Several years ago, Elliot and Elizabeth Boyd* sought the help of a urologist who specializes in treating male sexual and reproductive issues and infertility. Elliot underwent varicocele repair, a procedure that can improve male fertility by eliminating blood flow to a swollen network of veins leading to the testicles. He also began taking clomiphene (Clomid), a drug that spurs the body’s production of testosterone, and thus sperm. [Editor’s note: The couple’s names and certain biographical details have been changed to preserve their privacy. All medical details are as they reported them.]
In 2004, at age 46, Elliot’s PSA stood at an insignificant 1.4 ng/ml, well within the normal range of 0 to 4.0 ng/ml. By the end of 2006, it had jumped to 2.7 ng/ml. Given the relatively fast increase in Elliot’s PSA, his family history of cancer (including prostate cancer), and his relatively young age (now 49), his physician recommended a prostate biopsy. One of the core samples revealed prostate cancer. A subsequent biopsy, however, came back negative. Now what?
Increasingly, patients ask this question, especially those considered to be at relatively low risk after an initial biopsy. Here, the Boyds share their experience, explain their next steps in light of seemingly contradictory test results, and offer advice to those coping with their diagnosis and weighing treatment options.
What prompted you to have the first biopsy?
Elliot: My PSA was going up. At the time, I was taking Clomid, and I thought that the elevated PSA might be due to the increase in testosterone, which was going up above normal levels. But I was alarmed by the PSA because of my family history, so when the doctor suggested the biopsy, I agreed.
Elizabeth: I think Elliot’s young age also played into it. And even though his PSA level wasn’t particularly high, the rate of change was worrisome. When you have cancer in your family, that kind of change is scary. [See “Prostate cancer and PSA velocity” and “It runs in the family,” below.]
Prostate cancer and PSA velocity
The rate of change in PSA over time, or PSA velocity, provides an indication of how advanced your cancer is and how likely it is to metastasize. PSA levels that double from one year to the next may signify an aggressive cancer. Similarly, a PSA that goes up by more than 2 units within a year may be cause for worry. PSA levels that rise more slowly probably indicate a slow-growing cancer.
It runs in the family
A man who has a father, brother, or son with prostate cancer has two to three times the risk of developing the disease as a man whose first-degree male relatives don’t have the disease. A man who has two or more first-degree relatives with prostate cancer faces a risk 5 to 10 times greater than one who has no family history of the disease.
Tell us a little bit about your family history, Elliot.
Elliot: Well, my father was diagnosed with prostate cancer when he was 75 years old. We think my grandfather died of prostate cancer. And my brother died at 37 following treatment for non-Hodgkin’s lymphoma. Cancer, in one form or another, seems to run in our family.
What was the biopsy like?
Elliot: I had done some reading about it beforehand and had heard that the sensation you felt was like the snap of a rubber band. I was really familiar with the office and the people there, and that lowered my anxiety a little bit because I trusted them.
They used ultrasound to guide the needle. It was pretty quick and relatively painless.
How long did it take to get the results of the biopsy? What were you told?
Elliot: It was about two weeks later.
Elizabeth: He called the urologist and got the news over the phone. He was told that 1 of the 10 samples they took came back positive for cancer.
Elliot: The doctor was very matter-of-fact: “This is just 1 out of 10 biopsies, but I want you to take this seriously. I also want you to know that it’s treatable.”
What was your reaction?
Elliot: With the family history of cancer and my brother’s death, I was alarmed. But what are you going to do? I couldn’t change it.
Elizabeth: I was amazed by his reaction. When I asked him about it, he said, “I’d feel the same way if he told me I didn’t have cancer. If it wasn’t today, it could be 10 years from now.” I think he’s acutely aware of the family history, so there’s kind of a constant worry about it.
Elliot: And having helped my father through his treatment, I was kind of familiar with the stages of prostate cancer and the treatment options. I knew it was treatable, but Elizabeth and I didn’t know what we needed to do.
How did you find out what you needed to do? What types of information did you access?
Elliot: I went on the Internet. I read books. I talked to a friend who’s a doctor at another medical center.
Elizabeth: I went online to the Prostate Foundation site and visited reputable Web sites to see what people were writing about.
Elliot: The one thing that I knew I could control in all of this was my habits. I knew I needed to drop some weight, so we researched nutrition. I wanted to change my eating habits. I do a lot of exercise anyway, and that’s kind of my social group, but 85% of what I’ve done, dropping 35 pounds in eight months, was due to eliminating dairy, eliminating red meat, and eliminating snacking. Elizabeth also found pills for me that contain nettles, saw palmetto, and ginger. She also changed to canola oil and got flaxseed. [See “Flaxseed facts,” below.] All of the nutritional changes and weight loss have been great not only for my prostate, but also for my ankles and knees. I’ve really been working at combining exercise, nutrition, and stress reduction.
