A Content Analysis of Cancer-related Changes in Perceptions of Self, Relationships, and Health among LGBTQI+ Cancer Survivors across the Life Course: Findings from OUT: The National Cancer Survey

Abstract

Background:

The LGBTQI+ population makes up at least 7.6% of the US population. LGBTQI+ populations are at increased risk of experiencing LGBTQI+-related discrimination and cis-heteronormativity in healthcare leading to poorer health outcomes throughout the cancer care continuum. We aimed to explore LGBTQI+ cancer survivors’ perspectives of how cancer has changed their perceptions of self and relationships using data from OUT: The National Cancer Survey.

Methods:

We conducted an inductive qualitative content analysis of responses to four open-ended questions from OUT: The National Cancer Survey. Data were collected from September 2020 to April 2021. Eligible participants were 18 years of age or older at time of survey, had been previously diagnosed with cancer, identified as LGBTQI+, and currently lived in the US. Open-ended survey questions asked about the impact of cancer on LGBTQI+ cancer survivors’ perceptions of self and relationships. To maximize inter-rater reliability, 20% of the survey responses were double coded. Chi-squared tests assessed differences in changes across the life-course.

Results:

Of the participants in the OUT survey (N=2378), 86.9% (N=2069) provided responses to at least one of the four open-ended questions. The content analysis sample was primarily aged 40-59 (39.3%) and 60-79 (49.4%), gay (54.7%), cisgender men (59.4), White (89.7%), and not on active treatment (77.4%). A total of 5179 codes were applied to the 2069 responses. A total of 5 overarching categories and 18 sub-categories were identified. Themes included: 1) Changes in Perceptions of Self; 2) Changes to Relationships; 3) Changes to Health; and 4) LGBTQI+ Specific Unmet Needs. The most commonly reported categories were changes in perceptions of self (77%, n=1,593) and changes to health (47%, n=972). Most cancer-related changes were more frequently reported by young adult survivors.

Conclusions:

This content analysis illuminates the unique challenges that the LGBTQI+ population faces while navigating through the cancer care continuum.

Background

The lesbian, gay, bisexual, transgender, queer, intersex, and expansive (LGBTQI+) population makes up at least 7.6% of the United States (US) population.¹ Those who identify themselves as LGBTQI+ in the US are more likely to be younger (e.g., 22.3% of Generation Z, 9.8% of Millennials, 4.5% Generation X) and more racially and ethnically diverse (e.g., 11.0% of Hispanic or Latine adults, 6.7% of Black adults, 6.6% of White adults) than their non-LGBTQI+ counterparts.^1,2 Largely driven by structural forces such as LGBTQI+ identity-related stigma, cis-heteronormativity, and discrimination, LGBTQI+ populations experience worse physical, mental, and financial health—both within and outside of the cancer context—in comparison to their cisgender, heterosexual counterparts. ^3–6

At the same time, the number of cancer survivors in the US continues to grow.⁷ Despite this, psychosocial supportive services and survivorship care needs continue to go unmet among cancer survivors—particularly among survivors with unique needs such as LGBTQI+ cancer survivors.⁴ Prior research has highlighted that most cancer patients experience some aspect of personal growth and meaning making as a result of the trauma their cancer diagnosis.⁸ Further, the impact of cancer on romantic relationships has been observed to be largely protective (e.g., lower rates of divorce), however, higher rates of divorce are observed among young cancer survivors. ^9,10

While adjusting to a cancer diagnosis is complex for anyone, the added layer of LGBTQI+ identity formation and identity-related structural stigma and discrimination may further strain this process.¹¹ LGBTQI+ individuals in the US continue to live in a cis-heteronormative society which centers cisgender, binary gender identities, endosex, and heterosexual orientation as normative, idyllic, and biologically based. These norms force each LGBTQI+ individual to understand their own identity in the context of a largely anti-LGBTQ+ society and to repeatedly go through the process of ‘coming out’ to the people in their lives, or choose to keep their identity private.¹² This is an especially important consideration for LGBTQI+ individuals with cancer, as discrimination by healthcare providers is a key contributor to healthcare disparities for LGBTQI+ communities.^13–15

Literature has increasingly sought to disentangle how cancer impacts LGBTQI+ cancer survivors’ perceptions of self, identity, and relationships,¹⁶ much more work is needed to holistically understand the unique psychosocial needs of LGBTQI+ cancer survivors across the life course. Using OUT: The National Cancer Survey—one of the largest LGBTQI+ cancer survey studies in the US—we aimed to explore LGBTQI+ survivor reported changes in their perceptions of self, their identity, relationships, and other factors as well as to assess differences in changes by age group.

