Phone Call From Oncologist

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/10/2011 10:54 AM (GMT -6)   
Was pleasantly surprised by a phone call from my new Medical Oncologist this morning.  This is the 2nd time he has called and checked up with me since my initial visit a few weeks ago.  We spoke for a good 20 minutes or more.
 
His first concern was my pain level, and wanted to know if I had adjusted my pain meds to his suggestion, which I have of course.  He said he feels the most important thing for me at this juncture, is to be as comfortable and as painfree as possible.  We talked awhile about pain management in general, and he feels that many GP's are too cautious about pain meds for fear of the patient become a "pain pill" junkie.  Like my uro, he feels strongly that addiction is not an issue if the body is really in a chronic pain situation.
 
He was upset with my 50% increase in my latest PSA, like all, he was hoping things would slow down a lot.  He still does not want to put me on any kind of HT at this point  (this also mirrors my Uro's personal view).  He does feel at my  rate of velocity, within 2 years, I may be in a serious state of progression.  At my request, at my next in-office meeting in 2 weeks, I have asked him to spell out the reasoning and logic of delayed HT at this stage.  He said he would be happy to discuss his findings and research. (Ralph, here at HW, made a good case for those that advocate early-HT intervention), so I am most interested in seeing the other view spelled out.
 
He's also going to arrange some special x-rays on my hips with my local hospital next week.  He has little use for conventional bone scans as far as picking up early mets.
 
I forwarded him a link about a clinical test trial that one of our regular members is about to undertake, to give me his take on its possible value.
 
In this day and age, its admirable that a doctor would take such personal interest in a patient, to make these kinds of calls to the patient on his own.  He told me again, I could call his "special number" anytime I had a worry, fear, or need.
 
As a final note, he will be talking to my Uro next week, to get briefed on my other issues, and for them to be on the same page.  You may never have heard of this doctor, no reason you would, unless you live in western SC, but I already feel like I am in good hands.

David in SC

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 6/10/2011 11:02 AM (GMT -6)   
Quite a gesture on his part David. Be interesting to hear his theory on late HT. Hope the pain has eased for you. I always thought that chronic pain was "in th head" until it happened to me after my surgery, and continues to this day. An eye opener to say the least.
Michel

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 6/10/2011 11:16 AM (GMT -6)   
It's nice when you can find a doctor like him and that you "feel like you're in good hands". You are very knowledgeable and you know when you find someone who is the same. I hope for the best for you.
"Everybody dies, but not everybody lives"
Age 61 Active. No other problems (except small hernia)
PSA 4.3 9/10
PSA 5.5 2/11
PSA 7.1 3/11
PSA 6.73 5/18/11
Template Biopsy 6 pos out of 40 3/25/11 GS 6 (3+3)
CT bone scan neg
6/18 areas positive - 2 in left base, 4 left apex. 6/40 cores pos. 33cc.
Stage T1C
Scheduled appointment with Dr Terk at FROG (for seed consultation) 6/13/11

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 6/10/2011 11:44 AM (GMT -6)   
David, I know it means a lot to have a doctor call you.  My uro (surgeon) told me he wasn't a phone person but responded to emails.  If I send him a note today, he will respond within day.  It means a lot to me.  On that note, it looks like you've found a good team to work with!

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2667
   Posted 6/10/2011 11:54 AM (GMT -6)   
David, I find myself wondering....do you think he's aware that you are a well-known "voice" on HW, perhaps the foremost prostate cancer discussion forum anywhere?  Could that be prompting him to go the extra mile?  Or do you think he does this for all his patients?  I'm sure you presented as an extremely well informed patient, and doctors tend to react positively to that.  I'm not supposing anything here, just wondering whether HW involvement played any part in your relationship.  If so, it may be a type of leverage others can use to improve the doctor/patient relationship.  In any case, he's acting in a way we would all like our doctors to act, and that's certainly a positive thing for you.  Getting the chronic pain under control and formulating a plan of attack have to be positive steps for you, and that can't be overestimated.  Good luck and congratulations again on finding this guy.

