PC- what I know, decisions to make.

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wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/5/2010 8:57 PM (GMT -6)   
A busy day for me here on the forum, and this will be my final entry/thoughts for the day.

PCa is a weird thing. At around 50 years old, one is supposed to get the DRE during a routine physical. I did that. No bumps lumps etc. And I mentioned to Dr. about my tinkle-travails.

Next step is to test PSA. Looks a little high 6.1, so the recommendation is to get a second PSA 6.7. Get referred to the urologist who does needle biopsy. Finds a little badness.

What's interesting is after talking with urologist, you can apparently have a high PSA without actually having cancer. Something called BPH. In fact, he referred to my cancer as being more "incidental". It is also very slow growing which is good so I can make some informed decision without being to rushed.

The fact that I am 53 and have this low grade cancer raises a bunch of questions: What if I do active surveillance and if this thing changes in 15 years or so, then do something. But then I'm closing in on 70 years old, and maybe a door or two has closed as far as options go.

Or I can do radioactive seeds or beam, but there could be a chance of recurrence, plus that scares me because of family history of colon cancer. And side effects. Well, all the options have side effects of some sort.

What if (and hopefully it does) there is some break through in curing through some gene thing in the next few years, but I've undergone surgery, what ever. Hey, gimme back my prostate.

As odd as it seems, it seems that surgery might be the best option since I guess I'm young enough to make a better recovery than if I were a decade or two older. But with talk of damaged nerve bundles, ED, incontinence, constipation....hmmm

And then as a final thought, I could die of something else before the PCa got a tight grip. i.e car accident, struck by lightning, heart attack.

Sorry this is my mind at work. I know that this is not all about me, more like about us. Bear with me.

As mentioned in my signature below, I go in for a second opinion later this month. I'll keep you informed.

Over and out.
Age: 53- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen. Prescribed Flomax for excessive peeing.
Second opinion scheduled 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/5/2010 9:10 PM (GMT -6)   
I just might add that it is uncertain how PC gets to a Gleason 9. There is some thought that it is what it is. By that I mean the cancer starts at the number you are diagnosed with.

Others tend to believe that it progresses at variable rates from 6 to 7 to 8 etc. As you research it, you will find multiple answers.

In my own case, in two years, it went from pre-cancerous HPINS to Gleason 9.

Active Survelliance will mean regular biopsies, PSA's, and a lot of anxiety.

I think probably at your stage, a couple hour procedure of Brachy seed implants, and you can have your life back.

Just my 2 cents worth. Free to you.

Goodlife
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


t-dog
Regular Member


Date Joined Dec 2009
Total Posts : 154
   Posted 1/5/2010 9:31 PM (GMT -6)   
Hey Wig, i feel ya brother, my head has been all those places recently also. Radiation is out for me because of my I.C. bladder issues which by the way may very well be why you get up alot at nite. Ask your doc, i was misdiagnosed for years before they found it. I`m only 50 and we decided we just cant take the long term risk of AS no matter how bad i hoped thats all it would take. Good surgeon = good result, carry on. Look that robot in the eye and say "lets party dude".
Dx at 50 in 12/09 Merry Christmas its cancer....
3 of 12 positive, right side only, psa at dx 2.6
routine physical, no symptoms
Da Vinci scheduled Feb. 2k10


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 1/5/2010 11:11 PM (GMT -6)   
Wigged,
Let's look at the facts and not conjecture. Only 2% of Gleason 6 patients ever die of PC; If it does show signs of progression any local treatment has the same cure rate as immediate treatment. The deaths from a G6 come from varients that manifest themselves with in 6 months and death occurs within 5 years REGARDLESS of treatment.
The biggest risk from AS is misidentifying the grade of PC. There are several ways to alliviate this risk. 1. get a color doppler ultrasound and 2. Monitor the PC over a period of at least 2 years. 8 to 10 psa data points over 2 years can accurrately indicate progression. If it does progress it will do it very slowly; that's why it's not terminal.
If you undergo treatment you will be 100% certain of side affects and a very good chance of permanent side affects that will affect your quality of life for the rest of your life.
Your G6 will not turn into a G8 in two years; So you have plenty of time to monitor the situation with out undergoing a drastic treatment. Many well noted surgeons are now coming to the conclusion that oncologists have know for years; the cure for low risk PC is more harmful than the disease.
If you choose to get treatment the facts are that for low risk PC every treatment option has the same cure rate. (This ought to tell you something), so the side affects are the most important part of the decision choice. Spend your time and effort researching the side affects and the doctors.
You can "what if" yourself crazy thinking about all the things that can happen, but the facts are with a G6 you will live to an old age and die os something else regardless of what you do.
JohnT

