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My surgeon told me to stop reading about PCa on the internet

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Posted 3/11/2016 3:12 PM (GMT 0)
I don't post nearly as much as I read. Although I have not been here twice a day as I used to, I have asked by doctor several questions about my case because of my reading here. He answered my questions and asked me why I was asking. When I told him his reply was " stop reading on the internet" because every person and case was different and there was no reason to concern myself about issues that are not affecting my health, and that the time spent reading here would be better spent exercising or "getting on with enjoying life "

I think I can manage all three. cool

All the best to every one of you here

Rman
Posted 3/11/2016 5:18 PM (GMT 0)
My doctors know I am a software engineer and won't follow that advice. One told me that they weren't worried about me looking stuff up because they knew I'd approach every thing with critical thinking and wouldn't come back asking about every wacky cancer theory out there.

They also provided me with a nice list of websites, videos and books they thought would be helpful in helping me understand what is going on. I've even had doctors tell me things, "Search for this on the Mayo Clinic site for a better explanation," or "I'll email you a link from the NIH that has some good info you'll need."

A doctor who is trying to be your sole point of information is far too controlling for me and I'd avoid them.

Andrew
Posted 3/11/2016 5:24 PM (GMT 0)

InTheShop said...


A doctor who is trying to be your sole point of information is far too controlling for me and I'd avoid them.

Andrew

Well said, in my opinion. The Uro-RO team who did my LDR Brachy both embraced the internet rather than trying to censor it. They both warned me of the whacky stuff that I could find but also steered me to some reputable sites that added immeasurably to my knowledge of my disease. I did have a urologist who told me to avoid reading books or internet material about the disease - he was quickly an ex-urologist. I just cannot abide doctors who believe they are the only ones with God like wisdom...

Jim
Posted 3/11/2016 5:30 PM (GMT 0)
I recently met with a MO to discuss my treatment. I was quite surprised by what he outlined for me. When I started asking questions he told me not to worry about my treatment. He said I should let him worry about the treatment. I was absolutely stunned. I sought a second opinion which suggested a considerably different treatment plan. I now feel like I may be prejudiced against the MO's plan because he is discouraging me from being involved my treatment decisions. So, I'm thinking of getting a 3rd opinion.

The MO's plan may be a good one. But his arrogance really turns me off.
Posted 3/11/2016 5:57 PM (GMT 0)
The attitude I hear from most doctors is that the internet is here to stay and that it would be pointless to try to stop the tide of information. The concern, and it is a legitimate one, is about sources. I've heard some pretty wacky stuff in support group meetings and online. Often patients don't understand how their case is different from the ones they read about. The media sensationalize things, and even some peer-reviewed journals don't provide adequate context, discernment, or discussion of the shortcomings of the study (which is seldom discussed in the abstracts). So the best doctors can do is patiently correct the misinformation, and at the same time, being open to new information (no doctor knows everything out there - they just don't have the time, especially when it's outside of his specialty). I've always found it a good idea to send the doctor the source of information, preferably in a peer-reviewed journal, and tell him you'd like to discuss it with him at your next meeting.

- Allen
Posted 3/11/2016 6:41 PM (GMT 0)
My MO expects the list of questions I have at every appointment, and encourages them. I'll say, hey I heard this drug is doing this now....and he will go through and explain why it may or may not work for my situation...

Or in some cases, he will say what you heard is crap, and is just one study. There are 5 other studies that show that it isn't true...

If your doctor isn't "letting" you research on your own, I would be very suspicious of that. That's just me.
Posted 3/11/2016 7:28 PM (GMT 0)
I'm a very new member to this forum and just read Rman's doctor's reply. It made me laugh which is among other great things I've found on this forum. Most of all I have found courage and hope here. I was diagnosed 1/28/16 after keeping tabs on psa for several years. I am scheduled for robotic surgery soon and wanted to share my story thus far. It is important for me to say that I have faith and seemed to be at peace with diagnosis. Father died from PC, brother from another, so I realize I am now a member of a "not so exclusive" club. Mu uro/surgeon wanted me to make the decision as to what treatment I should seek. The Rad. oncologist I consulted with suggested robotic, but I was hoping for a bit of affirmation from my uro/surgeon too. Thanks for the support I've witnessed here since discovering this forum a few weeks back.
Mack

PSA 10/12/15 - 4.82
PSA 1/6/16 - 6.72
Rt Lt base - G7 grade group 2 5%
Rt base - HGPIN
Rt Lt Md - G6 60%
Rt Md - G6 50%
Rt Apex x2 - G6 50% 40%
Left Lt base - small atypical glands
Left base - benign
Left mid - benign
Left apex x2 benign
Posted 3/11/2016 8:36 PM (GMT 0)

mattamx said...
I recently met with a MO to discuss my treatment. I was quite surprised by what he outlined for me. When I started asking questions he told me not to worry about my treatment.....
The MO's plan may be a good one. But his arrogance really turns me off.

