Prostate Cancer Story -1

Reading my prostate cancer story may:

  • add to your knowledge of prostate cancer
  • help you become a more informed and empowered patient
  • help you obtain the best possible prostate cancer help you can afford.

About Me   oooooooo

If you need to know more about me to help you decide if you should continue reading, here is some biographical information: I am a former clinical psychologist (retired) who was diagnosed in November of 2000, at the age of 70, as having prostate cancer. If you need even more information about me, Lawrence J. Bookbinder, Ph.D., go to the second page of this two-page website.

[If you like the information you read, emailing me your thanks will reward me for creating this website and help sustain my motivation to keep it going for future readers.]

About this Website   oooooooo

In telling my prostate cancer story, I translated the medical terms into plain English and tried to make the medical information easy to understand.

Although this website contains many sections, it does not cover all aspects of prostate cancer. Instead it presents only my experiences and what I learned.

I present both basic and advanced information. Below are the links to the remaining sections of this first page of this two-page website:

Stumbling Into Prostate Cancer   oooooooo

After a bone density test indicated I had osteoporosis (brittle bones), I sought treatment by consulting an endocrinologist from my health maintenance organization (HMO). She ordered several laboratory tests, but not a PSA blood test. I asked for a PSA, explaining that if my testosterone turned out to be abnormally low (one cause of osteoporosis) and she then precribed medication to elevate it to a normal level, I was concerned that the increase might cause me to develop prostate cancer--a medically valid concern. The PSA, taken on 06/29/00, one day after my 70th birthday, turned out to be 6.4.

I arranged for a second opinion about my osteoporosis with an endocrinologist outside of my HMO who was highly regarded by my HMO endocrinologist. In the course of reviewing my osteoporosis test results, he said my PSA was high enough to warrant an evaluation by a urologist.

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Fear of Prostate Cancer Screening   oooooooo

Whenever I think about the fact that I asked for the PSA test to help with my osteoporosis treatment, not to screen for prostate cancer, I feel sad and angry. My HMO primary care physician never encouraged me to obtain a PSA blood test.

I recall asking him about it once. His answer included the possibility of waiting for a worsening of my frequent-urination problem, caused at that time by my enlarged prostate, before getting a PSA. He also spoke of the negative aspect of a prostate biopsy but not of its positive aspect. Although my recall may be inaccurate because of my anxiety about the subject of prostate cancer, I clearly recall that his answer was against rather than for PSA testing. He left the decision up to me.

I chose to avoid the PSA test. I was frightened about the possibility of having a prostate biopsy. Although my physician did not mention radical prostatectomy--a prostate surgery procedure for removing the entire prostate--I thought about it, which also frightened me.

I believe it was tragic that neither my HMO endocrinologist nor my HMO primary care physician had advised me to consult a urologist.

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Consultation with First Urologist   oooooooo

09/18/00 My HMO urologist did a digital rectal exam (DRE)--put on surgical gloves, lubricated one of his fingers, inserted it into my rectum, and pushed on as many areas of my prostate gland as he could. He found a hard area (nodule) in the left apex of my prostate. The presence of this nodule combined with my PSA being elevated (6.4) led him to recommend a biopsy.

Before my consultation, I had read that ultrasound-guided prostate biopsies usually were more able to locate the cancer than finger-guided biopsies. When I asked if he was going to use ultrasound, he replied "No" and explained that it was not necessary because he could readily locate the nodule with his finger. At that point I decided I needed to find another urologist.

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Finding Another Urologist   oooooooo

A week before my consultation with my first urologist, I had bought two books on prostate cancer and read much of both. Later when I began searching for another urologist, I remembered that on the inside of the back cover of one of the books was information about an organization for educating patients about their prostate cancer. One of its services was providing names and contact information for "the best doctors".

I dialed the organization's telephone number and told the secretary who answered that I wanted a referral to an excellent urologist in my area. She replied that if I could hold for a couple of minutes, the organization's director, probably would be finished with his call and then be available to talk with me. The name she mentioned was that of the author of the book. The director referred me to a urologist whose office turned out to be only 17 miles from my home and encouraged me to join the organization by sending in the one hundred dollar annual dues.

The one hundred dollars I spent to find the urologist turned out to be an excellent investment because he not only found my cancer but also helped me to become an informed and empowered patient. Later I learned that he was a member of the organization's advisory board and a nationally-recognized prostate cancer specialist.

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Consultation with Second Urologist   oooooooo

09/28/00 This urologist, similar to the second endocrinologist I consulted for my osteoporosis, was not part of my HMO. After conducting a diagnostic interview, he donned surgical gloves, lubricated one of his fingers, and inserted it into my rectum. He contacted the nodule felt by the first urologist and recommended an ultrasound viewing of my prostate to help determine whether to do a biopsy.

10/31/00 He inserted the ultrasound probe into my rectum, scanned my prostate, saw some suspicious areas, and recommended a biopsy. Before my consultation, I had read an abstract of a recent research study which found that the use of a topical anesthetic reduced the pain of a prostate biopsy. I informed the urologist about the study and asked if he was going to use a topical anesthetic. He replied that he never used it but might use it after reading the study. I e-mailed him the study and it influenced him to use anesthetic gel.

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First Prostate Cancer Support Group Meeting   oooooooo

At the end of my 09/28/00 consultation, my new urologist informed me that the next monthly meeting of a support group would occur on 10/07/00 and encouraged me to attend. The meetings were sponsored by his prostate cancer organization.

I went to the meeting and attended three of the following four sessions:

  • 08:30 am - Newcomers
  • 10:00 am - Men-only
  • 10:00 am - Women-only
  • 11:10 am - Speaker
My urologist was present at all of the sessions except the women-only one and contributed abundant valuable information.

