The Way It Is: Prostate Cancer and the Treatment Aftermath Now

June 10, 2010


What Dean and I went through was frightening and isolating and confusing.  How is it, these days, getting diagnosed and dealing with prostate cancer treatment, especially with libido-draining hormone ablation treatments?  It’s instructive to ask what wasn’t there way back in 2002, when Dean heard the words “You have prostate cancer,”  and I caught my breath.

*ListServs hadn’t arrived yet–There were probably chatrooms; but not very many people were chatting about treatment or about the aftermath– E.D. or libido or continence–either on or off the internet. The fear and social stigma having, these days, abated, Us Too, just to cite one organization, maintains web addresses specific to many topics and populations:  seeds (seedpod), cryo (iceballs), prostate cancer and intimacy (pcai), to name a few. For a more complete list, see my website (www.victoriahallerman.com).

*Inclusive–Male/Female–Support Groups never felt like a comfortable option to us.  Man to Man and Us Too existed, but I don’t think the outreach was sufficient to encourage either of us to come to a chapter meeting.  Why?  Because everything surrounding prostate cancer was so hush-hush; not that men–and urologists–are entirely “out” about it today, but the comfort level is sufficient to draw more people to meetings and the dialogue is generally freer in these meetings than it was even five years ago.

*To expand upon that point, the dialogue about prostate cancer and treatment wasn’t as brave or open as it is now.  Dana Jennings in the New York Times spares none of his readers the details of treatment and post-treatment life, both in his blog and on the page.  Why is that?  Well, for one thing, it’s okay for men to discuss E.D., incontinence, even libido in public without feeling emasculated.  In fact, the word “emasculated” is offensive and totally obsolete.  Eight years ago, if I was lucky enough to stumble on a discussion of male sexuality, it focused on E.D., entirely ignoring libido.  The two were somehow one and the same, even to doctors, who saw things purely in terms of mechanics.  Men who have undergone prostatectomy often emerge with E.D., but with intact libidos, whereas radiation and/or hormone ablation patients may be challenged both mechanically and mentally.  This is now recognized.

*The dialogue is also more inclusive:  wives and partners are considered part of the treatment population, not just bystanders or caregivers.  It was maddening, when Dean went through treatment, to be told I should take care of myself, “for his sake…” that is, so I could be a more effective and supportive caregiver.  I think there might have been one organization for partners, but now there are many (Yahoo maintains one, The New Prostate Cancer Infolink hosts several different forums for women on various topics, and of course so does Us Too).

Where does this leave us?  A recent visit to Amazon.com yielded 7,135 book titles for breast cancer and 3,567 for prostate cancer.  Prostate cancer has a long way to go before it becomes as well-organized well-funded and well-supported as its sister disease, but we’re on our way.

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Chemical Castration and Prostate Cancer:The way it was

May 7, 2010

The Way it Was
I first heard the words “chemical castration” from my orthopedic surgeon. We were chatting, and he asked after my husband. This was about a year after Dean’s diagnosis (prostate cancer) for which he’d been treated with a combination of Androgen Deprivation Therapy and radioactive seed implantation. ADT is chemical castration. By the time the orthopedist dropped it casually into our conversation, I/we pretty much knew that Dean had, in essence, been castrated. What else is a systematic shut-down of the body’s testosterone?

And yet it shocked me to hear these words.  Why did I have to hear them first from a doctor friend in casual conversation? The urologist who first treated Dean had assured him that eventually his life would come back to normal. He’d been vague about the treatment aftermath, and we should have asked more questions, but we were scared, so we just went along.

By the time my intellect caught up to what my gut already knew, there was no doubt that our lives together had changed. First, there’d been the hot flashes, the lethargy, the passivity of a body learning to live without a hormone that has defined the self. That’s what testosterone does for men, as estrogen, progestin and oxytocin do for women. But we women are prepared all our lives for “the change,” which happens slowly, beginning in peri menopause, and ends a few years later. Men who undergo chemical castration, with the final unkind outcome of erectile dysfunction and low– or no–libido (desire), often know little or nothing about possible consequences going in.