No way I could work with someone who said that.

As far as I'm concerned, that is right up there with "the check is in the mail", "I'll still respect you in the morning" and "I promise to pull out before the end."

Basically, he is saying trust me with your life, your erectile function for the rest of your life, your continence or lack of for the rest of your life, etc.

I will note the physicians that are the most highly thought of on this forum don't work that way. Every one of the top ones I have read about here are not like that, with many telling the patient to seek out other physicians, alternatives, and thinking.
Posted 3/11/2016 8:58 PM (GMT 0)
What Ken said... Plus, how do you become your own "google doctor" without reading a ton. I know that other peoples cancer scenario is different than mine, but it does help me not only understand the doctors but also come up with my own questions about my treatment options. Read on I say. -JR
Posted 3/11/2016 9:40 PM (GMT 0)
Dear Ravineman430,

A few thoughts to add to the conversation ...

I think many of us did a great deal of reading on the internet when first diagnosed --- it's easy to get obsessed, thinking that if you stay up reading way past midnight, you MIGHT find that there's a miracle cure out there ---

Over time, things begin to moderate --- and you gain your own experiences from continued consultations with your doctor, some sound advice from fellow cancer patients, and some connections that you form with other "Battle Brothers" along the way.

My goal now is to do just enough reading so that I can continue to have INFORMED conversations with my medical team --- I want to be informed enough so that I can participate fully in conversations about treatments, medications, and new breakthrough possibilities that might be emerging ... my doctors give me everything they've got --- I consider them my "leading quarterbacks" on my team ... and I want to be a team player with them, every step of the way --- and that means staying informed and up-to-date.

I will also say that I have enjoyed doing a bit of reading here on this website, forming the friendships and connections I have made here over time ! That seems like time well spent and I like to check in throughout the week, as time allows ! I think a bit of reading here has led to some valuable friendships for many of us, past and PRESENT !

All the rest of my time --- devoted to LIVING LIFE to the fullest ! Prostate cancer might now be a chapter in my life's story, but I don't want it to the the title of my BOOK OF LIFE. So read a bit --- and spend the rest of your time valuing each day !

My thoughts, my viewpoint, my reflections,
"Iowa State Cyclone"
Posted 3/11/2016 10:02 PM (GMT 0)
Every Doctor should want their patients to Advocate for themselves. Even a Hyundai used car salesperson wouldn't say that. I just went to buy a used car and the sales person advocated I do research and find the best car that suits me. Guess what? He was right. I don't want the Hyundai but I would send everyone I know who is interested in a used to this guy.

Yes, it is hectic and the info overwhelming. But in the end, you and your family must live (or die) with your decision. Make the best one you can.
Posted 3/12/2016 12:47 AM (GMT 0)
My doctor recommended this place. Let me guess, you doctor is in his later 50's?
Posted 3/12/2016 1:59 AM (GMT 0)
I guess the big question is Do you want to rest your life solely in your MO's hands, or do you want to play an active role in your treatment plan.
Posted 3/12/2016 2:39 AM (GMT 0)
Get a new Surgeon... Oh; tooooo late
Hero
Posted 3/12/2016 6:02 AM (GMT 0)
Gary's medonc said to me yesterday " Yes, I know you have zytiga at home." And, "I know you are going to go home and Google this new dx, so I will just Google it right now and show you what it looks like."
I still went home and googled it myself...LOL! But I appreciate that he respects that about me, while he knows Gary prefers the paternal approach.
He asked Gary if he'd read the information about the chemo tx he will get next week, and Gary said, "No, that's your job."
Poor MO. He has put up with us for over five yrs now!
@ Billy Bob: We never wait for more than 10 minutes. Perks of small town. Sometimes when you go big you never seem to go home turn
Posted 3/12/2016 10:30 AM (GMT 0)
I had an oral surgeon ask to to Not tell anyone about my upcoming surgery to extract two impacted molars.

He saw the puzzled look on my face.... And then said that if I tell ten people - I'll hear 20 horror stories.

