Got the word from our urologist this morning...

New Topic Post Reply Printable Version
27 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/23/2009 1:38 PM (GMT -6)   
husband's PSA is now 0.3 (went up .2 in 1 month).  So, next Friday, we meet with a radiation oncologist to talk salvage therapy.
 
According to the urologist:
 
  1. PSA is still low but "something is definitely going on"...the sooner we move, the better
  2. PSA will be retested in 1 month.  If it's still 0.3 or higher, we push the button (I do not plan on waiting 1 more month to get things started)
  3. Urologist told husband that he half expected this to happen at some point due to EPE on path report
  4. Re-reviewed surgical path report and said that he (the doctor) is not worried about the outcome.  If PSA had been 0.3 three months after surgery, he'd be worried.  Frankly, I was shocked that the PSA number jumped so much in one month but apparently that's the way it goes sometimes.

Obviously, this latest news doesn't make us happy but, I must admit, that in my heart I knew this would be the case eventually.  Part of me is relieved that now know what's going on and have a plan of action ... I think I would have gone bonkers if we had to do monthly PSA tests and "watch and wait" to see if there's anything definitive.  At least we have something we can deal with. 

 

Will keep everyone posted once we meet with rad onc next Friday (October 2). 


Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA of 0.0 every 3 months since surgery. In August 2009, PSA reading of 0.1 - urologist will retest in 4 weeks. Hoping this is a blip. Incontinence good to excellent but still having issues with leakage. ED is a work in progress (with the help of Viagra).


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/23/2009 1:47 PM (GMT -6)   
Sephie,
I know you guys will make the right moves and get after it. It is sad to say, but after nearly three years here, I know the T3 folks will likely deal with this again and again. I am still undetectable, but it is likely the HT that has kept me there. Still hope is a beautiful thing. And we all have that...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 9/23/2009 1:55 PM (GMT -6)   
Sephie,
Being a T3 guy, I have been preparing my self for a similar outcome if and when it comes. I wish your husband the best with his next step. Will he be doing HT as well as the radiation?
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.
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 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/23/2009 2:50 PM (GMT -6)   
Thanks for sharing with us. All of us T3 guys are waiting for the same report at some time.

I guess the good news is that you guys are well informed and on top of it. Hopefully those little buggers are still in the prostate bed, and radiation will zap them.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/23/2009 2:56 PM (GMT -6)   
Dear Sephie, so sorry to hear the news, had a little feeling it might be heading in that direction. Sure seems to be more of us on the reaccurance path. Good news, is that your husband's movement upward took some time after his surgery to start going up, instead of right away.

I agree with you fully, after me meeting with 3 radiation oncologists so far, and having picked one, that waiting now to watch it rise from .3 makes no sense. So it sounds like you have accepted the reality of your husbands reaccurance and have a game plan developing. I am slight ahead of him in executing the plan, so I will keep you posted.

As usual, my very best to you and your dear husband.

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%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/23/2009 3:34 PM (GMT -6)   
You guys are just the best!

David, I know you are a few steps ahead of us in the next phase of this journey so I'll be very anxious to know how things go with you. I'm glad you concur that waiting to see if the PSA goes up or stays at 0.3 seems moot - and a waste of time in my humble opinion. But, looks like both you and John (my husband) are nipping this little bugger in the bud early on in the game. Accepting the reality of recurrence is hard but I think I'm doing a good job of it. Not knowing what, if anything, was going on was harder than knowing. I too knew from the day I heard that his PSA went "up" to 0.1 that we were facing a recurrence. Whether it happened now or months (or even years) down the road, I figured it was just a matter of time. I remember about 1 month after my husband's surgery, I was visiting with my best friend and as I was talking about the surgery and what the path report showed, I started to cry. My friend asked me "what's wrong". I said "I don't think this thing is done with us yet."

Goodlife: Urologist feels the "buggers" are still in the prostate bed. I assume that the rad onc will do further tests - CT or MRI perhaps - to see if we can spot something. Don't know what the protocol will be but will keep everyone posted.

Ed C: don't know if HT will be done but I kind of doubt it.

Tony: The thing that makes me saddest of all was to come on this board and tell all you wonderful men the news. I know that you many of you are worrying about the possibility of this happening to yourself - that breaks my heart.

