Updated 07-24-2010    

“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. I am now entering my fourth year with it and 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).

One of my biggest hurdles to get over was the lack of an erection on my own. Three + years and 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 medciations for six months. At this juncture, many decisions will have to be addressed dependant 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. Well 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 pathologic 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, is 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 results                   2nd set of results    

NEED I SAY MORE?

Gil's 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.

Gil's 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 lowereing his PSA. Gil certainly hopes this medication works since new side effects he is currently experiencing are "hell".

 

 

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.

 

 

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”

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”

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

 

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