At the Men-only session, there were about 70 men seated in an auditorium-style arrangement. We began by holding hands either in chain or partial-circle formations and assertively stating "We are here to help each other." Then newcomers were invited to come up to the front and introduce themselves by telling their prostate cancer stories. Questions were asked, suggestions made, etc. I benefitted more from the Newcomers session, which I present in the next section.

After I returned home from the sessions, I invited my wife to go with me the next meeting.

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First Newcomers Support Group Session   oooooooo

There were about 20 people, which included about 3 or 4 women who rarely said anything except to identify themselves as the wife or partner of so-and-so. We sat around a square formed by tables, which facilitated discussion since all of us could see each other. Some of the men were oldtimers whose prostate cancer stories helped educate the newcomers.

The men typically stated their age, last PSA value, treatment issues (plans for treatment or results of treatment or questions about treatment), etc. Some mentioned their Gleason score. I had never heard of a Gleason score before. Months later, I began to view my PSA and Gleason Score as important characteristics of my being, such as my age, height, weight, religious preference, marital status, etc. My PSA and Gleason gradually became part of my identity.

When my turn arrived to tell my prostate cancer story, I was as tense as a violin string and my voice quavered. To help me cope with my anxiety, I jokingly referred to myself as a "nervous psychologist". It took about a year before my voice stopped quavering when I would tell my prostate cancer story.

I'll never forget the story told by Fred, who had had his entire prostate removed (radical prostatectomy) at a hospital in another state. He had done much research not only to find a top-notch surgeon but also to find a top-notch hospital. The surgeon had an excellent reputation, was doing at least two radicals a week, and had done over 500 radicals. Until I heard Fred's story, I had never thought of traveling out of town for medical care.

At the next prostate cancer support group meeting, I found the opportunity to talk with Fred one-on-one during a break between sessions. He concluded his remarks to me with the following memorable statement: "Get the best!" Fred's example impressed me profoundly and helped motivate me to begin going out of town to 'get the best' medical help.

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Prostate Biopsy   oooooooo

11/09/00 The urologist began by applying anesthetic gel with a gloved finger. After allowing 10 minutes for the anesthetic to become effective, he took six specimens, each from a different area of my prostate--left and right base, left and right apex, and left and right mid-gland.

I will now briefly sidetrack to describe the locations of the prostate areas. After my biopsy, it took me a few months to remember that the base is next to the outlet of the bladder. Urine passes from the bladder through the prostate in a duct (tube) named the urethra. The urethra emerges from the prostate at an area called the apex and then enters the penis. Midgland is the area between the base and apex.

To return to the biopsy: After sampling the six areas, the urologist took a second sample from the left apex because this was where he found the nodule. He reasoned that taking two samples from a suspicious area would increase the likelihood of finding the cancer. His assistant inserted each of the seven specimens into a vial of its own and labeled each vial with the prostate location from where it was extracted.

Months later I learned that some physicians combine biopsy specimens from several areas into a single vial. My understanding is that this procedure is most often done by physicians who treat prostate cancer by removing the entire prostate. Their thinking evidently goes something like this: "What's the difference where the cancer or cancers are located if I'm going to cut out the entire prostate?"

I also learned that combining biopsy specimens causes the loss of the location-of-the-cancer information necessary for effective treatment planning. An example is the treatment procedure of cryosurgery (also known as "cryoablation")--freezing of the prostate to kill the cancer, which has the complication of also killing the erection-enabling nerves hugging the outside of both sides of the prostate. A new and controversial development is to freeze one instead of both sides of the prostate in order to save the nerves on one side, thus preserving the ability to have erections. This would not be done, of course, without knowing whether the cancer is confined to one side of the patient's prostate.

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Evaluation of Biopsy Specimens   oooooooo

From my reading of prostate cancer mailing lists and websites, I found the name of a pathologist who was considered one of the best in the United States for diagnosing prostate cancer. My urologist knew of this pathologist and agreed that he was one of the best but advised me to send my biopsy specimens to a pathologist at the hospital adjacent to his office. He said he did not want to risk losing my specimens by shipping them out of state.

The local pathologist found no evidence of cancer in six of the seven specimens but suspected the presence of cancer in the right base specimen, and sent the slides from this specimen to an out-of-state pathologist for an "expert opinion." The pathologist she chose was the one to whom I initially wanted to send my specimens!

The second pathologist found cancer in less than five percent of the seventh specimen and assigned it a Gleason Score--a measure of the cancer's seriousness--of 3 + 3 = 6.

After I received the report with the cancer diagnosis, I decided to send the slides of the other 6 specimens for a second opinion. I discussed this possibility with my urologist and he wrote the order. The expert pathologist agreed with the first pathologist that the other 6 specimens did not contain cancer.

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Gleason Score   oooooooo

I learned that Gleason Scores range between 2 and 10 and scores below 6 are rare. Higher scores indicate more serious cancers. It is arguably the most important diagnostic finding because it is essential for deciding on a treatment. For example, almost all physicians would recommend treatment for a Gleason Score of 8, 9 or 10 whereas for a Score of 6, some physicians would raise the option of simply monitoring the cancer by periodic PSA tests, digital rectal exams, and other tests.

Another example of the importance of the Gleason Score is that my medical oncologist required a nationally-recognized expert to read a patient's slides before he would schedule a first appointment for consultation about deciding on a treatment.

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Prostate Size   oooooooo

From my participation in prostate cancer suppport groups, I learned that many newly diagnosed men did not know the size of their prostate. I was one of them. This section presents the measurement of my prostate volume over time using two types of measuring equipment. The next section explains the importance of prostate volume.