Post Edited (clocknut) : 6/10/2011 12:06:23 PM (GMT-6)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 6/10/2011 12:12 PM (GMT -6)   
David: is the xray of your hip to "look" inside it for what might be casuing the pain, or is it being used in an attempt to relieve the pain in some way as I have heard of the use of low dose RT to help relieve hip pain?
Alf
(Edit to add this PS: glad you have found a doc that seems to be staying in touch keeping his eye on you etc)

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 6/10/2011 12:15 PM (GMT -6)   
As Clock implied, this is clearly an attempt to get good publicity on his part as he is following you on HW!!
 
(OK, David, since you take everything so literally, I was joking).
 
This sounds good. He is not just letting things go. He is at least being aggressive regarding your pain and the possible cause of such pain.
 
When will you be seeing him again? Also, did he also agree that you should wait 6 months for your next PSA test? This still surprises me with your PSA velocity issue.
 
But this is great news and I am VERY impressed that he would call. I seem to remember when I was a kid it was not unusual for a doctor to call (and typically make house calls). It's too bad this is now such a rare occurrence!
 
Mel

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 6/10/2011 12:18 PM (GMT -6)   
David, sounds like a good call. I understand your confidence in this doc. I think that is mirrored by a couple of the posts here that said it would be great if all doctors would treat their patients this way.

As I am the guy you mentioned that is going to undergo the clinical trial on diagnostics for MET PCa, I will be anxious to hear what he says about the trial and it's concept.

You may recall that I posted about my doc calling after my surgery. For those that weren't here then, I thought I would repeat the story.

Don't need to mention names, but my surgeon was and may still be considered to be one of the top 5 in the world for PCa da Vinci surgery. In fact his name was recently mentioned in a thread here about Celebrity docs and their marketing campaigns.

I had given my cell phone to one of his staff right before my surgery and ask that they call my wife as soon as it was over and give her an update. For those that don't know, my wife could not accompany me. I traveled a great distance to see this doc and she had just come from a 10 week hospitalization in ICU.

After I had recovered enough from the surgery to call her I asked if anyone had been in touch with her. She said "OH YEAH, FOR SURE". Seems as soon as his staff person got her on the phone it was handed to my doc. My wife said that he talked with her for almost half an hour. Answered all of her questions and gave her a complete breakdown of everything. She said he spent at least 10 minutes of the conversation talking about her cancer, her health and the hospitalization.

To this day I still get calls and follow-ups from his office. I get regular requests for information and questionnaires to fill out. This tells me that he cares about his patients and wants to be complete in the data that he gathers on the patients he has treated.

When he is mentioned in a negative way I don't jump in to defend him. There is no point in it. I know from a personal experience who and what he is. That is enough for me.

Sounds to me like you have found the same sort of guy.

Sonny

Post Edited (Sonny3) : 6/10/2011 12:21:59 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/10/2011 12:37 PM (GMT -6)   
Sonny, I didn't mention you by name in my post, as I didn't clear it with you first. He sounded interested enough to check it out for me, he asked me to e-mail the link immediately.

clock, he knows i am on an on-line group, period. they may be far and few between, but there are good experienced caring doctors out there, i feel he is just of the caliber on his own. from my conversations with him thus far, he's very humble, and i doubt serioiusly if he is out drumming up business or building up his reputation. i am certain he treats all his patients the same way.

alf, he's looking for another approach to understand the source of such intense and lasting pain. the new doc already knows that i would not be keen on any form of spot radiation even if a met surfaced. he feels that the conventional bone scans we get are all but useless in looking for early met development.

thanks, gleason - rob - and michael. feel like i am off to a good start at this new advanced stage, all i can ask for

mel, my post mentioned that i would be seeing him in 2 weeks. still wants to wait 6 month on the psa, as does my uro.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

tedgard
Regular Member


Date Joined Feb 2008
Total Posts : 104
   Posted 6/10/2011 12:40 PM (GMT -6)   
David, as always, I first review your posts. Keep us posted. Even though I am in NC vs SC, it still feel akin to you and your situation.

