“I Lived It”

Gil’s Story—General Prostatectomy:

This is my experience and not medical advice. This is my journey with Prostate Cancer. I wished I could come to terms with the statement” Prostate Cancer is a slow grower.” I can tell you the person that made that statement does not have CANCER.

Don’t run out to buy that paper with the headlines that reads, “PSA test used too often.” Here is a man that says “BS” to the above headline. I have been battling prostate cancer since November 18, 2005. It does not get any easier facing the fact that my prostate cancer has returned. I have enough blame (point the finger) to go around. If only the doubling PSA had been acted upon six months earlier? If only the surgeon had cut much wider? If only the Radiologist would of radiated a larger area? If only the Lupron had been stronger. Maybe my cure results would have been better.

At age 64 my PSA was 9.4 and my Gleason # was a 9. I had a good crop of Prostate Cancer. I had a radical prostatectomy on December 19, 2005, after which I had 40 treatments of external beam radiation. This was followed by 24 months of Lupron. After all of the above, I got six months of treatment-free life, but the cancer came back. I am now back on Lupron. How long it will work I don’t know. Now that I am looking back, the one thing I would change is that I would still have it removed but it would be by DaVinci (robotic procedure).

Dr. Brenner not only irradiates you but does a great job of uplifting  your spirits.

4-11-2006 end Radation 055 4-11-2006 end Radation 058  Dr. Brenner & Gil

From Left to right:

The External Beam machine which gave Gil 40 treatments;

Gil’s last radiation treatment;

The outcome of the radiation treatment.

 

 

 

 

One of my biggest hurdles to get over was the lack of an erection on my own. Six years and counting, it still is just as big of a roadblock. When you lose half of your nerves (40 % of my prostate was cancer) the blue pill and the others did not work. I have found something that works very well for me. It is the drug, EDEX. It is an injection that goes into the shaft of the penis 5 to 10 minutes before snuggle time. When you are on Lupron (my Lupron is a 16 week long shot) you have to take into account the number of weeks since taking the shot, and this determines the amount of liquid you inject. (This will prevent the 4 hour erection). Another big hurdle was after 42 years of having a bed partner, my wife moved out of the bedroom. With me tossing and turning, plus getting up 3 to 7 times (to Pee) a night did not leave much time for sleeping. The last emotional challenge, but not the least, is the new experience with DEPRESSION. This is a state that comes over you without any warning. I will stop talking and hold everything inside, till I say things I should not have said. A little pill call LEXAPRO (my happy pill) has become the answer to this problem.

Outside of that, all is great. I go to several support meetings every other month. They have been a tremendous help getting over these hurdles. The support group I go to is MAN-to-MAN which is affiliated with the American Cancer Society. It is a two-hour meeting. The first hour is a Dr.’s presentation that ties in with Prostate Cancer. The second hour we separate from our wives’ and it becomes men only. During the second hour, we talk about our own experiences. You will find out no matter what stage of bitching you are at, there is someone that is also going through it or has experienced what you are now going through. I will have a new update after my June 24, 2009 appointment at Johns Hopkins Hospital.

07-01-09 update:

Just returned from Johns Hopkins with my results. My PSA is now 1.13. My physician will be taking me off of all medications for six months. At this juncture, many decisions will have to be addressed dependent on my following PSA testing.

Gil’s update 01-29-10: There has been a lot of excitement at the Seibel house in the last two weeks. At that time my PSA was 11.8. Dr. Eisenberger, from Johns Hopkins, ordered a bone scan and CT scan. On January 11 2010 I went for a bone scan and on January 13, I had a CT scan. My last bone scan was 06/20/2008. The results of the scans were not the best of news. You talk about depression, I really had it. The report said I had a foci uptake in the right lower leg bone and at T12 (last vertebra with a rib). Both of these locations were suspicious for bone metastases (bone cancer). I guess the only good thing going for me was I had an appointment at Johns Hopkins on Jan. 20, 2010. At that appointment, Dr. Eisenberger requested follow-up MRI’s. The leg, chest and abdomen MRI’s were performed on Jan 25 2010.
The results for my chest cavity MRI T-12 showed that “No pathological marrow signal intensity changes are seen to suggest bony metastatic (CANCER) disease at any level”. This is an 180 degree turnaround form the previous bone scan. The MRI on my Thoracic Spine showed the same conclusion. The MRI on my Right Lower Leg showed mild bone edema (swelling) which was considered non-specific and was concluded to be a non-typical presentation for prostate metastatic (CANCER) disease.
The most frustrating, agonizing aspect of treating my prostate cancer is the fact that, when it had advanced past the prostate, it can no longer be cured; it can only be controlled.
Gil’s feelings can be summed up by the following two captions:

1st set of resultsSad Face 2nd set of results Happy Face

NEED I SAY MORE?