Methods

OUT: The National Cancer Survey

The National LGBT Cancer Network, a national advocacy organization, collected data for OUT: The National Cancer Survey between September 2020 and April 2021. The survey included questions about demographics, COVID-19 related impacts, diagnosis/treatment experiences, and other outcomes. Of note, a comprehensive list of sexualities and gender identities including intersex and two-spirit identities was featured in this survey, highlighting increasing heterogeneity in the LGBTQI+ community. Eligible participants were 18 years of age or older, had been diagnosed with cancer, identified as LGBTQI+, and currently lived in the US. Recruitment occurred online and was promoted through over 100 community partners across the US. Data were cleaned by the study team using IP addresses to identify duplicate survey respondents, retaining the more complete response. Surveys with less than 75% completion were dropped. Data cleaning resulted in an analytic sample of N=2382 LGBTQI+ cancer survivors from 49 states. Written informed consent was obtained from each participant. The OUT survey was approved by the WCG Institutional Review Board (IRB) (formerly New England IRB) in August 2020. This analysis was approved by the University of North Carolina IRB in June 2022.

While most questions in the OUT survey were closed-ended, four open-ended questions were included in the survey. Four consecutive questions, found in Table 1, explored how cancer had changed LGBTQI+ survivors perceptions of self, intimate relationships, and other changes. Demographic questions from the OUT survey utilized in this analysis included age at survey, health insurance status, sexual orientation, gender identity, race, ethnicity, education level, rurality, and if the participant currently had cancer.

Table 1.

Outcome Questions from OUT: The National Cancer Survey

Question 1	“How has cancer changed the way you view yourself?”
Question 2	“How has cancer changed the way you view yourself as an LGBTQI+ person?”
Question 3	“How has cancer changed your intimate relationships with others?”
Question 4	“Is there anything else you would like to share with us about how cancer has impacted you?”

Qualitative and Statistical Methods

Due to overlapping content within participants’ entries, the responses to all four open-ended questions were merged and analyzed as one piece of content per participant. A content analysis approach was taken to analyzing the data, including two cycles of coding.¹⁷ The first cycle started with ARW and SJ immersing themselves in the data and reading all the open-ended question responses and creating memos.¹⁸ Memos denoted content that was surprising, important concepts, concepts that were mentioned frequently, as well as content that was difficult to interpret. During regular coding meetings, the study team (ARW, SJ, HKH, EEK) then developed a preliminary codebook. ARW and SJ then coded 6% (n=118) of the responses into the preliminary codebook, meeting several times throughout to discuss codebook edits and restructuring. At this point, new codes were still being added, therefore, ARW and SJ coded an additional 6% (n=119) of the responses to further refine and finalize the codebook. Once the codebook was finalized, the remaining codes were split between ARW, SJ, MU, AG, and MHB to be coded into the codebook using Dedoose. Coding meetings occurred every other week throughout the coding process. During coding meetings, any difficult codes, tweaks, or edits to the codebook were discussed. Further, to maximize reliability, during the coding meetings at least three coders reviewed an additional 8% (n=167) of coded responses for consensus, resulting in 20% of participant responses that were coded using coder consensus (100% agreement).^19,20 The study team then met to collapse and refine sub-categories as well as interpret the findings.

The frequency of each sub-category was then stratified by age groups (i.e., 18-39 years, 40-59 years, 60-79 years, and 80+ years). Chi-squared and Fisher’s Exact tests were used to assess differences in sub-categories by age when appropriate.

Study Team Positionality

During analysis, each study team member was prompted to think about themselves in relation to the subject of the analysis as well as in relation to the participants of the study. Study team members were asked to reflect on their positionality during the analysis as a means of reflexivity.²¹ The conceptualization and analysis was led by two doctoral students (ARW and SJ) who identify as a White cisgender queer man and a Black cisgender queer man. The overall research team included researchers who identified as inside and outside of the LGBTQI+ community.

Results

Of the N=2378 participants in the OUT survey, N=2069 (86.9%) responded to the four open-ended questions with some kind of content regarding changes due to cancer. Participants in the analytic sample identified most commonly as gay (54.7%), White (89.7%), cisgender men (59.4%), and between the ages of 60-79 (49.4%). The analytic sample had a higher proportion of participants who were insured (97.4% v. 92.5%, p<0.0001), more educated (college degree or more: 75.9% vs. 61.0%, p=0.01), less likely to have a current diagnosis (22.6% vs. 29.0%, p=0.02), and more likely to live in rural or remote areas of the US (15.9% vs. 9.3%, p=0.02) than those who did not respond to the open-ended questions (Table 2). The aggregate of open-ended responses were, on average, 43 words (median: 25 words; range: 1 – 705 words). A total of N=5179 codes were applied to the N=2069 responses. Non-descriptive responses or responses that indicated no change were uncommon and not reported below (n=411). The qualitative content analysis resulted in 4 overarching categories and 18 sub-categories. Category frequencies and definitions can be found in Table 3, illustrative quotes can be found in Table 4. Categories included: 1) Changes in Perceptions of Self; 2) Changes to Relationships; 3) Changes to Health; and 4) LGBTQI+ Specific Unmet Needs.

Table 2.

