Prostate Cancer Survivors

 

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PCa doctor bias and lack of options laid out for patients to consider

A friend of mine just informed me he had robotic surgery done for his PCa, which he mentioned to me after the fact. Never knew he had even gotten tested or had issues. Typically his psa went up approx. from like 1.3 to 2.8 within a year and he got biopsies. Out of 12 biopsies, one positive with Gleason 6 given, he did not get his pathology report (in hand-printed out) which is typical. If you don't ask for it you won't see it either, the doc gives you a quick interpretation of what he believes you need to know: i. e. a gleason score and not all the other details like: percentage found cancerous, the name of the type of prostate cancer (there are variations), was peri-neural invasion found, did other areas have high grade PIN...etc. Are those things relevant, well yes they can be and you should strive to know what these parameters might mean or how they may influence your disease and battle.

My brother has been diagnosed with similar to the above mentioned friends stats and he has had no treatment for about 4 years now. Does a reasonable diet, but no drugs or huge changes in lifestyle. He does not plan on making any quick judgement on PCa, even though he and his doc kind of laugh off at each meeting...'I have to inform you of surgery as an option'(doc)...."yeah thanks will let you know, if and or when"(brother). Even his doc makes light of the immediate action on surgery.(not typically the case out there from what I have witnessed)

I feel for men that are rushed into any modality and without all the relevant facts, choices, known side effects, and future changes that will occur to them.
Get informed before making your choice(s), there are profiteers out there whom put $$$$$ ahead of what is in the patients interest. (typical of our culture in general) Not all docs are in this category, but get 8-opinions or so and then you will smell what the real world is showing us on PCa. I did get 8 opinions and was amazed and saw: bias, agendas, and even lying in the name of closing the deal to cash in on one modality that someone specialized in. Same applys to hormone therapies and oncology: lots of choices and some of them are never told to the patient. Until we patients get more informed, more united, more out reaching, the agendas and biases will continue. Thanks to the internet and support groups and newsletters more of the truth on PCa issues is finding its way to more people. Finding out what you could or might have chosen, months and years later is not comforting to live with.

You would know you have an unbiased doctor when he tells you to seek more information, get second opinions and then "come see me" if you are ready for my treatment. There are some docs that are like this too.

(Now for Rodney Dangerfield jokes: 'my wife likes to go fast, so she said get me something that goes from zero to 300 in 4 seconds'....so I got her a bathroom scale)

'my wife likes to talk when shes having sex, so she called me from the Hilton yesterday'

(Leaving you on a funny note)

Re: PCa doctor bias and lack of options laid out for patients to consider

Boy, I know exactly what you're talking about. I was rushed into robotic surgery (I believe so the doc could get the experience). I wasn't given any other surgical option. I regret it every day. I wound up having 8 weeks of radiation to clean up the mess.

Paul A. USA.

Re: Re: PCa doctor bias and lack of options laid out for patients to consider

I agree with the above comments, but at the same time query putting all the blame on the doctors. Where is the patient in the desicion making process? Is it because in our society cancer is a "death sentence" and we want to get rid of it immediately? Do we loose all our sense of reasoning in the rush to get rid of the cancer and forget about the option of a second opinion?

I receive between 20 to 30 phone calls a week from men and women looking for help, guidance and advice. Nearly half of them are newly diagnosed. Of these newly diagnosed very few have thought about a second opinion from a doctor other than an urologist. They are amazed to hear that in Israel they have other options besides RP.

For the above reasons we haved formed The Living with Prostate Cancer Foundation.Besides promoting PCa awareness, creating support groups and a hot line we hope to try and "educate" the GP. Patients have to learn that that they have a say in their treatment and with the internet there is very little difficulty in learning about the various diseases and the appropiate treatment. I do not have the answer on how to educate the general public to take resposibilty for their bodies, but those who do are not bulldozered into a treatment that might not be suitable.

Re: Re: Re: PCa doctor bias and lack of options laid out for patients to consider

In my case, I had concurring opinions from a second urologist and a radiation oncologist. And what you say is very true: a cancer diagnosis affects your decision making process. prior to my surgery, I had a great deal of trust in the medical community. Now I question everything that any doctor tells me.

Paul A. USA

Re: PCa doctor bias and lack of options laid out for patients to consider

Bob,

That was an interesting post. I also believe there is often a push for immediate treatment that may not be necessary, or any treament at all. If you haven't read this paper by Dr. Stamey it's an interesting read and goes along with what you said in your post. I'll put a link to it below and maybe we can all discuss it.

Of course NOT ALL of the people found with PCa today fall into this catagory but from what I've read most do and that's why there's such a controversy over how or if to treat them. Doctors say the problem is since we don't know which tumor will progress slowly or quickly we treat all of them the same, which leaves it up to the patient to take the risk of watchfull waiting or go for immediate treatment. And let's face it when someone says you have cancer the emotional reaction if most often the driving factor.

The Prostate Specific Antigen ERA in the United States is over, what happened in the last 20 years

I must point out someone I admire, Terry Herbert. He researched the disease when he was diagnosed and came to the conclusion he could wait and deal with it later IF it became a problem. Then after 12 years he needed to go on ADT, which saved him 12 years of living with the after effects of surgery or EBRT. To me, for him it worked out very well since many people end up on ADT after surgery and EBRT. So Terry I salute you, you have shown both great courage and grace dealing with your PCa and running this site to help others.

The Stranger

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