As you know, I recently completed my RT sessions. It is always interesting to see the progress of others on this journy in comparison to the path that follows.

Thanks,
Ted
Diagnosis Results – Oct 31, 2007;
•Age – 53 (turned 54 in Nov 2007)
•PSA is 3.83
•Gleason's Grade - 3+3=6, T1C

Surgery Dec 11, 2007;
•Cancer confirmed on Right mid and Left apex
•Both nerve bundles spared, some damage to the Left bundle.
•30 day PSA, .01
•90 day PSA, .00
•Latest PSA, .12
•ED treatments: Levitra, Cialis, Trimix, Erect Aid pump, Penile Implant on 3/12/2009
•Happy

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/10/2011 2:54 PM (GMT -6)   
ted,

what part of nc are you in? anywhere in the western end of the state, some of us nc/sc are scheming a mini-get-together soon, would love for you to part of it. hasn't been decided, but probably in the asheville area.

thank you for your support, glad you are holding your own. you might want to update your signature when you get a chance, looks like your last activity was in 2009.

best to you

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 6/10/2011 3:17 PM (GMT -6)   
David, You are one tough cookie, I know I would be an absolute mess if I was going through, what you have and are having to deal with. Makes me feel kind of guilty, worrying about a minuscule rise in my psa, when you are fighting this beast full on. Lets call the PCa beast "Goliath", my money's on David.

Kev.
Kev 53yrs [Gold Coast Qld, Australia]
PSA 4 Gleason 7 [3+4=7]
RP 24/12/08 Dr Philip Stricker [Sydney]
Upgrade Gleason Score 7.6 [4+3=7]
Stage 2 Margin status- Focal Involvement
ED- 90%
PSA
Lab 1- 0.03 for 2.5yrs then 0.04 [changed labs]
Lab 2- @2.5yrs <0.01 WoW !!!!
"Every-day in Every-way I Get Better"

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/10/2011 7:01 PM (GMT -6)   
David, Ted is in Winston-Salem
James C, 64, East TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% inv, lf. lobe, GS6
9/07: Nerve Spar. open RP, Path: pT2c, 110 gms., clear except:
Prob. microscopic inv.-left apical margin -GS6
3 Years: PSA's .04 each test until 4/10-.06, 9/10-.09, 12/10-.09, 2/11-.08, 5/11-.08
Bimix .30

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/10/2011 7:08 PM (GMT -6)   
hmn, that would be a pretty far drive, if memory is correct
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 6/10/2011 7:33 PM (GMT -6)   
David, it is so good to read of such positive things happening in your life.

You may indeed be a special case for this doctor, and he may not treat all patients like he treats you. But, that's not because you're King of HW.

Let's face it, as much as we love this place, it's not exactly mandatory reading for eiither PCa patients, or doctors. The National Cancer Institute figures suggest in the U.S. 600 people a day are DXed with PCa. Throw in Canada, England, Australia, and a dozen other English speaking nations and I expect the daily Dx for potential HW members is 1,500 to 2,000. And we see what? One new person a day? Perhaps 100/200 'active' members at any one time? No, this doctor isn't bestowing nice on you because of HW.

David, to the extent you're a special case with this guy there's a much better reason than HW. The reason is you're a nice guy and he likes you. You and I have talked off list via email. I've talked with others who have met you. And one thing we all agree on -- you're a great person to know, talk to, and be with. A thoroughly enjoyable companion.

I suspect this doctor gets a lot of unhappy, grumpy, angry people coming through his door who have far less to grump about than you do, and he was blown away when he first met you. I bet he went home that evening and said to his wife, "you know, every now and then someone comes through the door that makes it all worthwhile. This David guy who was in today is one of them!"

