Alliance for Proton Therapy Access

[AlanMeyer]

After reading about this organization I tried to find out more about them. According to their press release from July 25, 2017:

"The Alliance for Proton Therapy Access is an advocacy organization comprised of a growing community of patients, families, caregivers, physicians and industry partners"

I'm always suspicious of "advocacy organizations" with bland names and paid staff that don't say where their money comes from. I have written to them to ask who the industry partners are and who is funding the organization. I'll post any reply if I get one.

Alan

[LearnAll]

The danger of overtreatment is as big as danger of undertreatment. These cancer centers have invested hundreds of millions of dollars on fancy, high tech machinery and now, they want customers to increase their revenues and profits. Many of these treatments are suitable or required in only 5% of patients BUT they make every case seem "aggressive" and do fear mongering so patients and families cave and allow these un necessary procedures and expensive treatments.

Luckily, my MO is an old fashioned ,conservative doctor who from day 1 said,, we will use stronger treatments only if need them" And here I am ..who have not had any radiation or chemo....just had plain old Lupron with Abi added.

PSA came back 0.6 today and Alk Phospahtase came 69. Hb 14.9. Albumin 3.9. Hardly any symptoms.. Take home message: Don't let our fears allow us to be pushed into toxic, unnecessary treatments.

[Hidden in reply to LearnAll]

You said: "The danger of overtreatment is as big as danger of undertreatment." To so many people there is no such thing as "overtreatment". With prostate cancer, being under treatment is not equated with overall survival in the vast majority of cases. Overtreatment is generally not something that I can ever discuss, especially at support groups. Again, no such thing to many.

[LearnAll in reply to Hidden]

Because most people with prostate cancer are controlled by extreme fear and that drives the desire for newer, expensive or fancier treatments. Logical mind gets taken over by emotional mind under excessive fear.

Keeping BMI at 22, walking 4 miles a day and eating anti inflammatory,antioxidant foods/supplements can cause the same effects as some of the toxic treatments..in a regular, average PCA …....that's just my opinion.. I may be wrong.

[Hidden in reply to LearnAll]

If you are diagnosed with Stage 4, then you can increase your survival time with treatment.

But if you just took the general public and compared never treated for prostate cancer vs diagnosed and treated, the life expectancies are fairly close.

[LearnAll in reply to Hidden]

Gregg,

My case is strange as PSA was growing probably for at least 10 years prior to diagnosis. I found out by reviewing my past medical records as my primary doctors office never informed me. PSA was 40 in 2014, 65 in 2016, 160 in 2018 . I was happy guy because I did not know I have PCA...going to Gym 4 times a week, walking 4 miles a day, working full time and enjoying life. It was only 6 months ago, my PSA came out 830 with sudden severe urinary infection.

I don't know what to make of this.. don't understand why there was no problem in spite of such high PSA for so many years.

[kapakahi in reply to LearnAll]

Your doctor never told you your PSA was 40, let alone 160? Did the doctor not know what a PSA test was for? Why did he order the tests if he wasn't going to reveal the results? I must be reading this wrongly because on the face of it, going only by what you posted, that's just jaw-dropping, outrageous malpractice, and the doctor's license should be revoked.

[LearnAll in reply to kapakahi]

I was told Primary doctor was going thru a split with his business partner and having serious financial problems . He was only treating weight loss patients and was letting two new inexperienced physical assistants run his practice . The practice was disorganized . I only went to them once a year for annual check up. when they will do PSA test along with other tests. All this I found out recently. Of Course, some lawyers wanted me to take legal action. But my family is totally against lawsuits and the stress which can come to me as a result of it.

[kapakahi in reply to LearnAll]

I wouldn't want to sue either - I don't trust lawyers who advertise 1-800-SueYourDoctor, and like you say, who needs the stress? But there's stress and then there's your life. At the very least, I would want the state medical board to know about this. But that's just me - I'm not in your shoes and don't have standing to second-guess anyone, and I apologize if it comes across that way. You have a great attitude and I wish the best for you.