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The Gleason 9 Crew - Welcome and how ya doin'?

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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2817
Posted 9/27/2013 2:56 AM (GMT -8)
The Gleason 9 Crew - Welcome and how ya doin'?

https://www.healingwell.com/community/default.aspx?f=35&m=3182035

--PeterDisAbelard

This thread is intended to be a gathering place for those facing a Gleason 9 diagnosis. This is a chapter no one wants to join, of a club that no one wants to join!

If you're just arriving here or newly diagnosed, please also start a thread of your own so that you'll get more attention from the forum members. Some people won't read past the first couple pages of a long-running thread like this one. Those with G9 cases are pretty motivated, though, and this thread is a little different, meant to collect information and experience unique to this group. smile

Originally, out of curiosity I put together a list of all Gleason 9 forum members I could find by going through the signature thread, and all of the responses on my own lengthy thread here on HW. A number of people have corresponded with me about that list, and it seemed it might be helpful to put it in its own thread.

This is intended to be a specialized thread for those in this situation to post their status, even their story, and keep them updated just by editing in this thread. The idea is a little like a simplified version of the yananow.org website, but focused just on members of this forum.

Of the most interest: How did you find out, how did you choose your treatment, and how are you doing? I'll edit this top post to keep the list current.

Sorry to see every single one here, but it's kind of comforting to know you're not alone. There aren't very many long-term 5+4 people, in fact only five diagnosed before 2010 (one no longer with us). I'm not sure what that all means, if anything.

Gleason 9 Crew:
(The * indicates there's a post below in this thread)
5+4 Group
Nickname, Diagnosis Date
*restofmine 6/2014
*PSA3DOT7 9/2013 (or so)
Barb1 (for husband) 7/2013
*yk 6/20/2013
*jetskifisher 5/2013
*Redwing57 4/16/2013
*Dyank (for husband) 4/2013
*adjust 2/7/13
*Gunner34 1/2013
*Michael_T 9/6/2012
*greetingz 7/2012
*wingman63 4/2012
*DebbieMH 4/2012 (for husband)
*Upstate Guy 3/6/12
*tooyoung4this 8/15/2011
*Startech 5/2011
bertb 3/2011 (possibly 5+5)
*JCRush 11/10/2010
Resource 8/2010 (vanished from board)
*devastated1 2/15/2010
*Southern Comfort 2010
*gibson00 (for father) 11/2009 (and 5+5)
*Oncas 1/2009
*howard l 2009
quincy17 2007
Stxdave 1st DX 7/1999, RIP: 2/21/2011

4+5 Group (entries without the type 4 or 5 detail also go here):
mgc55 9/2014
cspivak 8/2014 (for husband)
Squidly24 8/7/14
Cosby 4/2014
*ed-bar 3/2014
*Mark0 3/2014
Flyboy316 4/2014
MsGlad 4/14/14 (for father)
Lionhawk 4/2014
DanRF 4/2014 (for uncle)
*Hopefull G9 3/2014 (for husband)
*shaba.doug 3/2014
Gbooth 2/2014
*redheadskier 1/30/2014 (Lisa, for husband Frank)
*L.D. (was Paluxy Kid) 1/2014
Jennyy 12/26/2013 (for father)
*French_Traveller 12/2013 (for husband)
BTom 11/2013
*dotson 11/2013 (for father)
*BillyBob@388 11/20/2013
*alephnull 10/2013
hondapapa 9/2013
jcjames 9/2013
*Montanan 8/2013 (approximate date) (for husband)
Fossil62 7/2013 (approximate date)
*break60 7/2013
*NJ Jon 7/2013
*FMRMONTAIGNE 5/2013
Skooley 4/2013 (approximate date) (for father)
*CacDaddy 4/2013
*jim_nc1 4/2013
*Appleseed (Nick) 4/2013
musicman21 3/2013
*nccajun 1/2013
*LupronJim 1/15/2013 [old user name was T1cN0M1b-in-FL]
Carlster 12/2012
*pmikey 11/2012
*grandpaof4 10/2012
*Littlenm 10/2012 (for husband) RIP:5/2014
*pepsiguy 8/2012
*myoho 7/3/2012 (for husband)
*SteelGuy 7/2/2012
PeterDisAbleard 6/14/2012
*Here we go (for husband) 5/2012
wsbostiii 4/2012 (approx.)
BJs DIL (for father in law) DX:1/2012 RIP:9/13/2013
vet2 DX:12/09/2011 RIP:1/19/2013
*wedge60 11/2011
*yaamba 10/2011
Turner 2 9/2011
*Explorer08 9/2011
*Dave-Rockville,MD 8/2011
winmui 7/2011 (for dad)
irishgrl11 6/2/11
Searchmode 5/2011 (for husband)
*FoxRun 5/2011
*houseboy 5/2011
*casper319 4/2011
Berdoo/Arkansas (dx date unclear, 2010?)
*Barry's Daughter (for father) 10/2010
*Fairwind 8/2010
*RangerTug 7/2010
Kbota 5/2010
*Jerry L. 11/2009
*Old Sailor 8/2009
*Percy-M2354 6/2009
goodlife 1Q/2009
*Ed C. (Old67) 12/30/2008
*Piano 3/7/2008
Kcragman 3/2008
*Northfoot 1/4/2008
Anniea 3/6/2007
Lydialynn (for husband) fall 2006
*Duke68 10/2006
cfree2004 5/2004
*Putt 4/2004
*zufus 3/2002
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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2817
Posted 9/27/2013 2:59 AM (GMT -8)
I have a lengthy history of elevated PSAs, low free PSAs, and biopsies, leading eventually to my current diagnosis of high grade, locally advanced prostate cancer.

