Latest Doctor Visit and a real shocker PSA reading

tony,

i would be happy to read about any of the other documents you mentioned. you can use my e-mail address here.

i have known so many women, personally, that have been on taxotere for breast cancer, i would several a couple of dozen, and with breast cancer, it is sometimes used as a primary treatment in lieu of surgery, or as a secondary treatment post surgery.

yes, their hair falls out, they all got severe fatigue, nausea, etc, but within a month or two of ending it, they for the most part, recovered quite well. so why would that be any different if a man with pc undergoing chemo?

my neighbor, a male, underwent strong chemo in the past 5 years for stomach cancer (now he has PC). he was back at work and strong as a horse about a month after it ended.

i have been reading the HT stories here at hw for nearly 4 years now, and to me, the effects of ht are far lingering, and in some ways, more invasive then being on chemo short term. what am i missing here in the picture.

plus, you have to factor in my circumstances into this equation. i am dealing with severe chronic fatigue, from both RT experiences that I underwent in the past 12 years, it's never going to get better, that is why i still got to PT every week. and i have been dealing with severe chronic pain for nearly 2 years without a break, and its never going to heal or get better. so we are talking about a patient with those two major strikes against him, before we talk about any advanced treatments, whether it be ht or chemo. the odds are not stacked well for me to endure either. my QOL already sucks, every single day of my life, and i don't intend to make it worse, by gambling on a treatment that may or may not help me for long. my doctor is very conscious of my situation, so this is why we are, together, holding off treatment, for as long as it makes sense. is it a gamble? absolutley. but it's a gamble that i am willing to take, and one that my doctor is approving.

not all men here could, or would, be willing to gamble with a psa at 37 and rising fast post surgery and srt, but i don't scare easy.

i can barely enjoy "life" right now, and the only way i exist at all, is to be on heavy doses of morphine and loratabs. my body and mind has adjusted to this new reality. when i am doing some limited consulting work, people say to me, you look so good, would never know you were ill (other than i require a cane to walk), and when they hear of the extent of meds i am on, the usual reply is, if it were me, i would be knocked out cold, let alone be able to still do complex accounting and financial and IT work.

i have a strong will, and value my mind, so my fight is in my head more than my body at this point. my body is losing this fight, a piece at the time, but i keep my mind strong at all times. that is how i am going to win, so to speak, this battle.

the PC may win in my case, and i accept that, but i am still fighting, still trying, and will ultimately deal with whatever decisions i still need to make to stay alive. staying alive forever isn't my goal, but living what life i have left to the fullest of my diminised abilities is the goal.

when some judge me here, and i am smart enough to pick up on the little snide remarks here and there, they simply aren't walking in my shoes. let them be me, in my body, for just one day, and i am pretty sure they would have a different perspective.

appreciate you care, your knowledge ,and your support

david

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Age: 59, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

faith, that was being considered about 3-4 months back, its still possible, but right now, my dr. prefers to keep that on the back burner. after this new round of mri's next week, additional testing may very well be in the cards. thanks

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Age: 59, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

thanks again, hope you are faring well yourself :)

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Age: 59, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

point well taken, jack. thanks for your perspective.

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Age: 59, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

My friend had a PSA of 36 and was gutted when he told that he couldn't have surgery. He has had hormone therapy, followed by high dose bracytherapy followed by low dose targetted external beam radiation. His PSA is now down to <5 in a matter of months. He is delighted and feeling great. The treatments available these days are fantastic and give great hope to us all.

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Diagnosed 2 Oct 2010, Age 52
- PSA 7.25, Stage T2c, Gleeson 6 (3+3), 40% on one side and 15% on the other.
DaVinci on 16 Dec 2010.
Histology - 70% cancer and some Gleeson 9.
Dry at 2 weeks.
Cialis after 6 weeks. Vacurect pump at 5 months. Viberect at 13 months.
First real unaided erection at exactly 12 months to the day.
First erection good enough for intercourse at 13 months
PSA <0.01

Post Edited (notsostiff) : 4/13/2012 3:19:10 PM (GMT-6)

Tony, you were doing good until you said:

"That is probably a waste on our time to say any more since you do not trust anyone's personal experiences here..."

I love it when people, yourself in this case, assume things, and try to put words in my mouth. I have taken advice from time to time here, on a wide range of PC related issues. I hunt and choose, and sort through the myriad of answers and advice, like I am sure most people do. And on numerous times, I have taken information diretly from here, and talked things over with both my urologist and my current oncologist. So you are quite wrong in your assumption.

David

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Age: 59, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

David:

I'll try and post in a calmer tone (well, less blunt), since having you decide to censor my post would be counter productive.

But, go ahead and do what you want. Maybe some newbies will get a more balanced perspective from the assorted responses.

(text removed - 142) 

Mel

 

Post Edited By Moderator (142) : 4/14/2012 9:53:33 PM (GMT-6)

Hi David,

Haven't been around for a while and I'm really sorry to hear your latest results. I do check in every so often to see how things are going, especially for you.

No advice to offer, but all my best wishes and support. Load up your Skype again and let's talk.