To all: I am not overly worried - anxious more than worried. Once we meet the rad onc next Friday, and have more information and a possible game plan, I will be committed to getting my husband through this safe and sound. Those little buggers don't stand a chance!!
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA results:  April 2008 0.1; May 2008 0.1; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3.  Appointment with radiation oncologist on October 2.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/23/2009 4:45 PM (GMT -6)   
Sephie, since I had a terrible track record pre-surgery of psa velocity, and since I had reoccurance within six month of surgery, all 3 of the radiation oncologists said that it would be dangerous (that was the word they used) for me to sit around and wait and watch it go up.

You and John (glad to know his name) make a good team, and I am sure you can work through this next battle. Took me awhile to resign myself to the salvage thing, but John and I are almost the say age, and if he's like me, not quite ready for the "check out line". lol.

I will continue with my annoying detailed posts on this next stage of my journey, and it will help give you an idea of what may lie ahead for your husband.

My first real zap of IMRT is still scheduled for 1130 on Monday, October 5th. Still not sure of the total gys. to be used or the number of treatments, my dr. is still working up the procedure from all the CAT scans they took on Monday. And I got 7 black tatoo marks in my nether region, about the size/shape of freckles. This is on a guy that is virtulaly free of any moles and almost no natural freckles. lol.

Keep the spirit going, Sephie, your attitude has helped me out more than once over the months, trust me.

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%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/23/2009 5:16 PM (GMT -6)   
David, you are dear and your kind words touched me deeply.

And what's this talk about "checking out" - you and John ain't going anywhere anytime soon ... except that we have a cruise to Bermuda planned for John's 60th next June so I guess we'll be "checked out" for a week next year. Other than that, we're here to stay and plan on keeping it that way.

Urologist mentioned that John will probably get about 6500 rads (I think that's 65 gys or whatever the letters are). I'm sure that rad onc will tell us alot more and will order the necessary tests to use for mapping and such.

Have a great evening.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Appointment with radiation oncologist on October 2.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/23/2009 5:37 PM (GMT -6)   
Sephie, that was the step I went through Monday, was all the mapping work to determine the pathing and routes for the machine, and how much radiation at that spot and this spot. The last we spoke, she was thinking in terms of 70-72 gys total, probably spread out over 35 days, or 7 weeks. If there are no delays or problems, should be done a day or two before Thanksgiving.

Please stay in touch. My wife and I were suppose to go to San Francisco this summer, for the honeymoon we never had back in 1974. But couldn't do it for a number of reasons. Going to try next year. She has never been west of Texas in her life. So I want to be well enough and back working again so we can pull it off.

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%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 784
   Posted 9/23/2009 6:32 PM (GMT -6)   
Hi Sephie, hope all goes well for the treatment, T3 is a worry, keep fighting!!

Best regards Mal.
age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7 right side tumour adenocarcinoma stage T2a
RP on 30th July,

Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck,are free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.

Post op PSA 0.5 26th Sept.
PSA 23rd Oct.0.5 seeing Radiation Onocologist 31st Oct.
Started radiation treatment on 5th Dec, to continue until 24 Jan. 08.
Finished treatment, next PSA on 30th April.
PSA 30th April 0.4
PSA 30th July 0.5
PSA 27th Oct 0.4 (I am now 68)
PSA 11th March 09 0.5
PSA 3rd Augiust 09 0.6


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 9/24/2009 8:09 AM (GMT -6)   
Sephie,
I had an RRP around the same time as your husband. I had a positive margin and all my tests were okay until a little over a year. Then it jumped. I went through 37 IMRT treatments and will be retested in November. It was a piece of cake for me. The side effects were treatable and almost gone now. I wouldn't wait too long. The success rate is a lot better with the lower numbers. Thank God it is another opportunity for a cure for the surgery people. Good luck to you and God bless.
Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C
4/16/08- Started Bi-mix injections 
5/15/08- 1st Post-Op PSA 0.07 Undetectable
8/11/08 -2nd Post-OP PSA 0.02 Undetectable
8/15/08- No more pads as of today  Whoopee!!!
11/13/08- 3rd post-op PSA 0.02 Undetectable
03/02/09- 1 yr. post-op PSA .09 Undetectable
05/13/09   PSA .18 (ouch)
Started IMRT June 13, 2009
Completed 37 treatments July 31, 2009 (66.6gy)


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 9/24/2009 1:50 PM (GMT -6)   
Hi Sephie & Husband,
 
about a year ago, I went thru the same situation that you find yourself in today ( see signature). It is my understanding that RT is most effective if started as soon as possible after a recurrence is suspected. Even though your PSA is still quite low, I would not delay taking the next step. The side effects from RT were minimal for me and I seam to be doing well thus far. Hope things will go smoothly for you as well.
Best wishes to you in your next step in your journey.
 