Update 06-21-10:

Gil’s visit to Johns Hopkins was outstanding. Gil’s PSA droped from 22.6 to 6.4 from a twelve week Lupron and Casadex regiment. Another twelve week program of Lupron and Casadex will began as of 04-21-10. Gil is anticipating his PSA continuing to drop to lower levels.

Happy Face

Update 07-13-10:

Gil’s last visit to Johns Hopkins, 07-13-2010, showed a rise of about two (2) points in his PSA test. This means that his previous treatments of Lupron and Casodex are not working and another medication has been prescribed. Gil has now been put on Nilandron Oral plus Lupron trying to get back to a trend of lowering his PSA. Gil certainly hopes this medication works since new side effects he is currently experiencing are “hell”.

Happy Face

Update 09-21-10:

Bad news continues: Results of my 08-23-2010 PSA was 8.59, showing a upward trend indicating that my treatment plan of the last six months is no longer keeping my PSA under control (cancer growing). Dr. Eisenberg has taken me off of Casodex and Nilandron, minimum of four to six weeks, to be eligible for a recommended test trial called TAK-700, which would be administered by Johns Hopkins. The two open test trials, as of this writing, are 10-5-2010 and 10-12-2010. I hope I will be able to be a part of one of these trials.

Sad Face

Update 10-12-10:

Today is a down day. My PSA has continued rising for the past three cycles (12 weeks/cycle). I had been scheduled to go on a test trial (TAK-700) at Johns Hopkins today, but due to a elevated liver enzyme, I had to have blood drawn for a retest. I hope to have favorable results by Thursday 10-14-2010.

Update 10-19-10:

Today at 10:12a.m I received my first dose of (300mg) of TAK-700. I am currently the only individual, at Johns Hopkins, to qualify for this test trial.

Happy Face

Update 12-09-10:

This TAK-700 test trial has had its share of ups and downs. This first cycle caused an increase in my liver enzymes and a decrease in my white blood cell count. The two negative aforementioned problems forced me to be taken off of the drug, for five days, until my blood results returned to normal. Currently, my PSA levels have gone down one (1) point a week to my present level of 13.10. I am scheduled for blood tests and updates for TAK-700 on 12-14-2010.

Update 12-14-10:

Christmas came early this year in the way of great news on my test trial results. My PSA has dropped to 7.8 from a beginning reading of 17.0. Both my liver function levels and white count results were good. I am beginner a new 4 week cycle and I hope my birthday present (April of 2011) will be a 0.0 PSA.

Happy Face

Update 01-11-2011:

After two consecutive 28 day cycles of decreasing PSA results, my third PSA test showed an increase of 1.52 points to 8.61. I had hoped that my PSA would continue to decrease eventually becoming zero.

The doctors at Johns Hopkins have now combined my Lupron shot along with my TAK 700 medication so that both are in sync.

Sad Face With Tear

Update 02-08-2011:

This cycle’s (5) results:

PSA = 7.25 down 1.42

Happy Face

Update 03-08-2011:

This cycle’s (6) results:

PSA = 4.45 down 2.8

Happy Face

Gil’s update 04-05-2011:

This cycle’s (7) results:

PSA = 3.71 down .74

NOTE: I am now leaving the twenty-eight (28) day cycle and will be evaluated quarterly (every three months).

Happy Face

Update 05-24-2011:

Traveled to Johns Hopkins today for my monthly TAK- 700 follow-up. As a religious man, the pictures show

What my eyes behold in the lobby. This sculpture continues to provide me hope and comfort;

Statue at entrance of Johns Hopkins

This is me undergoing my bone scan;

Gil getting MRI for TAK-700

Getting my blood drawn;

Gil getting blood drawn

Now comes anxious moments waiting for my results, which I will post when received.

Update 06-28-2011:

My prayers have been heard. My PSA is now 1.53 down from 3.71. The drug company monitoring my TAK 700 progress feels that a 0.00 PSA would not be possible. I plan on being the 1st to get to 0.00.