11/09/00 The urologist's report of my biopsy did not state the size of my prostate but did state that the dimensions of my prostate (derived from the ultrasound scan) were 5.8 cm (transverse) x 4.2 cm (height) x 5.4 cm (longitudinal). A few months later, I learned that if I multiplied 5.8 by 4.2 by 5.4 by 0.52, the result, 68, would be the size of my prostate in cubic centimeters (cc). By contrast, the normal size of a prostate is about 25 cc.

04/02/01 The report of my first MRI/MRSI included the following statement: "the prostate gland measures 6.3 cm transverse x 4.0 cm AP x 5.3 cm craniocaudad giving a calculated gland volume of 67 cc...."

04/03/02 The report of my second MRI/MRSI stated that "the prostate gland measures 6.3 x 4 x 5.4 cm for a calculated volume of 68 cc."

09/19/02 The report of my first color doppler ultrasound scan stated that I had a "gland volume of 109 cc".

04/03/03The report of my third MRI/MRSI stated that the "prostate gland measures 6.5 x 6.3 x 4.1 cm (volume approximately 87 cc); given the differences in measurement techniques, this is not significantly different when compared to the most recent MR scan."

10/22/03The report of my second color doppler ultrasound scan stated that my "Gland volume is 116 cc, up from 109 cc in September 2002."

The trend of these six prostate volume measurements is that my prostate is apparently growing, which is consistent with my observation that I am gradually experiencing more urinary frequency and episodes of urinary urgency. To help with these problems, I soon will be taking a new prostate-shrinking medication called Avodart, which is supposed to be an improvement as compared with an older medication called Proscar.

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Importance of Prostate Size   oooooooo

Two cryosurgeons informed me that to prepare for this treatment I would need to go on triple hormonal blockade (THB) to shrink my prostate to less than 40 cc.

Many prostate cancer physicians who administer radiation therapy (radiation oncologists), similar to the cryosurgeons, prefer to treat a prostate which is less than 40 cc. They too will recommend to patients with large prostates that they go on double or triple hormonal blockade.

I learned that triple hormonal blockade, unfortunately, can have serious side effects, such as some or all of the following: loss of libido, muscle weakness, inability to achieve an erection, breast enlargement, osteoporosis (brittle bones), low energy, depression, etc.

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PSA Tests Results--Summary   oooooooo

From 06/29/00 to 11/19/03, my PSA fluctuated between 4.08 and 6.93, except for a leap to 18.2 on 11/1/02 followed by a 12.7 on 11/22/02. It continued its decline to 6.76 on 12/13/02 and then never went higher than 6.73.

Here is an explanation of why my PSA temporarily tripled and a complete list of my PSAs.

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Prostatic Acid Phosphatase   oooooooo

The PAP value is derived from a blood sample and may be used for three purposes:

  • to assist with diagnosis and treatment planning because when elevated above its normal range, it often means that the cancer has spread beyond the prostate;
  • to help predict whether the cancer will return after the treatments of prostate removal and radioactive seed implantation in the prostate;
  • to determine if a patient's prostate cancer has changed (a monitoring procedure, similar to how the PSA test is used).

09/28/00 After my first consultation with my second urologist (non-HMO), he ordered a PAP test, whereas my first urologist (HMO) did not, perhaps because the usefulness of this test is controversial and/or to keep the HMO's costs low. My second urologist advised me to wait a week before having my blood drawn for the PAP. This test, similar to the PSA test, can be artificially elevated by the experience of a digital rectal exam or by sexual activity resulting in ejaculation or by sitting on a bicycle seat.

My PAP was 3.9 ng/ml, which was abnormal because the normal range was 0-2.7. Three subsequent PAP values were also abnormal, the highest one being 5.6.

03/13/01 My new prostate cancer physician, a medical oncologist specializing in prostate cancer, also ordered a PAP test, which turned out to be 3.90, again abnormal because the normal range for his laboratory was 0.05-3.50. Similar to my second urologist, he used the PAP test to help monitor the status of my prostate cancer. My 14 subsequent PAPs ranged from 3.50 (twice) to 6.84. Thus 12 of 14 were abnormal.

04/20/01 During my second consultation with my medical oncologist, he informed me that he had researched the literature on PAP and learned that from 10 to 20 percent of abnormal PAP findings do not indicate metastasis. His opinion was that my PAP results fell into this category. Receiving this information helped alleviate my high anxiety about whether my cancer had metastasized.

Here is access to a complete list of my PAP tests results.

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Endorectal MRI with Spectroscopy   oooooooo

04/02/01 My prostate was scanned by a combination of magnetic resonance imaging (MRI) and magnetic resonance spectroscopic imaging (MRSI). The radiologist's interpretation was that there were cancerous tumors in the right base, left apex, and midline in mid gland.

04/03/02 One year later, a repeat of the MRI/MRSI showed "no significant change compared to prior study." (Using only periodic PSA tests and digital rectal exams to determine if prostate cancer has worsened during a watchful waiting regime sometimes misses detecting a significant worsening of one's prostate cancer.)

04/03/03 A third MRI/MRSI revealed cancer in the right base and less cancer in the lift mid gland. No cancer was reported in the left apex, which was surprising because more than one digital rectal exam had revealed the presence of a hard nodule in that zone. The radiologist also found that the cancer was contained within my prostate.

He reported that my right base cancer "appears to be of moderate aggressiveness." (A recent advance in MRSI technology is the ability to evaluate the seriousness/agressiveness of the cancers. However, the Gleason score derived from evaluating prostate biopsy samples continues to be the most valid method of determining cancer aggressiveness.)

