Ronald Reagan Medical Center UCLA / BEWARE

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Exumab
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/29/2009 3:10 AM (GMT -6)   
My first episode of Prostate Cancer was treated with external radiation and I was cancer free for 6 years. It returned two years ago and I was treated with Brachytherapy. I returned to the doctor who had orignally treated me however I later discovered he was now the only Doctor in that hospitals so called Cancer Center. It was essentially a waiting room, a row of approximately 10 treatment rooms. You are directed to a room and the doctor comes in talks with you for a few minutes and moves on to the next patient. On one visit as I put my clothes back on after a short exam I overheard the doctor who had just left me using the same "Line" regarding his view on a specific treatment to another patient. As disturbing as that was it was nothing compared to my recent experience when I transferred to RRMedical/UCLA which had been touted as in the Top 2 hospitals in California and a training hospital as well. (Presumably better)
 
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!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/29/2009 8:28 AM (GMT -6)   
Exumb, that is a really, horrible, terrible story you tell. No one deserves to be treated in the manner you described. It grieved and frightened me just reading it, let alone living and dealing with it like you are. I feel for you. I think what happened to you, is the exception, and not the rule, but that doesnt matter if it even happens to one person. I would find it totally unacceptable. I am not sure what ethical or legal remedies you may or may not have, might be something worth thinking about. I hope you can recovery satisfactory after all that. We are here for you if you need or want support. My best to you.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 686
   Posted 1/29/2009 10:56 AM (GMT -6)   

 

 

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. 


PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8
No extension or invasion identified
Few continence problems
PSA 90 day (-.01)  , (6 month -.01) , (9 month +.02) , (1 year +.02) ( 18 months +.02) (two years+.02)
One side nerve spared
success but some plaque with bimix 
born in 1941


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/29/2009 11:28 AM (GMT -6)   
lifeguyd, there's something to be said for the small city and town hospitals, it really scares me when you read about the bigger city assembly line approaches to treatments and surgeries. Make it seem obvious sometimes what their real motivation in cranking in out day in and day out.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/29/2009 12:10 PM (GMT -6)   
Why go through cryo too based on these genuises assessment, you could. You could also see PCa oncologist and treatment remaining PCa chemically and do probably pretty well. You choices, I have mentioned how fantastic some of these docs and there arrogance can effect our lives, do they care???? Tell them you don't have insurance, then see if the care enough to still see you??? Alot of cashin on us is going on, sometimes it is not recognized easily.

Sorry for your messy journey, it is a wild world out there and not all patients get a fair shake or good decisions from some docs, whom should be held to some reasonable standards of accoutability. Some PCa patients have decent cases to win a malpractice suit and maybe should do so.
 


Exumab
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/29/2009 2:15 PM (GMT -6)   

I thank each of you for continuing this discussion. It is very helpful to hear that others are aware that this situation exists. The trouble is it is more common than one may realize. I am especially bolstered by the remarks concerning the the dire need for changes to the health system. Frankly, I am totally convinced that changes will not do it. We need to do away entirely with the system in place and set up a national health system that works.

As opposed to the current national health systems of Canada,UK and many other countries that don't work. I think that between the insurance companies and the AMA our present system is an invitation to wholesale larceny. Case in point:

A few years ago I was cooking and hot grease splashed onto my bare arm. A few days later the burn began to look a little touch and go so I went to the emergency room of my local hospital. Where the doctor said I was right to come and examined the burn, left me with an intern or whatever who proceeded to put a little packet of burn cream on the injury and wrapped it with ventilated gauze. The entire procedure took about 30 minutes.The bill?.........$1500. This makes me think of the Military expense budgets that list a toilet seat costing $1200 and a screw driver $250. It is nothing but very grand larceny. Is it any wonder that medical costs nationwide are through the stratosphere?

I strongly suspect that if the curtain were pulled back on the books of our current medical system and the highway robbery going on between doctors, medical institutions and insurance companies were revealed it would make the Bernie Madoff and wall street rip offs look paltry by comparison. I wonder how things would be if the American people recieved a medical bail out ,a national health system with very strict oversight and the peace of mind of knowing they and their families have access to excellent health care based on the caring treatment of patients and not making the hospitals profit projections for the year.


