Watch your language: It's past time to include women with prostate cancer in our reluctant fold.
Ready to switch to the more inclusive 'people with prostates'?
By Howard Wolinsky
I get an email weekly reminding me to attend a support group for men on active surveillance for low-risk prostate cancer.
Then, it says “Welcome, brothers.” I wince at the reference to brothers. I’ve been meaning to say something about it.
I typically don’t go out of my way to be woke. But, brothers and sisters, I know that brothers is not the whole story with prostates and prostate cancer.
I know there are sisters--transgender women--who still have prostates and can get prostate disease.
The fact is men who have or formerly had prostates are not welcoming our transgender sisters. They may be a small group, but that’s no excuse not to welcome them, too.
It’s true that the vast majority of people with prostate cancer are men.
But not all. A small number of us are women, who underwent gender reassignment surgically or hormonally to become men or simply refer to themselves as women.
And those who undergo transgender reassignment surgery and hormonal treatment leave their prostates intact to avoid nerve injury and the like to save themselves from sexual dysfunction and to avoid incontinence.
We often refer to ourselves as “the reluctant brotherhood.” We need to expand that term and include transgender women: “the reluctant brotherhood and sisterhood.”
I have thought about this often when I write about men with prostate cancer. I knew about transgender women with prostates but did little to encourage debate. It’s time. It’s past time.
I am not the only one who has been insensitive.
I spoke to a European researcher recently who told me one of her students prepared a poster on research on prostate cancer for a meeting. An unidentified urologist-reviewer criticized the study for only referring to “men with prostate cancer.”
The time is overdue to reboot our language in the prostate cancer world. We need to welcome our transgender sisters to support groups to join with the brothers. We have room in our tent for this often unacknowledged group.
It may seem like it but we’re not running s men’s club. This is the “reluctant brotherhood and sisterhood.” Everyone in this game is reluctant, not just the brothers.
Most accurate terminology? For now, let’s try something better. Like “people with prostates.”
Do we have the will to change our language to acknowledge a minority within our ranks? Are you comfortable with that?
…
Back in the 1970s, I was a medical journalist at Florida Today. I covered a high-profile story about the travails of a transgender woman who, among other things, was trying to get a driver’s license.
But the DMV refused to help her because her birth certificate said she was a male with a different first name.
To get her license, she needed a certified statement from her surgeon in Casa Blanca, Morocco, confirming that the doctor had performed gender reassignment surgery on this Florida woman. I waited and waited on the phone with a translator and finally asked the doctor the question about why he hadn’t signed the papers to help his patient.
His answer was quick: “No comment.” Such is the life of a reporter.
(Things got more complicated as this transgender woman remarried her former wife who switched and became a transgender man. I think they appeared on the old Phil Donahue Show. Over the years, I moved on and lost track of them.)
The issues of equity and fairness surrounding transgender men and women still are works in progress as we and our language struggle with the concept of men becoming women, and women becoming men. These evolutions can sometimes feel like they are taking place in slow-motion.
These days, many of us identify ourselves with our preferred pronouns in social media and email signatures. Shouldn’t we do more?
…
The 2011 National Transgender Discrimination Survey found 61 percent of trans and gender-nonconforming respondents reported having medically transitioned, and 33 percent said they had surgically transitioned. About 14 percent of trans women and 72 percent of trans men said they don’t ever want full genital construction surgery intact prostates. Hormone therapy may be enough to satisfy that man or woman within.
In the case of trans women, this leaves intact a lot of prostates, which can be the target for cancer, benign prostatic hyperplasia (enlarged prostate), and prostatitis just like prostates in everyone else who has one.
***
When men are surgically reassigned, they undergo vaginoplasty, a surgical procedure during which the surgeon refashions the penis and testicles to create a functional vagina. Highly sensitive skin and tissues from the penis are preserved and used to construct the vaginal lining and build a clitoris, resulting in genitals with appropriate sensations. Scrotal skin is used to increase the depth of the vaginal canal. Penile, scrotal and groin skin are refashioned to make the labia majora and minora, and the urethra.
(Diagram from PC UK shows showing the prostate following gender-reassignment or gender-reaffirming operation.)
Why is do transgender women who undergo this surgery retain their prostates?
Writing in Quora, prostate surgeon Jonathan Heinlen, MD, explained:
1) Removal of the prostate can result in incontinence;
2) The prostate contains nerves that induce a pleasurable sensation with stimulation and transwomen interested in receptive intercourse may be interested in keeping these nerves;
3) The prostate *probably* doesn't have much gender reaffirming quality to it since it cannot be seen, and as such doesn't generate much dysphoria for most people.
Gender dysphoria is a sense of unease a person may experience because of a mismatch between their biological sex and their gender identity. This sense of unease or dissatisfaction may be so intense it can lead to depression and anxiety and have a harmful impact on daily life.
Women with prostates ought to undergo periodic prostate exams, PSA testing, biopsies, and all that AS jazz. I suspect this ritual and rigamarole of AS itself may result in major dysphoria.
….
In 2016, the Obama administration stated that Obamacare regulations explicitly prohibit anti-transgender discrimination from medical providers and insurers. So such discrimination is illegal.
Yet, on some level, we tolerate it.
Gender reassignment doesn’t spare the trans woman from the potential woes of having a prostate.
