Basic Answers to Commonly Asked Questions About Prostate Cancer Latest Revision, Fall 2018 Printable here
A BEGINNER’S GUIDE TO PROSTATE CANCER
We are not doctors or scientists. The information below has been abstracted from many sources. Please understand that the answers are generalized in order to be simple and brief. The field of prostate cancer detection and treatment is a very rapidly and evolving field. For that reason, the Prostate Cancer Support Association encourages all interested parties to take this docu- ment as a starting point and search for answers that apply to you. Do not trust any one source, including this one. This docu- ment is published as a public service. Feel free to copy it
What and where is the prostate?
The prostate is a walnut-sized gland in men located directly in front of the rectum, just below the bladder and surrounds the urethra – which drains the urine from the bladder. This gland produces part of the seminal fluid and protects against infection and nourishes sperm for fertilization.
What is prostate cancer (PCa)?
It is prostate cells that grow out of control. If they grow and spread, they can eventually cause death. Most prostate cancer grows slowly and perhaps would not cause any problems for ten or more years.
What causes PCa?
No one knows, but PCa growth may be linked to a high fat diet, family history of cancer, or genetic code.
Who gets PCa?
About one in seven men will receive a diagnosis of PCa during their lifetime. Each year 200,000 or more American men are diagnosed with PCa. African-American men have the highest rates of PCa in the world. They are about twice as likely to develop PCa than Caucasian men and twice as likely to die from PCa.
Hispanics, Asians, and Native Americans are less likely than Caucasian men to have PCa. Men with a close family relative with PCa (father, brother or son) are more likely to have PCa than other men.
How deadly is this disease?
Between two and three percent of American men die of PCa, or less than 30,000 every year. Most men – including most men with PCa – die from other causes.
Is early detection and early treatment useful?
The membership of the Prostate Cancer Support Association consists of survivors who were diagnosed and treated for PCa. We have benefitted by the detection and treatment of our PCa. We believe for any cancer, including PCa, early detection and early treatment results in increased survival and a better quality of life.
Screening the general male population for PCa became a controversial subject in 2012 when US Preventative Services Task Force (USPSTF), an independent group of public health experts recommended that physicians not screen for PCa. In 2017 this agency changed their recommendation and now recommend that men between 55 and 69 years of age talk with their personal physician about getting screened, learn of the benefits and harms, and then make a decision as to whether or not to get screened. Recommendations by other experts, most notably the American Urological Association (AUA) and the National Comprehensive Cancer Network (NCCN) recommend that screening be done for select groups and select ages. The detailed recommendations of each entity is beyond the scope of this guide, but the earliest screening that was recommended was age 40, when there is a known family history of prostate cancer, or if the man is African American.
PCSANM recommends that you discuss screening with your personal physician and decide for yourself.
How is PCa detected?
Most cases are found by using the simple blood test for Prostate Specific Antigen (PSA). PSA leaks from the normal prostate cells in small amounts, but an elevated rate of leakage may indicate the presence of prostate cancer cells. If the PSA is abnormally high and the doctor feels something in the gland, a biopsy is usually performed. PSA is also used after therapy as a monitor to indicate therapy failure and if PCa is under control.
What is an abnormal PSA reading?
PSA readings of up to 2.5 ng/ml (nanograms per milliliter) are considered normal for a man in his forties. As men grow older, an increase in PSA is normal. Thus, a reading of 3.9 for a 70-year-old man would be considered normal. (African-Americans should lower these readings by about 0.5). A rapidly rising PSA may indicate prostate cancer. High PSA often indicates the disease is outside the prostate capsule.
The TNM classification system
As part of the initial exam for prostate cancer, the doctor will do a digital rectal exam. The doctor can feel the back of the prostate through the rectal wall and can feel for abnormalities. The results are reported using the TNM classification system. T refers to tumor. T1 and T2 indicate localized PCa. Stage T3 and T4 indicate increasing degrees of the tumor outside the prostate. The N refers to disease in the Lymph Nodes, and M refers to metastasis.
How do I know if I have PCa?
A biopsy is used to confirm suspected prostate cancer. An ultrasound probe is inserted into the rectum and hollow needles are “shot” through the rectal wall into the areas of the prostate most likely to have cancer. Twelve samples or cores are commonly taken. These biopsy cores are tiny samples of tissue that can be inspected by a pathologist under a microscope. The pathologist will determine if they are cancerous by their cell structure.
How can a person judge the aggressiveness of the disease?
If any of the biopsy tissue is cancerous, the pathologist will assign a pair of numbers (Gleason Sum or Score) to each tissue sample. This sum identifies the aggressiveness of the cancer. Two (1 + 1) is the very lowest, or best. Ten (5 + 5) is the most aggressive, or worst.
What is clinical staging and risk evaluation?