Demographic Differences by Response to Open-ended Survey Questions among LGBTQI+ Cancer Survivors in OUT: The National Cancer Survey (N=2,382)

	Any Response (N=2,069, 86.9%)		No Response (N=313, 13.1%)
	N	%	N	%	p-value
Age at survey
18-39	133	6.4	33	10.5	<0.0001 *
40-59	813	39.3	105	33.6
60-79	1022	49.4	112	35.8
80+	101	4.9	63	20.1
Health insurance status at survey
Insured	1937	97.4	246	92.5	<0.0001 *
Uninsured	52	2.6	20	7.5
Sexual Orientation
Lesbian	515	24.9	72	24.7	0.9
Gay	1132	54.7	154	52.7
Bisexual	99	4.8	16	5.5
Multiple orientations	202	9.8	33	5.8
Another orientation	121	5.9	17	11.3
Gender identity
Cisgender men	1222	59.4	175	60.1	0.9
Cisgender women	672	32.6	92	31.6
Transgender/ Non-conforming/nonbinary	165	8.0	24	8.3
Race
White	1776	89.7	235	86.4	0.07
Black or African American	64	3.2	16	5.9
Another Race/Multi-racial	141	7.1	21	7.7
Ethnicity
Non- Hispanic	1853	94.1	244	92.1	0.2
Hispanic	116	5.9	21	7.9
Education
High school diploma or less	71	3.6	19	7.3	0.01 *
Some college or vocational school	336	17.0	52	19.9
College or vocational school degree	769	38.9	100	38.2
Graduate school degree or higher	802	40.6	91	34.7
Self-reported urbanicity
Urban	774	38.9	107	39.9	0.02 *
Suburban	899	45.2	136	50.8
Rural or Remote	315	15.9	25	9.3
Cancer Status at time of survey
Current cancer diagnosis	442	22.6	78	29.0	0.02 *
In survivorship	1513	77.4	191	71.0

Asterisks indicates p<0.05.

Another sexual orientation included Queer, Pansexual, Asexual, and Straight

Another race/multi-racial included Asian, Indigenous, Native Hawaiian or Pacific Islander, and Middle Eastern or North African

Sexual orientation and race were collapsed due to low sample sizes.

Table 3.

Qualitative Content Analysis Categories, Sub-categories, Frequencies and Definitions of LGBTQI+ Cancer Survivors Responses to Four Open Ended Questions (N=2069 participants, N=5179 codes)

Categories and Sub-Categories	Number and Percentage of Participants with Code Present N (%)	Definitions
No Change	212 (10)	No change across all four questions.
Small Changes	84 (4)	Short responses such as “some” or mixed responses “yes” to one question and “no” to another.
Large Changes	54 (3)	Short responses such as “a lot”
COVID-19 Changes	37 (2)	Any mention of the COVID-19 pandemic
1. Changes in Perceptions of Self
Identity-related Changes	606 (30)	Changes in perception of self, such as discussion of identity formation, changes in gender identity and/or sexual orientation, mention of intersecting identities including having a diagnosis of cancer and HIV, increased willingness to disclose LGBTQI+ identity, and mention of new awareness of mortality.
Personal Growth	1066 (52)	Mentions of personal growth such as living life to the fullest, new outlook, more optimistic, happier, more empathetic, more resilient, stronger, more confident, and meaning making.
Identity-related Stressors and Distress	576 (28)	Mentions of discrimination, experiences of stigma, contemplating the fairness of their diagnosis, feeling trapped in the closet, feeling no longer whole, loss of control, less confident, feeling isolated or alone, feeling like a burden, anger and shame, and scared.
2. Changes to Relationships
Relationship Dynamics	355 (17)	Changes in how relationships were viewed or prioritized such as being more discerning and changes in need for intimate partner.
Strengthened Relationships	253 (12)	Mentions of relationships being better off due to cancer experience such as becoming closer to and spending more time with partners, family, and friends.
Weakened or Lost Relationships	232 (11)	Mentions of relationships that were strained or lost due to cancer experience such as getting divorced or limiting communication with specific individuals.
Importance of Social Support	140 (7)	Mentions of being thankful for the people who supported the participant through their cancer experience.
3. Changes to Health
Physical Health	538 (26)	Mentions of changes to physical health such as symptom burden, side effects of medications, changes to body, late effects, comorbidities, and recurrence.
Mental Health	155 (7)	Mentions of changes to the mental health of participants such as increased anxiety, depression, or PTSD.
Sexual Health	660 (32)	Mentions of changes to participants sexual health such as sexual functioning, body image, desirability, dating and sex life, as well as libido.
Financial Health	66 (3)	Mentions of changes to financial health including inability to work, high costs, and insurance issues.
4. LGBTQI+ Specific Unmet Needs
Cancer Prevention and Care	73 (4)	Mentions of unmet needs such as safety in clinic spaces and patient provider communication.
Psychosocial Support and Care	54 (3)	Mention of unmet needs such as LGBTQI+ specific support groups.
Sexual Health	18 (1)	Mentions of unmet needs such as sexual health care and resources.

Qualitative content from the open-ended questions were merged into one piece of content per participant for analyses. Percentage add up to more than 100% as multiple codes could be applied to each participant response (a total of 5179 codes were applied to the 2069 participant responses)

Question 1: How has cancer changed the way you view yourself?

Question 2: How has cancer changed the way you view yourself as an LGBTQI+ person?

