Confused and Pretty Angry (long)
Well as if it is not hard enough to hear that your life is being interupted by Prostate Cancer....dealing with the Doctors sure seems to complicate things.
This is where we stand right now. We went to see the Radiology Oncologist that the Urologist sent us to. The Urologist that we went to see was refered to us from a family Doctor that we do not know that well either. So all these Doctors are strangers. Well the Urologist sent us to the Radiology Oncologist...they had us sign a paper saying we understoood that they, both the Urologist and the Radiologist were partners in the Center where my husband may be treated.
Well we wanted to speak to another Radiologist just to get other opinions. Someone my husband knows went to this Dr. ten years ago and had Brachy Therapy and says he has been fine all of this time. Also this Center has been in business in Fort Wayne for a long time. There are two competing Hospitals in Fort Wayne... The Center of the original Radiologist we saw has been open since Nov. of 2009. Now maybe the two have as much experience...I don't know for sure...but they have only been open in this City for eight months.
Well when I called the Urologist's nurse to get a referral...the Doctor gets on the phone. He is upset. He says he does not like to give referrals to this Dr. I ask why...he is evasive. He says he will give us one to another Dr. in that group. (I later find out that this Dr. belongs to his Hospital) I try and explain that we are only trying to gain information so as to make a good choice for us. He says he understands but feels as if I am going overboard asking for a referral and asking to have my husbands biopsy sent to other labs. I asked him to send them to three other labs and he had a fit...he said that they would be having all kinds of papers coming into their office and I was putting them out. He said he would only do one...so I asked for John Hopkins. He said he would do it but he didn't like it. He said that all of those labs were just in competition with each other...that is a business. He told me that the other Dr's just wanted a referral so they could bill my insurance more. That really scares me because I have the distinct feeling that he is just a business also. This makes me very sad.
So I call the new Radiologists office and tell them that this urologist won't give my husband a referral. They do not understand either....and tell me to call the Family Doctor for one. This I do...and they say they will, well thinking all is well, the Family Doctor calls and says the new Radiologist will need a Pathology Report before setting up an appointment. I said well we had a biopsy and all of that done and have gone to see the Radiologist. She said...we didn't know that. The last report they recieved about my husband was in March. The Urologist had not sent anything to our Family Doctor...is that right? We have to take the pathology report to the Family Doctor so they can fax it to the new Radiologist. When we went to see the original Radiologist our paper work had not been sent either...we had to wait while they faxed it over to them...these things are making me nervous.
I told the Urologist that we were thinking about Brachy Therapy and once again he was not happy...he said that he would not have that done here. I told him that the Radiologist we saw had them...he said yes but he went to Seattle Wa. to get them done....the best in the U.S. I had read that it was the best place. He said that no one around here was qualified more or less to do the seeds. He would not have that done.
I told him that we were seeing someone in Bloomington, Indiana to see about Proton Therapy and he said we were wasteing our money.
I was so upset by the time I got off of the phone that I couldn't think straight. I have never had a Doctor behave as this one does....does money do this to them? Do they care more about getting our business than seeing people well? Who are people supposed to trust? I do not have a clue? Thanks for listening...sorry this is sooo long.
My husband is a very simle man...he does not understand a lot of all of this, he just wants to get treated and get on with his life. I just want him to have the best care he can as to not have worse problems down the road...is that wrong? I hope I was clear enough for you to understand what I am trying to say.
Run form this guy!! don't walk run, he is trying to bleed you and is being a total jerk!
You may have trouble finding what you need in Fort Wayne..You probably should make a trip to one of the big cancer treatment centers and consult with some real professionals. They will need your husbands complete medical history including all PSA tests and their dates and his pathology report from the biopsy. Your family doctor should have this information or he should get it for you quickly and willingly..
Do not even consider any treatment until you have carefully investigated all the options that are presented to you. Get a copy of Dr. Patrick Walsh's book "Surviving Prostate Cancer" and read it carefully. Here is one in Chicago. There are others..
You have discovered that you represent a major asset to the medical community. They will fight for your business. The surgeons will claim they have the best course of treatment offering the best chance of survival. But todays radiation oncologists can now make that same claim..The "seeds" you mentioned are appropriate for some prostate patients but not others. You will need to talk with unbiased experts to sort it all out...
Forums like this can be very helpful in gathering information from laypersons, some of whom have vast experiences and knowledge to share which can point you in the right direction or ring an alarm bell when something is not right...The more we know about your husband, the more we can help..His age, PSA history, biopsy results, Gleason score, overall health all play an important part in exchanging information...Read as many threads posted on this board as you can and you will quickly get yourself up to speed as you gear up for battle.
