Manny H.

Diagnosis: Prostate cancer, Oct. 27, 1987
Treatment: Radiation

Diagnosis: Prostate cancer metastasized to spine and hip, July 24, 1992
Treatment: Combined hormone therapy and chemotherapy (Suramin)

Profession: Retired

I didn’t get prostate cancer; Rosemary and I did. The whole thing has been going on almost 11 years. I was 47 years old and there was an infinitesimal chance of having the disease because people say it’s a disease of old men. That’s one of my pet peeves - people think it’s an old man’s disease. My other pet peeve is that prostate cancer doesn’t get the research money that breast cancer and AIDS do. I’d had some symptoms - pain in my sciatica, enough so I couldn’t keep my wallet in my back pocket.
The doctor did a cystoscopy and a biopsy. He said the chances were remote that it was cancer. Well, it was cancer. A minute percentage of men aged 40 to 49 have it. In those days there
was no PSA. My dad had prostate cancer. He’s still alive. He’s 84. I went to a surgeon for a second opinion. He didn’t think surgery was right for me. The doctor prescribed radiation.

Rosemary: Manny was really glad because he didn’t want to have surgery.

Manny: My father had radiation and he seemed to be doing fine.

Rosemary: I, on the other hand, wanted to get the cancer out! I thought surgery would be a surer cure. We really didn’t know anything. We just ran around and tried to fit a lifetime into weeks. We bought an expensive timeshare in Cancun and luckily were able to sell it the next year; we put in a pool; we bought a condo in Boston. We didn’t think about money at all. We were just trying to do as much as we could.

Manny: I did very well with radiation. We had been seeing a family therapist and she helped me with visualizations during radiation.

Rosemary: After treatment he fell apart.

Manny: I felt like I was just letting cancer happen, that I was being eaten up by cancer. I wasn’t doing anything. I didn’t know if the treatment I’d chosen made a difference.

Rosemary: The big issues we faced then were sadness and loss. I don’t know if they told us radiation causes impotence. I wish I had known.

Manny: I talk openly about impotence. I don’t want to blame the doctor. You don’t hear everything you’re told when you’re going through this. And most people lie about impotence and incontinence. There are so many people who are loyal to their doctors; they say, "He did a great job," but they’ve still got the bag down their trouser leg. They say, "The doctor will take care of it. I don’t have time for this." Well, you’d better make time for this. I have impotence from radiation. But the hormones I took later are even worse. They made me lose my libido. The
hormones are a medical castration.

Rosemary: Loss of libido is the worst. It means you don’t care.

Manny: My body became feminized. I have loss of muscle mass and loss of body hair.

Rosemary: We keep our sense of humor. That’s how we get through it.

Manny: It took a while to get over the terror of finishing radiation. It took several years before we believed I was cured.

Rosemary: I came to forget the cancer. My mother had a mastectomy and she died 30 years later, and not of breast cancer.

Manny: In July of 1992 it came back. At the same time I was having trouble with my business. The doctor called to say my PSA was up.

Rosemary: That was a Friday and Manny didn’t tell me until Sunday.

Manny: I had a lot of pain in my back. In the middle of a golf outing I took my first swing and had such a back pain
I fell on the ground. Rosemary wanted me to buy out my partner at work, but I knew I wasn’t going to be able to run the business alone when I was sick. We mortgaged the house to get some cash and then we liquidated the business.

Rosemary: We went to many, many doctors - four or five of them.

Manny: We went back to the original surgeon who didn’t want to do surgery five years ago and he asked, "How come you didn’t have surgery?" I said, "You told me not to." And he said, "I must have had a good reason." Everyone said I should go on hormone treatment. Now I was 52 years old. One doctor suggested I look into the protocols at the National Cancer Institute at the National Institutes of Health in Bethesda, Maryland. One protocol was using chemotherapy, a drug called Suramin. It took me
several weeks to get into that protocol and in the meantime I was panicked that I wasn’t doing any treatment and the cancer was growing.

Rosemary: We stayed with friends for the nine week treatment period in Maryland. We have five kids and one was still in high school but we had to be away for treatment, so she lived with one of the older ones during this time. It’s hard to put your life on hold.

Manny: One Saturday, after I’d completed 10 infusions, I sneezed and literally felt like somebody shot me in the back. I hit the floor and I couldn’t stop screaming, the pain was so bad.

Rosemary: I called 911. NIH doesn’t have an emergency room. It was Saturday. Manny’s doctors weren’t there.

Manny: I ended up back in the hospital for three weeks. I was having the severe effects of renal failure from the treatment. Now I saw only kidney doctors. They stopped the Suramin and I am, to this day, taking hormones. I go to Bethesda every six months for an exam and they replenish my medicines.

Rosemary: He was very, very sick. Manny was the first one in the protocol to have complete renal failure. The drug he was taking is fairly toxic.

Manny: They told you that I was in danger of dying.

Rosemary: They told us the hormone treatment lasts an average of 18 months.

Manny: The hormone treatment arrested the cancer. It didn’t cure it. While living with prostate cancer I need every ounce of encouragement. Even my doctors need to have a positive attitude. I’m a miracle. Today,when I ask the doctors how the rest of the men in the protocol are doing they answer, "You’re doing very well." Only a handful have survived and NIH has discontinued the program. It wasn’t worth the side effects.

I think I’m unique. Part of my secret is Rosemary. We were both
depressed during some of the treatment time, because of my illness and also because I’d lost my business. Taking Prozac helps me. After a year or so, Rosemary finally decided she was through being depressed. Since we both like to travel she went to school and became a travel agent. We’ve traveled ever since and we love it. I’m busy helping others like me, facilitating and attending support groups and sharing experiences over the phone with other survivors all over the country.

I’m chairman of the advisory committee on prostate cancer for the Mass. Department of Public Health. I’m an activist. Even though they say you can’t be cured of metastatic disease, I believe I am cured. I go around and speak. I have a reputation to uphold; I can’t be sick. This is part of my miracle. I give as much as I can. I’ve seen a lot of people die. I have strong faith, not religion, but deep spirituality.

Why I’m alive and others are dead, I don’t know. Having faced my death and been shaken by it, I have come to an acceptance. My life is an experience. It’s a span. We’re all going to die. I really am living my life the way I want to live it. Before, I didn’t feel fulfilled. Cancer has done a lot of good things for me. Cancer has improved our lives, even though it may kill us.