Interest in flaxseed began to grow after a 2001 pilot study showed that prostate tumors grew more slowly in men who consumed it, along with a low-fat diet, for four weeks before a radical prostatectomy than in those who did not. A later study showed that men who had negative biopsies but were at relatively high risk for prostate cancer trimmed their risk of the disease by eating a low-fat diet that included ground flaxseed (not flaxseed oil). Preliminary results of a third study, reported at the annual meeting of the American Society of Clinical Oncology in June 2007, suggest that flaxseed, which is rich in omega-3 fatty acids and lignans, can slow the growth and spread of cancer cells.
How do you feel now?
Elliot: I feel great. It doesn’t necessarily mean that the tumor has stopped growing, but I feel great.
I’m at a good point in my life. Our daughter is 6 years old, and we’re having a great time.
Did you seek out advice from any specialists?
Elizabeth: We knew the options were radiation, surgery, and active surveillance, so we talked to a radiation oncologist and a surgeon. We decided that radiation wasn’t a good treatment choice for Elliot, given his profile and being young and having what appeared to be a very small localized tumor. We didn’t like the surgeon’s personal demeanor, so if we choose surgery at some point, we’ll probably want a different surgeon.
Elliot: Another physician suggested doing an MRI to try to see how big the tumor was. We did that and didn’t see anything except for a slight shadow on the right side, which could have been scar tissue from the first biopsy. Or it could have been cancer. We didn’t know.
So the doctors suggested that you have a second biopsy at that point?
Elizabeth: Yes. We knew there was cancer in only 5% of one core sample. Did the first biopsy just nick the tumor? We didn’t know. So the goals of the second biopsy were to check out the right side more thoroughly to see if the shadow was cancer and to biopsy a lot around that initial positive site to try to get a sense of how big the tumor was.
And what were the results of that second biopsy?
Elliot: We were elated because they didn’t find any cancer. They tested five additional sites around the initial one, isolating that area, and they didn’t find anything, meaning the tumor is probably really small.
What were the responses of the specialists who saw the results of both biopsies? Were they dismissive of the second biopsy?
Elliot: From my experience, the surgeon will always want to operate, so I wasn’t too surprised that that’s what they recommended for me. One surgeon said, “I don’t care about the second biopsy. You have cancer. You’re young. Take it out.”
Elizabeth: His style and approach were different from the first surgeon’s, but he still said that based on research, Elliot would have a better outcome, with less chance of progression, if he has surgery within 12 months of the first biopsy. [See “Time to decide,” below.] The problem with that scientific data is that you can’t parse it for one man who’s in his late 40s, makes all kinds of lifestyle changes, and has a tiny, tiny cancer.
Time to decide
Researchers at Memorial Sloan-Kettering Cancer Center analyzed medical records of 3,149 men with early-stage prostate cancer who underwent a radical prostatectomy within a year of diagnosis. The time men took to make a treatment decision did not significantly affect likelihood of relapse (measured by a rising PSA level, known medically as biochemical recurrence). This held true even for men at high risk for relapse, based on their clinical profile.
Boorjian SA, Bianco FJ, Scardino PT, Eastham JA. Does the Time from Biopsy to Surgery Affect Biochemical Recurrence After Radical Prostatectomy? BJU International 2005;96:773–76. PMID: 16153197.
Did you see anyone else after that?
Elliot: We drove down to Connecticut to see another physician there. He was great. He said there were risks involved with active surveillance, but he saw that as an option; that was nice to hear.
Elizabeth: He said we had a lot of choices. He said we could do active surveillance, but he also said he’d be happy to take it out now, take it out 3 years from now, or take it out 15 years from now. He didn’t try to scare us by saying, “You’ve got to have it out now, or you will die tomorrow.”
Was his opinion based on the amount of cancer seen in the first biopsy? Or on the fact that the second one was negative compared with the first one?
Elliot: Not too many of the people we spoke with distinguished between the two. They focused on the fact that cancer was detected and that means I have cancer. Biopsies are like finding a needle in a haystack, and I think that’s why they discounted the second one somewhat.
Elizabeth: The Connecticut physician, based on Partin tables [see “What’s a nomogram?” below] and all the information he had about Elliot, recommended doing another biopsy 12 months after the second one if we decided to try active surveillance. That was right in line with what another physician recommended. After that, we decided on active surveillance.
What’s a nomogram?
A nomogram is a mathematical model that predicts, on the basis of your clinical profile (PSA level, Gleason score, and tumor size), the probability that you have cancer that is confined to the prostate, or the type that is likely to become active. It can be helpful in determining your prognosis and making treatment decisions. A number of nomograms exist, but you may find the Partin tables and the Kattan nomograms particularly useful.
Did he have any other recommendations?
Elliot: He gave me a list of about 240 patients — he’s not sure what they’ve chosen to do — who have given the okay to be contacted by other patients to discuss what they’re doing for treatment. There was even a guy in the waiting room who said, “I had this surgery two years ago. If you want to talk to anybody, you can call me.”