Artificial andropause (my personal definition of ADT) is chemically induced via pills and injections, and effective in only a few months. Because testosterone encourages prostate cancer growth, these treatments are part of the arsenal doctors have assembled to halt PCa or slow it down. Some men receive ADT when their cancer returns; others receive it in late age when radiation or surgery are not viable options. A third less common use, to shrink the prostate in preparation for radioactive seed implantation, was the strategy in Dean’s case; an unwise one, given his age (he was young enough for the best alternative, prostatectomy) and the size of his prostate (90 cc’s, so huge that the ADT actually failed to shrink it sufficiently prior to seed placement). That we didn’t do more research is our regret, one we’ve shared and dealth with via writing and publication (How We Survived Prostate Cancer: What we did and what we should have done, Newmarket Press, 2009).

When we emerged on the other side of treatment, we both had changed, and I was beginning to question whether we had a marriage at all. While ADT went on, not only did we not touch each other, but it seemed that touching of any kind was, for him, repulsive. An insomniac to begin with, he was up all night, those long nights. Between the aftereffects of radiation (burning, surges) and the results of ADT, he was a mess. He wanted to sleep alone, and so my mattress in the attic became my full-fledged apartment. That’s when I began to wonder what the difference between roommates and marriage partners really is. I cried myself to sleep most of those nights.

Many marriages break apart at this juncture; there is research to support the idea that partners of men treated for PCa are often more depressed after treatment than the men themselves. Our marriage didn’t break up. I kept a journal which became the book, a way of talking to the world and to my husband. Dean’s voice entered the narrative and it became ours, part of the new normal we’ve been searching for ever since cancer upended things.

In those long-ago days (8 years ago) hardly anybody was talking about aftereffects of treatment. Support groups and websites existed, but the general narrative was, “Be thankful cancer has been beaten.” Quality of life was on the back burner, because the whole idea of surviving cancer was so new. The effects of treatment, especially hormone blockade, went undiscussed in many doctors’ offices. That’s why “chemical castration” was new to me as a concept a year after my husband had undergone it.

Another reason for this silence is official ambivalence. It must be difficult for urologists to know how profoundly the lives of patient and partner will change, especially if these urologists happen to be men, as most are. Since elemental ideas of manhood–on the street, at the office, wherever–are bound up  in the eyes of society with sexuality and sexual performance (we all know that “potent” has many meanings) the men who receive ADT and the doctors who administer it have, until recently, resorted to a complicit “Don’t ask, don’t tell.”
Those days are gone, I’m pleased to say, and tomorrow I’ll say why I think that’s true.  Stay tuned.
(read The Way it Is tomorrow).


Marital Status?

April 22, 2010

Recently, at the suggestion of a security-minded friend, I changed some of the info available about me on Facebook. For example, I had listed myself as “married,” and she pointed out that that info wasn’t necessary. I deleted “married,” and the next day facebook announced to the world that I had “changed my marital status.” I freaked. My marriage is precious to me, and the last thing the author of a book on surviving prostate cancer and staying married wants is for the world to think that my marital status has changed.
On a recent interview Dean and I did for The People’s Pharmacy (www.peoplespharmacy.com. show # 765), Dr. Mark McClure noted that prostate cancer diagnosis and treatment can either drive a couple in different directions or bring them closer together.
Ultimately, we were brought together, but it was dicey for awhile; that’s why I wrote How We Survived Prostate Cancer, because I didn’t just want to physically survive it, I wanted to survive it with our marriage intact.
The issues that surround prostate cancer are famously touchy, not the least of which is erectile function and continence. Other things lay in wait for the innocent couple, such as depression, loss of identity, loss of libido–it’s a terrifying list.
My marital status is still “married;” we can say that, because we have redefined what marriage is for us. We have given each other the room to grow and change and, yes, survive. I suppose I am still touchy about the notion that I have “changed my marital status.” More precisely, I/we have changed the nature of what we call marriage. I wonder who else out there might feel this way?