Happy Face

Update 09-20-2011:

The good Lord was looking out for Gil on this cycle.

A. The results of my CAT scan shows that my previously enlarged lymph node (above the prostate bed) has returned to normal size;

B. My bone scan for this cycle showed a greater bone density than was expected;

C. My PSA dropped to 1.04 which was a decrease of .49. The doctor informed me that, at this point in my TAK-700 therapy, any further decreases in my PSA will be in smaller increments. As long as my PSA continues down towards “my goal” of 0.00, I will be happy.

Happy Face

Update 12-13-2011:

I had my blood drawn at Hopkins for my continuing TAK-700 study. I had hoped that Santa would put good news in my stocking hung over the fireplace. Alas, instead of good news there was coal in my stocking. My PSA jumped 63% to a value of 1.65. Any jump of a PSA value over 25% results in a strike against the test trial. Three consecutive cycles of PSA results increasing over 25% each time will automatically remove me from the TAK-700 test trials. I hope that the the New Year (2012) will start with my PSA results going down (March 2012).

Sad Face With Tear

Update 03-06-2012:

The first order

Robert drawing my blood

Robert drawing blood

Gil getting Vascular EKG

Vascular EKG
On 03-09-2012 test results from my TAK-700 came back showing a PSA of 4.11.

Ms. Donnie (woman in picture below) sadly informed me that my PSA has exceeded the upper level for continuation of TAK-700. I am now officially off of this clinical trial. Being on TAK-700 for one and a half years was a rewarding experience. I began the clinical trial with a PSA of 17.6 and reached my lowest total of 1.04 in December of 2011. Since my PSA is on the rise, I am currently investigating new clinical trials that I hope to enter one that will work as well as TAK-700.

Ms Dommie

Update 04-22-2012:

Gil’s PSA is currently at 5.52 which is up from the previous result of 1.41. Gil has been recommended for the drug Provenge which will be administered at GBMC. Expected to begin the treatment around the first week in May.

Happy Face

Update 05-01-2012:

Gill was officially accepted into the Provenge treatment plan. Started my first of three treatments of a blood withdrawal

Gil's 1st Provenge extraction 05-01-212

1st Provenge extraction 05-01

First infusion

Dr. Tutrone at 1st infusion-GBMC-05-04-2012

(can anyone imagine me sitting still for three hours?) on a Tuesday and the infusion of my treated Provenge cells on a Friday.

The last of my three treatments ended on Friday 06-01-2012.

Update 07-02-2012:

My first PSA level after the Provenge regiment was 21.50. Even though the PSA number is high, the correlation shows that the Provenge has slowed my daily growth of prostate cancer. My fist bone and CT scan will be 12-15-2012. These scans will define if, in fact, the Provenge is working. The scans will look for any prostate cancer (tumors) that could be growing anywhere in my body. At present, I now feel better than I have in the previous seven (7) years.

Happy Face

Update 09-07-2012:

My PSA is currently 68.9  which is an increase of 37.4 points since my last infusion of Provenge on 06-02-2012. This rise was expected since it takes approximately six (6) months for PSA improvement to show. Almost no side effects and I feel GREAT.

Update 01-22-2013:

My PSA reading is is now at 132, a 73.1 point rise. Knowing that Provenge takes approximately six months to show improvement, I along with my Urologist, were not worried. Still feel great and no real side effects.

Update 03-19-2013:

My PSA is currently 141 which is only a nine (9) point rise in approximately two months. My PSA doubling time has taken a dramatic drop. I am excited about these results.

Happy Face

Update 05-20-2013:

Current PSA is 81.8 which is a drop of 59.2 points. I am more than excited in the decrease and my ultimate goal is to see a PSA of 0.0 (of course this is just my dream).

Happy Face

Update 06-14-2013:

My 79.5 PSA level show only a 2.3 point drop. Though I was hoping for a larger decrease, I had to remind myself that my blood draw was  a little less than one month from my last set of labs. However, a continued decrease is all you can hope for.

