My name is Raymond C. Posh and I now live in Cedar Park, Texas. I am
seventy six (76) years old, 5 feet 8 inches tall and weigh 173 pounds.
Before this experience I weighed 160 pounds, which I felt was just right
for a youth deprived person.
I am recording my experience with prostate cancer because I have been told by every Doctor, that I've had for treatment of my cancer, that my situation is very unusual. In fact most of the Doctors had never run across a similar situation.
I've had a complete physical every year for the past twelve (12) years and passed all of the tests with flying colors. My PSA was checked each year and was comfortably in the range of 1.3 to 2.8 throughout those years. All of the Lab results were also within range and a digital check of my Prostate indicated that it was of normal size.
This situation started out about Six (6) years ago as a need to relieve the strain and frequency of nightly urination due to a restriction in the urethra at the prostate. An attempt to dilate the passage through the prostate was a complete disaster because my Primary Physician didn't have the proper dilating tools. I was referred to a Urologist who did have the proper equipment and a dilation was accomplished. I was informed at that time that it would be a good idea to either start medication for relaxing the Prostate muscle or have a Trans-Urethral Radical Prostectomy (TURP) to surgically open the passage. I decided to play it safe and go the medication route. I started taking PROSCAR in May of 1994 and after a couple of years it seems that the medication wasn't doing what was expected of it. The situation started getting worse, until I couldn't stand it any longer and in August 1996, I called the Urologist to set up an appointment at the hospital to perform the TURP. The TURP was performed the following week and the clippings were sent to a Lab for analysis. A PSA test before the operation was 2.3.
When the Lab results came back, I was told that I had Prostate Cancer with a Gleason Score of 8. The range is 0 to 10 and 8 denotes a very active Cancer. The Urologist said that it would not be possible to operate to remove the Prostate by Radical Prostectomy after the TURP, and recommended that I opt for the Radiation Treatment. Arrangements were made at the Radiation Oncology facility for the treatment, but the Oncologist wanted me to have a MRI to check that the Cancer hadn't escaped from the capsule. The MRI confirmed that there were no Cancer cells in any of my lymph nodes and the radiation treatment process began on October 17, 1996 . It lasted for 38 treatments until December 13, 1996 for a total of 6980 Rads. A check of my PSA six (6) weeks after the last treatment showed that it was a comfortable 0.002. This meant that the Cancer in the Prostate Capsule was suppressed and no longer had Testosterone to feed on.
Seven months later, during a routine examination, the PSA test showed that it had risen to 8.4. What happened?? No one knew. Finally my Primary Physician arranged for a Bone Scan and it revealed that the Cancer had Metastasized into my bones and therefore accounted for the increase in my PSA.
This is a copy of my first bone scan showing the different areas that the Radiation Technician indicated the cancer Metastasized to. It was at various locations in my rib bones and hip joints, and the worst ones were in my spine and brain stem. Luckily, there were no lesions in my long bones or main joints.
My Urologist put me on a regime of Hormones (Estrogen) to eliminate any Testosterone, that feeds the Cancer, from being produced. These treatments consisted of injections in the abdominal area every two (2) months and soon my PSA dropped to 0.000. This treatment was continued for the next couple of years and to my horror I gained 26 pounds (all in the waist) because of the Hormones. I had a consultation with my Primary Physician and the Urologist about what my options were. By now I could hardly bend over to put my socks on or tie my shoes. I was told that there were only two means of eliminating the Testosterone, (1) was a chemical castration, (the Hormone Treatment that I was on) and, (2) surgical castration, (Orchiectomy) an operation that removes the Testes. This eliminates all of the Testosterone that was being produced by them. I opted for the surgical castration and had that done on 04-14-99.
There are other glands that produce minuscule amounts of Testosterone
and a medication (Bicalutamide) to control this will have to be taken for
the rest of my life, since removal of the glands is not feasible. During
all of this time my PSA remained at an undetectable level.
This is a CT Scan of my neck and Spinal area.
Now started a series of tests to locate and define each Cancer lesion. MRI, CT SCAN, BONE SCAN, X-RAYS were performed at various times and the results confirmed that the lesions at and below my brain stem was probably the worst. This meant that if the cancer spread into the spinal cord, I would become increasingly unable to control various functions of my body. It is now three and a half (3 1/2) years since I found out that I have Prostate Cancer, although there is no way to know how long the cancer has been in my body. I must have had it for some time, for it to have Metastasized into my bones without PSA tests showing any warning signs.
The most recent CT SCAN has revealed that there are two more lesions at the sixth lumbar area of my lower spine. Were these there before, but just didn't show up on the BONE SCAN? Or are they some new ones that started to grow using a different food source than Testosterone? In searching the Web, I ran across a large number of incidences where the Prostate Cancer re-emerged after about five (5) years of being suppressed (controlled). The cancer cell seems to learn to survive by adapting itself to the new situation.
Lately, I've been having continuous aggravating pains in the left side of my lumbar region. I am able to suppress the pain by using Codeine pain pills and being very careful not to stress the area by lifting anything over about 5 lbs. or forcefully straining or twisting with other activities.