“Trans women and non-binary people assigned male at birth can get non-cancerous (benign) problems such as an enlarged prostate or prostatitis – but this is thought to be less likely than in cis men,” according to PC UK. (Cisgender describes a person whose gender identity and sex assigned at birth are the same. The word cisgender is the antonym of transgender.)
Prostate Cancer UK quotes one such woman: “Having male bits and pieces is not easy – it is a nuisance – but I have always accepted I am a trans woman.”
***
Going to a urologist can be a rough ride for any man, no matter their sexual- or gender-orientation.
B. R. Simon Rosser, PhD, MPH, a pioneering researcher in HIV and LGBT health at the University of Minnesota School of Public Health in Minneapolis, is a gay man who happens to be on AS. His husband, Bill, underwent a radical prostatectomy.
(B. R. Simon Rosser, PhD, MPH)
Rosser was diagnosed with low-risk Gleason 6 prostate cancer in 2016, at the age of 57, and went on active surveillance. His own father had been diagnosed with early-onset, aggressive prostate cancer at age 62 and died 6 years later.
"Bill (Rossner’s husband) was diagnosed about 5 years before me and had a radical prostatectomy. When I saw the sexual and incontinence effects of treatment, and its impact on our sex life, that's when I started researching sexual and urinary rehabilitation for men like us," he said.
To Rossner’s knowledge, there was nothing in the scientific literature about gay and bisexual men and prostate cancer in the 20th century. The first tiny studies didn't appear until 2001, he said.
The public health researcher, who is also the co-editor of the 2018 book, Gay & Bisexual Men Living With Prostate Cancer: From Diagnosis to Recovery, received $2 million in funding for the first large study from the NIH in 2017 to look at how prostate cancer affects gay men and how their urologists treat gay men with prostate cancer.
That said, trans women and their prostates are not a big part of the discussion and research on prostate cancer and other conditions.
***
Rosser said he has found urology to be an "incredibly heteronormative" medical specialty, meaning those in the field tend to just assume everyone is or should be straight.
New research confirms this. In a recent survey of 112 urologists in the U.S., most providers said they do not ask about sexual orientation, are more comfortable discussing sex with heterosexual patients, lack knowledge about sexual minority patients, and feel inadequately trained in sexual minority healthcare.
Rosser, who I interviewed for my column in MedPage Today, said talking to patients may not be most urologists' strong suit: "A field that is so dominated by men will do some things that may be off-putting to sexual minorities." (The American Urological Association recently reported that for the first time just over 10% of urologists are women.)
Rosser continued: "So, we heard participants in our study say their first visit to the urology clinic felt like stepping into a men's locker room. In the waiting room, the television is on a sports or conservative channel, the magazines are about sports, the men waiting are all silent. It was so heteronormative that anyone who is not heterosexual or a jock may feel alienated."
The research shows many urologists do not want to discuss sexuality with straight or gay patients. I can vouch for that as a straight man with low-risk prostate cancer who has seen several urologists over the past decade. When I had some sexual questions, the urologists referred me to a nurse practitioner who specialized in these issues.
Straight or gay or bisexual, prostate cancer is a complicated disease with a mix of physical and psychological factors. It stigmatizes because it’s a combustible mixture of sexuality and cancer issues.
Transgender women have extra problems: They are subject to embarrassment and harassment as medical office staff ask for their birth names, the names on their driver’s license, or classify them as men rather than asking about their gender identification.
In a heterocentric culture, it is difficult for those who are non-heterosexual to be seen and heard. Doctors and their staff members need to learn to be sensitive to these differences.
***
What should we do?
From now on, I will try to refer to a broader population of “people with prostates” or “people with prostate cancer.” Such shifts in language can be jarring but they can do happen.
I invite all the prostate patients, urologists, researchers, and advocates to make the changeover to more accurate language. We should welcome brothers and sisters to our reluctant neighborhood.
Let me know what you think. Please answer my survey on the brotherhood and sisterhood of prostate cancer: https://www.surveymonkey.com/r/MQLMFCN Individual responses are confidential.
Do you want to see where active surveillance is heading? Do you have some views you want to share?
Active Surveillance Patients International and the AnCan Virtual Support Group for Active Surveillance and other leading advocates and doctors are holding a free webinar, "Your Voice in the Future of Active Surveillance," on April 22 at 11 a.m. Eastern/4 p.m. GMT.
Sign up here : https://zoom.us/meeting/register/tJEtfuuqrzwtHNPuqzkigx65YBk8vV-teUdy We need you to express your views.
Go to the Barniskis Room: https://www.gotomeet.me/AnswerCancer Or call +1 646 749 3129 Access Code: 222-583-973 (Barniskis Room)
I agree with Howard wholeheartedly. I must admit I never even thought of the issue under consideration. I think it is an easy issue for people who embrace the idea that individuals have the right to determine their own sexuality and change, when it is feasible (not hampered by, especially, financial considerations), just as it is easy for people who have the opinion that women should have the right to determine, when pregnant--accidentally or by choice, whether they wish to go through with the pregnancy. So, in the future, people with prostates (and pc) it shall be for me.
Allan Greenberg
Thanks for this important perspective, Howard. Just as our understanding of prostate cancer, its diagnosis, and its treatment have changed over the years, it's important that we pay attention to our language as well. I'm as guilty as anyone of lazily referring to "men with prostate cancer," but I agree that we need to change our language as our patient community expands to includes transgender women.