“Well, at least it’s a good cancer”

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Paella
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Date Joined May 2010
Total Posts : 52
   Posted 5/20/2010 11:23 AM (GMT -6)   

As Mac and I take our first steps on this new and totally scary journey, it helps to try to remember that this is both the beginning of a battle and that it is also “just life”. 

 

http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/

 

Does a life-threatening illness bring clarity?  Truthfully, we’d much prefer to skip finding out.  But if we must, I think this Dana Jennings fella’ may help us to eventually be able to express the inexpressible.    

 

Best - Paella

 

 

Mac:

Diagnosed May 3, 2010 with stage TC1

Currently meeting with surgeons of various disciplines at USC, UCLA & City of Hope

May’s goal:  find the most highly-regarded and experienced cutter

Favorite surgeon quote of week 1: “I’m at the top of my game”

Favorite surgeon quote of week 2: “very slim chance of lymph node involvement”

Biggest riddle of the week, “does great robotic trump great open?”

 

Mac’s stats:

Age 65 - 5'11"

Weight 208 BMI 29.1

Overall Health Condition: Good to excellent. 

PSA: 1.0 in November 2001…slowly but consistently rising to 4.4 in Feb 2010
16-
needle Biopsy 4/19/10: Gleason 3 + 4 with 6 positive cores; 1@ 35%   1@ 25%   2@ 15%   1@ 5%   1@<5%
Both lobes involved (right lobe with 1@5% and 1@<5%)
Left Lateral & Left Apex involvement
No Base involvement

 


logoslidat
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Date Joined Sep 2009
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   Posted 5/20/2010 12:29 PM (GMT -6)   
#2 quote is actually quite accurate, #3, my opinion open is better, especially with a surgeon who is at the top of their game. In monday morning, out wed afternoon, better cancer control, but with your low numbers, it may be a moot pt, it really is the surgeon. To me the most critical skill, after cancer control is reconnecting the uretha. Skill here is the difference, arguably, between pads and no pads. I.d say good luck, but its skill from here. The luck comes in, it seems, in the pathology of the specific person
age 66 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of W Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " read it in Bartlet's book of quotation years ago stuck with me, can't remember who said it.


Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/20/2010 12:39 PM (GMT -6)   
Ah, how we hope to hear:
"bundle spared"
"continent from the jump"
"prostate confined"

Sooo glad for you!

Paella

Ed C. (Old67)
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Date Joined Jan 2009
Total Posts : 2460
   Posted 5/20/2010 1:09 PM (GMT -6)   
My vote goes for the robot. I was in on Monday, out on Tuesday and walking 1 mile on Thursday. Recovery time was totally uneventful. However, my nerve bundles had to be removed due to my aggressive cancer and the desire to get negative margins. If you decide to go with the Da Vinci, make sure you get someone who has done more than 500 of them. My surgeon has done over 1500 by last count.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/20/2010 2:19 PM (GMT -6)   
Hello, ED C. et al -

Does anyone know of any good sites to find statistics on specific surgeons? All the Doctor Rating Sites I've been to pretty much suck. How does one find impartial data, rankings, etc or is it even possible?

Our Robotic option would be with a surgeon named Tim Wilson, at the City of Hope in the Los Angeles area . I'm told he's done over 1,000 but we don't meet w/him until 5/25/10.

Our open option is with Mark Litwin at UCLA Med. Center. Mark was great and is at the top of his game (his words - but we totally believe him)...Very confident. He says 1 night in the hospital and 1 week on the cath but that we'll have ED and Incontinence (incontinence likely to be short-lived). He does his own follow up (prefers to be the one to remove the cath, for instance) which my husband thinks bodes well and I pretty much think is a moot point.

These two guys were recommended by other physicians known by us or by knowledgable friends.

Thanks - Paella

142
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Date Joined Jan 2010
Total Posts : 7078
   Posted 5/20/2010 2:24 PM (GMT -6)   
My uro/surgeon does his own followup, and if appointments need to get moved, he arranges for it.

There are a lot of very good surgeons I've read of on the different boards who see you at recovery, and from then on you are with an associate / assistant, so it is certainly something to check up on. Don't assume in this area.

Sephie
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Date Joined Jun 2008
Total Posts : 1804
   Posted 5/20/2010 4:07 PM (GMT -6)   
Paella, I like your style!

open vs. robotic - hmmm, you'll get a fair number of opinions here with pros and cons for both. I don't necessarily agree that open gives better cancer control - have known too many who had open with no adverse pathology findings and who faced recurrence. The same is true with robotic though so I don't think the method is nearly as important as the surgeon. I vote for choosing the doctor and letting them decide the surgical method that they believe would work best.

As to follow-up, our surgeon does all the follow-up including calling us with John's PSA results usually within 48 hours of the blood test. He has spent time on the phone with me along, and he has spent time on the phone with both of us. Now, we are fortunate in that the surgeon is 15 minutes from our home - if we had chosen a surgeon in New York City (we live about 50 miles outside the City), I doubt we'd be using them for routine follow-up.

I have a feeling that you and Mac are going to get through just fine - you have a great attitude and are asking the right questions now when it counts. Keep up the good work!
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Timm
Regular Member


Date Joined Feb 2010
Total Posts : 83
   Posted 5/20/2010 4:39 PM (GMT -6)   
Another question,you might want to ask is what generation, Da Vinci, robot does your Doc. use. I believe Intuitive is on there third.
 
