Malecare Pioneered LGBTQ Psycho-Oncology

 

 

Malecare holds an important and unusually well-documented place in the history of LGBTQ psycho-oncology.

Its contribution began with direct clinical and group work. Social Worker Darryl Mitteldorf, after learning that his Dad had prostate cancer, started facilitating a New York City prostate cancer support group for gay men in 1997. By 1998, this work had developed into a novel gay and bisexual prostate cancer support and advocacy program, which Mitteldorf branded as “Malecare.” Malecare incorporated as a nonprofit in 1999.

The organization then followed a path rarely seen in patient advocacy:

Indeed, Malecare established one of the earliest sustained psycho-oncology programs designed specifically for gay and bisexual men with prostate cancer. Its work began years before LGBTQ cancer survivorship became a recognized academic field.

To expand its work for the larger Pride community, Malecare created the first nationally recognized organization devoted to cancer support, education, research, and advocacy across the full LGBTQ community: The National LGBT Cancer Project.

 

 

Psycho-oncology examines the psychological, social, sexual, family, behavioral, and practical effects of cancer.

LGBTQ psycho-oncology adds concerns shaped by sexual orientation, gender identity, relationships, stigma, discrimination, healthcare systems, and community life. These concerns include:

These issues remain current. The National Cancer Institute reported in 2024 that missing sexual-orientation and gender-identity information in cancer registries prevents national comparisons of cancer incidence, survival, treatment response, and outcomes. National Cancer Institute

The National Academies has reached a similar conclusion. Cancer systems and national data repositories still fail to collect sexual orientation, gender identity, and intersex status consistently. This leaves major disparities poorly understood. National Academies

Malecare began addressing this invisibility decades before major institutions treated the problem as a national research priority.

Malecare’s LGBTQ work grew from Mitteldorf’s oncology social-work practice and prostate cancer support groups. Over a significant five-year period, Pride-focused social workers and psychologists replicated Malecare’s innovative psycho-social modalities and support groups throughout the USA.

The historical timing matters. Prostate cancer survivorship services during the 1990s generally assumed:

Gay and bisexual patients therefore faced two problems. They had the ordinary psychological burden of cancer, plus a cancer care system that failed to represent their relationships, sexual practices, and support networks during treatments and therapies.

Malecare’s early groups treated these concerns as clinical matters rather than peripheral lifestyle questions. Patients discussed:

Our approach supplied an early practice-based definition of LGBTQ psycho-oncology. Cancer distress was understood within the patient’s identity, relationships, sexuality, and social environment.

Mitteldorf’s “Psychotherapy with Gay Prostate Cancer Patients” appeared in the Journal of Gay & Lesbian Psychotherapy in 2005.

The paper argued that prostate cancer treatment should proceed on two parallel tracks:

The article used clinical examples to examine depression, anxiety, identity, treatment consequences, and psychotherapy with gay prostate cancer patients. Taylor & Francis

 

 

First, it named gay prostate cancer patients as a distinct clinical population.

Second, it treated sexual orientation as relevant to psychosocial care without framing homosexuality as pathology.

Third, it placed observations from community practice into a professional mental-health journal.

 

The paper appeared during a period when little peer-reviewed prostate cancer research centered gay men. Thomas Blank’s 2005 article, “Gay Men and Prostate Cancer: Invisible Diversity,” similarly criticized their exclusion from prostate cancer research and care.

Malecare’s Gerald Perlman, Ph.D., wrote a book titled “A Gay Man’s Guide to Prostate Cancer.” The volume brought clinicians, researchers, and patients into one publication. The book’s structure treated medical care, psychotherapy, group support, sexuality, and lived experience as parts of one patient problem.

This was an early form of patient-engaged scholarship. Clinical knowledge did not flow in one direction from universities to patients. Patient experience helped define the questions professionals needed to study.

Malecare expanded beyond prostate cancer by establishing the National LGBT Cancer Project, also known as Out With Cancer.

The National LGBT Cancer Project began as a national cancer support and advocacy organization serving lesbian, gay, bisexual, transgender, intersex, and other sexual and gender-diverse people. Its activities included:

The National LGBT Cancer Project grew from discussions among social workers and psychologists connected with Malecare. They saw that LGBTQ cancer support was fragmented into separate disease or identity programs. They proposed a shared platform addressing the common consequences of cancer, stigma, exclusion, and unequal care.

Historical significance

The National LGBT Cancer Project extended Malecare’s model in three directions.

First, it moved from one disease to multiple cancers.