The radiologist could not compare the cancer aspect of this scan with the 2001 and 2002 scans because the compact disk I lent him did not contain the MRSI portion of these scans. I am in the process of arranging for him to receive this material.

Finally the comparisons of the 2001, 2002, and 2003 scans were made. The results: no changes in the sizes of the cancers and no new cancers.

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Bone Scan   oooooooo

01/15/01 One eminent prostate cancer physician does not recommend this scan if the PSA is 10 or less and the Gleason score is 6 or less. He refers to the fact that only 1 of 200 newly diagnosed patients with PSAs of 10 or less have abnormal bone scans. Despite this statistic, my urologist ordered this test because my prostatic acid phosphatase (PAP) was abnormal.

My scan was done at a hospital 32 miles from my home as an outpatient procedure. I went to this particular hospital because a radiologist who excelled at interpreting bone scans evaluated them at this hospital. When I arrived at the hospital, I completed the registration papers and wrote them a check for $602, because I was having this test outside of my HMO. Later I would pay the radiologist $254, again out-of-pocket.

This scan is used to determine if there is cancer in the bones, different from a DEXA scan, which is used to determine brittleness of bones (osteoporosis). A tiny amount of radioactive material is injected into a vein and eventually is absorbed by the bones.

After injecting me, the technician instructed me to return in an hour (perhaps it was two hours). Then I had to lie on a table, which was sufficiently narrow that I worried about falling off. The scanning device passed over my entire body for about 30 minutes.

My bone scan showed no spreading (metastasis) of the cancer in my prostate to my bones.

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Color Doppler Ultrasound Scan   oooooooo

09/19/02 A color Doppler ultrasound scan of my prostate revealed four areas suspicious of cancer. The physician (not a urologist but a radiologist) wanted to do a biopsy to determine if these areas were cancerous. It probably would have taken only 10 minutes more for him to do the biopsy but I rejected his offer. One reason for my rejection was that I was not sure if the results would change how I was managing my prostate cancer.

He also found a "postvoid residual volume 70 cc." This means that I did not completely empty my bladder when I urinated immediately before I entered his ultrasound room; 70 cc of urine remained. Although this is not a prostate cancer issue, it is a prostate problem which is not minor. Some men undergo partial removal of the prostate to correct this condition. I am currently taking medication, Flomax, to help alleviate this problem.

Although his office was 190 road-miles from my home, I consulted him because:

  • he had a national reputation for interpreting ulrasound scans;
  • he had a national reputation for doing ultrasound-guided biopsies which succeeded in finding prostate cancer;
  • his ultrasound equipment was state-of-the-art (cost approximately $250,000).
10/22/03 Thirteen months after my first scan, I had a second one using the same physician and same equipment. His report's conclusion was: "Multiple areas of abnormality, mainly at the left mid to left apex region. The overall size and configurations are essentially the same as on the previous examination of September 2002. There are no new lesions. With stable serum PSA levels he may stay on watchful waiting management." I was impressed by the fact that, unlike the first scan, he did not recommend a biopsy.

"The post-void residual urine volume is 68 cc." almost the same as the first scan's finding thirteen months earlier of 70 cc. Perhaps I should discontinue my Flomax medication, which I began a month after the first scan.

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Deciding about Prostate Cancer Treatment   oooooooo

From the beginning I was not interested in undergoing a radical prostatectomy (RP)--a prostate surgery procedure which would remove my entire prostate gland.

I viewed my options as:

  • cryosurgery (freezing of the prostate), also known as "cryoablation of the prostate"
  • radiation therapy (RT)--destroying the cancer by using x-rays or other types of radiation
  • watchful waiting (WW)--no cryosurgery, no radiation therapy, no radical prostatectomy, no surgical or medical castration (also known as "androgen deprivation therapy" or "ADT" or "hormonal blockade"). This is the no-treatment option.
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Crysurgery for My Prostate Cancer?   oooooooo

A cryosurgeon agreed to evaluate my 04/03/02 MRI/MRSI films, as contrasted with doing a biopsy, to determine if I am a candidate for cryosurgery. One issue is whether my mid-gland tumor is too close to my urethra for cryosurgery to be successful. (During cryosurgery, a warming catheter is inserted into the urethra to protect it from being frozen. The downside is that this warming prevents cancers near the urethra from being sufficiently frozen to kill the cancer.)

I called the film library at the facility where I had my MRI/MRSI and asked about sending my films to the cryosurgeon. The librarian asked if I wanted to send a hardcopy of the films or a compact disc version. I chose the CD. Then she asked if I also wanted a CD; I said "Yes". About two weeks later, the cryosurgeon called and informed me that he and a colleague looked at my CD and concluded that I was a candidate for cryosurgery. I said I would contact him if I decided to proceed with the procedure.

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Radiation Therapy for My Prostate Cancer?   oooooooo

I learned that there were two types of radiation therapy, which I think of as "internal" and "external". The internal, known as brachytherapy, consists of two subtypes, permanent seed implants (SI) and temporary wire implants (HDR brachytherapy). The external, known as external beam radiation therapy (EBRT), directs the radiation from outside of the prostate. The subtypes of EBRT are "conventional" RT, 3D conformal RT (3DCRT), intensity modulated RT (IMRT), proton beam RT (PBRT), and neutron beam RT.

My medical oncologist advised me that if I chose RT, that I should have IMRT. A radiation oncologist informed me that preparation for IMRT would not require the shrinking of my prostate (accomplished by means of triple hormonal blockade). However, another reliable source informed me that my large prostate would make me a bit more vulnerable to the IMRT possible side effect of rectal bleeding.