Happy Face

Update 09-24-2013:

Three months from my last labs and my PSA is now 94.8. A rise of 15.3 points.  I am not a very happy camper at this moment in time. I am besides myself with negative thoughts that are not only impacting me but my family, friends and my Urologist, Dr. Tutrone. Has provenge stopped working? Iss my prostate cancer coming back. I have begun searching the Internet, contacting all my current and past physicians, researching multiple hospitals with proven prostate clinics and ongoing test trials that could benefit me. Dr. Tutrone has reassured me that I may/will periodically face plateaus and possible spikes. This is easy for him to say but I am still not at peace.

can't live with myself face

 

 

Update 10-17-2013:

I could not have waited for two months to pass before another PSA test. This PSA result was 90.6. Although a drop of only 4.2 points from my September labs it is a decrease! Hallelujah. My family, friends and doctors can once again live with me as a person. I can now live with myself as a person. My days now seem much brighter. The funny thing about this Provenge “roller-coaster”, is that I have not felt this physically good in years.

Thumbs-up smiley face

Update November-2013:

I have done my homework. I’ve contacted four clinics and my current doctors about viable options if and when Provenge has run its course. One option that was suggested was a new drug called Zytiga at a measly cost of $5000.00/month. I have also contacted NIH (DC) and provided them with my charted history. NIH (DC) is currently looking into which test trials would be best for me. However, at this point I have made up my mind to stick with my Provenge regiment until my next testing in early March 2014.

Indifferent face

 

 

 

Update 01-13-2014:

Traveled to NIH to talk about a new test trial using the drug Xtandi. While at NIH I had my blood work and complete history taken care of.  That same night NIH e-mailed me my PSA results. My PSA was up to 143. It quite clear that the Provenge has now run its course.

crying sad face

                                                   

 

 

 

                                                              Why Hormone Therapy Isn’t Enough
In almost every man with advanced disease, hormone therapy prolongs life and eases many symptoms, often bringing a dramatic improvement to quality of life. Sometimes, the cancer can be kept at bay for many years.
    When a man starts hormone therapy, the early results are successful: The tumor shrinks, PSA levels drop, and — most importantly — the patient feels better. But then, slowly, inevitably, the cancer makes a comeback, and PSA levels, which had fallen so encouragingly before, begin to creep back up.
    Why doesn’t the effect of hormones last forever? The problem is that prostate cancer is “heterogenous” — it’s made up of many different kinds of cells. Some of them respond brilliantly to hormones; these cells aren’t the problem. It’s the other kind — the cells that are hormone-resistant, that continue unfazed despite this treatment — that ultimately cause hormone therapy to fail. And this is why chemotherapy is needed: To target and kill these ruthless cells.

 

“I Lived It”

Richard’s Story–Radical Prostatectomy:

I was 51 years old when I was diagnosed with prostate cancer in 2006. How did I find out and how did I cope with the news?

Over the years, I have had a physical every year, which established benchmarks for my PSA and other medical results. When my PSA climbed from 1.4 to 4.4 my family Doctor recommended I see a urologist. I did that and had a DRE, which showed nothing. It was recommended that I wait six weeks and see if the PSA level would drop down. Six weeks later, I went for another PSA test and my level had increased to 5.7. Based on this, a biopsy was scheduled.

The biopsy came back with a Gleason score of 7 (3+4). Of the 12 samples, 6 had cancer cells. After the shock wears off, and you wonder why me, it is time to do some research, talk to others, pray, and consider all options based on your individual circumstances.

Once it is determined that you do have cancer, you will need additional tests such as a CT scan and Bone Scan to figure out if the cancer has spread to other parts of your body. Those tests both came back negative.

Fortunately for me, I was able to identify a couple of people who had prostate cancer and called them to discuss their experiences. You will find most survivors to be very open to discuss their experiences. We are all different and there are many options for your treatment. After careful evaluation of the options, I elected to have a radical prostatectomy at Johns Hopkins and did in September 2006.

Two years later, things are fine. I get a PSA check now once per year and have had excellent results ever since I had the surgery.

I am here to chat about my experience and no question will go unanswered. I have talked to several people who have now gone through the ups and downs and they felt the chats were invaluable. I participate in the Man to Man in Carroll County and help with the American Cancer Society when asked. I am willing to talk to individuals or groups if that helps.

“I Lived It”

Phil’s Story–DaVinci

Coping with Incontinence

I was diagnosed with a Gleason 10 tumor 3 years ago. I have undergone Lupron injections, DaVinci surgery, and because not all cancer was removed, 39 sessions of radiation.

As a result I am both incontinent and impotent. I would like to discuss how the incontinence issue has affected me, how I coped with it. Hopefully, I can help anyone who might be faced with this for the first time.