Magaboo



Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09, = 0.05; July 09, <0.04


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 9/24/2009 3:02 PM (GMT -6)   
Hi Sephie and John.  We trust the follow up treatments will be just what is needed to finally zap this thing once and for all.  Sephie, thanks for all you do to support John - I know he appreciates it.  Couldn't do without my wife - like you do for your John she takes very good care of me.  David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 9/24/2009 3:37 PM (GMT -6)   
Sephie
Don't, repeat DO NOT feel bad about those of us with questionable path and your husband's experience making us feel worse. I know that I need three years of zeros before the odds even start to shift in my favor. Your posts give me courage to face whatever lies ahead and to know that I am not alone. Your courage and your husband's are an inspiration. Thank you and God bless you and your husband.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/24/2009 6:00 PM (GMT -6)   
Geezer, thank you for your kind words. May you have 3 years - plus as many more as you need - of zeros! I'm happy if my posts give courage to those who need it.

David (CPA), my husband is everything to me - my best bud, and the person I trust the most in the world. I wouldn't think of not being there for him - I know he would do the same for me (and then some).

Magaboo, I have no intentions of waiting.

I'm (gently) trying to convince my husband that waiting for a 3rd PSA could make a difference in how successful the SRT is for him, especially if it jumps another .2 points (that would put him at 0.5). I want to strike early and am hoping that both of the radiation oncologists we have appointments with next week will recommend RT now rather than wait for the 3rd PSA test result. One of the problems is that the urologist (whom John trusts completely) is recommending waiting for the 3rd test - I suspect that urologists do not fully understand the importance of starting SRT when the numbers are low. I've explained to John that HE is in charge of the situation...certainly listen to the doctors and consider their opinion but we do not have to wait for the doctor to give us the go-ahead. I also tried gently to explain that this is a second chance at a cure and we have to take every advantage if we're going to lick this thing.

I have my work cut out for me convincing my husband that timing is critical. Last night he said that if the next PSA test came back at 0.3 (no change), then maybe he should wait another month and retest - oh no you won't (I said that in my head)!
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Appointment with radiation oncologist on October 2.


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 9/24/2009 11:39 PM (GMT -6)   
Sephie Maybe if the next two radiation oncologists recommend that you start straight away you could asked them to talk to the doctor that your husband trust and explain the situation to him which might put him on your side then he can convince your husband that it is correct to have the salvage therapy straight away
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms
Gleason upgraded to 3+3 Tumour not closeto prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
 


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/25/2009 6:19 AM (GMT -6)   
Colin, I expect that if one or both of the rad oncs suggest starting SRT now rather than waiting for another PSA test, our urologist will defer to them as the experts. The urologist is not dead set against it but did suggest waiting for the 3rd PSA test. As John's current PSA is "on the fence" and I'm concerned that waiting another month might bring him to the threshold of 0.5, I tend to think strike now. My husband did say that if the rad onc says start treatment now, he will.

A bit anxious at this end but, the way I figure it, it would be tough to appreciate the blessings in our lives if we didn't have the crap to put it all in perspective.

To all: I'm making a list of questions to ask the rad oncs next week. So far this is what I have are: equipment used, dosage, side effects (short- and long-term), timing (start now? wait for next PSA?). I also plan on asking each doctor how may PCa patients they've treated and what their success rates have been so far. Any other questions I should be asking?


Be well, my friends.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Appointment with radiation oncologist on October 2.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/25/2009 7:30 AM (GMT -6)   
Sephie, I can relate directly.

My uro/surgeon was inclined for me to wait another 3 to 6 months even after a 3rd rise in my post surgery psa rises, though the rises were small, they were upward and there was quick doubling time. He did, how say, if I wasn't comfortable with that plan, he could get me hooked up with the radiation people. I "interviewed" 3 of them. The first one treated me 10 years ago, but was moving out of my direct area and the logistics to see him would suck. The 2nd one, may have been a great dr., very experienced, but was such an egotist, so full of himself and acted like a game show host, never would have happened for me. 3rd, the one I chose, is a woman doctor, very experienced, and I have the testimony now of several of her patients, and these are people I have known for years and trust.

