I have never been to an AA meeting, but writing this, I feel almost like I am at one standing in the front of a crowd proclaiming "I have prostate cancer".
Ah, the telephone call that breaks my long held myth that I was immortal. "YOU HAVE PROSTATE CANCER". Those words totally shook me up. I am a 70 year old male in good health, and always thought I was till now. I have always been active, have been a avid backpacker and bump skier for most of my life. Skiing the DD bumps of prima/pronto/logchute at Vail damaged my back and shoulders. After a rotator cuff surgery and diagnosed with two bulging discs, I now ski DD, but only if I can find groomed ones.
My PSA was high lately, varying between 2.0 and 3.0. I have an enlarged prostate 4x in size. I hope that 4x is volume not diameter, as volume goes up as the cube of the diameter. I had a PSA test done in late January and it had jumped to 5.8, my urologist did a 16 needle biopsy on February 3, 2010. The results can back positive on 1 needle, mid lobe, with 10% cancer, Gleason Score 3+3.
What to do? Despite a comment by my urologist that I should be using the web for information, I started Googling and reading everything I could on this disease. I ended up being very confused. About a week after the biopsy, I came down with a prostate infection from the biopsy, and was given a shot and put on Avodart, Flomax, and 30 days of Cipro, which I am still taking. Two weeks after the biopsy, it was time for the scheduled consult with my urologist.
The urologist/surgeon told me I had a small amount of cancer. He said I was not eligible for seeds due to the size of my prostate, and that my choices were watchful waiting or surgery. He said men like me tolerate robotic surgery very well. He said the Avodart would shrink the prostate slowly, but if I choose surgery, I would need hormones to shrink the prostate quickly. If I did not call him, he would assume I choose watchful waiting and to come back in 12 to 18 months. Apparently, he knew what waiting means, but where is the watchful in the program. The info I read said 6 months PSA redo and 1 year biopsy redo. ???
This did not sit well with me. Also, if my prostate can be shrunk for surgery, why can't it be shrink for seeds?? I immediately suffered from a lack of confidence with this guy. Also how many surgeries had he done? Since he was a practicing urologist and did surgery only 1 or 2 days a week and robotic surgery was relatively new to Boulder, it could not be large volume. All the info I learned was the surgery side effects were directly dependent upon the skill/experience of the surgeon. I decided right away, if I choose surgery, It would be with a high volume surgeon who has done thousands of this operations. I did not want to be a practice dummy.
I investigated seeds with the operation in Atlanta. They did not indicate that an enlarged prostate was a problem, but the 6-7 weeks of follow-up radiation seems excessive and still did not guarantee that they got all the cancer. The operation seemed to be too Madison Avenue type of self preaching and advertising.
I investigated a top notch surgeon in Miami. He said I was a good candidate for surgery. He said medicine to shrink the prostate won't do much. and it would have little effect on surgery. But he opted out of Medicare. Opt out means Medicare will deny the claim. They also send a letter to the backup stating what they did, and the backup insurance then denies the claim. It is not a case of I file the claim and they reimburse me according to a schedule, they will pay nothing. My secondary will pay nothing. OUCH!!. An extra $18,000 out of pocket after all the years I have been paying and am still paying on Medicare and the secondary insurance.
Fortunately, by reading stories on this site, I found the name of a leading surgeon who has performed thousands of robotic surgery on the prostate and also takes Medicare. It just requires a trip to New Yok.
In the meantime, while trying to decide, I had a consult with a doctor in Boulder who performs CyberKnife®. The consult was excellent. At last someone who gave me the whole story on treatment options. He does seeds and CyberKnife® radiation treatment. He said seeds were a good treatment option, the prostate just needed to be shrunk Again a Medicare glitch. It turns out that if I lived in California or Florida or a number of other states, Medicare would cover CyberKnife®. In Colorado they do not cover it for the prostate. ??? How can a US government program have different rules for different states. It makes no sense.
I am a physicist/mathematician with a strong knowledge of statistics.
Let me sum up the situation.
1. Although one needle biopsy showed cancer, there is no reasonable (except maybe 3D mapping by UC) way to know the extent of the cancer. The one needle could have hit the edge of a large tumor or hit the only small amount of cancer there.
2. There is no way to know the prognosis for the cancer to spread. There is no definitive test to tell if the cancer will spread, is a kitten or a tiger. Gleason Score is an indicator now, but not next month or in 6 months while the cancer is there doing its thing.
3. Each doctor pushes the treatment option he knows and practices. They all feel theirs is the best approach.
4. There is no definitive path to treat this cancer, there are many paths, including not treating it.
5. If you have radiation, there is no way to know if all the cancer is destroyed. Analysis of the prostate after surgery can, with a high probability, determine if the cancer has spread beyond the prostate.