April 17, 2010

My book, How We Survived Prostate Cancer:  What we did and what we should have done, has been out a little over a year.  The book has a life of its own; it has already helped quite a few people sort out the tricky issues surrounding treatment and its aftermath–especially as a couple.  When I was writing it, more than once I–we–said, “If only one person finds this book helpful, it has been worth all the effort…”  We’ve had the reward of hearing from many strangers and not a few friends for whom the book has made a difference.

Therefor, celebrate with Dean and me the second year of this book’s life.  The Graedons, a couple who host  one of my favorite radio shows, The People’s Pharmacy, originating out of UNC in North Carolina, interviewed both of us via satellite in January.

The interview goes live today, saturday April 17 on WUNC (available via the web at www.wunc.org). It will be broadcast at 3 PM, with a podcast available from wwwpeoplespharmacy.com on monday (show #765). The moment it is available on the PP website, there will be a link to victoriahallerman.com

The show will also appear on radio stations throughout the country (see affiliate list on http://www.peoplespharmacy.com).

An interview with Dr. Ablin, one of the discoverers of PSA, who wrote a controversial Op Ed in the New York Times about the subject, and whose editorial I blogged about in this very column, will also be posted on http://www.peoplespharmacy.com, if you’d like to follow the controversy.

Join with us in celebrating what this book’s mission is:  to share the news about the effects of PCa and treatment, for individuals and for couples. Let us know what you think.  More importantly, please pass the news on to anyone you think may find it useful.

It is fitting that this program airs in April; this month we are celebrating Dean’s 7th anniversary free of prostate cancer.

Thanks for listening–
Vicki & Dean


Depression and Prostate Cancer

April 7, 2010

In NYC where I live, there’s a sign on the side of a building–on West 72nd Street, to be exact– which claims that “Depression is a flaw in chemistry, not character…”  It is, in my opinion, obvious that depression is NEVER  a flaw in character–what an absurd notion.  But what about the reverse; is it always a flaw in chemistry?  IS IT A FLAW AT ALL?  If it is one, then we must rush to correct it; but perhaps the depressed person–for example, the prostate cancer survivor or his partner–is simply mourning for what is lost, coping with a new and scary landscape, searching for a new identity.  

There has been much recent flap lately in PCa circles about how to cope with the depression that often follows treatment.  Whatever treatment it was:  prostatectomy, seeds, beam radiation, cryo, chemo, hormones, proton beam, even HIFU, it is likely to have changed forever  the way a man lives and experiences himself as a sexual being.  Then there’s the flip-side depression:  the partner’s.  What do you do when you’re the one left back on shore, the one whose body hasn’t forever been altered?  The one, perhaps, whose libido is still active?

Some people are turning to antidepressants, and some doctors are advocating this kind of treatment.  On the man’s side, the fact that many such drugs hardly enhance erectile function should certainly be discussed.  Beyond this, however, what is there in our culture that spurs us on to medicate everything?  

Perhaps the way to cope is to go running or listen to music or redefine yourself as you are now.  Join a community of others who have suffered the same way.  Reach for the person on the other side of the room–or the bed; and don’t be afraid of who you are now. Depression may just be the bridge to the next part of your life.  That’s what I’d say to anyone, post prostate cancer, who reaches first for a bottle of pills.


If He Were a Tree

April 1, 2010

Who Are We Now?

The fifteen-year-old pussywillow in our side yard keeled over last month, a victim of heavy snow. It lay prone for several weeks, having crushed the park bench that sat beneath it, until my neighbor with a chainsaw managed to render it into firewood. I helped collect and break the branches–called “whips,”–blooming with furry “catkins” despite the tree’s demise. I saved as many branches as I could and gave a number away, knowing they root easily in water. This forty foot tree, in fact, came from a rooted branch I’d bought at a long ago farmer’s market. This week my own cuttings at last took root, and I’ll plant them soon; I’ve heard recently from a number of friends “It’s got roots, even leaves!” All this and the tree itself is hardly dead. Two or three “whips” from the twelve-inch severed trunk have already sprouted.