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/10/2011 8:23 PM (GMT -6)   
sleepless, my friend, now i know how a stack of pancakes feel when someone pours a bottle of good canadian maple syrup all over them, lol. thanks for the kind words.

i don't think the doctor thinks i am any kind of special case, sure he treats each patient on his/her particular case, needs, and circumstances. this is what i have gotten out of him so far.

i assure you, he knows nothing about HW by name, he asked if i were part of an online group in general, and i told him i was for nearly 3 years, and he thinks its good for the support, but potentially dangerous if you are making medical decisons off of an online site. i assured him i wasn't on the second statement.

while some here feel i am not the brightest crayon in the box (and i haven't made any claims about special gifts or knowledge), i do know how to respect my doctors, and i am very much in tune with my body, mind, and emotions. I am OCD about minute details, so it makes any doctor's job easier when you can communicate exactly how you feel at a given moment. Some act as if the doctors are mind readers, that's not the case obviously.

as part of the communication process, i take notes, read notes, write down questions in a logical fashion, and have a pretty decent (not perfect) memory for all my stats, even from medical events 30 years ago. again, that makes its easier for the doctor.

in real life, i treat people the way i want to be treated, nothing special in that, i would assume most people would feel that way. but even in my long working career, i was never a blame person, i was paid for solutions, not to push off blame on someone else.

while most of the guys here seem to respect their doctor's and comply with their advice, some don't. i pity their doctors.

and even at the most horrible and painful parts of my journey, its my policy never to take it out on my wife, family or friends.

but i do appreciate your support, would love to hook up with you one day if possible. are you thinking about going to the NY bash in September?

david in sc

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 6/10/2011 8:30 PM (GMT -6)   
- David - it seems like you are approaching - a place for everything and everything in its place - peace of mind -
-glad to hear the uplift in your writings -
hugs,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 2 of 12 cancerous, 5% involvement -Gleason 7 (3+4)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/10/2011 8:39 PM (GMT -6)   
bronson, i can't say i don't have honest concern, but i am at peace with the whole PC thing.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 6/10/2011 8:46 PM (GMT -6)   
David, I've just read your comments on living a life --- and I rest my case!

As you're a writer, may I suggest you have a book in all of this?

And, along with visitng OZ I'm putting you on my bucket list for sure.

As for New York in September .... no plans at this point, but every time one of these events happens I wish I was part of it, so .....???

Onwards and Upwards my friend,

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/10/2011 8:50 PM (GMT -6)   
sheldon, i just dont have it in me to write non-fiction. i am a fiction writer. plus, i don't think it would make an interesting read,
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

tedgard
Regular Member


Date Joined Feb 2008
Total Posts : 104
   Posted 6/17/2011 2:29 PM (GMT -6)   
David,

Sorry for not seeing your response asking where I am at in NC. I am in Winstion Salem as James said.

I don't know if you had the "mini-get-together", but Asheville is not too far for me to drive if there is still an oppertunity to participate.

I have a crazy work schedule, but may be able to do that if it happen to be at the right time/day.

Thanks,
Ted
Diagnosis Results – Oct 31, 2007;
•Age – 53 (turned 54 in Nov 2007)
•PSA is 3.83
•Gleason's Grade - 3+3=6, T1C

Surgery Dec 11, 2007;
•Cancer confirmed on Right mid and Left apex
•Both nerve bundles spared, some damage to the Left bundle.
•30 day PSA, .01
•90 day PSA, .00
•Latest PSA, .12
•ED treatments: Levitra, Cialis, Trimix, Erect Aid pump, Penile Implant on 3/12/2009
•Happy

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/17/2011 3:59 PM (GMT -6)   
ted,

last word, is in the hendersonville-asheville area, sometime in july. would love to have you join up with us "locals". there's more than a few of us in NC and SC.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10
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