                                                                                                                                                         Good luck Tim

t-dog
Regular Member


Date Joined Dec 2009
Total Posts : 154
   Posted 5/20/2010 4:55 PM (GMT -6)   
If other surgeons recommend a certain guy i think that is a good indication you`re on the right track. We were told the guy i used was the surgeon that other surgeons would go to. I dont think many doctors would risk their own reputation by recommending a lesser skilled guy. Asa others have said all my follow up is done by the same guy and a call to his nurse always gets me a answer or she`ll have him call me back. No PA`s or assistants for him.
Dx at 50 in 12/09 Merry Christmas its cancer....
3 of 12 positive, right side only, psa at dx 2.6 free%14
gleason 3+3=6
routine physical, no symptoms
Da Vinci performed Feb 2k10 by Dr Marc Milsten [hes got mad skills]
99% continent from cath out, mr happy fully functional at 2 weeks out!
path showed same gleeson with no other blips other than one slight margin, organ confined 20% right, 5%left, 34grams
Hernia repair Mar 2k10, hernia was side effect of the surgery
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/20/2010 5:53 PM (GMT -6)   
paella,

the "open" surgeon telling you just one day in the hospital and just one week on a catheter? sounds like a lot of bragging going on to me. after my open, i was in for 4 full days, and needed all the time, and a week on a cath is on the short side regardless of which method of surgery is chosen, as the delicate bladder neck to urethra connection often needs additional time to heal, nothing you would want to rush. the "one day" in the hospital sounds misleading to me, but hey, perhaps this surgeon is some kind of miracle worker.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


James C.
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Date Joined Aug 2007
Total Posts : 4463
   Posted 5/21/2010 5:24 PM (GMT -6)   
I was just one day in the hospital with my open. It's standard in my doctors care group here.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 5/21/2010 5:46 PM (GMT -6)   
Out of surgery at noon on Monday and home by 6:00 PM on Tuesday with my open procedure. Cath' however stayed in for 2 weeks. Good thing I wanted to get the heck out of there, my ins only covered one day.
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04
05-03-10 1 week without pads


James C.
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Date Joined Aug 2007
Total Posts : 4463
   Posted 5/21/2010 6:50 PM (GMT -6)   
Yeah, I forgot to say that my insurance only covered one day, unless there were documented complications. Catheter in 10 days. Also standard here.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


142
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Date Joined Jan 2010
Total Posts : 7078
   Posted 5/21/2010 9:45 PM (GMT -6)   
I had complications - could not stand up without puking, so I was in for a total 4 days with DaVinci. I did not have any pre-established expectations, so stayed until I felt I could leave.

Kmac
Regular Member


Date Joined Mar 2010
Total Posts : 58
   Posted 5/22/2010 6:35 AM (GMT -6)   
That is an interesting blog. I do not have cancer but am one of the bystanders who has to find words. I think everyone is entitled to have their own opinions on 'cancer language'. For me and my family the line 'at least it is a good cancer' has been a comfort. I want positive lines even if they are a cliche.
I agree that it is 'just life' and my dad sees it as another page in the book which has to be dealt with.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 5/22/2010 6:51 AM (GMT -6)   
Paella, one day in the hospital for open surgery seems too short - most men I've know who had open were in 3 to 4 days. While robotic surgeons tout the 24 hour hospitalization, my husband wasn't discharged for 36 hours and he had absolutely no complications. The insurance company approved 3 days in hospital based on the recommendation of the surgeon so there were no issues there. Guess each situation is different.

As to the use of the words "at least it's a good cancer" - don't get me started on that one! I absolutely agree that there are some cancers that are far more deadly than prostate cancer and I am grateful that John wasn't diagnosed with one of those. But, even though we're two years post op and he continues to do wonderfully, I still worry about every PSA test and probably will for a long time.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/22/2010 5:52 PM (GMT -6)   
sephie: know what you mean. in reality, no cancer is good cancer in any sense of the word. just different degrees from different types.

my insurance, blue cross at the time, pre-approved 4 days for the open. was actually in 4 1/2 days, dr. almost approved a 5th day, but the hospital finance guy got a bit antsy about it, so i went home.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


English Alf
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Date Joined Oct 2009
Total Posts : 2217
   Posted 5/23/2010 12:13 PM (GMT -6)   
No cancer is good cancer, but PCa is better than most. To give an example of the extreme end of bad cancer:
My mum's neighbour went to see her doc with back ache, her referred to specialist for scan, she was diagnosed with lung cancer and dead within a fortnight.
Being able tio take your time, even though it feels like a mad rush is a big difference.

I went into theatre for the robot at 11.30 am and at about 10.am the next morning I was told I could go home that afternoon/evening, which I did. Catheter out after a week.

A friend's dad had open as was in hospital for a week.

I also felt sick dizzy when i tried to gwet up, but they did not keep me in longer they just gave me some medication to comp[-at the nausea.

And for the record it was finding Dana's story at the NYT that was how I found HW!


Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 818
   Posted 5/23/2010 10:54 PM (GMT -6)   
Paella,

I had Tim Wilson and I thought he and City of Hope were really great. Easy to get lost there, but I think that's true of a lot of hospitals. Don't know anything about UCLA.

Here's another thought: If you're feeling that both doctors seem equally good, then you may take into consideration other factors. Such as:
-Is one facility a lot closer to home than the other? Then followup will be easier. (What luck!)
-How about the nursing care? I thought the City of Hope nursing care was outstanding, really helped in recovery.

Good luck,

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)
4/23/09, 07/30/09, Oct 2009, Nov 09, Feb 10 still undetectable (<0.01)!

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