Welcome to the Jungle~Not as rosey as Axl Rose sings it! LOL
Hey didn't you know everybody in PCa is an expert and only 'they' can cure you, such arrogance and total b.s. I solicited 8 opinions without referrals and just went to various centers (had great insurance), heard all of the claims and even some lies and agendas. Fired a few docs whom started with me, before actual major treatments, finally found best protocol for my level of disease and probably best doctor for me (I was beyond curative levels to start with) but I got lied to about curative surgery by Doc #1, Doc #2 first LRRP DaVinci doc in USA...was honest enough to say No and that I was not a resonable canidate for curative surgery. (WOW- talk about righteous I was ready to sign up for it, back then..plus knew very little back in 2002). Good news insurance paid for everything, this exceeded my expectations and was the best part of this journey. Without insurance or blind trust in an "expert" I would have been sucked in by Doc #1 (hey he was considered an expert by my uro-doc on his referral) and would have gotten surgery done on me for nothing and went to hormone therapy thereafter...gee that is sooooo wonderful for a patient to be altered forever...cause some expert doc doesn't understand PCa or understands $$$$$ comes first!!! Hypo-cynical Oath is alive and well. How many patients have their nomograms, Partin tables, other analysis explained to them prior to their surgery or radiations, etc?? Some oncologsist inform patients of such up front as courtesy of honest information. (example of patient herein- John T and his journey...he saw many experts before seeing a class act oncologist..hope you read his bio story)
Don't be afraid to fire a loser Doc, they are not Gods, some are more like his nemesis ($^$^$) and only want to cashin on you and walk away to the next unfortunate s.o.b. and 'practice' their craft. Maybe witch-craft (LOL). Great they are practicing medicine (analyze the words).
Here is what Doctor Strum has recently said on the internet about Doctors in general, he is a world class Oncologist whom specializes in PCa and knows many doctors throughout the world, has books etc. If you have seen him in PCa video conferences you will appreciate what wisdom looks and sounds like. He mentions this: 5-8% of docs are very good (maybe he meant experts), 70% are average (probably statistically the doc you happen to hire), and 20% are danageroous (his words)-we hope you didn't hire that "expert". So this is why I mentioned 'Welcome to the Jungle' myself have seen this up front and personal like, it is for real. Maybe not everyone gets the Jungle program up front, good. Too many happen to and don't even realize it, maybe realize it a couple years down the road if they analyze PCa and other patients experiences and issues.
This is why a heavily informed PCa patients and armed with some logic, street smarts and other sensory perceptions can realize what b.s. is before it happens upon you personally. Agenda, and cashin on patients is all to pervasive in this Jungle and it is the same fun in other cancers and even some larger dollars transpiring (how about pills that cost $200 a day??) or single agent drug protocols that cost $10,000 a month, they exist and guess what they are control drugs only (welcome to the jungle-'it gets tougher everyday' as Axl Rose sings it, should be PCa anthem). We do have choices in treatments, protocols, docs, methods and even non-treatment is your choice. Analyze all choices from all avenues is in your best interests. Hey I am not the sugar coater...yeah..did you notice! Yes, it can be better...I hope for others sake you separate truth from talk and agendas.
You will know you have found a good doctor when he simply explains your options to you in great detail, answers your questions slowly and carefully and does not try to "sell" you a course of treatment he has a financial interest in..A good doctor will recommend that you seek out second opinions and advice from outside his "circle" of specialists.
Prostate cancer treatment is advancing rapidly from both the surgical and radiation protocols. Long term survival has become the norm because of early detection and advanced treatments.
So get a couple of good books on the subject and EDUCATE YOURSELF because in the end, YOU will have to make the treatment decisions based on YOUR knowledge....
In the end, it boils down to the statistical effectiveness of the treatment when applied to cases similar to yours and your preferences and tolerance for the side-effects involved..Costs of these treatments can vary greatly, so you want to keep an eye on that too. They won't tell you unless you ask....
Artsy, years ago I had a problem with getting a referral from a large medical practice to a doctor outside that practice. When I told someone about my difficulty, I was told to report the medical practice to my insurance company. As others have told you, run - don't walk - away from the doctors you are now dealing with. Sounds to me like they want to keep it "all in the family" and that is not in your best interests. While you may decide to get treated by these guys, you certainly have the right - and an obligation to yourself - to get as many opinions as your insurance company will allow. Most insurance companies provide for at least one additional opinion. Our insurance company told us they would cover up to two.
If you want copies of all reports and test results sent by the urologist to your primary care doctor, you will need to sign a form authorizing them to release this information at your direction. We encountered the same issue but it was resolved easily though we still have problems getting the urologist's office to notify my husband's PCP of his PSA results. Also, you should have a copy of every test and every report ... ask the urologist for a copy of the biopsy pathology report as well as the results of any other test you had. This way, you have it and can give it to whomever you please. Some doctors don't automatically give you this information - guess they assume that us laypeople wouldn't understand it so why bother. We have a 3 ring binder with the biopsy report, surgical path report, copy of the bone scan, etc. We have handwritten notes by the urologist and radiation oncologist.
Call your insurance company and find out what they would provide for. Also tell them about the difficulties you are having in getting a referral to a specific doctor. As long as that doctor participates in your insurance, there is absolutely no reason why you cannot see him/her. Once you have copies of your test results, you won't need to deal with these guys.