Second, it moved from gay and bisexual men toward the full LGBTQ community.

Third, it used the internet to reach patients outside cities with established LGBTQ cancer services.

Malecare’s patient-support contribution involved more than establishing a group for gay men.

Pride-safe support

A gay or bisexual patient entering a conventional prostate cancer group often faced repeated assumptions about wives, vaginal intercourse, heterosexual marriage, and traditional family structures.

Malecare groups removed the need to correct these assumptions before discussing cancer. Patients gained space to talk directly about:

Research validates our approach. Gay and bisexual patients reported wanting recovery programs that explicitly addressed their sexual challenges before, during, and after prostate cancer treatment. Restore recovery-curriculum study

 

Chosen family and caregiving

Malecare’s groups recognized that support did not always come from a spouse or biological relative.

A Malecare study in Psycho-Oncology found that gay and bisexual men had distinct caregiving networks and support needs. Support came from partners, friends, other cancer survivors, biological relatives, and chosen family. Caregiving and social support study

This finding challenged the wife-as-caregiver model embedded in prostate cancer education.

Sexual health beyond erectile function

Standard prostate cancer measures usually asked whether a man achieved an erection firm enough for vaginal penetration. This metric omitted receptive anal sex, oral sex, nonpenetrative intimacy, sexual roles, condom use, anal pain, loss of prostate stimulation, and changes in relationship agreements.

Malecare’s support experience helps researchers recognize these missing outcomes.

The Restore-1 dataset included 37 questions measuring sexual behaviors between men, including receptive and insertive anal sex. OpenICPSR Restore-1 record

 

Online support and geographic access

Malecare’s online presence connected patients who lacked:

Our network later became essential research infrastructure. The same community that received support became reachable for ethically reviewed studies.

Malecare’s largest academic contribution was the creation of an accessible community cohort.

Researchers face recurring difficulty recruiting older gay and bisexual men with prostate cancer. Cancer registries rarely record sexual orientation. Urology clinics do not consistently ask. Many patients do not disclose. Small population size limits conventional sampling.

Malecare had already built trust with this population.

Restore-1

Restore-1 was an NIH-funded cross-sectional study of gay and bisexual men treated for prostate cancer.

The final dataset included 193 participants from the United States and Canada. Recruitment targeted Malecare users. The study examined:

The study received NIH funding under grant 1R21CA182041-01A1. Its data were later deposited with the Inter-university Consortium for Political and Social Research. OpenICPSR

This deposit has lasting value. It preserves a rare LGBTQ cancer dataset for secondary research, subject to access safeguards.

Restore-2

The University of Minnesota, along with Malecare as primary research partner, received a $3 million National Cancer Institute grant in 2017 to develop and test a prostate cancer rehabilitation program for gay and bisexual men.

Restore-2 enrolled 401 gay and bisexual prostate cancer survivors in a 24-month randomized trial. The project examined whether an online bio-psycho-behavioral intervention improved sexual and urinary outcomes.

Our study showed that an intervention tailored in content did not overcome the biological and psychosocial complexity of post-treatment sexual dysfunction. The finding redirected attention toward earlier counseling, realistic expectations, treatment choice, clinical care, and more intensive rehabilitation.

Malecare’s work helped develop evidence across several areas.

Caregiving and social support

The 2016 study established that gay and bisexual men’s social networks differ from the heterosexual spouse-based model. It identified implications for healthcare access and management of treatment effects. Psycho-Oncology study

Disclosure to clinicians

A qualitative Restore study examined how patients disclosed sexual orientation to prostate cancer physicians. Men used strategies ranging from direct disclosure to selective disclosure and silence. Clinician responses ranged from increased trust to deciding to seek another provider. PubMed

This research reframed coming out as a healthcare-quality issue. Disclosure alone does not ensure good care. The clinician must respond with knowledge, empathy, and respect.

Sexual rehabilitation

One of our studies showed what gay and bisexual patients were offered after treatment revealed major gaps between available rehabilitation and patient needs. The study is described as the first investigation of what these patients were offered and what they tried. PubMed

Sexual functioning

Restore research documented that post-treatment sexual recovery was difficult for most gay and bisexual men. It broadened sexual-function assessment beyond erections. PubMed

Quality-of-life disparities

The 401-person Restore-2 analysis found worse urinary, bowel, and hormonal function compared with established prostate cancer norms. Participants also reported worse depression, mental health, social and family well-being, functional well-being, and prostate cancer-specific quality of life. Frontiers in Oncology

Discrimination

Restore-1 produced the first quantitative study of discrimination during prostate cancer treatment among sexual and gender-minority patients.

