Personal Perspective -- The Good Patient: Fighting Anal Cancer
Five years ago, at age 50, my doctor suggested I get an anal Pap smear. "What's that?" I asked. She told me it was a test for precancerous lesions caused by HPV (human papillomavirus), and that any gay man with HIV should have one done on a regular basis. I agreed and was surprised that she was able to give me the results in about ten minutes: abnormal cells had been found.
There were a few options to deal with them, and she told me there was a rectal specialist on site who could treat them with something called Infrared Photocoagulation. Since I've always been aggressive in treating any health problems, I made an appointment immediately. The inpatient procedure was relatively easy, and a few lesions were taken care of. Or so I thought.
In August 2007, I found blood in my underwear after sex. And not just a little blood -- enough to scare me. I made an emergency appointment with the rectal specialist, who assured me it was just a hemorrhoid, cauterized it, and sent me on my way. I didn't think about it until November, when the bleeding returned. This time, he looked at it and seemed concerned. "I'm going to send you to a rectal surgeon."
What followed was the most callous diagnosis I have ever received. The surgeon examined me and said, "Well, it's cancer" without the slightest hint of empathy in his voice or any recognition of the impact of his words.
"Cancer? What does that mean?"
"That means chemotherapy and radiation. I'll give you a referral."
And that was that -- no more info, no hand-holding, no hope-building, just a phone number and a goodbye.
I was devastated. I went to the nearest pay phone and called my boyfriend. "It's cancer."
"Yeah, right. Stop joking."
"I'm not joking -- it's cancer and I have to start chemo and radiation right away."
The moment of a cancer diagnosis is just about the same as an HIV diagnosis: The world seems to slow down, everything is in a haze, and it's hard to know what to do next. I called the rectal specialist who had misdiagnosed me and he agreed to see me immediately. I was furious that someone whose specialty is rectal exams of gay men was unable to identify anal cancer when he saw it, but I had to talk to someone. "Well, if you have to have cancer, this is the one to get, since the cure rates are so high -- almost 90% if caught early, like yours was." That was little consolation to me, but at least it was some more info.
Now I was thrown into the world of cancer care -- very different from the world of HIV I had lived in for 25 years. I began getting referrals to anal cancer specialists, but when I called, they wanted me to wait a month for an appointment! What? Let this thing spread for a month before even seeing someone? No way. Luckily, my HIV doc intervened and got me into the NYU Cancer Center in a few days. I liked the oncologist and started to move forward with treatment.
But the responsibility on me was enormous. All along the way, I was expected to manage my care myself -- making all the appointments, checking on my insurance coverage, learning about treatment options. Once again, virtually no hand-holding. I wondered how people with less experience as a self-advocate -- people who aren't able to be as much of a "squeaky wheel" as me -- would fare in this system.
Luckily, I had years of experience advocating for myself, because of having HIV. The day I was diagnosed, I joined the Yahoo anal cancer support group (groups.yahoo.com/group/anal-cancer) and found incredibly well-informed, caring people who did everything they could to help me out. What a godsend. It was here that I learned much of what I needed to know about how to get through treatment. Many of the radiation side effects (impotence, infertility, hair loss, etc.) were never discussed by my doctors. I brought them up with my doctors after learning about them from the support group. Numerous tips and tricks for dealing with the side effects once again came from the group and not my doctors -- to this day, I'm shocked by how my care providers minimized or ignored the potential side effects.
But perhaps the toughest thing was my family's denial. Having known about my HIV for 20 years and seeing me thrive in spite of it, they seemed to be not very concerned about the cancer. So unconcerned, in fact, that after giving them the news shortly before Thanksgiving, I didn't get a single call to check on how I was doing. My answering machine was filled each night with messages of support from my friends and fellow activists, but nothing from my family. You can guess how much that hurt, and when I later asked why, they said they felt that I was so strong no calls were needed. I guess I gave them the wrong impression!
In reality, I was petrified. For me, cancer is far scarier than HIV ever was, and hearing about the potential for lifelong side effects from radiation therapy only made things worse. (I should pause here and say that my reaction to treatment was my reaction -- not everyone will go through what I went through, and it appears my side effects were more extreme than most.)