I may send my biopsy tissue specimens to an expert prostate cancer pathologist for Ploidy, P53, and BCL2 analyses. (The Ploidy, similar to the Gleason Score, is a measure of the seriousness of the cancer, and helps to decide about the risks of WW. The P53 and BCL2 results help predict the cancer's response to radiation therapy.)

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No Treatment for My Prostate Cancer?   oooooooo

Although diagnosed in November of 2000, I continued, until June of 2003, to be unable to choose a prostate cancer treatment. I struggled many times with trying to answer my medical oncologist's question: "Do you want to kill your cancer or do you want to avoid the side effects of killing it?" After more than a year of remaining undecided, I began to view myself as being on watchful waiting by default. I would have preferred being on watchful waiting by choice.

I am a good candidate for WW because my Gleason Score is less than 7, my PSAs are less than 10, and my MRI/MRSI showed only "a small volume of disease". I would be an excellent candidate if my cancer was in one rather than both sides (also known as "lobes") of my prostate and if I did not have a nodule that could be felt during a digital rectal exam.

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Diet and Supplements for My Prostate Cancer   oooooooo

My prostate cancer led me to modify my diet: fish, breast of chicken or turkey 2 or 3 times a week; soy every day; less fat; no more than one cup of yogurt or non-fat milk a day; more vegetables; and more cooked tomatoes. I changed my Vitamin E supplement from the predominantly alpha tocopherol form to the predominantly gamma form; added a mushroom extract; added another antioxidant (alpha lipoic acid).

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Becoming an Empowered Patient   oooooooo

My participation in prostate cancer support groups and my reading of hardcopy books and internet resources has, for example:

  • enabled me to ask for and be given a topical anesthetic by a urologic oncologist who had never done a biopsy using a topical anesthetic

  • empowered me to determine that a particular urologist should not do my biopsy because he was going to use his finger instead of ultrasound equipment to locate the prostate areas to be sampled

  • helped me find a nationally-recognized medical oncologist to serve as my primary prostate cancer physician.
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Changing My Health Insurance   oooooooo

09/18/00 Consulted for the first time with a physician outside of my health maintenance organization (HMO). At this time I was paying a monthly premium to the HMO and the United States Government (Medicare program) was also paying premiums to the HMO.

11/25/00 Applied to change my health insurance plan because I was spending a lot of money seeing physicians outside of my HMO. I paid out of my own pocket for an initial consultation with my second urologist, ultrasound evaluation without biopsy, ultrasound-guided biopsy, first pathology evaluation, second pathology evaluation, consultation with a urologic oncologist, consultations with two medical oncologists, blood tests (total PSAs, free PSAs, prostatic acid phosphatase), bone scan, etc.

Examples of what I paid out of my own pocket: $600 to the first pathologist after asking her, on the basis of professional courtesy, to reduce her initial fee of $1,200; $602 to a hospital for a bone scan and $254 to a radiologist for interpreting the scan.

I was convinced that changing my health insurance would enable me to have:

  • more opportunities to consult with first-rate prostate cancer physicians;
  • PSA blood tests more fequently than would be posssible with my HMO (for example, at the beginning of my prostate cancer journey, I sometimes had monthly PSA tests);
  • more access to cutting-edge diagnostic and treatment equipment (for example, color doppler ultrasound equipment).
02/01/01 Received notice that my new health insurance coverage was in force. I was now enrolled in Medicare plus a Medicare supplement insurance plan.

03/13/01 Changed my prostate cancer physician from an eminent urologist specializing in prostate cancer to an eminent medical oncologist specializing in prostate cancer. My new insurance plan made this change much less costly.

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Second Opinions   oooooooo

I am glad that I changed from my HMO urologist to one in whom I had confidence. For example, my first and only consultation with my HMO urologist lasted 20 minutes, during the last 5 minutes of which he answered my questions with his hand on the doorknob getting ready to leave. By contrast, my first consultation with my second urologist lasted 50 minutes. I left the office of my first urologist in a confused state and riddled with anxiety whereas I was less disturbed and more informed when I left my second urologist's office.

Another example of the benefit of a second opinion is that a nationally-esteemed pathologist was able to diagnose my prostate cancer whereas my first pathologist was unable to do so.

Obtaining more than one opinion from physicians within the different specialties helped me make informed and prudent choices about coping with my prostate cancer. So far I have consulted with 3 urologists, 2 urologic oncologists, 4 medical oncologists, 2 cryosurgeons, and 2 radiation oncologists.

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Types of Prostate Cancer Physicians   oooooooo

When I consulted my first urologist I assumed that all urologists had a good knowledge of prostate cancer. I gradually learned that my assumption was incorrect. Some examples:

  • I read about a urologist who specializes in helping men who have difficulties achieving erections (erectile dysfunction).
  • I imagine there are urologists who perform many operations for removing prostate tissue near the urethra in order to help men with urinary problems but perform few operations for removing the entire prostate (radical prostatectomy) in order to treat their prostate cancer.
  • I learned about one urologist who invented a device to help women who were unable to hold their urine (urinary incontinence). He operated on many women to install his device in their bodies.

At the time I consulted my first urologist I had no knowledge of the roles medical oncologists played in dealing with prostate cancer. An example occurred when my second urologist informed me that he would be retiring from clinical practice. I began searching for another physician and was informed about several prostate cancer patients who were receiving treatment from a particular medical oncologist and were very satisfied.

During my consultation with this popular medical oncologist, I learned that although he worked with many prostate cancer patients, he had little experience in helping men select a treatment, which was my interest. He worked only with men whose cancer had spread beyond the prostate. My lack of knowledge resulted in a waste of my time and money.