Clinical staging is the doctor’s estimate of the size and location of the cancer based on evidence from diagnostic tests. The starting point for the various staging systems is the use of the PSA value, TNM score and the Gleason score. Using these criteria, the physician will assign a risk category to the patient’s diagnosis. The three major risk categories are low risk (PSA< 10, Gleason <6, tumor confined to prostate) intermediate risk (PSA 10-20, Gleason 7, tumor confined to prostate), and high risk (PSA > 20, Gleason 8-10, and tumor extends outside the prostate). The risk group assigned is very important as this will determine the type of
treatment recommended to the patient. Going into detail of staging is beyond the scope of this beginner’s guide.
What treatment choices are available?
Surgery (Radical Prostatectomy) Robotic surgery is replacing the open radical surgery and laparoscopic techniques. The nerve-sparing technique is preferred. The lower abdomen is entered, the gland is removed and the severed urethra is sewn back together. The patient usually spends three to six days in the hospital if the open surgery is used, fewer days with the robotic and laparoscopic techniques. A portable urinary catheter is worn for a week or longer. Surgeons usually recommend this treatment for healthy men in their sixties or younger.
External Beam Radiation is used to destroy the gland, and the cancer within it, from outside the body. This usually takes 35 or more treatments (five days a week, for seven weeks). It takes about 15 minutes per treatment. No hospital stays are needed unless there is a rare complication. This treatment is often recommended to men who are 65 years or older. Proton Beam therapy is a specialized form of external beam therapy. The major advantage of proton treatment over conventional radiation is that the energy distribution of protons is almost entirely in the tissue of the prostate, with minimal damage to the surrounding tissue.
Seed Implants (Brachytherapy) are radioactive pellets (“seeds”) inserted in the gland through hollow needles. Seed implantation is often performed on an outpatient basis. A urinary catheter may be worn for up to three days.
Another form of brachytherapy is high dose, where highly radioactive material is slid into the prostate through tubes for a short time (hours) and removed. An overnight stay in the hospital may be required.
Cryosurgery (freezing) is a relatively new technique during which hollow probes are set into the prostate from the perineum (the area between the scrotum and the anus) and the cancerous tissue is frozen.
Focal Laser Ablation Therapy is a new technique in which a laser is used, guided by multi-parametric MRI images, to destroy cancerous tissues in the prostate. This technique is still in clinical trials at this time and is only available in select facilities.
High Intensity Focused Ultrasound (HIFU) is a new technique, similar to external beam radiation, during which high intensity sound is used to destroy cancerous tissues in and near the prostate. HIFU is still considered experimental and has not been approved for use in the United States.
The treatments outlined above are “local” treatments. They only treat the prostate gland or the local area in and around the prostate. Local treatments generally have disease recurrence of four to five percent per year. After ten years, between 30 and 50 percent or more will have disease recurrence. PSA readings after therapy are used to detect disease progression (recurrence). Recurrence is not a death sentence. Average life expectancy after relapse from surgery for PCa is 13 years whereas for other cancers it is three years or less.
Hormonal Therapy (HT), a systemic therapy, is used to block testosterone. Testosterone production and prostate cancer cell utilization can be blocked with drugs called LHRH agonists and anti-androgens. This is sometimes called chemical or medical castration. This is usually reversible when one stops taking the drugs. HT can be used alone, or used before surgery or radiation to shrink the prostate, or to delay the disease and give a person time to study the available options, or in cases (such as cancer that is metastatic when initially diagnosed) where local therapies cannot be used. The important thing about HT is that it is “systemic” and works throughout the body. There are documented cases of no cancer being found in the prostate after a course of HT. Longer HT results in a higher percentage of no cancer being found. Studies have shown a six to 12-month HT treatment is better than a three-month treatment. In some circumstances, HT treatment may be continued for years.
Up Front HT – In the past HT was used when PCa had progressed to lymph nodes or bones. Now it is used by some medical oncologists “up front” – as soon as PCa is detected. Up front HT is usually prescribed for 12 to18 months. This treatment is showing great promise for treating stage T1 & T2 cases, but it is too soon to be sure that it actually results in longer life. Five year results are very encouraging. Early hormone therapy when combined with local therapies recently has shown significant reduction in prostate cancer deaths. Up front HT is also used when the cancer is too advanced, at the time of diagnosis, for the use of localized therapies.
Active Surveillance or Watchful Waiting – Both terms mean no active immediate treatment. There are some studies that indicate this option results in just as long a life as immediate treatment. This option is most often recommended to men 75 years or older, to men with less aggressive forms of PCa, or to younger men who have a condition that makes other treatments risky. With active surveillance testing is performed regularly.
What are the side effects or complications of these treatments?