Question 3: How has cancer changed your intimate relationships with others?

Question 4: Is there anything else you would like to share with us about how cancer has impacted you?

Table 4.

Qualitative Content Analysis Categories, Sub-categories, and Illustrative Quotes of LGBTQI+ Cancer Survivors Responses to Four Open Ended Questions (N=2069 participants, N=5179 codes)

Categories and Sub-Categories	Illustrative Quotes
1. Changes in Perceptions of Self
Identity-related Changes	“I’m much less afraid of dying, and in general more at peace with the human condition” “It [cancer experience] moved me into a place further into the non-binary spectrum” “Yes, I’m more open about being who I am with people. My story is pretty remarkable when you know all the details. If people don’t believe that, they don’t really know how amazing my journey has been!” “I came out as nonbinary/trans after the diagnosis and I think it is related to the diagnosis. Like I said, it made me realize life is short and I have to connect with what I really want for myself.”
Personal Growth	“I waste less time, I’m more forthright, I am less closeted” “I view myself not only as a gay cancer survivor but as one who survived a cancer that, during my illness and treatment affected my sexual health” “I cannot say that it changed a lot but it did allow me to come out earlier than I would have in a Bible Belt town. I had a new love for living freely, even at such a young age and it forced me to really look at my identity and come to head to with my faith. I ultimately chose my freedom of identity over religion and I believe a lot of that is due to not wanting to lose any time being anything other than myself.”
Identity-related Stressors and Distress	“As a lesbian it is amazing how much of our identity is wrapped up in our breast.” “It took me a long time to get my butch confidence back.” “As a trans man I felt very alone and fearful for my survival. Felt poke n prodded by doctors and medical people as a teaching moment. My body sovereignty was dismissed. Definitely taught me to be a staunch advocate and ally. And brought me to a social activist.” “Really it was the intersectional experience of being a queer fat person that was difficult and the aftermath of the surgery which left me with severe lymphedema years later that is disabling. Difficulty with weight discrimination as a queer person was a much larger hurdle than sexual orientation alone.”
2. Changes to Relationships
Relationship Dynamics	“Among my straight friends they seem to think I am a pitiable hero. This seems silly and wrong to me. It is still stunning to me how a cancer diagnosis altered my HIV+ friends ‘ perception of me. I am now more fully “one of them.”” “I don’t need people who are unaccepting of me [as LGBTQI+] in my life any more.” “I only focus on relationships that mean something. While I do have acquaintances, I would say I try to cultivate long-lasting and intimate friendships with people now. The surface level semantics just do not do anything for me and I would rather become closer with multiple individuals and create a space that is open and loving.”
Strengthened Relationships	“Disclosing my cancer diagnosis was a first step to opening up about myself with my social network and allowed me to eventually come out of the closet once I knew that I had a network that was supportive of me.” “I’m closer with my wife and my cousin. I talked to my estranged mother and sister” “My parents know who I am and accept me for who I am [LGBTQI+ person]. I didn’t have this before cancer.” “Intensified love and it made holiday celebrations more about relationships and less about trapping”
Weakened or Lost Relationships	“I lost my partner immediately after treatment. I became very insecure about my physical attractiveness. I have had no intimate relationships since.” “I am hurt and disappointed in my logical vs. biological family.” “My cancer and the treatment thereof resulted in no-longer having any libido. I no longer have physically intimate relationships and it seems that most of the gay men I have met are not interested in a relationship based on emotional intimacy.”
Importance of Social Support	“It has made me more passionate about fighting for equal rights. My husband stepped up in the list amazing ways during my treatment. I could not have thrived and survived without him. It’s made me want to celebrate and fight for our rights as gay men.” “I was in the closet to my entire family before my diagnosis. Now I am fully out and shouting it from the rooftops. I am unafraid to be 100% me. Its made me realize the most important people in my life, and appreciate them so much more. They come first now.”
3. Changes to Health
Physical Health	“As a gay man who has faced cancer and survived radical, body-altering surgery, I’ve come to realize I’m a lot stronger and more adaptable than I ever imagined.” “I don’t feel healthy and strong anymore because of the side effects of treatment that will probably only get worse with time.” “Poorer self-image physically since weight gain from Prednisone. Physically appearance in the LGBTQ world is held high.”
Mental Health	“I feel shame and guilt because I think I brought the cancer to myself for being gay.” “As a pansexual man who is a prostate cancer survivor it has been difficult emotionally for me to connect with other men.” “My mental health is shaky. I am not able to perform as well in a work or social environment.” “I am alone, been dealing with this more or less alone, and I am kind of losing it.”
Sexual Health	“I feel diminished sexually as a male. I feel diminished sexually as a gay male. I rarely want to top and no longer enjoy getting head because I don’t want to explain why I have an implant and pump in my scrotum and I no longer ejaculate. For prostate cancer survivors sex is no longer the same and it complicates our sexual interactions and ability to have spontaneous sex with random men.” “Now I have lost my sexual life due to cancer I see myself as incomplete.” “I’ve learned that intimidate relationships are about much more than physical contact, and can be just as meaningful in ways that may not look like what everyone else’s relationships do.”
Financial Health	“Filed bankruptcy, had to start over. That was with health insurance. Hospitals send you to collections day 27. It’s overwhelming on top of being sick and cheated on.” “As a queer person I am more aware of the social and legal threats to my social network, our access to benefits, work, and respect.”
4. LGBTQI+ Specific Unmet Needs
Cancer Prevention and Care	“I was queer before cancer and I’m queer after. As a member of the transgender community I know all too well that we experience higher rates of discrimination and refusal of care than any other marginalized population. My poor cancer treatment experience informed my deep passion for pursing broader health equity for LGBTQI people in and outside of cancer care on individual, state, and national levels. We deserve better and we’re coming for it!!!” “My primary care doctor doesn’t seem very knowledgeable about HPV, anal cancer, or gay men’s healthcare needs.” “It’s [cancer care] just another place we [LGBTQI+ people] are kinda left out”
Psychosocial Support and Care	“So many of the resources I’ve encountered in the breast cancer world are heteronormative and focused on the feminine “appearance.” I didn’t really see any nonconforming gender resources at all during my experiences being diagnosed and treated for breast cancer.” “I just worry I may not have the access to specialized care because of biased doctors or anti-LGBT legislation.” “I face not only health discrimination as a gay person with cancer but also as a darker skinned Black man so there’s the constant cumbersome weight of anti-Black racism which rears its head with microaggressions to systemic oppression and flat-out disrespectful name calling.”
Sexual Health

