My Journey by Robert Spencer

Please feel free to forward this to anyone you love or think can use this information.  I will be available to discuss with anyone that has concerns.  Bob Spencer flyfish@ctesc.net

My personal background relative to prostate cancer:

Every year  for the last 25 years I have had a physical exam always including a PSA(Prostate Specific Antigen) blood test. I thank the Lord that I have had virtually perfect health in all of these years.  I do not take any medications for any systemic problems.  I have been a runner, weight lifter and generally love exercise.  My diet has usually been healthy with lots of fruit, vegetables, and of late years very little red meat.  I have been taking high potency multivitamins, along with fish oil and supplemental vitamin D. (Ok,  I confess to an occasional Porky’s hamburger maybe twice a month.)  I drink very little alcohol and maybe a glass of wine twice monthly and even less beer, unless I am at a outdoor party. Now at 71, I still enjoy the blessing of excellent health except for one recent issue and that is prostate cancer.

I first saw the clue in the change of values in my annual PSA test.  For years I ran about 1.2 to 1.6 PSA.  Then in 2006 I noticed a change from the usual 1.8 to a rise  of 2.8, a  55 % change but still under the generally accepted 4.0 guide lines…the alert level where doctors usually become concerned and recommend additional testing, possibly a biopsy.  PSA is not the definitive test because any inflammation such as prostatitis or even riding a bicycle can raise ones PSA. So one can have elevated PSA and NOT have cancer.  Many have PSA levels above 10 and still do not have cancer but it is the best non invasive marker to date.  Medicine is developing DNA testing to determine if one has a propensity for cancer, but it is not being used as a diagnostic tool as yet. In early 2007 I had my usual physical exam and my PSA had dropped to 1.8 again.  In the fall of 2007 I had a colonoscopy at the recommendation of my doctor and that proved negative for any cancer activity and the surgeon removed two tiny polyps which were normal at my age.  I did not feel comfortable with the rate of change from my previous years PSA changes and so I asked my GP to recheck the PSA and  give me another DRE (digital rectum exam). He did and while doing the palpation of the prostate he commented, “dog gone”.  I asked if that is a medical term and he explained he felt a tiny hard spot in the prostate. At that point in November of 2007 he recommended that I see a urologist which I did within one week  and the urologist performed a biopsy of 12 needles drawing samples of prostate tissue.  One of the biopsy samples showed cancerous tissue with a Gleason score of 3+3=6.  The sample indicated the tumor was about 2 mm.  A CAT scan was also performed to determine possible involvement of cancer in the bones, results showed no involvement.  My local urologist/surgeon suggested conventional surgery which is invasive major surgery with blood loss and transfusions and a recovery time of about two months for a healthy person.  I heard from one of my golfing buddies  who was recovering from a prostatectomy that was performed using remote robotic surgery, a new surgical method being practiced in limited locations around the state in Austin, San Antonio, Dallas and at MD Anderson (MDA) Cancer Center in Houston.  My local urologist indicated that it was not urgent to have surgery, but he, being a surgeon,  would have it done as soon as feasible. We are fortunate to have great and skillful medical professionals in Fredericksburg, but the options are limited.

[Results from a biopsy are shown on a Gleason scale which measures the level of deviation between the cancer cells found and  normal healthy cells under microscopy. The scale spans from 1 to 10.  There are two components measured and indicated with the Gleason scale, "primary"  the cancer cell and "secondary" the surrounding tissue.  The laboratory report will show the number as a "total" it is important to know and understand the components of the "total" score.  Low levels of Gleason are better than high levels.  It is better to have a low primary and high secondary.  For example a Gleason total may show 2+3=5.  This indicates the primary cancer cell found in the biopsy is not very aggressive with a score of 2 with the bordering and surrounding tissue at 3 showing a less likeness to normal tissue than the primary cell. The higher the total Gleason, the more aggressive are the cells, and the sooner one should seek treatment as the cancer  with a higher Gleason has a  propensity to move outside the prostate capsule.]

I called the San Antonio clinic that owns a Da Vinci remote controlled robotic surgery system and set an appointment to consult with the surgeon who had published that he has accomplished 1500 surgeries using Da Vinci.  I decided that I would go for this method of cure.  But when I spoke to other friends that had had cancer in their families they suggested that I consult MD Anderson, in Houston, the world’s preeminent cancer center,  so I made an appointment with the head of robotic surgery in the GU (Genitourinary unit) in Houston.  I had appointments and consultations with MDA in February of 2008 and they conducted another biopsy which confirmed the one from Fredericksburg the previous December.

My choice, initially:

Dr Davis, Associate Professor and Da Vinci surgeon at MD Anderson GU  and his team suggested that I was a candidate for the Watchful Waiting Program (WWP).  He and several other doctors and surgeons felt that with my health, age and minimum detectable cancer that I should have a normal quality of life and that I could live with the cancer, because it is slow growing and I had a low PSA and minimum tumor growth.

