Ronald Reagan Medical Center UCLA / BEWARE

The brachyterapy had not gotten all of the cancer and my psa level rose steadily after that treatment. Independently my general practioner at my request tracked my psa level with tests every 3 months. I arrived at UCLA with these results in hand and the doctor I was referred to was the head of a Cancer related department. On the first visit I met him and was immediately turned over to a junior doctor. He was "Excellent" spending an hour and a half answering every question i had and informing me that there would have to be a "Wait and watch" period over the coming months to see what the psa does.

Finally when 7 months had passed I returned very concerned.

The young doctor I had before was no longer there and the Dept head recommended I consider Cryosurgery and I was referred to a doctor in the Urology Dept.

I anticipated an in depth discussion as I knew nothing about

Cryosurgery. The doctor arrived in the treament room and started asking me question regarding my stats from previous treatment and luckily I had brought my medical records with me and I handed them to him and he had the answers he needed.

The visit lasted 20 minutes 15 of which were spent with him writing down information from my records. HE KNEW ABSOLUTELY NOTHING about ME ALTHOUGH A COMPLETE FILE EXISTED AT UCLA and I had a scheduled appointment. Having copied what he needed he stood up left and returned with a nurse assistant. I asked him what are my options.He impatiently replied "Well you've had the other two procedures.... and with that he recommended Cryosurgery  and told me "He wished he could have done it sooner." (THIS AFTER I HAD SPENT 7 MONTHS WITHOUT TREATMENT BECAUSE OF THE "WATCH AND WAIT!

The nurse gave me some booklets and I was told to call back and let them know what I wanted to do. With that he left the office. He was finished and on to the next patient.

I tried to make the most of the booklets on Cryosurgery in spite of the clinical language but overnight my anxiety was now out of control. The absolutely cold blooded totally unfeeling and lab rat treatment from the doctor left me feeling emotionally devastated. I left thinking "This is how Dr. Mengele's (**** Human experimenter.) patients felt." I could not believe it.

With what appeared to be no option I called the next morning and asked to be scheduled for the cryosurgery.

The Cryosugery was done by yet another doctor who appeared at my bedside requesting I sign documents  before going in for the procedure. They planned to send me whom a few hours later but not only was I not in any condition to go home so soon, I had discussed this with the nurse prior and was told I would be scheduled to stay overnight " A ROOM HAS ALREADY BEEN RESERVED!!) I ended up spending the night in the post op area and went home the next day with a catheter and a piece of paper telling me to call for an appointment to remove it a week later. I did went back and a student under the direction of a nurse removed it. (Did an excellent job of it too!.)

I subsequently had two bladder infections within the first week and when I called from my bed to say the infection had not been cured by the first round of antibiotics and I need a second, I was told I had to come in and give a urine sample. I exploded on the phone as I was in agony and the request was rediculous. I was so angry that I hung up the phone and was called back 15 minutes later and told my pharmacy now had another prescription.

Since then I have had not a single word from the hospital. There was not a single word from anyone telling me anything whatsoever about the outcome of the procedure or anything else. I had been given the treatment and DUMPED!

 I was now at a complete loss as to what my situation was healthwise and as regards the outcome of the procedure, what they found etc. OH! I AM NOW IMPOTENT as far as I can tell and haven't got a clue if that is temporary or permanent.

I have suffered with Major Depression since I was 18 year of age and been treated on an ongoing basis including 6 treatments of electro shock therapy last year. I am a very young 64. People are shocked when I tell them my age.

The Cryologist was given my complete past medical history by me in that 20 minute appointment. Had time been taken to verbally walk me through this procedure instead of leaving me with booklets  and I knew that damage would be done to my sex potency related nerve bundles I would have stopped and given extremely careful thought to going ahead with the procedure.

I called and requested a copy of my records related to the Cryosugery a week ago as this is apparently the only way I am going to find out anything about my procedure. Nothing has been received as yet. I knew before hand that I must take part in my own cancer treatment long ago and I attempted to the best of my ability to do just that. I initiated the PSA tests independently and tracked the results and contacted UCLA to notify them of the results. Had I not done so I never would have heard from them again." I " contacted them when the numbers continued to rise.

I send this letter to warn everyone that you CANNOT rely on or trust your doctor to provide you with all of the information you need to make educated and intelligent health decisions . You MUST do your homework and find out as much as humanly possible about your condition, available treatments etc. before making a decision.

I don't know what my situation is at the moment but I sense that much has been lost and although I can deal with the realities of fighting Prostate Cancer I will never recover from the incredibly insensitive assembly line treatment I have experienced. I have taken my cat to the Vet and recieved more information and humane consideration both before and after it's treatment than I just experienced. Sorry this is so long I just needed to share the experience with someone.

Many thanks!

http://www.uclahealth.org/homepage_med.cfm?id=264

Once again we see that our medical dollars are being badly spent.  If you click on the "whiz-bang-whoppee" web site above, you must wonder how a patient can be so ignored. EXUMAB, your story is unfortunately not unique.  All of this has happened at a 21st century medical "cathedral". Just think what must be happening without all of the wasted dollars. I got better treatment in small town USA, and I still have a few complaints.

You are right, we must be our own advocate.  Even more than that we must all work to change the "face" of medical delivery in America. 

Dear Exumab:

First of all, my sincere condolences for the treatment (or lack thereof) that you received.  It was really unforgivable and extremely unfortunate.  Hopefully you will now get proper care for your PCa and be on your way to a satisfactory recovery.

Secondly, regarding your commentary on the health care system...yes, it's clear that something is broken but I'm personally not ready for a national health care system.  As you so correctly point out, despite very good intentions in many locations the results have generally not been good.  I experienced that first hand when I lived outside the USA in multiple national health care countries when I was on assignment for my company..

Finally, the example you give, while the costs WERE outrageous, is probably an example where you as the patient caused part of the problem by choosing health care in the wrong spot.  As you described the issue, I would have thought that the first step would have been to go to your PCP, especially since it was several days after the incident.  Or, at least to go to an urgent care center rather than to a hospital emergency room which is, by definition, overburdened and costly.  I guess my point is that the problems with health care are not only generated by greedy providers but there needs to be something done to incentivize patients to take some personal responsibility in the process as well.  For example, if YOU had been personally paying this bill and had known that the cost of your PCP would have been $100 and the emergency room was $1500, I'm guessing your choice would have been easy.  Anyway, just my opinion and food for thought.

Tudpock