I have an appointment with my latest Oncologist at the Texas Oncology Cancer Center on Mon. April 3, 00 to see if he can decipher what the problem is, or what can be done to relieve the pain.
The Oncologist manually examined my lumbar region and decided that a BONE SCAN was in order to determine the possible activity and extent of the Cancer cells. Blood was drawn for a PSA test. An appointment was made for a BONE SCAN at the Round Rock Clinic on April 7, 00.
We went to an appointment with a new Primary Physician on Tues. April 4. 00. Her name is Veena Surapaneni and is located in the Seton Cedar Park Health Clinic. After recording all of our medical history, The Doctor performed a general examination on us. The Doctor decided that I had a strained muscle in my back and wrote a prescription for a relaxing medication. I also have a Bronchial infection and a prescription was written for an anti-bacterial. Both prescriptions were FAXed to the V.A. and will be ready for pick-up tomorrow April 5, 00. I have an appointment with the Primary Doctor on Thurs. April 20, 00 for a follow up.
Had an appointment with my Oncologist on April 13, 00. The bone scan confirms that there is some up-take of the cancer lesions on my spine at the lumbar area and an appointment was arranged for radiation treatments starting on Monday April 17, 00 at the Round Rock branch of the Texas Oncology Cancer Center. They have the latest radiation machine and will start radiating me after they do a 3-D CT scan to pinpoint the exact cancer location. My PSA is now 0.1, which looks good for most men but it is about 100 times greater than 0.000 (undetectable) and confirms my fears that the Cancer cells have more than one glandular source to feed on.
Sections 19c, 49c, and 60c are shown.
Lateral View of Lumbar Area Showing 132 sections. ........ ..................Section 19c depicts normal spine
Section 49c shows primary cancer growth . ........................Section 60c shows secondary cancer growth.
These pictures are from a CT scan performed on April 17, 2000 at the Texas Cancer Clinic. The first radiation treatment was started on April 18, 2000 and will last for ten (10) treatments. It is hoped that the radiation will be enough to destroy the cancer and eliminate the pain. Each treatment consists of 300 rads.
(5-22-00) Just got back from an appointment with my Oncologist with some good news (at least for the time being). My pains are not as severe as they were before the Radiation (only one or two pain pills are needed each day) so the Oncologist feels that the radiation had the required results. If the pain increases, I am to let my Oncologist know immediately. Otherwise, I have an appointment for a review in eight (8) weeks.
I questioned my Oncologist about the lesions in my neck and brain stem that were of the greatest concern while viewing the first Bone Scan (30 Sept. 1997). I was informed (This is the good news) that the latest Bone Scan (7 April 00) did not show any cancer lesions in those areas,( the hormone therapy (Lupron) must have eradicated them). But that Bone Scan did reveal the two in my lumbar area that are now being treated.
Once the pain in my spine began to subside, I started to notice some pain in my right hip joint, and another Bone Scan was performed on July 10, 2000 which did show some heat uptake in the hip area. A CT scan was performed on July 31, 2000 and the analysis was that there was a lesion on the tip of my right femur along with a few minor lesions in the immediate area. Another set of ten (10) radiation treatments was started on August 2, 2000 consisting of 180 Rads each. I am again in the process of waiting out the pain procedure. I have an appointment with my Radiation Oncologist on September 14, 2000 and the hope is that this pain will be gone by then.
Here is a summation of my PSA from 11/04/1998 until my latest test on 11/13/2000. As you can see, the value is still very low, but it is rising at a constant percentage over the last year. .
I discussed this phenomenon with the head Medical Oncologist at the Clinic and he was not worried at all. His view is that, if I feel well and don't have any severe constant pain, I shouldn't worry about the Cancer. He tells me NOW that my Cancer IS NOT CURABLE and that I will always have it somewhere or other in my bones (contained, we hope). The best that can be done is that when pain in an area gets too bothersome or harsh, radiation or medication hopefully can be used to give me some relief. And here I was under the impression that, with the proper amount of treatment, Prostate Cancer was curable. I am changing my philosophy to an understanding that I will not be Cancer free, and I will be happy for the time that I have, feeling as good as I do.
By the way, I now weigh 185 pounds and don't seem to be able to shed any weight. I probably don't exercise enough, but if I do, I get tired very fast and have a hard time breathing. I seem to feel the best when I can go about the every day tasks without too much strain or exertion.
Now, here we are less than one year later (about 8 months). As can be seen on the Bone Scan of 03/26/2001 the cancer has spread to a great number of skeletal areas. I have had 13 external radiation treatments on the lesion in my right femur and the pain seems to have subsided. It doesn't seem possible to externally treat the rest of the lesions and Chemo unfortunately is not an option. Fortunately, my Radiation Oncologist referred me to another Radiation Oncologist that can treat me with an injection of Samarium 153. This is the latest metastatic cancer treatment and has only been performed for the last year or so. It requires a special license and training and is only done by this one Radiation Oncologist in the Central Texas area. Samarium 153 is a parenteral radioisotope emitting a beta particle and a gamma photon and targets actively forming bone and concentrates in areas where cancer has spread.