I found that of the 2 conditions, the incontinence problem really affected my quality of life more than the impotence issue. After my radiation sessions were completed, I had to use pads and sometimes an adult diaper with a pad to keep dry. I was using as many as 8 pads a day. Basically, I had to be aware of where the nearest bathroom was and had to guard against getting my clothes or whatever I sat on, wet. Going to an event where there were limited restrooms, or going golfing was out of the question. Airplane travel was something to fear. I was considered to be a severe case.

The incontinence pads come in many shapes, sizes, and prices. As is the case with most things, you get what you pay for. I found that that the name brand pads (Depends, Tena) provided the best protection, CVS or Wal-Mart brands or other no-name brands were less expensive, but didn’t have the capacity or in some cases the comfort I needed.

I found that some brands were labeled for incontinence, but were meant for a woman. These pads were more narrow and longer than what I needed. Since a woman’s plumbing is stationary, she doesn’t need the pad width a man needs. Also, the one’s that are longer can become really uncomfortable. Pads labeled for men fit the bill.

I also found that wearing compression shorts, instead of briefs, really aided in comfort and confidence. When the pads become wet, they become heavy, and if you wear cotton briefs they can droop and not offer protection. Boxers are not suitable for pad wear.

A year after radiation I was still going through 6 to 8 pads a day and decided to look at some options. Basically, they can try 2 things surgically, a sling procedure, or an artificial sphincter. I had found that learning about my condition made me less fearful, so I went on-line and looked up both procedures and was even able to see them on the Internet. The sling procedure looked relatively simple (and has been used on women for quite some time) and I opted for this. I personally felt that the artificial sphincter added a lot of mechanisms inside that may interfere if I decided to get a penile implant at some point in time.

Basically, they take a piece of mesh, have it go across your urethra and anchor it to your pelvic bones with screws. This provides pressure that helps stem the flow of urine from your bladder. You don’t need to activate anything.

This was an outpatient procedure that was done under general anesthesia and took a little over an hour. The incision was made in the perineum (between the testes and rectum). It went well, there was discomfort were the incision was made that was relieved with ice and pain medicine. It wasn’t unbearable by any means and was fine in a few days but it remained tender for a while afterwards. I felt no pain or any other sensation internally afterwards.

Realistically, we weren’t expecting to see me become totally dry. I was looking to get my dignity back. A person who did not have the same degree of incontinence that I had would probably have much better results than I did.

It has been 14 months since this operation and I consider it a success (by my standards). I basically go through 3 pads a day, 1 at night and 2 during the day. Depending upon what I do, I can go 6 to 8 hours with one pad. I can golf; go to any events, exercise, travel by plane, all without fear. The off-brand pads now offer adequate protection. Coping with this is not an issue at all for me now, and it is getting better with time. It was one of the best decisions I made in this battle.

I did have to accept some life style changes to stay dry. No caffeine (I have come to like decaf coffee), watch out for spicy foods, limit alcohol. Small prices to pay for a much improved quality of life.

If you have any questions, please feel free to e-mail me: philshulka@hotmail.com

“I Lived It”

Cliff’s Story–DaVinci:

Three years ago, after my PSA had doubled in a year, my primary physician referred me to a urologist for further evaluation. It was decided that the best course for diagnosis would be biopsy. Twelve specimens were taken and were negative. Six months later,after another psa and rectal examination it was felt that another biopsy should be taken. One out of twelve specimens was positive. Initially, the Urologist thought we should go the “Watchful Waiting” route. After perusing my records he felt we should go after this aggressively. He then referred me to a surgeon and also a radiation oncologist for evaluation. After these interviews, I decided to go with radiation as the best course of treatment, This was especially true after the radiation oncologist felt that he could almost guarantee me 100% cure. Needless to say, it was very easy to make the decision. The procedure, Intensity-modulated radiation therapy was 38 sessions and was painless with very few side effects. Slight incontinence (dribbling) along with frequent urination. I feel very fortunate that I have made my health a big part of my every day concern. My diet has changed to almost a vegan style with the exception of including fish at least twice a week along with omega 3 supplements. If I’m going to eat red meat it will only be fillet min on and this will only be when I’m eating out . Some persons will reject this type of living, but it really isn’t hard if you want to extend your life. You can have quality of life as well as quantity.