Who knows what shape it will take in its new incarnation? Incarnation is a funny word to use in a botanical context, with its implications for flesh (carne is Latin for meat), so perhaps resurrection, is better, this taking on of a new form.

I wish it were as easy for humans to undergo radical physical change, but we’re more complicated than trees, having, among other things, memory and consciousness. Oh yes we rise beyond health emergencies and treatments–or dismemberments–of various kinds. My husband, for example (he’s always my first example when it comes to health) has survived so many alterations: juvenile macular degeneration, the loss of a third of his colon to emergency appendectomy, necrosis of bone in his knee, the death and rebirth of six inches of nerve tissue in his arm and, of course, prostate cancer, treatments which pretty much levelled his libido and destroyed erectile function. He lost urinary function for a while–that’s fairly typical, but it returned with the help of acupuncture and drugs, and has remained intact ever since. Our intimate life together changed in ways we’re still trying to sort out. I wrote a book to try to heal it. Sometimes I think of that book as a love letter, and sometimes it’s a letter to the world and to all of the confused partners of men who have suffered these kinds of treatments and are wondering, who are we now?

If Dean were a tree he wouldn’t remember the branches taken away, or what it felt like to stand with those branches forty feet in the air. Something unconscious and innocent–call it the impulse towards life, is healing the intact roots in my side yard right now. And eight years after cancer, aware as we are of who we once were, we lie down together, starting each time all over again, and taking nothing for granted.


A Woman Joining Man to Man–Alone

March 17, 2010

As far as I can tell, I’m a pioneer: the first woman in my chapter of Man to Man (prostate cancer support group) to join by herself. It took me a lot longer than it should have, considering the fact that my husband had been diagnosed and treated for prostate cancer almost three years before I stood up in front of a group of almost all guys and told our story.

In those days, Dean was still resistant to the idea of a monthly meeting. Prostate cancer was behind him and he wanted it to stay well to the rear. But we had changed, and it was cancer that had done that to us, generating questions like, “How do we reinvent intimacy?” “Who am I now?” “Why [in my case] am I so lonely?” Pragmatic questions about new forms of treatment, and what to do if cancer were somehow to return I hoped, would be discussed in depth, with updates on the various treatment options into the bargain.

There were that night, and are to this day, other women, but none of them had come alone. The ones who come do so to support their husbands, thanks to the presence of a nurse and trained group facilitator (a breast cancer survivor herself)–the wife of the group’s consultant urologist. Eventually I pursuaded Dean to start coming–“You’ve got to be my date!” And so, he’s been there next to me on the second monday of every month except July and August for three years now. If it were up to him, he’d stay home, but he knows that cancer changed both of us and our marriage (if you want to know more about this, read my book, How We Survived Prostate Cancer: What we did and what we should have done. Dean’s voice is all through it. At first, when I began writing it, he kept his distance, but thanks to a handy tape recorder, he’s had lots to say.

In part I joined the meeting because, at the three year point I was actively writing this book, and Man to Man has a research dimension for me. But if there had been no book goading me to join, I’d be a lot sadder and more confused and certainly more ignorant. The big questions in paragraph 2 above come up in an oblique sense occasionally–everyone is scared of them, I sense. There’s plenty of practical information to be had, and then there are the blessings. (I would have hated to call them this once, because I was so angry at cancer and at life).

Blessing #1: We’ve made good friends in the group we hope to keep for life.

Blessing #2: Others come who just received a diagnosis. These are the smart ones who didn’t wait three years. We get to ease their confusion and terror and give them a wealth of perspectives on the various treatment options. There is something really healing about this process–that our suffering was not wasted.

So, to anyone out there–especially women–who are wondering what to do, I say join a support group even if you have to go alone. Even if your partner isn’t ready, and the group has that forbidding title “Man to Man.” Get in your car or on the subway or bus, whatever. Strength is in community.