Frank K's Story: prostate cancer

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Frank Kirk's experience with prostate cancer

My name is Frank, and I'm 73 years old. I'm divorced with two wonderful grown children and three even more wonderful grandchildren. I was diagnosed with prostate cancer in the summer of 1993, when I was 66 years old, and here's how it happened. I had applied to participate in the clinical trial of the drug Proscar, which was designed to reduce swollen prostates when I was having a problem with that. I was tested to help determine eligibility, and it turned out my PSA was 7.3 with an aggressiveness or Gleason score of over 7 out of a possible 10.

Making an informed decision

The urologist in charge of the trials thought I might have prostate cancer, which would make me ineligible. So he recommended and offered to pay for a biopsy and it found cancer cells in all seven of the tissue samples, meaning that the cancer had already spread throughout the prostate. He immediately recommended surgery as "the gold standard" of treatment options, assuming, he would do the surgery himself. When I reminded him that my health coverage was with an HMO and which has its own staff physicians, he couldn't wait to get me out of his office. I was given a bone scan and referred to a staff urologist, and he described the options as: surgery, external-beam radiation, and watchful waiting, and the potential side effects of each one. He did not himself want to do surgery because of what he felt was the probability that the cancer was already outside the prostate, though not yet detectable, and he was skeptical about the effectiveness of radiation. He actually leaned toward watchful waiting. The radiation oncologist, on the other hand, thought radiation might actually cure the cancer. And by that time I was somewhat confused, not to mention worried, so I decided to go outside the system and pay for a third consultation with an internationally renowned urologist at in Seattle. And he looked at the biopsy results and bone scan and did his own digital rectal exam, and strongly recommended external-beam radiation, on the belief that the cancer had not yet spread outside the prostate. So I decided to go ahead with the radiation. Also consulted with a naturopath, complementary methods, to help my body cope with the stress of radiation treatments. And I think it did help, because I tolerated the 33 treatments quite well. I didn't miss a day of work. I did experience some fatigue toward the end.

A short reprise

As far as my feelings were concerned, I went from being worried and scared back to being my usual optimistic self, and I think that has helped me in terms of lifestyle since that diagnosis. And in fact the radiation worked for about five years, then my PSA score started going up again and so the urologist recommended another biopsy, and again, the biopsy indicated that there was cancer throughout my prostate and also had spread to the seminal vesicle, which is just outside the prostate. On the other hand, the bone scan and the MRI didn't detect any cancer cells outside the prostate and seminal vesicle.

Risk reduction and treatment options

My treatment options had narrowed considerably, to hormone treatment or watchful waiting. And watchful waiting didn't appeal to me, although my aggressiveness score had gone down to six, and it would be very hard for me to just sit back and wait and see what happened. Although I did take several months to explore alternative approaches, complementary medicine approaches, and I didn't find anything other than a change in diet and nutrition to reduce the risk. I had been on a low fat diet but I went on an even lower fat diet and now I completely avoid things like cheese and red meat and anything except fish and chicken and turkey, and I have a diet that's high in tomatoes and soy and veggies and fruit and all of that has certainly led I think to my feeling pretty healthy. And I am pretty healthy, with one minor or major exception you might say. But eventually I decided that the hormone treatments were the best way to go for my situation and that was also what was recommended by my oncologist.

Hormone treatments

The hormone treatment causes your system to stop manufacturing testosterone, which is a major nutrient for prostate cancer cells, and within 5 months of starting the hormone treatment, my PSA had dropped from 27 down to .4. And I've been on the hormone treatments just about a year and my PSA is currently at .8. I'm getting ready to participate in a prostate cancer vaccine study at the university of Washington, which I can do without getting off of the hormones. My oncologist and I are in favor of intermittent hormone therapy, where you give it for a while and when your PSA has bottomed out, then you stop it and wait until it goes up to a certain level and we're not there yet. And the vaccine study is very experimental. If it does any detectable good it will be somewhat surprising, but still it's a way of trying to find a cure, which I'm very much in favor of, of course.