My medical oncologist, who specializes in prostate cancer, consulted with me about selecting a treatment. He also provides treatment to men whose cancer has spread beyond the prostate. He is presently supervising my watchful waiting, which I prefer to call "conservative management".

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My Wife's Help   oooooooo

Louise takes notes during my consultations, which enables me to concentrate fully on asking questions and understanding the answers. Her questions always elicit valuable information from physicians. She empathically listens to me vent my emotional distress and confusion, and helps me plan my next steps but leaves the final decisions to me. She does not complain about my withdrawal from her during my episodes of distress and preoccupation. And so on. I love her more now than before my prostate cancer diagnosis.

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Alleviating Disturbed Emotions   oooooooo

After being diagnosed with prostate cancer, I became depressed and anxious; an example is being anxious while waiting for my PSA test results. Louise reacted with similar but less intense emotions. We benefitted from:

  • consulting, as a couple, a psychotherapist;
  • participating, as a couple, in a prostate cancer support group;
  • Louise participating in a women-only prostate cancer support group.
I benefittedfrom:
  • consulting, as an individual, a psychotherapist;
  • participating in a men-only prostate cancer support group;
  • describing myself during more than one support group meeting as a "nervous psychologist";
  • informing the people in my life that I had prostate cancer, a difficult disclosure for me;
  • reading the messages posted on prostate cancer discussion forums and mailing lists;
  • asking questions on prostate cancer mailing lists (at first I disguised my name);
  • answering some questions from other patients/survivors posted to mailing lists;
  • co-moderating, with my former urologic oncologist, several sessions of a prostate cancer support group for men and women, and moderating several sessions by myself;
  • creating a website to help people to begin using the internet to learn more about prostate cancer symptoms, PSA tests, prostate biopsy, prostatectomy--a type of prostate surgery, other prostate cancer treatments, etc.;
  • creating this my-prostate-cancer-story website.
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Money and Travel   oooooooo

The changes I made in my medical care reduced our emergency funds because we spent more for health insurance, travel, hotels, etc. Some examples with respect to travel: the facility for my first two MRI/MRSI tests is 420 air-miles from our home and my medical oncologist's office is 125 road-miles away.

We feel the higher-quality care I have received for my prostate cancer was worth the extra expense and effort and are grateful that we currently have the necessary money and energy.

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Terrifying PSA Escalation   oooooooo

After three days of not having a bowel movement, I found myself, on 10/05/02, being unable to urinate. I went to an urgent care facility and a physician (not a urologist) ordered a Foley catheter inserted. After a registered nurse inserted the catheter, I was able to urinate.

Nine days later, the nurse of a third urologist removed my catheter. (My second urologist, the one who had biopsied my prostate and found its cancer, had retired from clinical practice.) After the removal of my catheter, I was able to urinate without its assistance.

Eighteen days after the catheter was removed, my PSA, which was 5.22 on 08/28/02, skyrocketed to 18.2 on 11/01/02. The urologist with whom I discussed this terrifying finding (a fourth urologist) ordered another PSA in the event it was a laboratory error.

The next day I talked about this finding and my intense anxiety about it during a prostate cancer support group meeting. The urologist who served as a consultant to this group (the one who found my cancer) told me that the PSA jump could have been caused by the catheter insertion traumatizing my prostate, and, if so, that my PSA would probably return to its pre-catheterization level. This information significantly reduced my anxiety. Unfortunately, neither my third nor fourth urologist had mentioned this possibility.

The consultant's prediction turned out to be correct, as indicated by the following trend: My PSA dropped from 18.2 (on 11/01/02) to 12.7 (11/22/02) to 6.76 (12/13/02) and remained in the 5 to 7 zone. (For example, it was 5.45 on 06/11/03). A complete list of my PSA values is presented in the next section.

Both my third and fourth urologists agreed with my belief that my enlarged prostate contributed to my inability-to-urinate episode.

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PSA Tests Results--Complete   oooooooo

Notice below that since 06/29/00, there have been periods when I have had my PSA measured every one or two months, a service which probably would not have been available to me if I had remained a patient with my health maintenance organization. At this junction in my prostate cancer journey, I would be too ill at ease if I had to wait more than three months before my next PSA measurement.

09/02/93 1.8
06/29/00 6.4
10/06/00 5.7
12/21/00 6.6
02/06/01 5.6
03/13/01 4.66
04/20/01 5.78
05/25/01 4.48
06/22/01 4.16
08/03/01 6.93
09/07/01 6.15
10/12/01 5.36
12/07/01 6.03
01/22/02 4.94
02/22/02 5.58
04/24/02 4.71
06/26/02 5.25
08/28/02 5.22
11/01/02 18.2 (See Terrifying PSA Escalation in the previous section.)
11/22/02 12,7
12/13/02 6.76
01/16/03 6.26
03/14/03 6.7
04/16/03 6.73
06/11/03 5.45
09/03/03 4.19
11/19/03 4.08
05/12/04 3.12
08/04/04 2.67
10/27/04 2.01
01/19/05 2.44
04/28/05 2.40

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PAP Tests Results--Complete   oooooooo

10/06/00 3.9  (Laboratory 1, normal range 0-2.7 ng/ml)
10/23/00 5.6
12/21/00 3.3
02/06/01 4.9
03/13/01 3.90 (Laboratory 2, normal range 0.05-3.50)
04/20/01 4.80
05/25/01 4.20
06/22/01 4.00
08/03/01 4.40
09/07/01 3.70
12/07/01 3.50
01/22/02 3.60
02/22/02 3.50
04/24/02 3.60
08/28/02 4.60
12/13/02 6.84 (two months after removal of my Foley catheter)
01/16/03 3.74
04/16/03 4.24
06/11/03 4.48
09/03/03 3.28
11/19/03 5.46

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Another Biopsy?   oooooooo

My first and only biopsy found cancer in the right base of my prostate, which was evaluated as a Gleason Score of 3 + 3 = 6. However, my color doppler ultrasound scan and three spectroscopic MRIs found cancer in other areas too. Thus, it appears that the biopsy did not sample all of the cancer areas. What if the other areas had more aggressive cancers, that is, had Gleason scores of 7 or higher?

