Knowing what you know now...

If you're looking through this forum, odds are you have a fair amount of experience navigating your respective healthcare system. I'm an American and ours is notoriously difficult to understand (at least among developed countries). I'm wondering if anyone in this forum has any advice for people who have just been diagnosed with prostate cancer as far as navigating the healthcare bureaucracy?

@Steve n Dallas, I'm primarily concerned about dealing with doctors. My father was just diagnosed with prostate cancer and I'm trying to encourage him to "shop around", so to speak, and talk to multiple physicians and surgeons about his condition, possible courses of action, and what the consequences of these actions may be. But in trying to look for physicians and surgeons, it's extremely difficult to find any substantive means of comparing them to help with the decision process. Really the only criterion available are referrals from other doctors and patients, and I find this disconcerting.

bamitchell54 - It would be helpful if you could put your father's PCa statistics out here for us to see - for example most of us put our details in our "signature" section.

In general having just gone through the maze of finding out what options are available I can tell you to do lots of internet research to find articles, publications, study results, etc. Forums such as this one are also excellent to get input from those that have done lots of research and have chosen their course of treatment option. Talking to medical professionals should also be done, in all of the disciplines including surgeons and radiology oncologists; be forewarned however that typically surgeons will recommend surgery, RO's radiation and so on.

In terms of the "substantive comparisons" of those in the medical realm you mention, referrals from patients they have treated is always a great thing to do; you should also ask each professional for THEIR specific statistics - how many treatments have they done / what % of their patients have PCa recurrence / what are the rates of side effects, continency, ED, rectal - AND have them explain for example exactly what "continence" means, because it should mean no (long term) issues and not "only one pad a day" or "dribbles due to exertion."

As I have offered on the HW site - I have a couple of publications that I would be happy to share with you including a recently (Jan. 2012) report from "Grimm, et al" that I could e-mail to you. Click on my tag (A Yooper) to access my e-mail.

Again, having your Dad's stats out here will help us, help you guys more.

Best to you both.

If you have great insurance you can do your own shopping around (your own referrals) and comparisons and contrasts. I found out only because my stats were so high that I didn't believe the first doc (surgeon) when he wrote it on paper guaranteeing me curative and 1% chance of incontinence, so got many opinions from various types of docs. Dr. Menon reknown LRRP surgeon even denied me surgery as being not curative at all (he was correct too), I saw 8 docs for opinions, lots of fun and many DRE's (lol). I even fired one radiation doc for lying to me and one day before starting radiations, and was flabbergassed that my insurance would and did pay for everything. Didn't matter that I had testings with one hospital and fired them and went elsewhere. Thus, it exceeded my expectations in what is possible. I would have thought they had tight reigns on all there costs and your choices, but found it was better than I would have guessed. This was back in 2002, the good old days (so to speak).

JoeFL said...


I wish the database you are looking for existed....but it doesn't.

@JoeFL, can you (or anyone else for that matter) guess as to why this is? It would be ideal if there were some sort of database of statistics listing the costs of all the treatments and services related to this condition that would allow me to make comparisons between different doctors. Not only does this database not exist, but substantial effort is required to piece the information together by myself. This extra work makes the process of dealing with this condition that much more difficult.

bamitchell54, see the Healthcare Blue Book, mostly for tests not procedures, here:

http://healthcarebluebook.com/

Don't expect it to answer every question you ever had...doesn't exist; too many variables.

I belong to the country's biggest non-profit HMO, in their Medicare Advantage plan. I've been amazed at how great they are at everything I've needed in the year and a half I've been a member, especially after decades of feeling "out there" scrambling for insurance and doctors as a self-employed entrepreneur. When I was diagnosed with PC last year, everything naturally fell into place and I was--and am--extremely grateful to have such an organization managing my health care. In the last couple of years they've blanketed my area with large, beautiful, state of the art medical centers that are something to see and experience. Without getting political, this seems to be the way health care should be organized for everyone, as members of a large organization dedicated to the sole purpose of providing them with the best health care possible. Free enterprise is the greatest system of wealth production and distribution of goods and services ever devised, and where it works to the benefit of the customer within the health care industry it should be retained as much as possible. But when it comes to my care, I really like having the emphasis placed entirely on what's best for me.

I agree with everyone so far - my surgery was 11 years ago.

Physician and expertise or reputation is important.

How Physcian treats you as a person and helps you understand options - just because he/she is surgeon may not be best option.

Some Physicians maybe very good but they can be arrogant ******s and you need to know when to stand up for your rights/respect.

I had a Surgeon who didn't do a Cyto and I had had several strictures. he scheduled me for a sling.

