Meeting with Oncologist and laterest PSA

 

Jerry,

Jerry,

While your news was stern and serious, I am glad you were sitting in front of a doctor that wasn't blowing smoke out of your back end. I know that is a lot of news to take in, but at least you know what lies before you. Until one is sitting in your situation, its hard to say what one would or wouldn't do at this juncture in your PC journey. I know you will be doing a lot of talking and soul searching along the way. Whether you go to HT now or later, or not at all, I will respect your personal opinion and choice. I don't know much about HT, but from my research, the dr. is right on target, whether you use it now or later, the length of time and its effectiveness will be about the same. Like most people in your situation, one can only hope that something is being developed or has been developed awaiting approval, that can give you a lot more time.

Either way, try to enjoy each day, with those that love you, and you do the things that you love to do and can still do. The rest of it will sort itself out over time, and when/if you come up with a new plan for your journey, just let us know, and we will be there for you.

Wishing you only the best,

David in SC

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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

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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; JAN 10=<0.04

 

Way to go Jerry. I just can't get Sonny's quote out of my head. "Every day is a gift !"

Sometimes I think a heart attack would be the way to go, but we have the opportunity to love the ones we are with, and get things in pretty good order with PC.

It seems to me, from what I understand that the HT can stop the growth of the PC for some period of time by depriving it of the food it eats, testosterone. If would seem that by stopping or slowing it sooner, we can stop or slow down the spread and therefore lengthen the time that it takes to metastisize and cause problems elsewhere.

On the other hand, apparently we all respond in different ways.

Good luck on this sobering journey. Live each day to the fullest.

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Goodlife

Jerry,
Sorry to hear about your progression. Most oncologists specializing in PC would disagree with your doctor. They believe the earlier you start HT the more effective because the tumor volume is low and the PC cells have not yet developed the ability to mutate. "Beating Prostate Cancer Hormone Therapy and Diet" by Dr Charles Snuffy Myers and "A primer on Prostate Cancer" by Dr Stephen Strum are two book you should read. There are many men that have been on HT for 10 years or longer living normal lives. Ther is a percentage of PC that is androgen dependent and responds very well to HT allowing many years of "off treatment". I understand your reluctance to go on HT, but to base your decision on later is just as good as now may not be valid.
JT

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64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT

Sorry to hear that the psa didn't reverse direction. Thanks for giving us the summary of your meeting with the oncologist. Your questions are ones that I want to ask at the same crossroad but may not be able to articulate. I read that the old ideas about HT, side effects and length of effectiveness are quite different now with huge improvements. But at the moment, HT is something to address later according to your timeline.

Our best to you and support,
Jake

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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
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, radiation setup done with tats, 01/19/10 started 39 sessions 70.2gy, psa at 6th week salvage IMRT up to .4
Post SRT psa at 10 weeks (5/31/2010) down to .2

In the Walsh PC book, they make a strong point that starting HT later rather than sooner, makes the best sense, that its effectivness is about equal either sooner or later. I will see if I can cite the page number. I just read this myself only yesterday when I was re-reading a portion of the book.

David in SC

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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

 

Jerry:  I would second what John T. says, in Meyers book he talks about long term remission, starting HT and having your PSA drop to below .05 and staying there for at least 2 years I believe at that point he suggests an off cycle of HT to see what type of progression you have.  You have a much better chance of achieving those statistics starting at a lower PSA.

Jerry,r
Sorry about your latest news. It seems like you are getting contradicting information about when to start HT. Dr Walsh suggests later is better while Drs. Meyer and Strum suggest the sooner the better. What is the normal patient supposed to do? I don't know what I will do in your situation, we are close in age and at this point the quality of what I have left is probably more important the the quantity. Best of luck in whatever you decide.

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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
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

I wouldn't depend on Strum, Myers or Scholz to tell me the best way to conduct surgery for the same reason I wouldn't listen to Walsh to tell me the best methods of HT. Walsh is a brillient surgeon, but works with very few advanced PC cases where as oncologists see tens of thousands.
When it comes to advanced PC there are only a very few doctors who truely understand it and have made it their life's work. These are the ones I would listen to.

Jerry, Casodex is a mono therapy. Most oncologists use a combination therapy of ADT3 or ADT4 which is much more effective. Using Casodex only will rarely result in complete hormone blockade which is what you are looking for in any HT therapy. If you don't get complete bolckage the cells will mutate and HT will no longer be effective. Understanding how PC works at the biological level is key to treating advanced PC and most doctors just don't have this type of training.