I trusted their experience and elected to enroll in the WWP and study group of 700 men.  Dr Kim the Director of  oncology for prostate research is working on a vaccine to combat prostate cancer.  The (WWP) study is in support of Dr. Kim’s efforts.  The program involvement required a PSA blood test every six months and an annual biopsy.  My PSA in the first 6 months of the program remained at 1.8 and I felt that I had made a good decision.  At the end of the first year I had my second biopsy at MD Anderson.  I returned to Fredericksburg to await the biopsy report, the report revealed that the PSA had climbed to 3.6 and the biopsy showed two new tumors with Gleason of 3+4=7 which is more aggressive that my initial diagnosis.  Now I was disturbed, for in the past year, detectable cancer cells had increased and were larger and at a higher aggression level.  The doctors however recommended that I stay with the WWP.  I was surprised and informed them that in no way would I maintain a passive posture with this cancer.  I diligently explored all options of prostate cancer treatment at this point.  Radical surgery, robotic surgery, radiation, chemo etc.

Change of course:

At the same time I learned of the changes in my condition, a friend in Fredericksburg discovered his prostate cancer through the same diagnostics methods as I during an annual physical.  We compared notes and he told me he had read discussions on the internet about Proton Beam therapy and the positive results of this new type radiation.  The leading hospital and one of the very early adopters of Proton Beam therapy is Loma Linda Medical Center(LLMC)  in Loma Linda, CA.  My friend, contacted LLMC and they agreed to consult with him for acceptance into their program.  He also contacted MD Anderson and the University of  Florida  regarding  proton therapy.  MD Anderson, in 2006 opened their center with more advanced equipment but has treated fewer patients (700) and has less experience than  LLMC which has been operating since 1990 claiming over 16,000 patients.  I decided to contact LLMC and they required that I submit test results of PSA from last 5 years, current MRI, CAT, biopsies, and a recent colonoscopy test within the past year.  I sent all the information by FAX .  My first choice was LLMC as I definitely did not want to spend the summer in Houston.  However, LLMC could not schedule me until August while MDA scheduled me for June 8th, so I thought it better to give the cancer less time to grow and opted to go to MDA.  MD Andersons Proton Treatment Center (PTC) has 4 units, one fixed and three gantry systems that emit a “pencil beam” radiation that is very precise.  The course of treatment at MDA requires 38 sessions administered  5 days a week.  One is in the system for 2 months.  LLMC requires 44 session and I do not know why there is a difference. Another considerations for Houston, was that both Jo Anne and I have 95 year old fathers and we did not want to be as far as California in case of an emergency. Dr. Andrew Lee is the Director of the Proton Center at MD Anderson, very knowledgeable, serious, experienced and likable. Over $125 Million dollars has been invested into the Proton Treatment Center(PTC) at MD Anderson.

Treatment regimes:

There are a number of choices for prostate cancer treatment and it appears to be one of the most treatable cancers if it has not metastasized.  The prostate is a gland that is some what isolated and prostate cancer is typically slow growing.

Choices of treatment:   Listed in order of what I consider to be the LEAST desirable to best choice.

Do nothing

Watchful waiting

Brachytherapy (radioactive beads implanted into the prostate for several months of active radiation to kill cancer cells)

Cryogenic ablation

Ultrasonic ablation ( being done in Canada)

Prostatectomy invasive major surgery

Prostatectomy remote robot laparoscopy

IMRT (intensity modulated radiological therapy)

Proton Beam therapy

Future expectation vaccination being tested now

The net of all this is you must be responsible for your own health and ask, inquire, explore, read, go to the  best possible location and most skilled doctors for your treatment.  Do not be intimidated by your doctors and remember doctors are healers AND business men,  that must have income to survive.   Surgeons do surgery, radiologists do radiation, and there are cross connections of referrals that may not always be in your interest. Starting in your 40s but for sure after age 50 you need to be recording  blood test values PSA every year and watch for accelerated change which can yield a fairly low PSA number but may indicate cancer. You should be concerned about the after effects of any prostate treatment.  Most surgeons today claim to be “nerve sparing” but this is highly dependent upon the skill of the surgeon, your physiology and where the cancer resides in your prostate.   Cancer can be found in the seminal vessels, and on the nerves that control erection and continence.  Surgeons must remove the lower sphincter that offers more positive control and the bladder is pulled down to meet the urethra as it is severed within the prostate during removal, and  then reconnected to the bladder, a tedious procedure.

While discussing our varied cases with other patients from various parts of the country during waiting for our Proton Beam radiation treatment, a group of guys that varied daily from 4 to 10 guys, depending upon

their schedule of treatment, revealed a common complaint, that their doctors had not heard of Proton Beam therapy or else would not advise their patients of this unfamiliar option or choice.  It appears that if the main stream doctors do not have access to this type of treatment, they direct patients to their particular method of treatment.  In some cases doctors have been hostile to the men when the patients informed the doctors they have opted for Proton Treatment. I did not have a poor experience with my primary doctor.

