What it takes to be an "Exceptional Cancer Patient"

When I was first Dxed in 2008 I read a lot of books and articles about PC. I ran across several of Strum's articles and read his book "Prostate Cancer Basics". He espoused things that no other doctors were doing at the time, and I thought "this guy really gets it and a lot of this other stuff is just BS. He has always been very critical of how most doctors treated prostate cancer and espoused many thing we today take for granted, like scans and AS. He saw prostate Cancer as a biological problem and not as a mechanical problem like many surgeons and ROs saw it.
I get it that many people cannot afford to travel for treatment. i went to Holland, because that was the only place that had advanced scanning at the time. I used airline miles, insurance covered the scan and I ended up paying $400 for hotels and had a great vacation to boot; cheapest thing I ever did and one of the best decisions I made. So don't discount travel to see a great doctor for a second opinion; you can always make a short vacation out of it and write everything off as a medical expense. It's really cheap considering you are making a decision that will affect the rest of your life.

I like this list. While I have not (yet) been physically impacted by the PCa that I have had for several years, there is certainly a sense of community and wanting to learn all that I can that might be helpful to others.

We are all in this together, to one degree or another. Having an idealized profile of an exceptional patient may not be applicable to all of us, but the positive mindset and accepting our roles is great guidance.

Halbert:

That is a superb point. Most of us are fortunate enough to have built up some resources that will allow us to explore many possibilities. Some can even go abroad for this or that tx. or scan.

In fact, we all ASSUME that everyone has insurance. The discussions always indicate what this or that type of insurance will cover. Sadly, in this country, there are those who got laid off and somehow lost their insurance. They are invisible out there. It is a crime that is swept under the rug, never discussed here or elsewhere, because the right of every American to have insurance does, sadly, not exist. It is shameful.

We have made progress in this area, that is about to be rescinded.

I am very grateful to have had great insurance at work and now an excellent MediCare Advamtage Plan. I shudder to think what would have happened to my resources if I was sans insurance since dx.







Mel

Jack:

Not sure if you are addressing that to me. I agree with your point regarding willingness to travel and seek out the best tx.

You do realize that if you don't have the funds and have no insurance, this is an obscene pipedream.

I went to Mayo Clinic. It would be a 12-hour drive or a plane flight. So, not that far away. The bill was actually about $15K. My cost was $250 (I'm rounding off the figures).

My original surgery was $64K. My SRT was also $64K. My actual cost for both of them, total, was probably under $500.

Tell that to the poor schlamiel who has no insurance and little funds for even traveling.

GOOD GRIEF -- if you have insurance, you're golden. Heck, let the insurance reject some newer tx. and the screams here on HW rise to high heaven, as they should.

You rant and rave about overtreatment. I bet there is a larger problem: folks who have no insurance and can't afford the tx. they need. I suspect they ain't posting here!

Mel

Chris:

Supposedly, "why me" is a common thought/response.
That thought never entered my brain.
Cancer seems to be so prevalent these days. It is not like I got this RARE disease!

Mel

I addressed this before , when it came up last time. All of it is a bit of drama, but that fits nicely on this forum The "willing to travel and/or incur addtional expense" goes beyond insurance. Many of us are not willing to give up our life/means of making a living to get the very best treatment..and that's precisely what it would come to for me. Talk about PC controlling your life...geez.

Yeah, it's all about the spirit in which one approaches the situation.

I'm willing to make some changes to my diet, and I fully know that a dramatic change to fully adopt the "My Plate" guidelines would extend my longevity, well-being and overall health. I'm not going to do that, but I'm willing to make some adjustments/improvements. I feel like my diet is slightly better than the average American. I know that only 3% of American follow the "My Plate" recommendations, and I'm not even close to fooling myself that I'm close to that...but I do draw the line at certain foods.


In a similar vein, I was willing to seek out a good surgeon to treat me because, similarly, I wanted to aim for something better than average. I also know that my surgeon was probably not the best in the world, and I know where I would have gone if I had wanted the best in the world care. I wasn't going to do that.


In both cases, it's about embracing the spirit.


Not adopting the best-in-class "My Plate" diet doesn't make me a failure; nor does not traveling to the east coast and having Dr Eastham do my surgery. It is clear that Dr Strum sought to adjust attitudes and the "spirit" of men in the right direction...not tell them "you must do this, or that."

Regarding the definition of Exceptional Cancer Patient (ECaP) as described in the book “Prostate Cancer – Essential Concepts for Survival” by Medical Oncologist Stephen B. Strum, M.D., FACP
Very prominent internationally respected Medical Oncologist Stephen B. Strum, M.D., FACP specializing specifically in research and treatment of prostate cancer had this to say regarding the voluntary work of Charles (Chuck) Maack as an online mentor locally and throughout the world and his website www.theprostateadvocate.com: “I wish all MDs were as responsive as Chuck. To me, Chuck represents what I call the CPR of what the medica profession should be all about, but rarely is. CPR (courtesy, professionalism, respect).) At another time he remarked: “…..since I regard you as one of the few brightly shining lights in the word of PC support….” To a patient he remarked: “…..in my 31+ years of working with men with PC, find a minority of men who truly comprehend the basic principles/concepts of this disease like Chuck.” More recently he remarked: “”You have led an exceptional life and you truly are an exceptional human being. When someone is good, very good, they should be extolled. I believe eulogies are best served while the person being praised is in the here and now to hear them. Your life is very praiseworthy. I have to say that I have met some darn good people in my lifetime. Thank you for being one of them.” As to ECaP when Chuck asked if he qualified as an ECaP, he remarked that Chuck’s work was beyond the ECaP description.

Hello, Prostate Cancer Advocate ~~~

Thanks for reviving this insightful thread.

We welcome you here, on the occasion of your first post!

Join in ~~~ fellowship and camaraderie abound here!

Handshake, greeting, & welcome aboard ~
CYCLONE ~ # Iowa State University

I don't, at all. 🙂

Nope, he's gone for good.

On that issue of travel, it can be a serious problem, especially for those in sparsely populated states. Another aspect to consider is related to insurance. A relative of mine went to a warm state to escape their home state winter. While there they were diagnosed with a cancer. Insurance is a Medical Advantage plan that refused their request to use out-of-network services and they had to travel back to their home state.

As only having recently joined this forum, I cannot help but be curious why the contributor "Jack H" is shown by so many as being glad he is off the forum. I once was aware of a different individual who posted and actually ran a forum, and anytime you posted something of merit he disagreed with, he would down-play it. It became obvious that if "he" didn't originate something otherwise of merit, he took umbrage. Does this appear to be similar to Jack H?