Despite my uro wanting to wait and see, all 3 of the rad. doctors said the same thing, that waiting (in view of my pre-surgery psa velocity and now post surgery psa velocity) was dangerous. All 3 thought it would be risky. They all agreed that the most effective use of salvage radiation was at the .5 limit. In my case, with the velocity factor, it would be too easy to double again and shoot over that mark.

I am confident, dear Sephie, that any rad. oncologist will be talking along those lines with your husbands case and numbers. Just my opinion, others can bite my head off, but once you have re-occurance proven post surgery, waiting for anything other than a legitimate medical condition or situation is just plain nuts. Every day, week, or month a person wastes fooling around diminishes their chance for the treatment to have any hope. Did I make that up, no, my current woman doctor pretty well said those very words.

My best to you dear folks.

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%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, mapping on 9/21/9, 9/24 - mtg & procedure? with uro/surg, IMRT starts 10/5/9

Post Edited (Purgatory) : 9/25/2009 9:18:46 AM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/25/2009 7:56 AM (GMT -6)   
Dearest David, what would I do without you!

I made a few phone calls this morning: The first to Sloan Kettering. The lady I spoke with was an absolute doll. Unfortunately, we won't be able to go there as they do not take our insurance and the cost would be $1500 to $2000 for a consultation and review of the path slides. However, she was very quick to recommend that I contact Columbia Presbyterian/NYU as they too have a comprehensive cancer center and might be able to help with our insurance issue.

The patient referral contact I spoke with - Joyce - was one of the nicest people. She was able to do a search by insurance company and found one medical oncologist and one radiation oncologist at the main "campus" in Manhattan who take my insurance! She gave me names, phone numbers, areas of expertise, etc.

I called John at work and told him that we can get a 3rd opinion from the 6th ranked hospital in the United States. He is inclined to see what the 2 radiation oncs we'll meet with next week have to say and will go to Columbia if a 3rd opinion is needed (e.g., if both rad oncs don't agree that the time for SRT is now).

I offered to make an appointment at Columbia for the week after next - if we don't need the appointment I can cancel it. He will think about it this weekend and will decide.

David, I'm a bit worried because I don't think John fully understands that his situation calls for quick action. My dear husband is not good at making snap decisions, and is a bit of a procrastinator. In this case, not the best way to be. Throughout this process, I have been the one to do the research and to share information with him along the way.

Now I have to go to work...will be a few minutes late but what the heck! Have a great day - I'll be checking this board during the day.

Lots of hugs and kisses from Sephie & John
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Appointment with radiation oncologist on October 2.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/25/2009 9:31 AM (GMT -6)   
Dear Sephie, there's something I like about your style, you are a "go-getter". You made a lot of progress this morning, and sounds like you got some wonderful help and leads. The best compromise I see in your thinking, is your husband sees the first 2 rad. oncl., I doubt he will get two entirely different opinions, but if he does, and/or he doesn't feel like either of them is a good fit, then you have your higher level lead. If it were me, in those exact circumstances (though I guess that would make you a bigamsit, lol), I would take the 3rd opinion and then make my final decision on that.

Some on our board don't understand that we all don't have the resources to do and check everything the "right way", so we work with what we have, learn to be creative. And unless you are secretly a wealthy woman, you are pretty limited to the bounds of your health insurance like most of us are. I generally get treated well with medical stuff, but I am no fool, we have really good insurance right now. If I didn't have it, I would feel hopeless.

Everyday that has passed since my surgery, my remaining cancer, however small it is, is growing, multiplying, etc. So there is a gamble in any waiting at this point, if I were sitting with your husband, that would be my angle. Now my own uro/surgeon is real antsy about getting me started on the salvage.

Wish I could sit and talk with him one to one, not to scare him, but to help him through this next transistion point.

My best to you good people.

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%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, mapping on 9/21/9, 9/24 - mtg & procedure? with uro/surg, IMRT starts 10/5/9


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/25/2009 9:46 AM (GMT -6)   
David, I would actually love for you to speak with my husband.  Perhaps we can set something up over the next week or so, especially after he sees the rad oncs.
 
I know how my husband's mind works and I suspect that he is well aware of the importance in the next step...he's not too good at verbalizing (whereas you can't shut me up sometimes!). 
 
Like you, I expect both rad oncs next week to tell us "pull the trigger" - at least I'm praying that's what they tell us.  Of course, should the PSA come in below 0.3 next time and we've already begun SRT, my husband will likely have my head!
 
