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A Phoenix5 First-Person Story

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Prostate Cancer, Me & The Internet

by Alan A. Hawke

  photo of alan hawke Me = Alan A. Hawke
Pukekohe, New Zealand
Born 28-5-46

Occupation etc. Exploration Geologist and Project Manager, based in Indonesia (6 weeks on) and living in New Zealand (2 weeks at home) with Michele (my wife), Philip 16, Elana 12, three cats, and a few sheep, at Pukekohe (the Onion growing capital of the world), South Auckland, New Zealand.

February had ECG in Indonesia - not satisfactory therefore decided to have this redone in New Zealand when I was back home in April. Just before meeting with Family Doctor to arrange another ECG, I purchased the magazine Men's Health because of an article "Know Your Prostate." This was an information article about Prostate problems and details on PSA test. Because of this article, I asked my Family Doctor to check me out in that department - had small lump but the doctor was not concerned but I asked him for a PSA blood test anyway. His comments at that time are still etched in my memory: "You are too young to need these tests."

Back to Indonesia on 26-3-98. On the 2-4-98 I received a phone call from the family Doctor - PSA of 52 - what the hell does this mean!!! Told to come back to New Zealand ASAP. Arrived back Monday 6-4-98 at 11 am, then into Colin McRae, Urologist, at 1.30 for biopsy, and then Heart Specialist for ECG (passed OK!)

Had to wait for biopsy results = what does it all mean?

Where to get information, advice, help, support - why me!!!

INTERNET         THE WORLD-WIDE-WEB
NEWSGROUPS         EMAIL GROUPS

here I come!

I started into the Internet from when I arrived home on that Monday and am still going!

First went to the Search Engine - Alta Vista - too many sites at 34,000 plus. Refined the search and started visiting sites.

Also went into newsgroups and found alt.support.cancer.prostate where I posted "Help high PSA". This was the real starting place for obtaining web sites, information and support.

Probably the most important reply that I received was to get as much information as I could handle, read it and question it, to prepare myself for the biopsy results. I therefore worked the Internet about 8 hours a day! Just as well, as the biopsy results were not good, as 3 of the 6 contained cancer, which gave a Gleason of 3+4=7!

Colin McRae was straight up with me about what the high PSA and the biopsy results probably meant - a less that even chance that the cancer was still contained within the prostate. My reading and discussions using the Internet had prepared me for this result and indicated that optimism for successful surgery must still be considered. We therefore opted for surgery as soon as possible - lymph node dissection and if clear then to continue on to a radical!

The time between results and surgery was well used on the "Net" - discussions with other people who had been in the same situation, with urology surgeons who have specialist web sites, with information services specializing in prostate cancer and with "alternative" medical advice.

It was because of all the information available, the support from others who answered my call for help on the net and finally a telephone call to the indomitable Eon Scarrow (New Zealand famous Gardening Guru) just before going to the hospital, that I went into surgery with the positive attitude that I was going to beat the odds. Woke up without a prostate and with clear lymph dissections!!!

Back from hospital and then back onto the net to find information about what to do now. Biopsy of prostate shows capsular penetration! Now what to do? Back to the Net to question and find information that I consider beneficial for ME. So far have started watching my diet, exercising (joined a local Fitness Club) and enjoying life's little pleasures, such as family and friends.

The Internet is a great time waster as well as a great place to research information. If used properly and a sifter of extraneous information is used, then it can be a great help for people with medical problems such as prostate cancer.

The use of Email is also very useful and I use it to keep in touch with people in various email groups form around the world - that way things become a little more personal. I am also registered with a Urology Specialist group in the States and receive case studies by email, on a daily basis. A lot of these are not relevant to my situation, BUT there are a number that are and these provide good quality information about how others are coping with their situation and advice from the specialist group to their questions.

Prostate Cancer - my experiences with the disease.

Facts:

The Prostate is a walnut sized gland, which produces semen, which washes the sperm from the testes out of the urethra during ejaculation.

There are three main problems that are commonly associated with this little walnut sized gland, which can cause you to focus attention upon your water-works:

Prostatitis - an infection of the prostate - usually treated with the use of antibiotics - not life threatening.

Benign Prostate Hypertrophy (Hyperplasia) - an inflammation of the prostate - not life threatening but can be very uncomfortable.

Prostate Cancer - can be life threatening.

Prostate cancer is the most common cancer in men, and the second leading cause of death from cancer in men.

Early detection can save your life.

Both BPH and prostate cancer can have the following similar symptoms:

1. Weak or interrupted urine flow
2. Inability to urinate
3. Difficulty in starting and stopping the flow
4. Need to urinate frequently, especially at night
5. Blood in the urine
6. Pain or burning on urination
7. Continued pain in the lower back, pelvic or upper thighs - this may be a sign of advanced disease.

Men over the age of 65 have an 85% chance of PCa, however, there are recorded cases of men as young as 19 who have developed PCa. I was 52 when I was diagnosed with PCa.

PCa is hereditary as well as being a high-risk cancer for those who have family members with other forms of cancer, especially breast cancer.

1 out of 10 men will develop PCa in his lifetime. About half all cancers are discovered while still localized. At this stage, PCa has a 92% survival rate.

(Note: I did not say cure!!!! My understanding of this disease is that there is no cure, only control!!!)

There are often no symptoms for early stage PCa.

Early PCa tips:

1. Every man 40 and over should have a digital rectal examination combined with a PSA blood test, as part of his annual check up.

PSA - what does this mean and how does it relate to reality?

