patients conveyed the need for repetition, as they felt overwhelmed early after diagnosis and often forgot details about their care. Patients also shared that receiving new information not directly associated with their immediate treatment needs contributed to their being overwhelmed; participation in research studies and referral to nutrition services, while important, were best left to discussion during non-acute treatment periods.

Timing/type of information delivery

Patients described the need for receiving clinical information from health care providers and found utility in the experiences of friends, family, and peers. When clinical information was needed or provided, patients expressed strong preferences for being presented with data and resources individualized to their diagnosis, treatment, and prognosis. Patients found hospital websites and web-based information to be the most helpful, and emphasized the appeal of visual representations of treatment plans, including timelines or roadmaps. Patients also discussed the need for up-to-date information, including on new clinical trials and treatments, and the need for web resources (i.e., hospital websites) to be kept up to date.

Patients also reported that access to information could be made easier; digital resources should be better organized with consideration for usability. Patients appreciated MSKCC having a web-based application and patient portal, noting the convenience of having streamlined and centrally located patient information access. Specifically, patients appreciated eliminating the burden of paperwork, as some expressed feeling overwhelmed by the information packets they received early in diagnosis and treatment.

Desired resources

Patients expressed a desire for resources for navigating financial strain and work leave/disability, caregiver support, and finding peers with similar experiences. The cost of cold caps and fertility preservation were two additional topics of concern for patients. Participants vocalized needing assistance with understanding whether insurance coverage existed for cold caps and how to obtain reimbursement. Durability of employment for both patients and their caregivers was also a source of anxiety. Patients reported that variability in insurance coverage—often not knowing what services/support were covered, how to access services/support, or how to self-advocate with insurance companies—was a source of financial strain. Patients also reported difficulty determining whether to take time off from work during treatment, and how to determine eligibility and file for short-term disability.

Support from caregivers and support from peers with similar experiences were also important to patients. One patient noted that she felt she had to care for her partner who was struggling with her diagnosis while simultaneously caring for herself. Others noted that their partners did not have supportive work environments. Some partners lost their jobs due to caregiving responsibilities. Patients also expressed a desire for support from peers who had gone through similar circumstances. Contrary to the traditional support group model, patients preferred these connections occur in a social setting; formal support group settings were viewed as a barrier to sharing, whereas informal encounters were felt to be more helpful. The common themes of wishing for access to social work services earlier in their treatment, and the option of peer-to-peer support in smaller groups, were reported.

Diagnosis and treatment difficulties

Patients reported several challenging experiences during treatment, including body changes, overwhelming emotional burden during diagnosis and treatment, coping with others’ expectations, learning about illness as a young person, and learning the “sick role.”

Diminished stamina, weight, menopausal symptoms, and intense fatigue were among the body changes patients had to contend with. These consequences of cancer and treatment created the sense of having a new physical body, affecting the ability to exercise, have intimacy, and care for their children. Being emotionally overwhelmed exacerbated these physical difficulties and occurred in response to navigating fertility procedures such as egg retrieval, working during treatment, information overload, uncertainty about the future, traveling for treatment, feeling alone, and prognosis fears. These issues contributed to patients reporting a feeling of missing out on important parts of life during their 20s and 30s.

Participants reported coping with others’ expectations of how they should behave as cancer patients. One patient felt like her happiness during diagnosis and treatment was scrutinized. Some reported fear of inquiries regarding their physical and emotional well-being. Patients shared that they often told people they were in good spirits, even if they were not, to avoid questioning. Employers’ expectations were also a source of concern; some worried about work productivity/ability during treatment. Finally, challenges specific to being young and experiencing illness included struggling with misconceptions of cancer being a disease of aging, managing the “sick role,” relationships changing upon consideration of their diagnosis by others, and how one’s identity might be shaped by having a chronic or terminal illness.