Take care.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Appointment with radiation oncologist on October 2.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/25/2009 10:06 AM (GMT -6)   
Sephie,

I leave you a standing offer. If you think it would help, I can e-mail you my private number, and if you husband would be willing to speak to a stranger (don't even know if he reads our posts first hand, or gets them from you), I think I could encourage him without any loss of pride on his part or anything judgemental on my part. In a manner of speaking we are in this fight together.

After meeting with 3 radiation oncologists, the only real difference ,was one of the 3 wanted to include HT with the RT, but when pushed, he admitted that he didn't really know if I needed it, and didn't know if it would really help, so that didn't sit well with me. The other two said strongly that it would be overkill at this point, and to save the HT for later, if needed. This opinion was also mirrowed by my uro/surgeon and my GP of 13 years. So I am pretty comfortable bypassing HT for now.

I think when your husband gets some strong reccomendations from the first 2, his mind will start to easily understand the potential seriousness of his situation, that is my hope. But my offer stands, and I always keep my word.

Peace be with you,

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%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, mapping on 9/21/9, 9/24 - mtg & procedure? with uro/surg, IMRT starts 10/5/9


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 285
   Posted 9/25/2009 11:30 AM (GMT -6)   
Hi Sephie,

Thank you for posting and others for adding information. My situation is similar to your husband's in that our psa and velocity seem to be comparable. This morning I met with my urologist regarding my latest reading and bone scan which I had moved up by 3 weeks from the prior schedule. The bone scan was clear and the psa remains at .2 ng which means there hasn't been a rise since the .2 reading in the beginning of August. At first he was going to have me retest in 3 months but after some discussion we decided to keep me on a "short leash" and retest in 6 weeks. He wasn't going to be surprised if it went up and would refer me to a radiation specialist once it did.

It was comforting to me that he added that he felt that any residual cancer would be addressed with the radiation while the psa was at this level. I intend to push forward as soon as my reading increases again.

Our best to everyone,
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 pathology clear margins, confined to prostate, absent extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4 and location in right mid-gland.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
Bone scan and next psa 10/09, lumbar spine backaches hopefully from more activity as recovering from ankle break.


maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 784
   Posted 9/25/2009 7:30 PM (GMT -6)   
Hi Sephie, just my 2 cents worth, when my PSA was on the rise and it got to 5.0, my GP (at the time) said "lets wait 6 months and see what it is then" .

Because I was doing a lot of bike riding at the time, he said my prostate was affected by that, ok, I waited, after 6 months my PSA was 5.8 so he said I should see a Urologist, ok more waiting, the weeks went by, then I got in to see him, he said that I needed a biopsy, which l had after waiting 3 weeks, then more time until I saw him and the cancer was confirmed.

After the Op, my PSA came back at 0.5 so I had salvage radiation, after which my PSA came back at 0.5, it is now 0.6, and The Oncologist said that it looks like the cells escaped the prostate, BEFORE I had the operation.

My point is that if I had not waited all that time, maybe the cancer would have been contained in the capsule, waiting has sure changed things for me, and I hope your husband can be convinced to take action while the cells that are sending the signal are hopefully still in the prostate bed.

Best regards and good luck with the treatment.

Mal.
age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7 right side tumour adenocarcinoma stage T2a
RP on 30th July,

Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck,are free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.

Post op PSA 0.5 26th Sept.
PSA 23rd Oct.0.5 seeing Radiation Onocologist 31st Oct.
Started radiation treatment on 5th Dec, to continue until 24 Jan. 08.
Finished treatment, next PSA on 30th April.
PSA 30th April 0.4
PSA 30th July 0.5
PSA 27th Oct 0.4 (I am now 68)
PSA 11th March 09 0.5
PSA 3rd Augiust 09 0.6


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/25/2009 7:39 PM (GMT -6)   
Very good advice there, Mal, there's a lesson for all of us in those words.
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%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, mapping on 9/21/9, 9/24 - mtg & procedure? with uro/surg, IMRT starts 10/5/9

New Topic Post Reply Printable Version
27 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, June 19, 2018 12:59 AM (GMT -6)
There are a total of 2,973,125 posts in 326,082 threads.
View Active Threads


Who's Online
This forum has 160914 registered members. Please welcome our newest member, shaneshane.
256 Guest(s), 5 Registered Member(s) are currently online.  Details
Dahlias, Spring, shaneshane, onceitfreeze66, Laura25731