Thank God, he went someplace else when all my history was contraindicative for a sling, he wasn't following standard procedures just wanted the money.

The HOSPITAL where the procedure or treatment is going to be done.

I had surgery and I and 7 other guys in the operating rooms had a staph infection the next day.

We each had different doctors and possibly different procedures but we all got staph - so make certain you are going to good hospital

.

Staff at the hospital is also very important - enough coverage when you are there as well as the staff is familiar with your procedure.

If Staff isn't up to it, they can do quit abit of damage by not knowing what to do or availability of doctor may affect their decision.

I had orderly try to do a rotoroter job with a cath - he was determined to get it in versus knowing his limitation when I had strictures.

The biggest decision is once you make the decision, hopefully carefully weighed options for primary care and secondary care (hopefully not but contingency) - you can't look back or have a do over.   It doesn't do any good to Second guess.

 

BA:

As someone mentioned, if you put down your father's specific info, we can help a little more. Essentially, my take is that for low - to - medium risk scenarios, you'll want to find a team with a lot of experience (# of procedures, success) likely at a medical center that specializes in your preferred treatment and is convenient for you.

For high risk cases, then you'll want to focus on the top handful of major centers and major independents. And you'll need to bounce them against each other to make sure you're getting what you need. I'd suggest (contrary position here) there's no 'slam dunk'. I had to walk away from one of the top major centers, because they weren't aggressive enough for my situation. That's where research and knowledge really helps - -and HT to the forum, i was able to get through that much faster because of zufus, John T and others.

I had a license to practice medicene in two states. I worked for civilian and government medical institutions until I got ill. Let me tell you that the big Cancer Centers are were you want to be. Of course, you will find someone who has a contrary position. When I went to MDAnderson a saw the GU dr., the medical oncologist, the radiation oncologist all in a 6 hour period. The radiation dr. only does GU. They got another one for breast,lung, head ect. It is so specialized they have sub-specialities. That would take me weeks if I was calling around to see the different drs..

when you go to a big Cancer Center you can even rest assured your path. reports, scans,ect are read correct. You can not have that assurance if you go to some small time faciality. My medical advice again is to pick up the phone and go see the "big guys". Do not play around with these small timers.

No Charge for this advice.

James C, I don't think it's as hard as you are imagining...

Firstly, there are many NCI-designated Cancer Centers (Comprehensive Cancer Centers) spread throughout the country. Vanderbilt, for example, is one of the CCCs in your state of Tennessee. I previously posted this LINK which lists all the centers.

Second, you may have to pay higher travel to go further away, but the major Cancer Centers take insurance just like other providers.

Third, regarding your specific question on MD Anderson, they have a very long list (40) of insurance plans they accept. It was easy to find (HERE), and I noticed that they include Humana POS, PPO and HMO.

Casey, I understand that they accept the plans, and I know about the CCC's, the question in my mind is- do/does the insurance plans such as mine allow me to go there just by asking or being referred. Probably every hospital would accept the major plans, but do they resist us trying to go to CCC's, if outside the local area. I know no one can answer about my particular plan and my particular local allowances, but the question is more in general. I suppose I am thinking of what I read of the 'out of network' costs (not travel and lodging expenses) , which is substantially higher and acts as a penalty to make sure we remain in the local network. What's you other guys experience with that?

As a fixed income guy, my options aren't such that I can have a "darn the expense, I'll go there" plan.

Guys, I've got Humana and I've got to tell you that I am 110% satisfied with their support during this wonderful journey. While doing my research, which included the entire U.S., all I had to do once I found a potential facility/surgeon/et al was call Humana, give them the information over the phone and they were able to tell me on the spot if who I was considering was in network and covered or not. I pulled this resource at least 9 or 10 times during my search to decide on a treatment and never had an issue finding out if coverage was there or not.

Humana also offers (at no cost) a "Personal Nurse Program" if you are interested whereby they review your current medical situation and then assign an RN with that background to you. I've got her (Anne H in my case) full contact information and found this to be yet another resource for information. For instance I had a great conversation with her regarding prostate volume vs size and garnered lots of medical details from her. I was also given the toll free # and direct extension to "Margaret" who is my personal contact starting point for anything I may need. This may all sound like I'm getting some kind of kickback from Humana, I'm not, but they definitely "WOW'D" me.

Even if you have a provider other than Humana I would strongly suggest calling them and asking about what support programs they have available - and in this topic's case, what the easiest way to find out if a particular facility/physician/procedure is covered.

I hope this helps - I know that this whole process is a big pain in the *** (pun not intended!?) but at least the insurance coverage part of it wasn't for me.

Best.