Fighting for the cause

But what happened when the cancer came back is that I began to inform myself in much greater breadth and depth than I had the first time around. I attended a two-day seminar sponsored by the American Cancer Society, and the university and some other groups, and I learned so much about the disease that I had not realized before. And I also realized there was a major problem with funding of prostate cancer research so I decided to get involved as a volunteer with the American Cancer Society in lobbying for more prostate cancer research money. I have a long background in politics and government and have done lobbying before and been lobbied before. My last 12 years before I retired I worked for the Seattle City Council as a legislative analyst and legislative aide. I became a member of the Puget Sound Area Prostate Cancer Task Force and we have already been in business just short of three years. We did get a memorial through the state legislature asking the federal government to put more money into cancer research. The other co chair and I, have been to DC twice, working with the National Prostate Cancer Task Force and lobbying members of the Washington delegation, the two senators and the congressmen. It's been quite fulfilling to be able to do that. One of the things that I have learned is that based on the research that has been up to now, they are really on the verge of some major steps forward so additional research now would be very timely.

The Next Step

The Task Force's next mission is to introduce legislation at the state level in January with the help of our legislative sponsor in order to establish a State Cancer Commission. Under the aegis of the State Department of Health, the Commission would take a look at the situation throughout the state in terms of all cancers and peoples' access to care, expertise and lifestyle situations and whatever, and also the level of information that's available to the general practitioners and family medicine doctors. This is to see if there's some things the state can do to help find a cure for cancer and methods of prevention that are more effective. It's something that we've been collaborating in writing the legislation, with a high-level staff person from the Department of Health and we're looking forward to working with cancer survivors of all kinds in all parts of the state between now and January to get their support with their own legislators for this legislation. We'd also like to see the state get involved in prostate cancer research, I mean, cancer research. But we also know there's a great reluctance to do that because it involves so much money and the federal government is already so deeply invested in it, but we're gonna give it a shot anyway. And we would see that as a great step forward. The commission would take a year to two years to thoroughly study and analyze the situation in various parts of the state and the governor with recommendations as to what the state role ought to be.

My life is full and satisfying

And as far as the impact now on my life and my style, there are lots of side effects to this hormone treatment. Loss of energy is one of them, maybe I had too much energy in the first place, but I can certainly feel the difference, and weight gain is another. There's a potential loss of bone mass and muscle mass, and hot flashes are very common side effect of the hormone treatment. I'm having hot flashes but I'm also taking some pills that reduce the frequency and intensity. So my life hasn't really changed very much. I have a very active social life and my family and friends are my support network outside of the work that I do with the Prostate Cancer Task Force. I'm very close to the my children and I'm very close to my ex-wife, and I have many friends. I am very active as a volunteer in a group in Seattle called The Friends of Pea Patch, which promotes community gardening, and that's something I've been doing for several years. I've felt some strains from the prostate cancer, I mean from the hormone treatments because of the fact that it does reduce my energy, so I have to sort of work harder at working harder. All in all, I'm living a very full and satisfying life. The issue remaining around the hormone treatments is how long will they be effective/ Some people it works for a couple of years and some people it works for ten or more years. And you really don't know which of those categories you're gonna fall into be until you've been on it for a year or two years. So I have that kind of uncertainty hanging over me, but it is largely overcome by my natural optimism.

My advice to other prostate cancer patients

I think the main thing I would recommend is not to be scared into making a quick decision about what treatment option to pursue because, by and large, even the most aggressive prostate cancers are slow growing compared to other kinds of cancers, which can kill you in a few months. In most cases of people I know, they're not that far advanced when the prostate cancer is diagnosed. But there is this problem that you get different advice from different specialists based on their specialties, so it really pays to inform yourself as much as possible about the research that's been done. Look into the nutritional aspects of it, and also look into the cutting edge approaches that have been developed. Even with the standard therapies that have been there for many years, the radiation and surgery and watchful waiting and hormone treatment, they're being fine-tuned in some ways and they're more effective than they used to be. In surgery, there's such a thing as nerve sparing surgery, which doesn't have as many side effects on potency and other things as surgery used to have. They have become better at aiming radiation to avoid collateral damage, and better in combining hormone treatments with these other treatments. I would strongly recommend learning as much as possible about all these alternatives before making a decision about which way to go. And also talk to other prostate cancer survivors.