Qualitative content from the open-ended questions were merged into one piece of content per participant for analyses.

Question 1: How has cancer changed the way you view yourself?

Question 2: How has cancer changed the way you view yourself as an LGBTQI+ person?

Question 3: How has cancer changed your intimate relationships with others?

Question 4: Is there anything else you would like to share with us about how cancer has impacted you?

Changes in Perceptions of Self

Overall, a majority (77%, n=1,593) of LGBTQI+ cancer survivors reported some type of cancer-related change in perception of self. Changes fell into three sub-categories: identity related changes, personal growth, and identity-related stressors and distress.

Identity-related Changes

Nearly a third (30%, n=606) of LGBTQI+ cancer survivors reported the sub-category identity-related changes. These changes ranged from individuals’ initial discovery of their LGBTQI+ identity, to mentions of the intersections of their identities, to changes in their willingness to disclose their identities. Often, survivors reported heightened awareness of their own mortality and how such awareness increased their willingness to unapologetically express their LGBTQI+ identities. One survivor stated, “I’m more conscious of mortality… if anything I have a more ‘don’t-give-a-damn attitude’ about my orientation. I am, who I am, deal with it.” Other survivors shared how going through their cancer treatment influenced and reaffirmed their identity formation: “I am more confident in my gender identity since I had my breasts and ovaries removed” and “Helped me be proud of being gay and happy that I can see myself as gay.” Survivors also frequently mentioned viewing cancer as a part of their identity and being able to relate more easily to other LGBTQI+ individuals with serious or life-threatening illnesses such as HIV. One LGBTQI+ cancer survivor shared, “I find it easier to talk to HIV+ friends. A life-threatening illness can unify hearts greatly.”

Personal Growth

Over half (52%, n=1,066) of LGBTQI+ cancer survivors mentioned cancer-related changes that revolved around their personal growth. Most commonly, survivors mentioned after going through treatment that they felt stronger, happier, more optimistic, empathetic, and resilient than they had previously: “I view myself as stronger than I did before cancer. I look at life with less fear. I see life more as an adventure.” Relatedly, survivors often mentioned—in the context of mortality—that they were forced to think about what was important to them and that they now intend to live their lives to the fullest extent. One LGBTQI+ cancer survivor shared, “Having a near death experience influenced me to take more inventory if what I do brings me joy and/or is fulfilling compared to pre-cancer.” Mentions of personal fulfillment were common, including finding meaning through advocacy and engagement with the LGBTQI+ community: “My poor cancer treatment experience informed my deep passion for pursing broader health equity for LGBTQI people in and outside of cancer care on individual, state, and national levels. We deserve better and we’re coming for it!!!”

Identity-related Stressors and Distress

At the same time, over one quarter (28%, n=576) of LGBTQI+ cancer survivors reported experiences of identity-related stressors and distress. Some survivors reported feeling loss of control, being less confident, isolated, scared, and alone. Frequently, survivors reported feeling “no longer whole.” One survivor shared these feelings stating, “Well, I’m alone now, and no one wants a broken old fag around.” Further, survivors sometimes reported prior experiences of stigma and discrimination within and outside of the healthcare setting. One survivor shared, “I am more aware of how insidious homophobia is in healthcare and it’s made me feel more aware of that - especially as I had it easier as an employed cis white man.”

Changes to Relationships

Changes in relationships were reported by 38% (n=786) of LGBTQI+ cancer survivors and fell into four sub-categories: relationship dynamics, strengthened relationships, weakened and lost relationships, and importance of support.