That kind of thing is very stress reducing, having a physician who understands that when you have a lot of choices, you need other people to speak with. And now that I feel like I have a little more time, I’ve started to talk to more people about it.
Have you participated in any local support groups?
Elliot: I haven’t, but I’m going to [see “Finding a local support group,” below]. That’s because I think I, well, I didn’t want to tell…
Elizabeth: He hasn’t told his family yet.
Elliot: I didn’t really want to tell them. It’s hard to tell them that I have cancer because my brother died of cancer. But if I decide to have surgery, I certainly will tell them.
But right now, I’ve come to the conclusion that I’ll do active surveillance, do another MRI, and do the biopsies. We’ll follow it to see if it’s progressing.
Finding a local support group
Prostate cancer patients can find support groups in their area on the Web. Two sites to try:
Us TOO International Prostate Cancer Education and Support Network
This organization offers fellowship, peer counseling, and a network of more than 300 support groups around the world.
American Cancer Society’s “Man to Man” program
Participants can attend free monthly meetings to learn about prostate cancer treatment, its side effects, and ways to cope with the disease.
Do you both feel comfortable with the direction that you’re taking?
Elizabeth: I think active surveillance is really well suited for us and for Elliot as a person. He’s already described all the lifestyle changes he’s made, and he’s felt empowered by doing that. He’s felt very much in control of his own life. Plus he’s really healthy. He’s going to be really healthy 10 years from now. So whether he has the surgery now versus 10 years from now… Who knows? Something else might be available besides surgery 10 years from now.
Elliot: Technology is constantly changing and developing. Who knows what’s going to happen in a year? Who knows what tools are going to come along? Maybe even new procedures or a greater likelihood of success for nerve-sparing surgery…
Elizabeth: If I were married to a man who liked to sit on the couch and eat potato chips all night and felt deprived if he had to eat a piece of fish, I would probably tell him to have surgery, because he wouldn’t be happy making all of the lifestyle changes. But that’s not Elliot.
What advice can you give to people facing a similar situation? Based on your experience, what do you think would be helpful for our readers to know?
Elliot: Get an advocate. Have your wife or a friend, somebody you can discuss things with, go with you, take notes, and help you make decisions. [For more information, see “Avoiding snap judgments” and “Medical decision-making resources,” both below.] It’s hard when you’re anxious, sitting with all these surgeons and nurses and physicians, to remember everything and make clear decisions.
Elizabeth: I think that’s right on target. The most important thing an advocate can do is be there at every appointment, even if the appointment seems like no big deal. There’s definitely a time lag between when a doctor says something and when you can actually process the information. It’s not like a regular conversation. You hear what’s being said, but you don’t process it right away, and figuring out how it relates to other information you’ve received really takes time. An advocate can help, especially if your appointment is delayed or something bad happens. You’ll have someone to talk to.
Elliot: And be very thorough, look at every avenue, don’t make a rash decision. Advocates can help with that. Especially early on, or when you don’t know how fast a tumor is growing, people are inclined to rush or make a decision without having all the facts. I think that’s where these patient groups are vital. After hearing their perspectives and their stories, you get a sense of all the choices you really have.
Avoiding snap judgments
Davison BJ, Goldenberg SL. Decisional Regret and Quality of Life After Participating in Medical Decision-Making for Early-Stage Prostate Cancer. BJU International 2003;91:14–17. PMID: 12614242.
Denberg TD, Melhado TV, Steiner JF. Patient Treatment Preferences in Localized Prostate Carcinoma. Cancer 2006;107:620–30. PMID: 16802287.
Gwede CK, Pow-Sang J, Seigne J, et al. Treatment Decision-Making Strategies and Influences in Patients with Localized Prostate Carcinoma. Cancer 2005;104:1381–90. PMID: 16080181.
Medical decision-making resources
More and more men with prostate cancer have turned to online resources for help in making treatment decisions. Our Harvard experts recommend these Web sites:
National Cancer Institute
In addition to a wealth of information on different cancers, the National Cancer Institute offers several decision-making resources. The booklet “Treatment Choices for Men with Early-Stage Prostate Cancer” can be downloaded free of charge at www.cancer.gov/cancertopics/prostate-cancer-treatment-choices.
Agency for Healthcare Research and Quality
Offers a general guide for consumers on how to choose a medical treatment for any condition. It includes lists of questions to ask your physician and a sample risk/benefit chart.
Foundation for Informed Medical Decision Making
Offers decision-making programs, which present treatment options for various conditions, including prostate cancer. Each program includes interviews with patients who have undergone treatments and experienced good and bad outcomes, illustrating a variety of perspectives.
Ottawa Health Research Institute Patient Decision Aids
Offers decision-making tools for a variety of conditions that outline options and possible outcomes — and help patients clarify personal values.
Originally published Oct. 1, 2007; last reviewed April 21, 2011.