Surgery – Between 24 and 62 percent of men may become sexually impotent, and five to 19 percent may become severely incontinent. Some studies show incontinence over 60 percent. Other complications that are usually well below 10 percent are: fecal incontinence, major bleeding, blood clots in the legs or lungs, bladder neck narrowing, and urethral narrowing.
External Beam Radiation – Following radiation, from 12 to 30 percent of men experience some degree of sexual impotence. Incontinence also occurs in one to seven percent of men. Inflammation of the bladder, rectum and intestines during treatment usually goes away. Chronic inflammation can result in strictures that require surgical intervention in up to two percent of men. Complications from cryosurgery and HIFU are similar. Fewer complications have been reported with laser ablation therapy.
Seed Implants – Impotence is reported in 10 to 25 percent of men, incontinence in two percent or less. Urinary problems – urgency, frequency, burning, irritation – occur in about 25 percent of men. Rectal problems – pain, burning, frequency, urgency and diarrhea – are a problem in about 20 percent of men, but most go away with time. The above side effects may be less than stated because of improving skill of the practitioners.
Hormonal Therapy – Impotence is common during HT, and diarrhea is a problem in 10 to 20 percent of cases. Other side effects may include: fatigue, hot flashes, breast soreness or enlargement, blood clots, nausea and weight gain. Under prolonged treatment, liver damage or osteoporosis may occur.
Active Surveillance – There are no side effects from this, as no active treatment is being used. If the disease has progressed, HT can be used and usually is effective for three to six years on advanced PCa. Don’t be too alarmed if you are diagnosed with stage T1 PCa. A total of 85 percent of these men take up to five years to progress to stage T2, and have another several years to progress further. Since early stage disease usually will not become life threatening for 15 or more years, active surveillance is a good option for anyone whose life expectancy is under 15 years. A 70- year-old man has an average life expectancy of 13 more years. An 80-year-old man would have eight more years.
What are my chances for a cure?
Doctors cannot determine whose PCa will progress to become clinically significant and whose will not. Generally, patients with low PSA, low Gleason, and low stage diagnoses have a longer disease-free time after any therapy than those with aggressive or advanced disease.
There is no cure for prostate cancer. However, the options for treatment are improving as time moves on. Most men will die with prostate cancer and not because of prostate cancer. Where are the sources for additional information?
There are many books available at libraries and book stores. Many scientific articles are published in medical journals; some of them will be available at your local hospital. The internet is a vast resource. Book lists, internet addresses, telephone help line numbers, video tapes, and mentor/buddy lists are available from PCSANM. Call, fax, write, or visit the PCSANM website or office.
What should I do if I get prostate cancer?
Learn as much as possible: ask questions, listen to others, read, use the internet, and join a support group. Decide what to do after you and your doctor are sure that you understand all the ramifications of your choice. A person needs to weigh the possible good and bad effects of each treatment considering his age, lifestyle, and personal outlook. Most men live many productive years after being diagnosed with PCa. Again, most will die with PCa and not because of it.
The following is additional information on new genetic diagnostic tests, scans and emerging systemic treatments for prostate cancer. A lot of research into prostate cancer location techniques and development for new treatments for advanced PCa have been made in the past ten years (as of May 2018). It is expected that these techniques will be used earlier in the treatment process as more doctors embrace them. We are including added information about the newest scans and their application as well as the existing hormone therapy drugs in use and information on a number of the newest drugs being used to treat PCa. Different drugs may be needed for each individual being treated; each cancer is individual and unique.
Genetic and other tests to help in diagnosing aggressiveness of prostate cancer
This is a very new set of different tests to help the clinician to determine if proceeding with conducting biopsies and/ or aggressive therapies for the patient is warranted. If the tests show an indolent cancer, the clinician may recommend active surveillance, while if the test demonstrates that the patient is susceptible to an aggressive form of PCa the clinician might recommend aggressive combination treatments. Details of the different tests are beyond the scope of this document but names of several are 4K, Oncotype DX, Prolaris and Prostate Next. Discuss with your doctor.
Scans – New imaging techniques are allowing more precise location of prostate cancer for both organ confined disease and metastasized cancers. Being able to identify where the cancer is located allows more effective treatment choices and treatment delivery.
MRI Scans – Various MRI (Magnetic Resonance Imaging) scans have been developed for imaging the prostate and the surrounding tissue. The 1.5 Tesla MRI instrument, with and without the use of a rectal probe have become commonplace and is a useful technique for imaging the prostate. The 3 Tesla MRI instrument creates a stronger magnetic field. With the stronger field and computer enhancement programs the 3 Tesla units provide a greater precision for investigation of the prostate and surrounding tissue. At the present time 3 Tesla units are only available in select locations, one of which is at the University of New Mexico. The use of MRIs hold the promise of not only identifying advanced cancers and identifying the locations of recurrent cancers in and around the prostate, but they hold the possible future ability to eliminate random biopsies, the current practice.