“I Lived It”

Rick’s Story–External Beam:

This is my experience and not medical advice.
…from an epistle written 30 November, 2006

A number of you have asked me to share my prostate treatment experiences now that I am well on my way to becoming a “survivor.” Thanks be to God.

My cancer was discovered by my internist eleven months ago when I saw her about a painless kidney stone – well, I had pain, but only after dinner. She reminded me that since I was never in her office for even check-ups (typical para-medical behavior), that it was time, and to “drop ’em!” She felt that the prostate was getting hard, and my labs showed a PSA of 10.6. Since I had to see the urologist for the kidney stone anyway, he took a biopsy of both sides of the prostate, and told me that I had to have this treated as soon as the kidney stone episode (had to blast it) was over.

I originally thought that the DaVinci Procedure was the way to go – that’s where the prostate is sectioned and sucked out, but learned that I had a 38% chance of the cancer having gotten into the ample surrounding fatty tissues, and that the “triple” probably would be the best for me. The “triple” is:
a) Hormone therapy via Lupron Depot for 4 months
b) External beam radiation therapy for 25 sessions (along with another 4 month shot of Lupron)
c) Brachytherapy, which is Palladium seed implants

Lupron was given in April, with a second shot in August. Side effects have been perspiration “flashes” from my diaphragm to scalp, more grey hair (beard has gone completely white) loss of hair on my legs, and decreased libido (since the Lupron works on the pituitary gland). These side effects are rapidly going away, but I doubt that I will lose the grey!

External beam radiation began the day after Labor Day, and continued for a total of 25 working days. This required going to the radiological oncologist for a 5 minute “zap” – and side effects were an iffy stomach – got so that I couldn’t eat any red meat and wanted dishes with cream sauces – ate a lot of yogurt. But! I lost 18 pounds – hell of a diet, but I could certainly stand the loss! I developed a surface numbness on my left thigh, for which the oncologist takes NO credit, but you can’t tell me that some nerve wasn’t affected by the radiation. The area of numbness seems to be decreasing, and all other side effects disappeared after ten days. This radiation covers some of the surrounding tissues that could have been affected (my 38%).

Ten days ago the seeds were implanted, and I am now a card-carrying radioactive soul. Other than a few aches and pains from being dragged around the OR (stiff neck, bump on the head) – really – I have no side effects. I started Flomax prophylactically a week before the implant – should probably stay on it for another 4 or 5 months. It sure works. Had my first follow-up yesterday (urology) – Tim Schneidau at Kaiser West End (at GW) – “How do you feel?” “Great!” “Good – get out of here – see you in April.”

So that’s it – I have been attending a CA Prostate Support Group (with Bill White and Trueman Burn) for many months – have learned a lot, and have the advantage of “med-speak” so I know what is being talked about and what the equipment used in the OR is. I should – have bought enough of it.

Gotta go pee!

Rick

“I Lived IT”

Harry’s Story

Orchiectomy:

My first encounter with Prostate cancer came on Christmas Eve 2005. A routine exam showed some enlargement and a biopsy confirmed cancer was 100% in one lobe. Additional test revealed a spot had developed in my skull and was believed to be cancer. Dr Duncan sent me to the York cancer center as he was not qualified to treat cancer that had spread. Gleason scale was 8.
Test went on for weeks to determine what the spots were, it was never determined and the spots are still there.
External radiation lasting 37 treatments was done and my PSA went to zero. I had some difficulty with radiation, always tired, loss of appetite etc. nothing serious. Regular visits checked the PSA and in 2007 it began to rise, doubling each visit. Treatments were discussed and I chose surgery to remove my testicles, surgery was in January of 2007. I chose this instead of the hormone treatments,
I have experienced hot flashes, which has since been reduced by my use of Megestrol acetate and I take Casodex for long term treatment of testosterone produced in other parts of the body.
PSA has remained at near zero.

Harry

“I Lived It”

General Prostatectomy:

December 1999

“You Never Know”

In October of 1999 I discovered the Shared Experience web site while I was surfing the net. I read through a number of postings under the Prostate Cancer listings and I responded to a particular posting from an individual that grabbed me because of the way it was written and because the individual was, in essence, reaching out for someone to help him deal with what could possibly be Prostate Cancer.

I could remember how I felt in March of 1998, when my Urologist sat in front of me and said, “You Have Prostate Cancer.” Those words are like a kick in the gut. The posting said, “I am in a daze. My life has been turned upside down within a month. At this stage I do not the pain and complications of a biopsy, let alone radiation treatment or bone scans. I am going to put off things as long as I can until I can come to grips with the situation. Fortunately I have a wonderful understanding wife and two daughters. I am 54 years old.”

