GATHERING INFORMATION

SECOND OPINIONS

In all likelihood, it was your family doctor who first suspected the cancer. He or she sent you to a urologist (who was probably a surgeon) for evaluation. The urologist may or may not have suggested that you consult with a radiation oncologist or other specialist. Not surprisingly, a study found that 93% of urologists consider surgery to be superior to radiation. (1)

In order to make a decision, you must speak to more than one kind of specialist. And once you have decided on a procedure, you may still wish to find another doctor in that field. There are many good reasons for favoring one doctor over another. For example, you may find that some specialists may not be up-to-date on all of the treatments and developments in the field. And some, of course, may have very little experience.

Most insurance companies will pay for at least a second opinion, but you may have to pay for some of the visits yourself. Do it. Your decision will affect the rest of your life—and how long it lasts.

Second Opinions: Why, When, and Who, cancerguide.org
List of multidisciplinary second opinion centers

A PROSTATE CANCER DIGEST

Doctor Strum of the Prostate Cancer Research Institute requests that patients who consult him provide as much of this information as possible:

• Name, current age, and date of diagnosis
• PSA at time of diagnosis (baseline PSA)
• Volume of the prostate (measured by transrectal ultrasound)
• Biopsy cores: the number of cores that were taken from each side, how many cores from each side contain cancerous cells, and the Gleason scores
• Results of a prostatic acid phosphatase (PAP) test (if done)
• Results of a ploidy test (if done)

For more details, see Preparing Your PCD, at Prostate Pointers

SUPPORT GROUPS

You can learn a lot by going to a few support groups. Many of the participants have gone through the problems you are just starting to face. At least some of them will be well-informed about recent developments, and many will be able to tell you what not to do and, often, who not to do it with. It also helps simply to know that you aren't the only one with this problem, and to be in the company of men who have dealt with this successfully.

Typically, support-group meetings begin with a lecture by a doctor or other specialist, followed by open-discussion meetings. (Some groups have separate meetings for spouses, but most will welcome anyone who wants to attend the men's meetings.)

The first time you attend a meeting, you may feel confused and embarrassed. Strangers will ask you questions that seem terribly intimate. Survivors are so used to talking about these things that most have forgotten how they once felt. If you don't think you can talk about it yet, say so. After you've been to one or two meetings and listened to others discuss their problems, it won't seem quite as bad.

Some groups may suggest that you attend a first-timer's meeting. But being surrounded by people who are as confused as you are can be just as frightening as those blunt questions. It is likely that you will be asked to tell everyone about yourself and what you plan to do—even though you probably went to the group so that you could decide. If any of this will bother you, skip the first-timers' meeting.

It helps to have a general understanding of prostate cancer and its treatments before you go to a meeting. Otherwise, the volume of information will only confuse you. And bear in mind that most survivors feel the need to defend the procedure they chose. Listen carefully and evaluate what you are told. Also note: each group should have a healthcare professional present to make sure that the laymen do not stray too far from the facts. If the group you visit seems unorganized or clueless, try another group. It is worth your while to give support groups a fair shot. It is also worth continuing to attend following your procedure so that you can compare notes on what you are going through and offer support to newbies.

There may also be support groups in your area for very specific problems, such as impotence or PSA anxiety.

How support groups can help Support groups, NCI Man to Man home page US Too support groups US Too's Partners’ Page

Australian support groups Canadian support groups Scottish support groups

BOOKS

These can be useful, but some are inaccurate or slanted,and they all seem to leave something out, so you have to read more than one. Reviews of prostate-cancer books are hard to find. Comed offers comments on several books and Oncolink discusses books, audio tapes, and videos. If a site has a link to a bookseller for each book, be sure to get a second opinion. (Booksellers give a percentage of the sale to the site that sent the customer. While this can be a legitimate way for a site to help support itself, it may also encourage long lists of useless books.) Free pamphlets are available from government agencies, but you should not consider reading a pamphlet to be sufficent research.

Recordings for the visually impaired
American Cancer Society brochures
American Cancer Society booklist

INTERNET SOURCES

Anyone can publish anything on the Internet, and that creates risks. But, then, plenty of unreliable books get published too. There are valuable sites that were not written by doctors or professors. You will find links to some of them in this guide.

MEDICAL PAPERS AND SEARCH ENGINES

Doctors have used the Internet to look up research papers and medical studies for many years. The information is much easier to locate there than in a medical library—and a lot faster. Any good search engine can find some of the studies you want, but it is much easier to use one that was specifically designed for medical searches, such as the National Library of Medicine’s PubMed site, which lists papers from all over the world, or Google Scholar.

PubMed
Google Scholar

Using PubMed The studies cited on the pages of The Hypertext Guide to Prostate Cancer site can be viewed on the PubMed search engine by searching for the PMID number. If you are looking for a specific paper and do not know the PMID number, you may be able to find it by searching for keywords, authors, and the like. For example:

leads to:

Long-term outcomes after treatment with external beam radiation therapy and palladium 103 for patients with higher risk prostate carcinoma: influence of prostatic acid phosphatase.
Cancer. 2003 Feb 15;97(4):979–83.
PMID: 12569596 [PubMed - indexed for MEDLINE]

It is not absolutely necessary to enter the ANDs or the terms in brackets, but in some cases they may help refine your search.

Costs. Most of the medical papers you will find will be abstracts, but those are usually all you will need. Abstracts are free, but acess to full texts can be expensive. A few journals do give them away, but you are more likely to find a free copy by searching the Web for the authors’ names and the subject. For example, a Google search for the same terms leads to a free copy of the paper on the Dattoli Cancer Center site.