Discussion

In this study exploring needs of young women with breast cancer, patients reported preferences for types of resources, and timing and method of delivery. Specifically, patients expressed interest in personalized medicine, access to integrative health, and early fertility preservation consultation. Their narratives elaborate how age at diagnosis influences interpersonal relationships and quality of life, and provide direction for interventions to better support this population.

Existing studies have shown that young women with breast cancer require psychosocial support, especially with navigating their familial relationships and responsibilities.¹⁰ In a Dana-Farber Cancer Institute study, YA women identified introductions to breast cancer survivors of similar age at the time of diagnosis, patient navigators and case managers able to coordinate care, assistance managing expectations for adverse effects of treatment, access to experienced counselors, education on speaking with others about their cancer diagnosis, and resources for transitioning to survivorship as particularly helpful.¹¹ Although participants in our study placed similar emphasis on care coordination, new themes emerged: patients desired a more holistic approach to breast cancer treatment, and individualized information regarding therapies and prognosis for their particular tumor subtype. Although patients appreciated the convenience of web-based applications, they reported user-interface difficulties and felt information could be better organized.

A major criticism of web-based resources was that most provider- or hospital-generated sites presented general information rather than material tailored to the individual patient. Accordingly, patients valued knowledge that could be extracted from the experiences of others. Interactions with those similar with respect to age, tumor subtype, or treatment were considered opportunities to obtain individualized information. The ability to find relevant information through personal webpages/blogs, message boards, etc. may contribute to the popularity of social media among the YA cohort.¹² Further studies are needed to evaluate how social media influences adherence to treatment, mitigates financial toxicity, and whether it improves patient-reported outcomes.

Our study has several limitations. Small sample size may have a limited diversity of perspectives. Although women who had completed their treatment were included, we did not specifically assess challenges in the transition to survivorship, which has been a theme in the work of others.^10,11 The women in the study were treated by a medical and surgical oncologist pair; having a wider array of providers may have elicited different patient narratives and themes. Representation based on race/ethnicity, sociodemographic status, and treatment type was not accounted for and may have influenced patient experiences.

Conclusion

Young women with breast cancer represent a unique population with distinct challenges. Although other interview-based investigations have indicated preferences for types of resources, our study expands upon existing work to highlight the importance of timing and type of information delivered; specifically, the need to provide data that are individualized to cancer type, prognosis, and treatment. Their narratives highlight that interventions to personalize our approach to patient care may allow providers to better counsel and support the needs of young women with breast cancer.

Footnotes

Authors’ Contributions

S.P.M.: Conceptualization, methodology, software, validation, formal analysis, investigation, resources, data curation, writing—original draft, writing—review and editing, visualization, supervision, project administration, and funding acquisition. J.G.: Conceptualization, methodology, software, validation, formal analysis, investigation, resources, data curation, writing—original draft, writing—review and editing, visualization, supervision, project administration, and funding acquisition. S.B.G.: Conceptualization, methodology, software, validation, formal analysis, investigation, resources, data curation, writing—original draft, writing—review and editing, visualization, supervision, project administration, and funding acquisition. M.L.G.: Conceptualization, methodology, software, validation, formal analysis, investigation, resources, data curation, writing—original draft, writing—review and editing, visualization, supervision, project administration, and funding acquisition.

Author Disclosure Statement

S.B.G. reports Professional Services and Activities for Ms.Medicine, LLC, NanOlogy LLC, Procter & Gamble, Revision Skincare, Sermonix Pharmaceuticals, LLC, Shook, Hardy & Bacon LLP, Spectrum Pharmaceuticals, Inc., TerSera Therapeutics LLC; Uncompensated Professional Services and Activities for TherapeuticsMD; and Equity from ReJoy. All other authors have no relevant disclosures or conflicts of interest to disclose.

Funding Information

The preparation of this study was supported in part by NIH/NCI Cancer Center Support Grant No. P30CA008748 to Memorial Sloan Kettering Cancer Center.

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