JT

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64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT

Re: PET Scans,
Posted on the New Prostate Cancer Info Link, Dec 24th 2009.
Most PET scans are carried out using a tracer known as 18F-fluoro-2-deoxy-2-D-glucose (18F-FDG). The problem is that this tracer is not good at highlighting prostate cancer — to identify either primary prostate cancer lesions or prostate cancer that has metastasized to the bones. Because of this, also, Medicare does not yet reimburse for the use of PET scanning as a diagnostic procedure in the treatment of prostate cancer (even though Medicare did significantly expand coverage of PET scanning for cancer diagnosis in April 2009).

Now this does not mean that PET scanning has no value in the management of prostate cancer. What it does mean, however, is that patients should be extremely cautious about getting PET scans for suspected prostate cancer outside a well constructed clinical trial. And if the PET scan is part of a clinical trial, then you shouldn’t have to pay for it!

JT

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64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT

ditto on comments by JohnT and dkob. I even believe that Walsh has changed his mind on HT with SRT for high risk individuals. Although there is clearly no concensus, I believe that more docs are leaning to early HT for high high risk individuals.

Best of luck in whatever treatment you chose. BB

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Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31

Is orchiectomy just as effective as ADT3 "therapy"...?

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Age today: 68. Married, 6', 215 pounds, active, no health issues.
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 at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. A "top" radiation oncologist here in Denver, equipped with the latest IMRT/IGRT/RapidArc machine says he can do better by me..

Agree with John T - concerning hormone therapies, first off the bit about survival times as being the same and make no difference....well this data or doc thinking is based upon "averages" so individually some people live longer and some don't, some live shorter too. (Welcome to the Jungle of PCa- disease level, aggressiveness, volume, ploidy DNA and more as variables). I know of people whom have broken this bullshirt about 2-5 yrs. life span, it includes me....I should have been dead long ago based upon those experts whom say 2-5 yrs., Oh I had light duty PCa?????? NO WAY- total urinary blockage in an emergency room, bPSA 46.6 12/12 biopsies how many guys to you see with 75-95% found in all 12 of those (statistically the gland should be about 90-100 cancer logically), Gleasons scores found 7,8,9's two sets like that. Now I am at year 8.3+ right now and not yet in any serious trouble(I know that can change), all my tests show normal ranges, T-test now at 26 which you want it zero or low.

Now I did not do standard protocol that the uro-doc suggested (Lupron) for life, did (ADT3)2 yrs., then switched to alternative estrogenic drug been on that sometimes random like intermittent for about 5 yrs. Dr. Fred Lee has been on his therapy approx. 8-10 yrs. atleast, so this PCa doc wouldn't agree with the 2-5 yr. gig and probably that is why he didn't do standard sold protocol for his case, so would his peers call him crazy for doing estrogenic drug? (he didn't do Lupron or other LHRH drugs). That type of thing sure interests me and seen others do such things as more evidence.

Howard Hansen is at year 17 in his PCa battle, he now has brain mets, which the leading oncologists mentioned in their conference that this the first patient they know of whom has acquired brain mets after such a long period of time, and they seemed to conclude his success in managing his PCa for this long via alternative protocols has gotten the PCa to show up here rather than alot of his bones, or such. He is a testimony for why the 2-5 yr. thing and 'it makes no difference' should not be told as 'FACT' maybe an averages thing, not FACT. Like in other cancers some people do better, even with worse stats than someone else....alot of factors go into this. So, probably good for the patient to decide your choices or when or what....your doctor doesn't die, you do! I admire those whom quest and do whatever in trying to win the battle regardless of the odds. There are PCa warriors on Yananow whom had much lesser stats than mine (maybe even similar age group) whom died within the 2-5 yrs. thing, their are some others with stats worse than mine and still fighting or were fighting recently (not very many listed on yananow). Like John T mentioned the leading onco-docs know much more about protocols to use and try, they likely can get someone more results, nobody has been cured that I know of, but living even months, or years longer....you got ask yourself what is it worth to you. Also with these onco docs they can address quality of life along the way and help with easing pains and issues, perhaps more compassionately than some other docs. Like Dr. Strum recent put on the internet- 5-8% of docs are experts or very good, 70% are average and 20% are dangerous. So whom knows the most about PCa from all angles, surgeons, radiologists or oncologists? So who's advice would you seek for terminal scenario and why??? Do have an average doc or an expert, are you sure? Do you want to find a better doc?