FU with Onco-First Really Good Dr. Appt Since Diagnosis

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Sonny3
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Date Joined Aug 2009
Total Posts : 2448
   Posted 9/10/2010 12:39 PM (GMT -6)   
As I mentioned in an earlier post, I had my first Post MET Radiation visit with my PCa Onco scheduled for today. In preparation for the meeting I had a PSA test done Wednesday and it had gone from 1.3 pre MET radiation to 2.2.

I was really prepared for an HT discussion and I was also prepared to ask the doc about the possibilities of taking a break from PCa until the end of the year.

I was not prepared for the outcome of this appointment.

I planned to let him have his say first and then to discuss the break and my reluctance to jump on the HT path right now. He came in and started a normal physical review, asking lots of questions about things like weight gain, muscle loss, the drugs I was currently taking, ED progress and so on.

It was quite a lengthy discussion that lasted about 45 minutes. He told me he would like to see me start a real workout and exercise regimen, maybe change a few things about my eating habits and see if we could effect better sleep patterns and try to ween off of the sleep aids. He feels that I am not getting enough GOOD sleep and it is dramatically affecting my overall health and recovery powers. Did I mention it was a great conversation?

Then he said he wanted to see me in 4 Months. Now that one caught me totally by surprise. I asked about our previous conversations about HT. He said that I had done enough current testing with scans and so on that he was confident that there was not anything significant going on in my body right now. When I asked about the PSA results, his response was also something I did not expect.

He said that PSA was a great diagnostic/screen tool. It was useful following surgery/radiation therapy, however began to be a little less at the forefront when following up after all that I have already done. His analogy about HT was something like pulling out a cannon to go after the mouse. They have many tools to treat specific things that cause PSA jumps, like mets and so on. But he also believes that there is no clear cut definitive number that one must be at to start HT. Each patient should be treated in the whole, their overall health, physical condition, mental condition and so on. Treating the entire patient.

He kinda echoed something my Rad Onco had said in an earlier visit. My PSA may just be my number and it is what it is. I may just have enough little PCa cells running around in my body that collectively combine to give me a number. If they mass up in one spot, then we deal with the occurrence, then we look at HT and whatever other tools we need. But for now I should get on with living and enjoying life and QoL.

I told him he could add mind reader to his medical credentials. When he asked why, I told him about my plans for today's discussion.

I thanked him for the break and his input and told him I would see him in late January. I also told him I would be better prepared for a discussion about HT. He looked at me and said "WHY?, I don't think I will be any closer to putting you on HT then either."

I know that this will fly in the face of many discussion we have had here about HT and when to start it, as well as what many respected institutions and other doctors have said or published.

I have confidence in my Doc's approach to PCa and it is not just because he said what I wanted to hear. It is because of who he is, his credentials and the philosophy he has of treating the entire patient as an individual and not by some set of numbers and so on.

We have all said here many hundreds of times, that Pca is different in every individual. My doc seems to have gotten the same message and treats every patient differently based on their cancer. To me that is very refreshing.

So my friends I am off to traveling and enjoying life and my wife. I will stay here on HW until the end of the Great GFMPH weekend (9/27)so I can report about all the great things that I am sure will be experienced.

Then I will taking a much deserved break from all things PCa.

I love you guys and the appreciation I have for each of you and the support you have given Lynn and I can never be really shown in the words I write here.

Thank you my brothers and sisters,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/10/2010 1:03 PM (GMT -6)   
Have a great road trip and enjoy.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 9/10/2010 1:07 PM (GMT -6)   

Sonny:

 

That is WONDERFUL news for you and also those of us who fear that we may be HT candidates down the road. It really sounds like your PSA just isn't all that bad.

 

Now, forget about this CRAP and have a wonderful time.

 

Mel


PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/10/2010 1:28 PM (GMT -6)   
Zufus, thanks brother, we are really looking forward to it.