Relationship Dynamics

Nearly one in five (17%, n=355) LGBTQI+ cancer survivors reported changes in relationship dynamics. Changes in relationship dynamics were often driven by changes in perceptions of self, specifically personal growth. Survivors often mentioned an increased discernment when choosing which relationships to invest time and energy into—particularly in the context of relationships with individuals who were not supportive of their LGBTQI+ identities. One survivor shared, “I have learned that there are people I cannot trust and people I can,” sometimes described as “eye-opening.” Some LGBTQI+ survivors specifically mentioning their inability to talk to their non-LGBTQI+ support people about their specific needs and experiences: “I don’t talk to straight friends about this [dating after cancer].” This change also applied to survivors’ expectations of their intimate partners or lowering the priority of finding intimate partners: “I am no longer desperately looking for a partner. I have learned to love myself.”

Strengthened Relationships

Some changes in relationships (12%, n=253) ended up strengthening LGBTQI+ cancer survivors’ relationships. Survivors often mentioned that cancer brought them and their spouse, partner(s), friends, and family closer together. It was common for survivors to share that their relationships were now deeper, more loving, and more open than they previously had been: “I think the relationships I have now are stronger and more open.” For some survivors, being supported through their cancer resulted in them being more active in maintaining positive relationships with others. One survivor shared this sentiment by stating, “Yes, I reach out more to friends, family and people in general.” Some LGBTQI+ survivors even reported reaching out to estranged family or family that they previously ceased communication with to mend relationships: “I’m closer with my wife and my cousin. I talked to my estranged mother and sister.”

Weakened or Lost Relationships

However, going through cancer did also have negative impacts on some LGBTQI+ cancer survivors’ relationships (11%, n=232). Frequently, survivors mentioned that they did not feel supported by individuals in their lives, which ultimately weakened or broke their relationship with those individuals. One survivor shared, “I felt absolutely abandoned by many people. I feel less valuable to the people in my life. It took me a lot of time, not to feel so rejected.” Some LGBTQI+ survivors specifically mentioned being disappointed in the support they received from their chosen family. Further, some survivors reported the stress of their cancer causing their current partner to leave them, often resulting in divorce: “My wife divorced me during my treatment.” At the same time, many survivors reflected that changes to their health (reported below), particularly their sexual health, negatively impacted their intimate and romantic relationships.

Importance of Support

Without prompting, some LGBTQI+ cancer survivors (7%, n=140), detailed how important the support they received was to them. Survivors often mentioned how thankful they were for the support that they received from other LGBTQI+ individuals, their partner(s), and family. One survivor stated, “My LGBTQI+ friends have been very supportive.” Another shared, “Am grateful to all the people in my life who fought with me, encouraged me, and helped me in any way.” Some survivors specifically shared how thankful they were for people who were supportive of their LGBTQI+ identities, “I truly appreciate physicians and especially oncologists who are accepting of diversity.”

Changes to Health

Nearly half (47%, n=972) of LGBTQI+ cancer survivors reported changes to their health related to their cancer, however, changes in health were not explicitly asked through the open-ended questions. Cancer-related health changes were reported regarding physical, mental, sexual, and financial health that were often intertwined.

Physical Health

Changes to physical health was reported by 26% (n=538) of LGBTQI+ cancer survivors. Often changes in physical health were related to symptom burden, side effects, comorbidities, and physical changes to their body due to their cancer treatment. Almost all survivors who reported physical health changes mentioned them in a negative context including resulting in gender dysphoria and not meeting perceived LGBTQ+ body standards: “It has changed my body in very negative ways that have been difficult to process.” Frequently, survivors referred to physical changes to their body resulting in an increased negative self-perceptions. One survivor shared, “Left my body scarred. Lowered my self-esteem.”

Mental Health

Often tied to other health changes, 7% (n=155) of LGBTQI+ cancer survivors reported changes to their mental health due to their cancer. One survivor expressed how changes to their body impacted their mental health by sharing, “The mastectomy caused a lot of grief and loss. Feelings of body dysmorphia.” Feelings of anxiety and depression were common among survivors who mentioned mental health changes. One survivor shared, “Cancer made me more melancholy and depressed, the treatments affected my mood swings, and my desire to live my life this way has decreased.” Further, some survivors received new mental health diagnoses: “I have been diagnosed with PTSD from the experience.”

Sexual Health

Nearly one third (32%, n=660) of LGBTQI+ cancer survivors reported changes to their sexual health due to their cancer. Frequently, survivors reported reduced sexual function and perceiving themselves as less sexually desirable. These changes in sexual health at times left survivors feeling like they no longer met LGBTQI+ community expectations of individuals of their identity—this was particularly common among cisgender men and non-monogamous individuals. One survivor shared this sentiment by stating, “As a gay man that can’t ejaculate I feel less sexy.” At the same time, survivors frequently reported a lack of sexual desire and decreased sexual well-being due to their cancer: “My partner and I have no sexual relations anymore. She’s afraid to hurt me.” Further, single survivors often shared that their cancer and the impact on their sexual health had negative consequences for their future dating life. One survivor shared, “Makes me feel like I will not be of value to another man.”