Finding a useful study. Using a medical search engine can be even more frustrating than using a regular one. Even a very specific string of words may turn up many studies that do not appear to have anything to do with what you are looking for. Moreover, many studies appear to have no other purpose than to be published. That is, they find exactly the same thing that many others have already found (or, worse, reach no real conclusion). Equally frustrating is the realization that for every study that seems to prove that such-and-such is true, you can find another that insists that it is not (see below). In cases such as these, the safest response is to err on the side of caution. Unfortunately, not all conflicts can be resolved in this way.

Here is an example using a few studies on a single subject:

MINIMAL EFFECTS Urology, 1998   PMID: 9510352 For the total screened population, ejaculation has no clinically significant effect. Men should not be asked to abstain from sexual activities before a PSA-screening test. Eur Urol, 1995   PMID: 7544734 We conclude that ejaculation does not seem to affect the serum PSA concentration. J Urol, 1997   PMID: 8976253 Based on our data ejaculation does not affect serum PSA concentration in young men, and there seems to be no physiological relationship between ejaculation and PSA level.

SIGNIFICANT EFFECTS Urology, 1997   PMID: 9255295 The mean total, free, and percent free serum PSA increased 1 hour after ejaculation. Mean total PSA levels remained significantly increased 6 and 24 hours after ejaculation. Eur Urol, 1997   PMID: 9266232 A significant postejaculation serum PSA elevation does occur, it is thus recommended that men abstain from ejaculation for 24 h prior to PSA sampling. J Urol, 1993   PMID: 7688435 These results suggest a physiological relationship between ejaculation and decreased [extra emphasis added] serum PSA levels.

How is this possible? First, because it is likely that the researchers did not all work in the same way. Different people in different countries with different suppliers using different materials are unlikely to end up with exactly the same results. Second, there may be subjective differences in the way that the researchers interpret the significance of different factors. Third, it may be sloppy science—some critical variable has not been controlled. And fourth, the researchers may simply be finding what they expected to find (or intended to).

The fact that a journal can run studies demonstrating opposite results opens the door to questioning not only the validity of the studies but the review processes of the journals. In their defense, it is true that journals must be open to a variety of views, and it is unlikely that they send every study to exactly the same experts for peer review. On the other hand, it is likely that most of the reviewers would be reluctant to contradict a colleague (and in certain highly focused research areas, writer and reviewer probably know each other).

Criteria.  Given these inconsistencies, how can we make good choices? Studies cited on this Web site are selected by:

• Becoming generally familiar with the subject.
• Reviewing a large number of abstracts.
• Selecting a representative paper if there is a general consensus about a topic—or commenting on it if the studies are seriously split.
• Representative papers are chosen based on sample size (the more people studied, the better), whether it was a single study or a review of studies (reviews tend to average out the results), and the reputations of the researchers, their insitutions, and the journal,

Other papers. One other point to be made about journals is that the review process can take as long as two years, by which time the information may be of little value to other researchers. This fact has led some people to present their findings at medical conferences. The prestige of being published in a major journal is lost, but the gap between research and dissemination is much shorter.

MAILING LISTS, CHAT ROOMS, AND NEWS GROUPS

Mailing lists usually only require signing up. Individuals email questions and responses to the list, which are emailed to each of the subscribers. (Most of these services are free.) Moderated lists are best because they tend to prevent nasty arguments between subscribers (e.g., my procedure is better than yours).

Prostate Pointers’ links to mailing lists:

brachytherapy (SeedPods) cryotherapy (IceBalls) external-beam radiotherapy (EBRT) hormone blockade (CHB)

radical prostatectomy (RP) sexual issues (PCAI) watchful waiting (WW) other subjects

Guidelines and tips for using mailing lists

Chat is a real-time equivalent of a mailing list, often done at specific times and places and which sometimes involving specialists who answer questions.

Oncochat, a list of sites

Newsgroups resemble mailing lists but are not sent to anyone. You go there, post a question or a response, and check back later to see what others have had to say. The sites can be reached through your browser by using the Groups heading on the Google page. Few are moderated, and they tend to be a bit chaotic. Not recommended.

Google newsgroups page
PCa News

P2P (Physician to Patient)

This is a group of physicians who will answer specific questions on the Internet. If your doctor won't (or can't) give you a satisfactory answer, try posting a message to P2P. Please don't swamp them with all those basic questions that are answered in the books or such major sites as Prostate Pointers and OncoLink. Try those first. Read the P2P posts for a few days to get an idea of what is going on and what the doctors will need to know about you—or look at the P2P archives.

(If you know any well-informed, patient-oriented physicians, please encourage them to look at P2P with an eye to starting a similar service for any disease.)

P2P archives
Sign up for P2P
Prostate Pointers
OncoLink

PATIENT HISTORIES

Personal notes on the trip to treatment and beyond can tell you many things about each procedure that you will not find in the introduction-to-prostate-cancer books.

Patient histories at the Amercian Cancer Society
advanced cancer
brachytherapy (seeds)
Cryotherapy (freezing)
A patient's experience with laparoscopy
Article on temporary seeding, from the patient's point of view
Various treatments
Radical prostatectomy survival handbook
Dr. Meyers, who became a PCa patient himself (several pages)
Mr. Bloch, a long-term cancer survivor (several pages)
Cancer experiences (2500 total, 153 prostate cancer)

NEWS

Collected reports of recent news stories about specific subjects. Some are published daily, some are added to the site as interesting stories come along.

Journal Watch
Yahoo-Reuters Prostate Cancer
News about drug trials
Prostate cancer trials, by state
Quackwatch, a site that exposes known cancer frauds

NEWSLETTERS

These are mostly issued on paper, though a few can be obtained over the Internet. Some are free, some are not. If you subscribe to a free one, consider contributing to the organization that publishes it.

PCRI Insights
Prostate Forum
US Too’s Hot Sheet