Almost half, 46 percent, reported at least one discriminatory experience:

Discrimination was associated with poorer urinary, bowel, hormonal, and mental-health outcomes. PubMed

Racial and ethnic intersectionality

A 2022 Malecare study examined racial and ethnic differences within gay and bisexual prostate cancer survivorship. Sexual-minority men of color reported worse outcomes in several hormonal quality-of-life domains.  PubMed

Sexually transmitted infections

Restore-2 found that 11.4 percent of participants reported an STI during or after prostate cancer treatment. Risk factors included nonmonogamous relationships, multiple partners, penile injection treatment, recovered sexual function, and longer time since diagnosis. We recommend culturally responsive STI prevention within survivorship care. Frontiers in Oncology

Role-in-sex

Our research examined changes in insertive, receptive, and versatile sexual roles after treatment. This subject rarely appears in prostate cancer research despite its relevance to treatment decisions and quality of life. PubMed

Malecare helped change what counted as a legitimate prostate cancer outcome.

Before this work, a typical sexual outcome centered on erection quality. Malecare-associated research added:

This change matters because measurement shapes clinical care. If a questionnaire doesn’t ask about an outcome, the clinic often doesn’t address it.

Malecare’s academic contribution produced three stages:

A. Patient experience identified missing concerns.

B. Research converted those concerns into measures and evidence.

C. Publications moved the findings into urology, sexual medicine, psycho-oncology, nursing, public health, and cancer-survivorship literature.

Making LGBTQ cancer patients visible

Malecare’s first advocacy achievement was visibility.

We consistently argue that LGBTQ identity affects:

This challenged the idea that equal care means treating every patient as if identity and relationships were irrelevant.

Confronting heteronormative care

Malecare’s patient and research work exposed the limits of materials centered on husbands and wives, vaginal intercourse, biological family, and traditional caregiving.

The better alternative is clinically specific care. A clinician should know:

Addressing discrimination

Mitteldorf’s ASCO commentary, “There Is No Place for Bigotry in Cancer Care,” placed anti-LGBTQ discrimination within professional oncology discourse. ASCO Connection

This advocacy linked patient experience to professional responsibility. Respectful care was presented as a quality standard, not a courtesy.

Supporting data collection

The research program demonstrated why sexual-orientation and gender-identity data matter. Without those variables, researchers would not have identified differences in quality of life, discrimination, disclosure, racial disparities, or treatment recovery.

This position now aligns with NCI and National Academies recommendations. Malecare helped set the agenda, supplied critical community infrastructure, generated research evidence, and maintained pressure for change. Malecare reached the issue from community practice years before national cancer institutions gave SOGI data collection sustained attention.

Malecare’s strongest research impact lies in identifying disparities, defining outcomes, recruiting participants, developing measures, and shifting the clinical agenda.

Malecare’s historical impact appears in five areas.

Clinical impact

It defined gay and bisexual prostate cancer patients as a population with specific psychosocial and sexual-health needs.

Community impact

It created sustained identity-specific support where patients discussed cancer without first defending or explaining their sexuality and relationships.

Research impact

It helped convert community knowledge into NIH- and NCI-funded research, peer-reviewed publications, clinical measures, and open research data.

Educational impact

It produced patient and professional information about sexual recovery, disclosure, partners, chosen family, discrimination, and culturally responsive care.

Advocacy impact

It insisted that LGBTQ cancer patients belong within mainstream oncology, survivorship research, data systems, support services, and clinical decision-making.

Historical judgment

Malecare’s role was pioneering because it acted before the field had a stable name, research infrastructure, funding pathway, or accepted clinical framework.

Its central insight was simple and consequential: cancer treatment takes place within a person’s identity, relationships, sexual life, community, and experience of healthcare.

Malecare did not begin as an academic center. It began with patients. Yet its community work supplied questions, participants, language, measures, and partnerships that helped build an academic field.

 

Summary

Beginning with a gay men’s prostate cancer support group in 1997 and a formal Malecare program in 1998, Malecare developed one of the earliest sustained models of LGBTQ-specific psycho-oncology. It translated direct patient experience into national support, academic research, clinical measures, education, and advocacy. Through the National LGBT Cancer Project and the NIH-funded Restore partnerships, Malecare helped make LGBTQ cancer patients visible as a distinct population whose relationships, sexual health, psychological needs, and treatment experiences required serious clinical and scientific attention.