Financial Health

Changes to financial health was reported by 3% (n=66) of LGBTQI+ cancer survivors. When financial health was mentioned, it was commonly mentioned in the context of the inability to work and the high cost of cancer treatments. One survivor shared, “My career and finances have been completely wrecked by cancer and other factors.”

LGBTQI+ Specific Unmet Needs

Though the open-ended questions did not ask about unmet needs, 6% (n=124) of LGBTQI+ cancer survivors explicitly mentioned LGBTQI+ specific unmet needs. Unmet needs commonly revolved around cancer prevention and care (4%, n=73), psychosocial support needs (3%, n=54), and sexual health needs (1%, n=18). Unifying across sub-categories, most survivors reported a need for LGBTQI+ specific resources and care: “I have no LGBTQ resources.”

Differences in Cancer-Related Changes by Age

Most sub-categories differed by age, with the youngest age group of survivors (i.e., 18-39) reporting more changes across categories in comparison to older survivors. Notably, LGBTQI+ cancer survivors aged 18-39 reported significantly more identity-related changes (48% vs 30% overall, p<0.0001; Table 4), personal growth (60% vs. 52% overall, p=0.008), and identity-related stressors and distress (38% vs. 28% overall, p=0.002). Young adult survivors also reported more experiences of strengthened and weakened relationship (18% vs. 12% overall, p=0.031; 20% vs 11% overall, p=0.002), as well as more changes to physical (33% vs. 26% overall, p<0.0001), mental (13% vs. 7% overall, p<0.0001), and financial health (8% vs. 3% overall, p<0.0001).

Discussion

A majority (N=2,069, 89.6%) of respondents from OUT: The National Cancer Survey responded with robust content to open-ended survey questions regarding how cancer has changed their perceptions of self, identity, relationships, and health. Our qualitative content analysis complements literature speaking to LGBTQI+ cancer survivors experiencing a wide range of cancer-related changes, and, when stratified by age, young adult (18-39 years) LGBTQI+ cancer survivors reported significantly higher amounts of change across nearly all sub-categories. These findings not only expand our understanding of how cancer impacts LGBTQI+ cancer survivors but also demonstrate the willingness of LGBTQI+ cancer populations to participate in research.

Changes in perceptions of self, including personal growth, identity-related changes, and identity-related stressors and distress were the most common types of changes reported by LGBTQI+ cancer survivors overall. Changes also significantly differed by age, with adolescent and young adult (AYA) cancer survivors reporting significantly higher changes in all three sub-categories. This finding can be grounded in the growing LGBTQI+ AYA literature in which young LGBTQI+ survivors experience a a variety of unmet needs including LGBTQI+ AYA psychosocial services.^22,23 Our findings suggest that most LGBTQI+ cancer survivors are experiencing growth and stress due to their cancer diagnosis and such changes are happening more frequently among AYA LGBTQI+ cancer survivors. These findings can be contextualized by the cancer-related post-traumatic growth and stress literature, which indicates an association between post-traumatic stress and growth among cancer survivors.²⁴ Within this literature, younger cancer survivors have been observed to have higher rates of personal growth than older survivors, which maps onto the breadth of change that occurs during emerging adulthood (e.g. in vocation, relationships, etc.).²⁵ Emerging adulthood is also an important life phase for many LGBTQI+ individuals, as they explore the significance of LGBTQI+ identity in a new life phase, where divergences from cis-heteronormative convention may be more salient than in earlier stages of life.^26,27 There is not yet literature that suggest LGBTQI+ cancer survivors experience any differences in post-traumatic growth or stress in comparison to non-LGBTQI+ cancer survivors,²⁸ and this study highlights the importance future research that examines how cancer survivors who are at the intersection of young adulthood and LGBTQI+ identities experience personal growth and distress during a socio-developmental life stage crucial to both LGBTQI+ and adult identity development.

Clinical Implications

LGBTQI+ cancer survivors in this analysis also frequently reported changes to their physical, mental, sexual, and financial health. While the open-ended questions analyzed asked specifically about changes to self and relationships, they did not ask about changes to health. This finding highlights the commonality of health changes and how important these changes were perceived to be by LGBTQI+ cancer survivors. These findings largely mirror emerging literature that has described LGBTQI+ cancer survivors changes to their sexual health, sexual functioning, and physical appearance.^29,30 Such changes impacted survivors perceptions of their LGBTQI+ identity and in turn how they perceive themselves to fit within the larger LGBTQI+ community (e.g., inability to ejaculate post-treatment).²⁹ Further, across all four types of health, AYA cancer survivors reported more change than their older counterparts. This finding is consistent with the emerging literature in which LGBTQI+ AYA cancer survivors experience increased risk of chronic health conditions, more sexual-related health needs, and elevated financial hardship, among other inequities.^31–35 Further, psychosocial support for LGBTQI+ survivors is needed and could mirror a recent framework for embedding psychosocial care into oncology for AYA survivors,³⁶ as LGBTQI+ AYAs reported the most distress in our study. these findings illuminate the need for deeper qualitative inquiry with AYA LGBTQI+ survivors to understand how to best address their unmet needs.