Before continuing with the biopsy issue, I need to explain something about biopsies, color dopppler ultrasound scans, and spectroscopic MRIs. The biopsy is the primary method of determining the presence and seriousness of prostate cancer whereas the other the other two methods are less accurate and used to supplement the information derived from the biopsy tissue.

To return to the advisability of another biopsy: The issue of the aggressiveness of the other cancers in my prostate moved from the background to the foreground of my consultations with my medical oncologist when I told him I had decided not to undergo radiation or cryosurgery for my prostate cancer. Another way of saying this is that I had changed from watchful waiting by default to watchful waiting by choice. He then recommended another biopsy to determine if my other cancer areas were more aggressive than Gleason 6.

My oncologist's thinking was that if all of my prostate cancers were Gleason 6 or less, he would recommend my taking Avodart (a medication newer than Proscar and being touted as more effective); if one or more of my cancers were Gleason 7 or more, he would recommend Avodart plus Casodex (a powerful hormone blockade drug).

Proscar and Avodart are weak hormone blockade drugs. Either would have a weak effect on shrinking my prostate, but would improve my urinary symptoms and help prevent my suffering another episode of inability to urinate. Another advantage of these drugs is that they slow or sometimes stop the growth of prostate cancer, and sometimes kill it. Casodex, by contrast, is both a strong prostate-shrinker and cancer-slower/stopper/killer but also has strong side effects, which I prefer to avoid at this time.

I hope to decide by the time of my June 11, 2003 appointment with my medical oncologist whether to undergo another biopsy.

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June 11, 2003 Update on My Prostate Cancer   oooooooo

I continue to reject both cryosurgery and radiation therapy because it is more important for me to avoid the side effects of treatment than to kill my cancer. I am now on watchful waiting by choice than by default.

I have not sent my biopsy tissue specimens to an expert prostate cancer pathologist for Ploidy, P53, and BCL2 analyses.

On 06/11/03, the blood for my latest PSA test was was drawn; the result was a PSA of 5.45. This is not far from my 06/29/00 PSA of 6.4, which contributed to my being referred to a urologist, which in turn led to my being diagnosed as having prostate cancer.

I used to spend more time, energy, and money coping with my prostate cancer than with any of my other medical problems. Now I pay equal attention to my non-prostate-cancer medical problems, such as my non-cancer-caused enlarged prostate ("benign prostate hyperplasia", also known as "benign prostate hypertrophy", also known as BPH).

I decided not to have another biopsy, despite the possibility that some of my prostate cancer areas may have a Gleason Score of 7 or higher. This decision was based on the following reasons:

  • my PSA values during the past three years have remained in the 5 to 7 range with no upward or downward trend;
  • there were no changes in prostate cancer shown on my second and third MRI/MRSIs as compared with the first;
  • the seriousness of the cancer shown in my third MRI/MRSI was evaluated as "moderate" rather than "aggressive"
  • My medical oncologist will be carefully monitoring my prostate cancer and at the first sign of worsening, I will go on an aggressive hormone blockade drug, such as Casodex, to stop the cancer. Then I would have time to decide whether to have more aggressive treatment, such as radiation therapy.
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November 30, 2003 Update on My Prostate Cancer   oooooooo

11/20/03 I had my first dose of Aredia, 30 mg, a bisphosphonate which is administered intravenously. (This was half the dose I will be receiving for my second and subsequent doses; the purpose of this lower dose is to prevent side effects.) Although Aredia kills prostate cancer cells, its primary purpose is to treat my osteoporosis because my oral bisphosphonate, Fosamax, had failed to strengthen my brittle bones. (I had been diagnosed as having osteoporosis before I was diagnosed as having prostate cancer.)

11/22/03 I began taking the prescription drug Calcitriol (one 0.5 mcg capsule daily), a form of Vitamin D which is better assimilated than over-the-counter Vitamin D. Another advantage of Calcitriol is that it slows the growth of prostate cancer. However, the primary purpose of the Calcitriol was to assist my calcium intake with strengthening my bones.

On or about 12/01/03, I will begin taking the prescription drug Avodart (one 0.5 mg softgel daily) in order to shrink my enlarged protate and thereby prevent both another inability-to-urinate episode and avoid surgery to reduce the size of my prostate. Another advantage of Avodart is that, similar to Proscar, it has the potential to slow the growth of prostate cancer. It is newer than Proscar and expected to be more effective and, similar to Proscar, lowers PSA.

My wife and I continue participating in prostate cancer support groups--she with her women-only group, I with my men-only group, and both of us with our men-and-women group. At these meetings, I try to help one or two newly-diagnosed men, which helps me even if I do not succeed in helping them.

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April 28, 2005 Update on My Prostate Cancer   oooooooo

Avodart: On 12/23/03, I began taking Avodart (one 0.5 mg softgel daily). On 05/25/04, my medical oncologist advised me to increase my Avodart dose from 0.5 to 1.0 mg because my dihydrotestosterone (DHT)--measured from a blood sample--rose from 7 in Feb 2004 to 23 in May 2004. This meant that the 0.5 mg of Avodart was not doing its job of blocking the conversion of testosterone to DHT, which is five times more potent than testosterone in stimulating the growth of prostate cancer.