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 1/29/2009 3:01 PM (GMT -6)   

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


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 686
   Posted 1/29/2009 7:56 PM (GMT -6)   
Purgatory said...
lifeguyd, there's something to be said for the small city and town hospitals, it really scares me when you read about the bigger city assembly line approaches to treatments and surgeries. Make it seem obvious sometimes what their real motivation in cranking in out day in and day out.

I am a huge advocate of personalized medical care.  I like it when I walk into my doctors office and his receptionist greets me by name. Hi Guy, how are you, what can we do for you today.
 
Assembly line medicine puts the patient in danger.  I agree that most nationalized medical systems are also too rigid and impersonal.  I dream of a funded system that offers the same medical opportunity to every person in the country with out charge.  That is probably unrealistic, but I can hope, can't I.
PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8
No extension or invasion identified
Few continence problems
PSA 90 day (-.01)  , (6 month -.01) , (9 month +.02) , (1 year +.02) ( 18 months +.02) (two years+.02)
One side nerve spared
success but some plaque with bimix 
born in 1941


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 818
   Posted 1/29/2009 9:41 PM (GMT -6)   
As long as we're picking on UCLA, to be fair, I will pick on their arch-rival, USC. Which is where I get most of my medical care.

USC's medical center is, of course, affiliated with their medical school. I will guess that UCLA's is as well. So they may have some of the same problems. One problem is turnover. Some folks get fine training and become good doctors, start their career off well...then move on. I notice that with the GPs at USC, maybe not so much in the specialties. Over the years, many times I find a darn good doc, make that doc my primary, then a year later he/she moves on. Darn. Look for another one. Darn, do it again. This seems to be a problem with medical schools, separate and not exclusive of the big bureaucracy problems that people are discussing. It's a problem. I don't have a solution.

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)


Exumab
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/29/2009 11:46 PM (GMT -6)   
"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."

I cannot for the life of me understand what possible objection there can be to a national health system which insures access to free medical treatment for all. Such systems already exist in other countries and I have no doubt that if we were seriously interested in learning from their mistakes and creating and even better version founded upon the establishment of a like system we could do so. Starting with an $800 Billion dollar "Bail Out" underpinning a new price controlled government monitored, free access for all system.

Our present system of care is a failure. An horrendous situation which is persistently and insistently perceived to be a matter of " having a few problems." Which is tantamount to the same comment being made by the captain of the Titannic after hitting the iceberg.

The reason that I went to the emergency was because it was a Friday afternoon and my PCP was not available. You point up another problem with our current system and a resulting health risk to all. The responsibility you impose upon the patient to find health care AND find it in the right spot. This would not be necessary if a system makes it possible for everyone to receive health care at any NHS facility as is expedient or convenient to their situation, simply by presenting a National Healthcare identity card as is the case in Canada and UK.

The overburdening of emergency rooms is the direct result of the unspeakable rate of hospital closures which were permitted to occur across the nation over the past several years as the government refused to fund their survival. ie "Bail them out!" So much for the sincerity of repeated political cries that there is a genuine desire to fix the American health care problem.

The present situation is the direct result of successive political administrations "allowing" the insurance companies and the AMA to satiate there greed and avarice at the cost of the health of the nation.
One need not be a Rhodes scholar to understand that the present so called Health Care System , which has produced a situation where tens of millions of Americans are without any health care coverage at all because they cannot afford health care and therefore do not have access under it's design and structure is on it's face no system at all and more to the point should not be allowed to exist. The only people who have a problem with a free National Health Care System are those who have a vested interest in maintaining the present one.

The recent collapse of American financial institutions thought to be immune to failure which now threatens to destroy our national economy is a perfect example of what happens when government fails to do it's job and protect and preserve our financial future. This is a wake up call that should send a warning that there is a Perfect Storm in the offing for the current health care system as well and it's no good trying to patch up a failed system which needs to be dismantled and done away with. What is needed is a complete new system one that meets the needs of the American people in the 21st century. That we have never provided this and still continue not to provide such a system is representative of our reluctance to kill the Golden Goose, the source of great profit.

I heartily suggest that everyone get their hands on a DVD of the motion picture "Sicko" produced by Michael Moore. You will be really glad you did. It shocks one into a sudden awareness of just how really bad the American health care situation is. And one discovers also what is not only possible but already existing elsewhere when a better system is in place.

Many thanks for your comments.
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