With Staph infections and MSRA are on the rise in hospitals today, any treatment choice that is non invasive (cutting into the body cavity) is a better option in my opinion and in the opinion of many doctors.  Surgery has been the gold standard for curing prostate cancer over the years, but the side effects can be serious, greatly reducing quality of life.  Results from surgery are highly dependent upon the skill of the surgeon.  Blood loss, long term healing time, infection, incontinence, loss of normal sex life can all be complications of surgery, but surgery is better than dying a painful death over time.

Many have chosen to be treated with radiation which is based on photon emission (x-ray).  In the past without proper shielding photon treatment attacked and damaged much of the healthy tissue and organs surrounding the prostate  as it killed the weaker cancer cells.  Newer  photon technology called Intensity Modulated Radiological Therapy (IMRT) provides shielding to minimize the surrounding tissues and reduces complications from damage to good cells.  Latest technology is proton radiation therapy using a very precise focused beam.  If you remember your chemistry, protons are the particles of mass found in the nucleus of an atom.  The nucleus is composed of protons and neutrons, with an equal number of protons and electrons orbiting in a particular atom.  Proton beam therapy uses the hydrogen atom to split and provide proton particles.  Proton particles behave differently than photons or x-ray.  Proton therapy uses considerably lower energy to enter the body and is programmed to give up energy at the precise site of the tumor and destroy the DNA of the tumor.  At the same time there is minimal damage to healthy cells upon entry of the proton beam.  A phenomenon called the Bragg point is the calculated point where the proton releases its maximum energy into the tumor at the target site without passing through tissue beyond the target thus saving healthy tissue from damage.  This treatment is highly successful with young children and delicate brain tumors and tumors on the eye as well as prostate.

Several men at the PTC have had other treatments such as surgery and are now receiving proton radiation to combat resurgent cancer. However there is some controversy as to whether one can have surgery after proton radiation but Dr. Davis previously told me that he would do surgery if required.

What you need to know:

1.  The PSA (prostate specific antigen) level of 4 is NOT the beginning guide for concern as some GPs (family doctors) believe.

2.  Any change shown in PSA test is an indication of a problem, acceleration is a very concerning circumstance, no matter how low the level.

3.  For certain, have an annual physical with a full blood count including PSA and a DRE (digital rectal exam) beginning at age 50.

4.  Chart your blood test results yourself for each year and ask/demand for a copy of your blood test results.

5.  If your annual PSA changes by 20 % or more change the interval for  your PSA test to every six months.

6.  If a hard spot is located by DRE go for the biopsy.

7.  Consult with other doctors, surgeons, radiologists, and of course your GP.

8.  DO NOT ELECT WATCHFUL WAITING!  (my opinion and I am firm)

9.  Seek out the best medical facility you can find, preferably where a medical school is located with the latest knowledge of the disease.

10.  Take your health into your own hands. Consult with professionals with different treatment regimes.

11.  Talk to your friends and you will be surprised how many other men have experiences with prostate disease, cancer and other problems.

12.  If prostate cancer is suspected or confirmed have a colonoscopy before you treat the cancer.

13.  All treatment centers will want a five year history of your PSA, a recent CAT, MRI, and Colonoscopy before they will accept you for radiation.  KEEP RECORDS

14.  Reduce fat intake drastically, limit red meat and fried foods as doctors and researchers agree that over weight, obesity and fat contribute to prostate cancer!

15.  Know your family history of the males and prostate cancer.

16.  If you have prostate cancer prevail upon your sons to start early surveillance as the possibility for them to develop prostate cancer is twice that of the general male population.

If you are older and have prostate cancer it is urgent that you have treatment before the Obama medical plan is adopted as there are currently movements to  have Proton treatment not allowable for Medicare, and Blue Cross Blue Shield because of cost.  Also the current administration has indicated that older people will have less access to costly treatments.  No matter your politics, there is a reality coming that will limit all expensive medical procedures especially for the aging populations.

Terms:

MRI: Magnetic resonance Imaging, Take slices of images across the body and is useful to observe soft tissue involvement.  MRI is not radiology like x-ray and is used to see 3D images of problems.

CAT:  Computed Axial Tomography is used to show, for the purposes of prostate cancer, if there are cancer cells in the bones. This technology uses x-ray radiation.

PSA: Prostate Specific Antigens indicate infection, inflammation, cancer in the prostate.

Gleason: Gleason is a scale that indicates the abnormality of cells in the prostate and show tendencies of aggressive growth.

Information sites:

ProtonPals Web Site

ProtonBob’s –  Robert Marckini’s Site

Proton Therapy Treatment Study

M.D. Anderson Cancer Center Proton Therapy Center

Key Statistics for Prostate Cancer – ACS Site

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