I began chemo and radiation in mid-December, and ended up in the ICU on Christmas Eve. My neutrophil count was so low that any simple infection could have killed me. (I later learned this was because my chemo nurse forgot -- yes, forgot -- to give me the injection of Nulasta that could have prevented that.) After I had come through the worst of it, the oncologist told me they would need to hold me over Christmas. "I can't," I said. "Why not?" she asked.
I proceeded to confide in her, with tears in my eyes: "No one in my family has called me since my diagnosis. So I cancelled Christmas with them, and I just couldn't bear to spend it here." She looked at me without the slightest hint of sympathy in her voice and said, "I understand, Mr. Milano, but it's necessary for you to stay in the ICU." I checked out against medical advice, and had the most emotional and wonderful Christmas with my boyfriend that I've ever experienced. And I didn't die.
Treatment continued, and the side effects piled on, with the worst being nausea. Nausea is something that many doctors don't take very seriously. "So you're nauseous? So what, it ain't gonna kill you." I recall lying in the ER for 24 hours with horrible nausea, but not having a single doctor check on me. It got so bad I ended up in the hospital for three weeks and lost 25 pounds in a month. At one point, I told one of the many nameless doctors who stopped in that the nausea was so bad I'd rather die. But rather than prescribe more aggressive nausea treatment (which I now know was not being given to me), he put me on 24-hour suicide watch!
I finished treatment and set about the process of healing my body. I gained the weight back quickly -- too quickly, in fact. No one informed me that losing and gaining that much weight that quickly can lead to an altered body composition, and now I'm saddled with permanent gynecomastia (fat in the chest) unless I can find $5,000 to have it surgically removed. But I was better, tests found no cancer in my anus, and I was ready to move on.
Until one year later. My first post-treatment MRI found a suspicious lesion in my left lung. Further scans confirmed my worst fears: It was metastasized cancer (the anal cancer moving to my lung). I recall my new oncologist walking in the exam room and the first words out of his mouth were, "Well, the first thing is: no cure." Gee, that's hopeful. And not even an explanation of what he meant! You see, in cancer, the word "cure" has a very specific definition: If you survive five years without a recurrence, you're considered cured. Since I had a recurrence, even if I survived five years I would not be pronounced cured.
We surgically removed the tumor and did six more months of chemo (with Erbitux, the drug Martha Stewart went to jail for) and I once again hoped I was okay. No such luck. A non-cancerous lesion we had seen in the left lung at the same time we saw the one in the right lung turned out also to be cancerous, and I had to have that removed. This time I passed on more chemo.
I had a slight respite for about a year, until a scan last May found a lesion on my left kidney. A biopsy came back negative, and I breathed a sigh of relief. But my HIV doc wasn't convinced. "They missed it, Mark. You have to let them try again." I did, and it was metastasized anal cancer -- which I'm told never happens in the kidneys.
Unfortunately, every surgeon I've seen refuses to remove it. They all say the risk outweighs the benefit. Finally I found an alternative: radio frequency ablation, in which a probe is inserted to burn the tumor away. I was excited and hopeful the day of the procedure, only to be told at the last minute that it couldn't be done, since a new CT scan taken from a different angle showed that the tumor was in a place that made it too risky to do the procedure.
I continued the chemo, which has shrunk the tumor nicely, but everyone says it will return when I stop. I have found some alternatives, but once again it feels like I'm on my own. So I face my mortality with the hope that somewhere I'll find a doc who is willing to fight for my life as strongly as I will. There must be one out there somewhere.
And what have I learned? That cancer care, like much medicine, may still be more art than science. So I don't trust doctors blindly. You want to live, you do it for yourself. You find the support you need. You do your own research, become your own expert. I've had to accept that I might not live to see 60. So I treasure each day, spend as much time with dear friends as I can, and try to avoid wasting my energy on petty problems. It's hard to change lifelong negative coping mechanisms, but I do what I can. Thank god for my incredibly caring and strong boyfriend. I can't imagine going through this alone.