He was right idea
Posted 3/12/2016 2:48 PM (GMT 0)
I echo the many comments of those that say this doc would not work for me.

My Onco is extremely open to my research and bringing info to him. I have been involved in 3 diagnostic clinical trials at the NIH, that I found on my own or through HW. Each time my Onco encouraged my participation. He said that the info I would gather from these scans would be absolutely helpful in my future treatment. It was the C11 scans at UCLA that identified nodes that his CT scans did not find that started me on the HT path. Many times we have discussed new developments and many times I have copied him on supporting information documents I have found. He is always appreciative.

Last week when I saw him about my upcoming path for treatment, he opened the discussion with "What do you want to do?" I told him, I know you have a plan in place, so I will listen to you first. We both agreed that the Lupron/Taxotere was right for me at this time. Lupron worked very well for me the first go round and I have no reason to think that it wouldn't be effective again. But there is just too much data now indicating the improved efficacy of combining it with Tax.

He had done the research and arrived at this, but still welcomed my input.

I am my own best advocate in this journey and we have a partnership. He welcomes this wholeheartedly. I do not think I could work with a doc that took the stance, "I am the doc, I know what I am doing, so just do what I say."

Just my two cents on this, for what it's worth.

Sonny
Posted 3/12/2016 3:31 PM (GMT 0)
^^^Hey Mack54, I noticed your first post. Welcome to our forum!
Posted 3/12/2016 7:07 PM (GMT 0)
Thank you very much. As I said in my first post, now a member of a not very exclusive club. But with the odds today and family history I wasn't surprised with my diagnosis. I have found this forum to be very helpful. Most post are positive, from strong, courageous people, which gives us all hope. I'm about a week out from surgery, my first, having never been admitted to a hospital before. I have much to be thankful for. Thanks to all for their comments and support.

Mack54
Posted 3/27/2016 4:45 PM (GMT 0)
From a slightLy different angle....
I'm seeing a psychologist who is working with me on controlling anxiety with biofeedback. She's asked me to get off the internet, stop searching for info, stop spending time on my heart health forum, and not to go back to HW.

I've semi-agreed. We made a deal that I'd limit my heart health forum participation to 3 days a week. But I explained to her that HW doesn't make me anxious, because I'm at a point where I'm not so concerned about PC anymore, and that HW for me is more about community, as well as getting some satisfaction from helping a new guy once in a while. So she agreed it's fine for me.

But the internet can clearly raise anxiety in some people
Posted 3/27/2016 7:17 PM (GMT 0)
When my surgeon told me to stop smoking my 2 butts a day I stopped
When my surgeon told me to stop reading here, I said OK, but I am still reading almost daily.

Sometime doctors get a bit carried away, so they you don't always have to follow their advise.
Sometime you should take their advise.
A patient needs to use their own judgement to decide.
Posted 3/28/2016 5:19 AM (GMT 0)
On the other hand, remember that while doctors have the same human foibles as the rest of us, they do have at least seven years of intensive medical training. Weigh that heavily and take a lot of what you read on the Internet with a shakerful of salt. Caveat lector: Let the reader beware.

The best doctors and the best patients share decision-making.
Posted 4/1/2016 5:34 PM (GMT 0)
I don't listen to Doctors much. I know my body for 60+ years and I'm different to all; I know what I know about this body. I prefer a trial an error protocol. My doctor once advised that I should take 5000ui vitamin D in morning and the same at night. I ignored the advice and ate salmon + rice twice a week -- problem solved.

When my doctor and I "decided" to take action when my PSA was 3.7 (and not wait till > 4.0), I took his advice. The rest is history!
.
Posted 4/1/2016 5:40 PM (GMT 0)

PSA3DOT7 said...
I prefer a trial an error protocol.


Unconventional, to say the least.
Posted 4/1/2016 10:44 PM (GMT 0)
Because I just didn't know about a PSA test, I was DX October 1, 2012 (age 61) with: High Volume, very Aggressive with Mets from my skull down to my left knee and given 4-5 years (at best)!! WOW!

I then got on the internet to learn all I could about PCa. Will admit, some of the things I read, made me so depressed and scared me out of my mind! But, in just a few months, I got over being depressed and realized that everything you read on the net, take with a grain of salt!

For the past year or so, my bi-monthly PSA has been <0.064. I have a great faith support at my church and thankful for my MO! My MO (female), has never mention to me to stay off the internet (I wouldn't take her advice anyhow)!

So thankful that I found HW, as this group seems just like family.

Take care,

Dave in Bartlett, TN
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