6. There are side effects/complications with all the approaches. There is no way to know which one you will suffer or if any. Even watchful waiting has a complication - death by cancer metastasis.
7. One can talk about estimated probability of survival or getting complications. But if it is 90% and you are in the 10%, numbers don't mean much. And they are all estimated numbers of dubious validity.
It is all a confused mess. I am used to making observations, developing a theory, modelling the behaviour, predicting future outcomes, and then comparing my predictions to future results. I guess it is gut check time. It is time to stop listening to others, time to absorb the information I have and then wing it. Go with what feels right to me.
Today I am leaning on going ahead with the surgery. Last night I was set to do watchful waiting. I hope I don't get on the operating table and at the last second yell STOP!!! I have changed my mind.
I had consultations with my original urologist, an oncologist who does seeds, two robotic surgeons, and another urologist. I also read everthing I could on the internet. I arrived at the following conclusions:
1. My prostate was probably too large to do seed implantation.
2. Surgery would allow me to know afterwards my chances with a reasonable assurance and give the best probability of a cure.
3. If I wanted to be assured of not dieing of prostate cancer in the next 10 years, watchful waiting was not an option. If I only cared about living 5-7 years, maybe watchful waiting was an acceptable risk. [The chances of ETK dieing within 10 years on an Active Surveillance program would be not be very high. His diagnosis would be considered 'very low risk' in the NCCN Guide available on the National Comprehensive Cancer Network® (NCCN) site indicating that anyone with a life expectancy of up to 20 years should consider Active Surveillance. A man of 70 - ETK's age - in the US is expected to have a life expectancy of between 7 and 20 years with a median of 13 years.]
4. If I did surgery, I wanted the very best surgeon I could find, one was has done many operations, and was way up the learning curve.
5. Studies indicated that the best results are achieved at teaching hospitals.
I selected to have surgery by Dr Tewari at the NY Weil prostate center in NY on April 14. Dr Tewari has done over 3,000 of these operations and does about 15 per week. I found him to to be an incredible surgeon and human being. His staff is top notch, and the facilities are excellant. Because of a previous abdominal operation and adhesions, Dr Tewari had a specialized surgeon begin the operation to remove the adhesions.
Unfortunately, my surgery and recovery proved difficult. I had extensive adhesions, my prostate was 105 gms vs a normal 20gms, [this large sized gland would have contributed signficantly to the elevated PSA noted - according to Dr Strum this might generate up to 7.0 ng/ml PSA] and the urether from the kidneys to the bladder were close to the reconnection, so I had to have stents inserted. The stents caused very painful bladder spasms. When I was due to leave the hospital after 2 days, I developed a scary heart situation with my pulse oscillating between 120 and 180. I spent the night in a heart monitering unit. My release was delayed another day. All was well handled by Tewari's staff and on-call doctors.
I spent the next five days next door to the hospital in the hotel in case of an emergency arising. Removal of the catheter one week after the surgery greatly improved my condition. Removal of the stents five weeks later eliminated any minor spasms I still had.
The post surgery results indicated that the cancer was organ contained but had started to invade the nerves within the prostate. My Gleason Score was 3+3 before and after surgery. My PSA before surgery was 5.8.
I had a PSA test after 2 months and it was < .01% which is the measurement detection level.
At first there was a urine flood, 5 large pads a day which quickly improved. After 4 months, I am now down to between 1 and 2 small pads a day and improving. I am totaly continent sitting and sleeping, with some leakage during activity.
I am glad I chose the treatment I did, I don't worry about prostate cancer, and most probably, am cured.
I am now 14 months out from surgery. The improvement back to normal sexual function was about six months and to almost full continence was a year. I still wear a light pad for safety.
I feel well and am glad I had the procedure. My PSA is below measurement levels.
It seemed to be very slow progress, measured in months not weeks, to get from an initial 3-4 heavy pads a day to one light pad for safety. Overall, I am very satisfied where I am and am very grateful to the highly skilled surgeon who perfomed the procedure and the great care I received considering the medical complications I had, ie. large prostate of 105 gms and extensive adominal adhesions from a prior surgery.
Nothing new to enter, all is fine, no sign of a recurrence.
Nothing has changed, all is well.
All is fine, PSA; < .01, very slight incontinence, I wear a pad during physical activity and 1 at night as a safety precaution. I am very happy with the treatment I choose.
I am fine, some slight daily leakage, I am slightly incontinent.
No update, my health is fine. I wear a pad due to leakage, especially when physically active.
Nothing has changed, PSA tests continue to show below detectable level. I am somewhat incontinent, need a pad for safety reasons especially when active, and it has gotten a little worse over the last years. Other than that, I am in fine health and take no daily medication.
E T's e-mail address is: etkennedy1 AT gmail.com (replace "AT" with "@")