PSA Results:
11/19/03 4.08
02/18/04 3.33
05/12/04 3.12
08/04/04 2.67
10/27/04 2.01
01/19/05 2.44
04/28/05 2.40
I believe the Avodart reduced my PSA during the past year. (Although Avodart can reduce PSA by up to 40 percent it does not necessarily reduce the volume of prostate cancer.)

Digital Rectal Exams: Done about every 6 months by my medical oncologist showed no change since the Nov 2003 update and no change from my first DRE by him, which he did in March 2001.

Color Doppler Ultrasound Scan: This scan of my prostate, my third, done in April 2005, showed no change in my cancer from my second scan, done in Oct 2003. My prostate size was 85 cubic centimeters (cc) as compared with 109 cc measured by my Sept 2002 scan and 116 by my Oct 2003 scan. The 27 percent reduction from 116 to 85 was probably caused by the Avodart.

Diet: I believe that diet can contribute much to slowing or preventing the growth of prostate cancer.

I continue to avoid beef, lamb, pork, bacon, ham, duck, goose, dark-meat chicken, dark-meat turkey, egg yolks, cheese, butter, and milk. I continue to eat breast of turkey, breast of chicken, and fish. I try to limit the amount of animal protein I eat to no more than once per day. I believe I would be healthier if all of my protein came from plants but I do not do well on this diet.

I obtain much of my protein from soy, tofu, nuts, legumes, grains. and seeds.

I prefer whole grains, for example, brown instead of white rice, 100% whole wheat bread instead of partial whole wheat bread or white bread.

I try to avoid canola oil, corn oil, soybean oil, flax seed oil. I try to limit myself to olive oil and sesame oil.

I try to eat foods that are grown without pesticides, hormones, or other chemicals. I try to avoid foods containing additives (for example, preservatives, coloring substances, artificial flavorings) and mercury. An example of a high-mercury fish is swordfish.

I avoid caffeine, alcohol, and sugar. Fruits are sweet enough for me.

I prefer fresh fruits and vegetables over canned. I prefer to get my wheat from freshly-baked bread than from crackers that have been in a box for several months.

Intravenous Aredia and Zometa: On 18 Feb 2004, I received my second Aredia treatment. The dose was 60 mg as compared with the first-time dose of 30 mg. (The purpose of the lower initial dose was to prevent side effects.) Additional treatments were on:
12 May 2004 Aredia, 60 mg
05 Aug 2004 Aredia, 60 mg
27 Oct 2004 I refused Aredia because of my fear that my jawbone would deteriorate (osteonecrosis)--a recently-discovered side effect of treatment with either oral or intravenously-administered bisphosphonates. (Fosamax, Actonel, Aredia, and Zometa are all bisphosphonates.)
19 Jan 2005 Zometa, 2 mg

I decided to risk resuming bisphosphonate treatment because:

  • it's good for my osteoporosis and a new non-bisphosphonate medication, Forteo, has the potential side effect of cancer;
  • deterioration of the jaw is a rare side effect;
  • clinical experience is beginning to show that it is more likely to happen to patients who are receiving it monthly as compared with my receiving it every three months;
  • it may prevent prostate cancer from getting into my bones. My medical oncologist changed me from Aredia to Zometa, 2 mg (half the usual dose), because my medical insurance (Medicare) had reduced its reimbursement to him to an amount less than what it cost him.
28 Apr 2005 Zometa, 2 mg.

Treatment Status: I continue to avoid prostate cancer treatments such as radical prostatectomy, radiation, cryosurgery, and high intensity focused ultrasound. The only treatment I am receiving is a mild form of hormone blockade--taking Avodart.

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Relevance of Illnesses Other than Prostate Cancer   oooooooo

08/29/02 I had a scan (Axial Electron Beam Computed Tomography) at a center of excellence recommended by my medical oncologist. The purpose was to determine the calcification status of my coronary arteries. He viewed this as a routine checkup of one aspect of my health, a recommendation which stemmed from the same philosophy which also led him to recommend a colonoscopy.

The scan revealed that I had an "extensive plaque burden", which led me to search for a cardiologist who specialized in non-invasive treatment for this problem. He prescribed Zetia and Lipitor. I hope these drugs will help me avoid undergoing an invasive plaque-alleviation procedure.

I now believe that I have a greater chance of dying from heart disease than from prostate cancer--a sign of progress, because when I was first diagnosed with prostate cancer, I became overly focused on my prostate and neglected to give, for example, my heart and bones, adequate attention.

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Next Page: The second page of this two-page website contains the following five sections:

More Prostate Information: I also have a website to help men with urinary problems caused by a noncancerous enlarged prostrate* (BPH). (*I deliberately misspelled "prostate" as "prostrate" to enable people who misspell "prostate" to find this website.)

NOTE: If you liked this website, emailing me your thanks will reward me for creating it and help sustain my motivation to keep it going for future readers.

DISCLAIMER: The purpose of this website is to educate you about prostate cancer, not to give you medical advice. Therefore, before you use any of the information in this website, discuss it with your healthcare provider(s). I am not responsible for any negative effects you may experience from reading and/or using the information in this prostate cancer website and/or the resources to which it guides you.

Copyright © 2002, 2003, 2005, and 2006 by Lawrence J. Bookbinder, Ph.D. and last revised on September 11, 2006. I also have websites on sympathy versus empathy and on empathic listening.

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