As can be seen from a comparison of the Bone Scan of 03/26/01 and the Bone Scan of 07/10/00 it is obvious that the cancer has spread significantly throughout the skeletal areas. All of the literature that I have read, and all of the discussions that I have had with Doctors inferred that Prostate Cancer is a very slow growing (or spreading) cancer. It appears that My Cancer didn't read the articles or pay attention to the seminars.
I had mentioned the fact to my former Oncologist that I was concerned about the increase in my PSA from 0.01 in 1999 to 0.1 on 08/08/2000 and again to 0.2 on 11/13/2000, and he told me that the PSA wasn't a significant factor. And, in fact, he told me that I shouldn't have the PSA testing done anymore, since it makes me worry too much. I am switching to another Oncologist as soon as the results of the Samarium 153 are obvious.
I will now have to wait for about 4 months before another Bone Scan can be taken to see if the Samarium 153 had any effect on the lesions. By that time my blood should recovered enough to take another injection if needed.
Had a CBC at the V. A. Clinic on 06/15/01 and was surprised to see my PSA had jumped to 5.4 from 0.2 in just about 6 months. There must be a lot more that hasn't been found out about Prostate Cancer than the Testosterone bit, since I shouldn't be producing any Testosterone at all. And on top of all that, the spread of the Cancer seems to be accelerating.
I am apparently experiencing a side effect of the latest treatment whereas I have had a continually aggressive case of sleeplessness in the night since the infusion of the nuclear isotope. Even sleeping pills don't seem to have any desirable effect in making me sleepy. I just toss around and feel like I'm into an anxiety attack, nothing major, just fidgety and uncomfortable as I lay down. Getting about 3 to 4 hours of sleep each night now. Awake at about 7 AM, wide awake but feeling tired. Also tired during the day. Tried to get some cat naps during the day, no luck, same as at night.
Had a Doctors appointment this afternoon with my Radiation Oncologist (Samarium 153). He reviewed my CBC chart and my VA results and proclaimed me ahead of the game. The 5.4 PSA is a result of the dying cells sloughing off the PSA and should decrease as time goes by. My red blood cells are just slightly lower than before the injection and platelets are about the same. Most of my pain is gone, even though I've not taken any pain pills in over a week. In fact I'm not taking any of my pills except for the Casodex and Prozac. My sleeplessness has subsided so that I am now getting my regular 8 hours of sleep every night. Now, if the Samarium 153 does its work over the next 6 months, most of the lesions should be gone. I'm scheduled for another Bone Scan in 6 months. This is the best news that I've had in a long time and keeps me hoping for a pleasurable pain free future. ;-)
My Oncologist suggested that I be on a regime of Hydrocodone (5 mg) (Tylenol 3) 3 or 4 times a day to relieve any pain that I may encounter.
Follow-up Bone scan on Nov. 5 -01 shows an increase in activity through out the whole skeletal system although I do not seem to have any more pain than before.
Had another Samarium injection on Nov. 14-01. In anticipation of resulting increase of pain My Oncologist recommended me to get a stronger Hydrocodone(7.5) prescription. The VA does not carry that particular prescription and substituted a slow release Morphine (30mg SR) which I am on now until my next appointment with my Oncologist.
On Dec 13-01 met with my Oncologist after a 4 week wait period. The Doctor reviewed my chart and results of the CBC and said that he thought that I have the best skin coloration since I started the Samarium 153 injections. All of my blood results are below the range that is NORMAL but none of the results are too far off. It seems that all of the side affects that I am experiencing, (overabundant amount of sleep, lack of appetite, twitching in my sleep, hard breathing) are caused by the Morphine pain reducer.
I have decided to get off the Morphine for a couple of days to see if there is any excessive pain, and will go back on the Hydrocodone as needed. I feel that this is the only way we will be able to tell if the Samarium 153 is knocking out any of the cancer cells.
What a mistake! I didn't check with the doctor about my decision and went off of the Morphine cold turkey. I got the worst case of diarrhea I've ever had, and couldn't keep any food down for 3 whole days. Stopped the diarrhea using Imodium AD in the next 2 days, and was so dehydrated that I had to drink the Electrolyte drinks for a week. In the meantime, after the third day I went back on the Morphine at 1/4 of a pill 2 times a day for a week. Next. I substituted the Hydrocodone twice a day for a week and then nothing. Hadn't slept for 4 days or nights and am very weak.
The withdrawal almost did me in. It is now 3 weeks since I started the withdrawal. I am not taking any pain killers now and I don't seem to have enough pain to get me back on them. I am trying to get my strength back and some semblance of nerves.
Regardless of what the Bone Scan shows the Samarium 153 must be doing
some good. Pain seems under control without any help from the drugs.
This Document Last updated by Raymond C. Posh: 12-31-01
Continuation document (01-01-02 through