All my best,

Mike

David,

Nice to hear back. Would love to talk and hook up again on Skype. You have my hotmail...let me know when you wanna hook up.

Looking forward to it.

All my best,

Mike

---

- mid 2007 pain in perineum
- prostatitis dx, several cipro regimens
- PSA 7's by mid 2008
- biopsy 5/8 high core content Dec 2008
- open RP May 2009, no bladder leaks within 48 hours of cath removal
- EPE all else OK, upgraded to 4+3
- ED, oral drugs don't work
- Dec 2009 started trimix, had priapism. Started at 0.1 mL, stopped at 0.02 mL.
- May/June 2010 ED good at 10 mG
- 5 mG now

David,

Just want to wish you the best. I think you have to go with the treatment option that feels right to you.

---

PSA: 7.4 at time of diagnosis.
Biopsy: July 4, 2011 @ age 52 -2 samples out of 12 positive, Gleason 6(3+3), both 30%
T1c
Biopsy March 1, 2012 @ age 52- 2 samples out of 10 positive, Gleason 6(3+3), 40 and 70%, Latest PSA 7.5 T1c
Active surveillance; following Ornish-style diet.

I'm pulling for you....hang in there..........Ken

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Age:55
VAMC Houston
Pre-op PSA
36.7ng/6-24-11 (-DRE)
38.23ng/10-06-11
Biopsy:12-09-11
11 of 12 cores +/Neuroendocrine pattern seen on 2 cores
32.13grams/PNI/+DRE/-Bone scan/CT scan inconclusive (5mm spot in lungs)
G9 4+5

RALP 2-13-2012 60grams
Radical prostatectomy and bilateral pelvic lymph node dissection
Adenocarcinoma and Neuroendocrine carcinoma
Tumor involves 90% of prostate
Extraprostatic Extension (EPE): Present, nonfocal, extensive
Seminal Vesicle Invasion (SVI): Present, extensive
Lymph-Vascular invasion (LVI): present
Perineural invasion (PNI): present
Margins uninvolved by invasive carcinoma including apical, bladder neck & multiple lateral margins
G9 4+5
pT3b

Post-op PSA
5.0 3-29-12 6.5wks post op
CT scan conclusive some growth (5mm to 8mm spot in lungs) & Prostate Lymph Node spots inconclusive
Chemo-Cisplatin & Etoposide 4-09-12
Hormone shot-Zoladex 4-09-12

David...

First and foremost, please understand that if I didn't care about you, I wouldn't bother signing on to reply.

Now... Yes, I am going to go there...

You said "My oncolgist is the one that does not want me to be on HT at this time. He was that way from the start. True, I am not thrilled about the thought of HT, but my doctor never knew my feelings on the subject ahead of time. He has very strong views on the subject, that in a case like mine, that an attack of chemo may, key word: may, do a better job of shocking an aggressive acting cancer."


One thing I do know from MDA is that while they will not go too far outside of protocol insofar as treatment, they absolutely will agree with us to do nothing.

I am dissapointed to discover that MDA clinics around the USA don't all follow the same protocol. It makes me second guess our decisions more and more. And, yes... we respect our doctor and that he is the professional. He actually respects that we are "thinking beings." However, MDA admitted that after further consideration, surgery was the "get it out" choice, but radiation seemed to allow for QOL issues that surgery wouldn't. I truly respect and admire a doctor who admits he stands corrected. He admits that he is a doctor and not God... He actually said, "If I were God, your husband would be healed."

Houston's MDA said without a question, that HT was first line of treatment in extremely advanced cases. As you may recall, chemo was pulled off of the table last September, because their research indicated that it was not as effective as "continuing" hormone therapy... in fact, they sent us home with papers indicating that Chemo did not prove to be nearly as effective as hormone therapy as a first line of treatment.

My husband has now been on HT and had Chemo as well... MDA re-imaged my husband every three months, yet after chemo, they didn't do any re-imaging. When I asked why... the Med Onc simply said "We don't expect that much changed, we were hoping to get some of the androgen independent reserviour."

Also, my husband initially stated that chemo was a cake walk compared to hormone therapy. Well, two months out... he's got his hair back, but his balance is way off at times and he is having trouble on focusing on simple task. I think some refer to this as chemo-brain or chemo fog...

Working in the engineering department of a very large company, he has now had to go on short term disability. Just letting you know, since the work you do requires intense focus, as well. Something else to consider.

When does the fog clear up, we don't know. I do know that every doctor visit he had, I was with him. When it came to chemo, as soon as they start pumping the poison in his veins, I had to walk out. I know it has its place, but regardless of what anyone says, I will call it poison. I saw this otherwise healthy looking person go straight to looking like a cancer patient. That was hard on me. It was another moment of reality.

JNF did hit the nail on the head, that everyone replying, seems to be doing so with your best interest at heart.

As I said, if I didn't care about you... I wouldn't have bothered to log in to comment.

Be blessed my friend.... :)

Post Edited (MsWorryWart) : 4/14/2012 1:40:14 AM (GMT-6)