As a result of being hospitalized for acute urinary retention, some additional tests were run and the results were a PSA of 33.0 with nodes detected during a DRE. Initial prognosis determined possible advanced cancer and recommended beam radiation.

The posting went on to say, “I am in a sharp learning curve. But the more I learn, the less I like the options. My PSA is nothing like others…..did they make a mistake??!! I cannot see myself going along on the medical treadmill for much further….but then again I have always chosen a different path from most people.”

Based upon my own Prostate Cancer experience, I felt compelled to reach out and communicate with this gentleman and try to help him as best as I could. I encouraged him to proceed with obtaining the biopsy to determine if in fact there was cancer present.

Within a few days I received an email thanking me for taking the time to encourage him to proceed with tests and that he had scheduled the biopsy. Within a few weeks, I received another email with his test results and he and his doctors were utterly amazed that there was no cancer evident in the prostate, even though his PSA initially was 33.0. He advised that his doctors wanted to proceed with a TURP to determine if there was cancer elsewhere. The TURP biopsies came back negative with no signs of cancer. He has some damage to his bladder that will require some future attention.

Five days before Christmas, I received the best Christmas present that I had ever received. My newfound friend shared an experience that resulted from him reaching out to another who was in need of help. His email tells the rest of the story…………………”I was just wondering what to send you by way of electronic cheer, when a most peculiar event took place. A Hot-Rod auto with one of those extra-loud exhaust systems pulled into our driveway and two rough looking young men came to the door. They handed me a small package rather loosely wrapped in crinkled Christmas paper and said that it was from their Uncle Dave. Then they left. Now, despite it being a rather common name, I do not know many Dave’s’. It was all very mysterious……………Inside the package I found two things wrapped tightly in old newspaper. One was quickly identified as a small bottle of beer, but the other item felt very odd. It was wrapped in tighter layers of paper with lots of strong tape. It turned out to be a small pistol.”

“This really had me both puzzled and a little apprehensive. I am not a gun person and have very little knowledge of firearms, so I treated this nasty little object with great care. After just sitting and thinking for a little while, I began to examine the pistol very gingerly. I soon had some of it apart and established that there were no bullets inside. That done, I could now sit back and do some hard thinking.”

“I soon began to piece the story together (I think). This particular Dave was a casual acquaintance I had been talking with before I went for my first biopsy. I had been talking with him at a social function about health issues because I noticed that he had a neck brace.”

“Apparently, Dave lives on his own on a small farm and woke up one morning with a severe headache and disorientation. He managed to call a friend before collapsing. The doctors suspected that he had had a small stroke while asleep and possibly struck his neck on the headboard in the process. They kept him in a hospital for a few days under observation, then sent him home. But he could not sleep. He was fearful that he would have another stroke. The doctors could not say that he wouldn’t, but told him that it was unlikely. But the fear played on his mind. When I spoke to him, he was tired, anxious and desperate. He told me, quite openly, that he was contemplating suicide. I listened to him without being shocked or judgmental and told him that I had been in great despair when the doctors had diagnosed as certain advanced prostate cancer in my case. And I tried to give him hope and support in just the same way that you did for me Ray. I have a friend in the police force who took the pistol and disposed of it safely. I still have the bottle of beer in the fridge. I am going to have it on Christmas day and I am going to enjoy it thinking of you Ray as I blow the froth off the top.”

“It is obvious to me that it was your reaching out when I was in crises that motivated me and helped pick me up to such an extent that I was ready and able to give support to Dave on that day.”

I don’t believe the story will end here, for you see, Dave now has the flame that has been passed to him. You never know how things are going to turn out when you respond to someone and share your experience. I can assure you, that if you will make the effort and take the hand that is reaching out, you will receive a lot of satisfaction in knowing that you helped someone by sharing your own experience in similar circumstances. As a footnote, the writer of this article lives in Annapolis, MD and the other gentlemen live in Australia.

This article was submitted by Ray, age 64(a Gleason 7), RRP 6/98, who resides in Annapolis, MD. Ray has developed a talk promoting Prostate Cancer Awareness entitled “Been There – Done That.” Ray has a Web Page at the following address: http://www.fortunecity.com/meltingpot/regent/111.