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


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/5/2010 11:45 PM (GMT -6)   
Wigged,
Although the biopsy found 1 core of 12 with 5% of that core showing abnormality of 3+3=6 I'll wager there are a terrible lot of 53 year old men with exactly that, and remain blissfully unaware of it for the rest of their days. BPH is a fancy name for enlarged prostate. On entering puberty your prostate takes off and grows as part of sexual development. It hits about 22 Ccs on average in your mid 20's. I have read that doctors are not aware of exactly why, but it can begin another enlargement phase from middle age. This can be most inconvenient as it can cause the gland to push up into the bladder (hence the need to piddle more often as bladder capacity is somewhat reduced) but also because the expansion inwards squeezes the urethra to a smaller diameter thus hindering the passage of urine. Now you want to piddle more often but can have trouble getting it out. This can lead to urine retention because you do not completely empty your bladder and can thus be liable to bladder infections. A bummer all round. But because the prostate as a result of BPH is larger and each CC of prostate can release an certain amount of PSA into the bloodstream then the PSA reading is higher in rough proportion to the prostate size. Infection too can cause elevated levels as an inflamed prostate releases higher levels of PSA into the bloodstream. A course of antibiotics is always a good first line treatment with elevated PSA to see if there is a reduction. If you know the gland size in Ccs, then multiplying it by 0.066 will give you the amount of PSA that a gland of that size would be expected to release. John T's suggestion of obtaining more information with additional staging tests before committing to treatment is very sound. You would seem to have more than ample time.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm

Post Edited (BillyMac) : 1/5/2010 11:55:48 PM (GMT-7)


wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/6/2010 10:19 AM (GMT -6)   
You guys are great. Most of what you all have written I know I've heard or read somewhere at some time. But in my situation I learn something new and forget/overlook something old.

I really like my urologist, but he is a surgeon. I've learned that surgeons tend to push for surgery, for whatever reasons.

He made it very clear that there is no need to rush into things and encouraged me to seek out a second opinion, and maybe even a second second opinion.

As BillyMac has made a good point about the urine retention and infection, and that then reminded me of the conversation I had with the uro about going on the Flomax in the first place: to try and empty the bladder as much as possible.

JohnT- your points were also made by the uro. I really need to pay more attention and thankfully my wife was with me and even took notes!

All good points. At this point I'm just going to march over to University of Chicago Medical Center, meet with Dr. Gregory Zagaja (also a surgeon) and see what he thinks.

At this point I'm thinking maybe my second second opinion should be with a radiaologist.

Thank you all again.
Age: 53- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen. Prescribed Flomax for excessive peeing.
Second opinion scheduled 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/6/2010 10:51 AM (GMT -6)   
It would definitely pay to have another opinion with a good radiation oncologist. Make sure the doctor specifically has a lot of experience and patients with prostate cancer. Many do, some don't, so be sure to ask. My radiation doctor said that about 80% of her patients are dealing with PC.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 in place


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 1/6/2010 10:53 AM (GMT -6)   
Wigged,
I would recommend going to Rochester MI and seeing Dr Fred Lee for a color doppler ultrasound. It will give you more useful information than any number of 2nd opinions, because any 2nd opinion will be another educated guess. With a color doppler you eliminate about 95% of the guess work and have info that you can relie on to make an informed decision. Besides Dr Lee is one of the most knowledgable in the PC world and his opinion is worth a lot.
Good Luck
JohnT

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

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