CT Scans – These are imaging tests that develop three-dimensional images in the computer from x-ray data by a process called Computed Tomography. These scans are similar in many respects to MRI scans.
Bone Scan – The technetium-99m bone scan has been used for years to identify metastasized prostate cancer in bones. This technique shows the locations of larger bone metastases that have lodged in the bones but may miss smaller early metastases. It is readily available.
C-11 Choline and Acetate Scans – The newly developed C-11 Choline and Acetate scans show great promise to be able to precisely identify and locate both bone and soft tissue prostate cancers. The Mayo Clinic in Rochester, MN developed the C-11 Choline technique and has obtained FDA approval for its imaging in prostate cancer treatment. The C-11 Acetate technique is still considered under development and is available in Phoenix, AZ. Both techniques require an onsite Cyclotron to create the radioactive C-11 tracer that is injected into the patient immediately after production. The body quickly metabolizes the tracer which is then selectively absorbed by the prostate cancer cells. A PET/CT scan is performed over the entire patient’s body within minutes, imaging the cancer’s location. Because of the large investment in equipment, the PET/CT are relatively expensive tests, costing currently in the $3,000 to $7,000 range and may not be covered by insurance.
Hormone Therapy Drug Treatments – The drugs described here are commonly considered to be hormone therapy (HT). Insurance companies may consider some of these to be chemotherapy. Most of these drugs vary from expensive to very expensive, so close insurance company coordination is needed. Doctors disagree (and studies are continuing) on whether early or later use of these treatments, with or without local therapy, result in better outcomes, and on whether continuous or intermittent hormone therapy is preferable. Other drugs may be added to reduce the risks of bone calcium loss and osteoporosis.
Estrogen – Before other drugs were available, estrogen and estrogen derivatives (such as DES and PC SPES) were the primary drugs used to treat advanced prostate cancer. Today they are rarely used, generally when other drugs are no longer effective, because of the risk of side effects such as blood clots. When estrogens are used, they may be paired with Coumadin or other drugs to prevent blood clots.
Lupron, Eligard, Firmagon – These (and similar drugs) are the most commonly used hormone therapy drugs. They are normally given as injections, which may be given monthly or at longer intervals up to (rarely) a year, depending on the specific drug chosen. Their primary function is to reduce or eliminate the production of the androgens, including testosterone, that feed the cancer, though Firmagon does so in a different manner from the others. Some oncologists use these drugs as part of a Combined Androgen Blockade (CAB) or a Triple Androgen Blockade (TAB) treatment along with other drugs such as Proscar, Casodex, and Avodart.
Zytiga – This is a rather new drug, generically called abiraterone. It is taken as a daily pill and is often used when the drugs above are becoming less effective or ineffective. To help maintain some other hormones in the body, and because of some side effects, prednisone (another pill) is taken with Zytiga.
Xtandi – Also called enzalutamide, this is another new drug, taken as a daily pill. It works by blocking testosterone absorbed by prostate cancer cells.
Apalutamide – This new drug works similar to Xtandi – that is, it blocks the absorption of testosterone by the prostate cancer cells.
Xofigo – radium-223 dichloride, is radiopharmaceutical designed to kill prostate cancer cells in the bone metastases. The carrier drug gets the radium isotope to the bones, where it delivers a very short-range form of radiation directly to the cancer cells.
Immunotherapy – Only one treatment of this type has been approved by the FDA so far – Provenge. This is a complex treatment protocol requiring several cycles of collection and treatment of the patient’s own blood cells, followed by infusion back into the patient. Effectiveness verification is difficult, since Provenge does not affect PSA values, but clinical data show this treatment does extend patient survival. Several other immunotherapy approaches are currently in varying stages of development and may be available within the next few years.
Chemotherapy – Chemotherapy drugs are normally given via IV infusion, usually with other drugs given before beginning each infusion to ease the process for the patient. Daily prednisone pills are taken during this treatment to limit or prevent side effects. The two drugs below are those most commonly used; others may be used in patients for whom these drugs cannot be used or have become ineffective.
Docetaxel – This is the most commonly used chemotherapy drug, which is also known as taxotere. Infusions are given every one to three weeks.
Jevtana – This new drug (generically called Cabazitaxel) is usually given to patients previously treated using Docetaxel. Infusions are given every three weeks.
Prostate Cancer Support Association of New Mexico
2533 Virginia St. NE, Suite C Albuquerque, NM 87110
(505) 254-7784 (800) 278-7678
Fax (505) 254-7786
(Guide revised November 2018, L. Reimer & S. Denning)
DISCLAIMER: The information and opinions ex- pressed in this publication are not an endorsement or recommendation for any medical treatment, product, service or course of action. For medical, legal or other advice, please consult appropriate professionals of your choice.