Mel, thank you too. I don't know that I will become the banner child of not going on HT, but at least my doc seems to want to treat me on my case and not by a set of numbers. I take great comfort in that.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2

Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 288
   Posted 9/10/2010 1:45 PM (GMT -6)   
Sonny, pleased to hear you upbeat and thanks for information. I went to a 5 month follow-up from my SRT last week and the rad oncologist spent a few minutes talking about his philosophy of when to start SRT (he did caveat that he still thought my psa would go undetectable within six months). Essentially he said "with your profile" he wouldn't rush into HT even if my psa started rising. I left feeling much better about my near and intermediate future and QOL regardless of the next psa test.

Enjoy your RV journeys!

Our best to you and the gang,
Jake
Diagnosed 8/2008 Pre-op psa 4.2, Age 60 at dx
7 of 12 biopsies positive 3+3
DaVinci LRP 11/08
Post Op clear margins, no extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
9/21/09 Bone scan clear, psa still .2
11/12/09 chest xray was clear, psa however up to .3,
01/05/10 psa still .3, SRT 01/19/10 started 39 sessions 70.2gy, psa 6 weeks into salvage IMRT up to .4
Post SRT psa at 10 weeks (5/31/2010) down to .2, @20 weeks (8/20/10) .1 (getting close)

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/10/2010 1:51 PM (GMT -6)   
Sonny, I LOVED reading about your discussion with the oncologist.  I could actually feel myself relaxing as I read your post!  Good...no, great...news for you and Lynn!  Sounds like you are in good hands with this doctor, and that you're "on the same page" which always helps!
 
Go and enjoy your travels, and pamper yourself and your lovely wife.  We'll be right here waiting patiently for your return.
 
Hugs and kisses from New York, Sephie & John

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 9/10/2010 3:06 PM (GMT -6)   
Sonny I have been so excited for the 2 of you sence the news this morning. You have made my weekend with this wonderful news.

Give my love to Lynn,

See you in 2 wks.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 9/10/2010 3:53 PM (GMT -6)   
Two words for you Sonny, Hoo rah!
Michael

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 9/10/2010 4:53 PM (GMT -6)   
Sonny and Lynn
WOW! - very pleased with your discussion with the doc and the outcome - I guess that blue bird of happiness snuck in there again for you two.

Your posting is a great reminder to all of us that we are all different and cannot just be lumped into nomograms (whatever) and predicted outcomes.

One of my clients has prostate cancer -stage 3 - gleason 7 - had surgery last year and doing fine ... his partner has a PSA of 25 - no enlarged prostate nor prostatitis, and all MRI and scans and biopsies over the last five years show nothing - all negative - so, that just happens to have that number for his PSa... go figure...

Here's to a safe wonderful trip - voyage - escape - adventure - bonus - (fill in the blank )

hugs
BRONSON
Age: 54 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: Sept 23, 2010 -TBA

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 9/10/2010 5:21 PM (GMT -6)   
Sonny,
Have a great trip. Put PC on the back burner and enjoy your travel and your life. Good luck brother.

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/10/2010 5:32 PM (GMT -6)   
Thank you all my friends.

There is a little follow up (feel good) info from my meeting with the doc this morning.

You may recall a thread I started about a test named DNA Ploidy. This test has been shown to be a valuable tool in predicting the relative success in using HT. I had asked my doc to have this test done before our meeting. I had my biopsy block sent to them and they ordered the test. It was supposed to take about 2 weeks and because of that my meeting with the onco had been put back 3 weeks.

In my joyful glee of this morning's meeting I forgot to ask about the test results. Then I began to wonder whether the results had anything to do with my doc NOT recommending HT at this time.

So I called his office and spoke with the nurse and explained that we had forgotten to discuss the results. I got a call a little later when she told me that the test results had not come back yet and they would track them down on Monday.

To me this is good news. My meeting with my doc this morning was absolutely genuine, authentic and based up his knowledge and philosophy of dealing with each individual and their specific cancer.

If my results had shown that my cancer is of the strain that shows a real reluctance to be successfully treated with HT, I might have doubted where he was coming from. I have no doubts now. I have an even greater faith in my onco and look to a relationship with him for many YEARS to come.