Many LGBTQI+ cancer survivors reported changes in their relationships. Most commonly, survivors reported changes in relationship dynamics and strengthened relationships. However, AYA LGBTQI+ cancer survivors reported weakened or terminated relationships more frequently then strengthened relationships. These findings largely align with the literature that suggest divorce is less frequently reported by cancer survivors of all ages.⁹ However, AYA literature suggests that AYA cancer survivors are at an elevated risk of divorce, often driven by the emotional and financial toll of cancer.¹⁰ Our findings, in the context of the literature, suggest that AYA LGBTQI+ cancer survivors may be particularly vulnerable to negative relationship experiences, which should be further explored in future research. In addition, individuals in our study often reported that non-romantic relationships and community relationships, which are particularly important for LGBTQI+ individuals’ well-being, were impacted by cancer experiences. ^37,38 Further, recent literature has suggested that that the strength of support provided to cancer survivors predicted greater post-traumatic growth, meriting future, specific exploration into how relationships and social support interplay with LGBTQI+ individuals’ cancer experiences.³⁹

Limitations

This study is subject to several limitations. First our sample was an online survey, which limits generalizability. Further, the qualitative content analysis sub-sample does differ from the larger OUT study, therefore, under-represents some identities, including those who were uninsured or on treatment at time of survey. Qualitative content was not collected using more in-depth qualitative methods such as interviews or focus groups, limiting the within-person depth. Some qualitative categories were not directly queried via the open-ended survey and represent categories that were self-generated by participants. These categories that were not directly queried appeared to be less frequently endorsed than explicitly queried categories, and thus our findings regarding Unmet Needs specifically should be interpreted with caution. Furthermore, we were unable to have study participants provide input on the qualitative findings or other means of engaging LGBTQ+ cancer survivors directly in the research process. Such limitations though are balanced out by the strengths of this study. Major strengths include the use of the OUT survey, one of the largest LGBTQI+ cancer survivor survey cohorts to date. Further, the use of rigorous qualitative methods to analyze quite robust open-ended response data provides crucial information in understanding the lived experiences of LGBTQI+ people impacted by cancer.

Conclusions

This analysis illustrates that LGBTQI+ cancer survivors experienced a wide range of cancer-related changes regarding their perception of self, identity, health, and relationships. LGBTQI+ cancer survivors commonly reported identity-related changes due to their cancer diagnosis, changes to their relationships, as well as changes to their health. Cancer-related changes were perceived to be both positive and negative, which aligns with the LGBTQI+ cancer disparities literature. This study highlights the extent to which cancer changed the lives of the LGBTQI+ cancer survivors in unique ways and illustrates the importance of LGBTQI+ specific cancer and survivorship care.

Table 5.

Content Analysis Sub-Categories By Age Group among LGBTQI+ Cancer Survivors (N=2069 participants, N=5179 codes applied)

Categories and Sub-Categories	Total (N=2069)	Age Groups (years)
		18-39 (n=166)	40-59 (n=918)	60-79 (n=1134)	80+ (n=164)	p-value
	N (%)	N (%)	N (%)	N (%)	N (%)
1. Changes in Perceptions of Self
Identity-related Changes	606 (30)	64 (48)	221 (27)	291 (28)	30 (30)	<0.0001 *
Personal Growth	1066 (52)	80 (60)	444 (55)	492 (48)	50 (50)	0.008 *
Identity-related Stressors and Distress	576 (28)	50 (38)	246 (30)	259 (25)	21 (21)	0.002 *
2. Changes to Relationships
Relationship Dynamics	355 (17)	29 (22)	153 (19)	163 (16)	10 (10)	0.039 *
Strengthened Relationships	253 (12)	24 (18)	111 (14)	109 (11)	9 (9)	0.031 *
Weakened or Lost Relationships	232 (11)	26 (20)	103 (13)	94 (9)	9 (9)	0.002 *
Importance of Social Support	140 (7)	14 (11)	54 (7)	66 (6)	6 (6)	0.3
3. Changes to Health
Physical Health	538 (26)	44 (33)	247 (30)	225 (22)	22 (22)	<0.0001 *
Mental Health	155 (7)	17 (13)	83 (10)	49 (5)	6 (6)	<0.0001 *
Sexual Health	660 (32)	47 (35)	273 (34)	317 (31)	23 (23)	0.1
Financial Health	66 (3)	11 (8)	37 (5)	14 (1)	4 (4)	<0.0001 *
4. LGBTQI+ Specific Unmet Needs
Cancer Prevention and Care	73 (4)	7 (5)	39 (5)	23 (2)	4 (4)	0.012 *
Psychosocial Support and Care	54 (3)	5 (4)	26 (3)	20 (2)	3 (3)	0.242
Sexual Health	18 (1)	1 (1)	8 (1)	9 (1)	-	0.9

Asterisks indicates p<0.05.

Percentage add up to more than 100% as multiple codes could be applied to each participant response.

Chi-squared tests and Fisher’s Exact tests were used to assess differences in sub-categories by age when appropriate.

Data Availability:

The data that support the findings of this study are available from the corresponding author upon reasonable request.