2. If either result is abnormal or suspicious, further evaluation in the form of an ultrasound biopsy may be recommended.

3. Even if a man has no symptoms he should be routinely examined.

If you are diagnosed with PCa - what should you do?

DON'T PANIC!!

You have time to research this disease and then you can make a decision based on what you feel is the best course of action for you and not for anyone else (including the medical profession!!!)

In New Zealand, there are only a limited number of options available, and these are:

1. Do nothing - Age, Quality of life requirements, and cancer aggressiveness will dictate weather this is an option.

2. Surgery - Radical Prostatectomy.

3. Radiation Therapy
a. External Beam Radiation - Usually 5 days a week for 6 to 7 weeks.
b. Internal Radiation - Radioactive seeds or pellets are inserted into the prostate.

4. Hormone Therapy. Combined Hormone Blockade. This includes hormone castration and anti-androgen blockade. This treatment can be intermittent, dependent upon results.

5. Orchiectomy - castration.

6. Chemotherapy.

7. Alternative Treatments.

a. Herbal remedies e.g. PC-Spes
b. Herbal, Mineral, and Vitamin Supplements.
c. CAP Cure - Miliken = dietary
d. Others

8. New Treatments. There are a number of trials currently underway around the world, with the majority being conducted in the USA. Several of these are showing good positive results. I am kept up to date with these via my email correspondent groups.

If you are diagnosed with PCa then the most important things to do are:
Start to educate yourself

Obtain copies of all medical records and compile them into a systematic digest of your medical history.

Undertake baseline studies to include complete blood work, bone scan, CT scan or CAT scan and an MRI. These will become extremely important to use to follow your progress with treatment.

Come out of the closet and talk to others in the same predicament as well as passing on the message about PCa.

EDUCATION

This, I feel is the most important area - you must learn about this beast to be able to understand and therefore control what happens to you.

YOUR LIFE IS IN YOUR HANDS!!!

One of the greatest advances in personal medical education is the ease of access to information via the Internet - Therefore you must make the effort to become computer and Internet literate!!! It will help in your education, that will in turn allow you to better understand your particular problem/s and to be able to control your future well being.

That is why you need to educate yourself and know more than your doctor. The medical people that I have dealt with, here, are not up to speed with prostate cancer and the treatment protocols that are currently being successfully used elsewhere.

MY EXPERIENCES WITH PCa.

Date of Birth: 28th May 1946

25th March 1998 - PSA blood test = 52 - normal is around 2!!!

8th April 1998 - Needle Biopsy = Adenocarcinoma and Prostate Hyperplasia. Gleason's score of 3+4=7

21st April 1998 - Radical Prostatectomy.

Pathology report on the state of my prostate - This did not then make any sense to me and I thought that all was well and that I was "CURED"!!! Silly me!!!

28th October 1998 - PSA blood test = <0.1

15th April 1999 - PSA blood test = 0.7

28th June 1999 - PSA blood test = 1.3

13th July 1999 - PSA blood test = 1.8

REALIZATION THAT I NOW HAVE SECONDARY PROSTATE CANCER AND THAT THERE IS NO CURE FOR THIS, ONLY CONTROL.

My education, using the Internet, had been accelerating after the positive PSA blood test results. I joined a number of email groups based in the USA including one that consists of PCa specialists in LA.

All of the information lead me to the next phase of treatment that will now hopefully control the proliferation of PCa.

21st July 1999 - I opted for Combined Hormone Blockade - this is fairly severe but has been peer reviewed in the USA and has shown good longer-term prognosis for someone such as me.

This protocol involves chemical castration and anti-androgen blockade, using hormones. I am also taking a variety of herbal, mineral and vitamin supplements as recommended by the medical specialists that I correspond with from LA.

I will stay on the Combined Hormone Blockade treatment protocol for 13 months of non-detectable PSA blood test results, and then go off the castration and androgen hormones until my PSA starts to become positive again. My basic medication regime is: Zoladex (implant every three months); Flutimide (250mg tablet every 8 hours); Proscar (5mg tablet daily); Tamoxifen (10mg tablet daily); and various supplements.

PSA test re now non-detectable and all blood tests are within the "normal" range.

I have learnt a tremendous amount from utilizing the information available via the Internet and would be pleased to able to share this with any of you who are interested in this. I am on email and therefore am able to send electronic information to those that are interested

SUPPORT FROM FAMILY AND FRIENDS IS CRITICAL TO YOUR WELL BEING.

The question often asked is:

HOW MUCH TIME DO I HAVE LEFT?

The answer is:

ENOUGH TO MAKE A DIFFERENCE.

My thanks go to all those caring people out there in the electronic world of the Internet.

Alan A. Hawke
Email: ahawke@attglobal.net
Telephone/fax 64-9-238 4647
Pukekohe, New Zealand

[Update October, 2000 from Alan: "I am doing well. I am still working and have taken on a project of a life time!!! I am trying to put together a project in East Kalimantan (island of Borneo) Indonesia, to build a railway system to transport coal from a number of deposits, to a large coal terminal/port. This project will be in the order of US$800,000,000 and I am the General Manager."

[Update August, 2000: Alan is still working happily in Indonesia!]

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This information is provided for educational purposes only and does not replace or amend professional medical advice. Unless otherwise stated and credited, the content of Phoenix5 (P5) is by and the opinion of and copyright © 2000 Robert Vaughn Young. All Rights Reserved. P5 is at <http://www.phoenix5.org>. P5's policy regarding privacy and right to reprint are at <www.phoenix5.org/infopolicy>.