Just thought you guys might appreciate this info,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 9/10/2010 6:38 PM (GMT -6)   
And take the mans advise, GET SOME EXERCISE!! It's VERY important! EVERYTHING works better!
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G6,7, 9
RRP performed Sept 3 2010

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 9/10/2010 6:53 PM (GMT -6)   
Great post. I am happy your doctor had time to spend with you and answer your questions. Keep us posted but do go forget about this cancer thing for a while.
 
Age 48 at diagnosis
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/10/2010 6:59 PM (GMT -6)   
Sonny, still got your back on all this. Enjoyed our talks earlier in the day. Sounds like this doc has his head on straight, and is thinking of your best interest. Despite what some hint at, there are good, dedicated, patient-first doctors out there.

You should see if you can access a good oncology rehab program when you get back after the holidays. When I did that almost 11 years ago with my other cancers, it really helped. As soon as I recover enough from this next major surgery, I will be entering the program here in G-ville. The same person that headed it 11 years ago still heads it. She was wonderful. It also gave me free use of a good oncology dietician among other things, and each persons program was custom fit for their circumstances.

I strongly feel, that you have, and are still doing what is right for you. THat is extremely important.

My love to you and Lynn, you have been good to me, and I sincerely appreciate any of your efforts. Look forward to seeing you again soon, the wife and I are equally excited as you head north bound.


David in SC
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 marg
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 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

spottydog10
Regular Member


Date Joined Dec 2009
Total Posts : 348
   Posted 9/10/2010 8:38 PM (GMT -6)   
Way to go Sonny.
We all need a break sometimes and you certainly deserve one.
Cheers
Mike

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 9/11/2010 9:30 PM (GMT -6)   
Hi Sonny,
 
With the kind of medical personel you have behind you and with your admirable attitude, I have no doubt that you will be with us for many years to come. Hope you and Lynn will enjoy your little holiday and I'm wishing you both the very best for 2011 and beyond.
All the best to you.
 
Mag

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 9/12/2010 12:23 PM (GMT -6)   
 
Sonny,
 
Great news, I was also relieved to hear your doctor's opinion on HT.  My Oncologist also feels the same way and treats each patient as an individual.  My PSA is now 2.4 but with nothing showing on any scans and since, I am feeling good he also says not necessary to panic and start HT, we will continue to watch.
 
Have a great trip, I am also thinking about taking a break from all the PSA testing, my next appointment is end of October then plan to take the holidays off.  You gave me a big lift today with your news.
 
Have fun, my best to you and Lynn.
 
Jerry1

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/12/2010 9:35 PM (GMT -6)   
Sonny, consider yourself hugged, and Lynn too, big time.

I don't suppose you're heading into Canada on this trip? No? Well, as much as I'd love to see you and Lynn rolling up in that rig of yours, fact is while you might not need snow tires quite yet, the weather from here on can be iffy.

Taking a break from all things PCa is good --- but, if you get the itch, please just check in, say hello, and pass on through.

Good on you,

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
  

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/13/2010 2:15 PM (GMT -6)   
Just wanted to pop in and thank you guys that have posted since my last post. Didn't want you to think I hadn't been checking and that I don't appreciate your continued support.

Been busy the last few days getting ready for the Great Northeast Excursion. In less than 11 days I will be at Worriedguy's front door saying hello. Lynn and I are really looking forward to meeting some more HW brothers in person.

Hope all of you are doing great. The Bonus Days are getting brighter and brighter. It's amazing what happens to you when your doctor tells you not to worry about PCa for 4 months. This is something I have not experienced since my surgery last September 17th. How about that, I have a milestone coming up in 4 days. Last year I would have been hoping for a 1 year anniversary of membership in the Zero Club. But I guess I will have to settle for an anniversary of still looking at the grass from the green side instead of the roots. Works for me!

Til later,

Sonny

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/13/2010 4:03 PM (GMT -6)   
SC is waiting for you, brother
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 marg
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 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 9/13/2010 8:19 PM (GMT -6)   
Wonderful news, Sonny.  I'm glad you get to take a long, well-deserved break.  Enjoy the GFMPH weekend.  I would love to attend, but have the business to run and don't quite have the confidence to leave it to the underlings yet.  Maybe next year.
 
All the best,
Bob
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