Age 55, Diagnosed 4/16/13
Biopsy with 12 cores: one side all G9=5+4 (80%, 60%), 4+5 (2 at 100%, 80%, 10%), perineural invasion confirmed

Date PSA fPSA11/6/13 <0.1
8/28/13 <0.1
4/30/13 9.67 na%
3/13 5.2 12% PCA3=31 (concern since >25)
9/12 4.1 15%
... (4 year possibly unwise hiatus)
9/08 1.84 na
7/06 1.95 na
6/05 1.98 na (fPSA isn't checked with PSA so low)
5/04 3.3 10%
2/04 neg color doppler biopsy (12 cores, Dr. Fred Lee, Rochester, MI), started low-dose aspirin
2/04 3.3 na
8/03 3.3 7%
1/03 neg biopsy (12 cores)
1/03 5.2 8%
9/02 4.9 7%
7/02 neg biopsy (6 cores)
6/02 4.5 9%
5/02 5.3

Back in 2002, 2003 those PSA numbers and fPSA pretty much said I had PCa then according to numerous studies. A bit panicky, I left no stone unturned in testing at the time, rather convinced I had it and just needed to get it confirmed by biopsy. It made me crazy, causing me to spend virtually every lunch time I had for about a year at the local hospital's medical library, reading study after study and chasing down all the references in those studies. I spent more time in the Journal of Urology than a lot of doctors, I bet. Two 2" thick notebooks full of copies of studies resulted from that effort. Around that time, my dad had his prostate removed due to cancer, so that further fueled my concern.

Living in southeast Michigan then, with great health insurance, let me really pursue this with some of the best medical attention available.

After no less than Dr. Fred Lee in Rochester, MI did my 3rd biopsy, color doppler ultrasound guided, finding only inflamed tissue and no evidence of cancer. I embarked on daily low-dose aspirin to help the inflammation. My PSA came down over the next year or two, and finally declined to less than 2. At that level, everything seemed ok. So after 3 years like that, I decided not to keep putting myself through testing anxiety every year, and wait until 55 to jump back into it again. After all, the odds of finding cancer after 3 negative biopsies are very low, and the whole medical community has been buzzing about over testing and over treatment. So, easy to let it go. If we find something starting at 55, then we'll look at it then, says I.

Concerningly, one study said even if PCa wasn't found at the time, a really low fPSA was indicative of likely future high grade cancer. (That was prophetic in my case.)

But, and that's a *big* but, in hindsight I should have at least maintained annual PSA checks. Maybe we'd have caught a rising PSA, but who really knows? No one would have biopsied in those years where it was so low even if I paid them privately. Even before just last September, it would probably have been below 4.0 and not worth biopsy. PSA velocity (rate of increase) has been said not to be enough for justifying a biopsy if below the concern level of elevation. I don't know if that's true or not.

There were no good guidelines 10 years ago for people with elevated PSAs and multiple negative biopsies. It doesn't look like much has changed. All they said back then was to continue monitoring, and biopsy if warranted. If I had to do it over again, I'd have a PSA every year, and if it was above the concern level I'd consider another biopsy. Or, at least the PCA3 test.

The PCA3 test is really simple to do in your urologists office, just a somewhat more vigorous than normal DRE followed by a first-catch urine sample of an ounce or two. They send that off to the lab to see how much RNA there is in there from cancer-type cells. The result is a percentage value, and if it's over 25 then there's more concern of cancer. If it's really low, then that tends to rule it out. Being high doesn't seem to confirm it, it's just indicative for a biopsy.

When the biopsy was positive, with seriously high grade cancer, the urologist scheduled a bone scan to see if there were any metastases alread, and a 3 Tesla MRI for detailed imaging for staging.

The bone scan showed two small "hot spots", which subsequent x-ray plain films showed not to be evidence of metastases. They were either prior injuries or arthritic.

The 3T MRI took about 90 minutes in the machine. The bad news from the scan showed the tumor area rather clearly, indicated extracapsular extension, and suspicious for neurovascular bundle involvement. The good news was seminal vesicles had "normal signal" and no evidence of lymph adenopathy was found.

So, it's clinically cT2b/cT3 depending on how much weight one gives the 3T MRI results. The Gleason scores were confirmed by second opinion from Johns Hopkins. Depending on nomograms and various predictive studies, my risk of lymph node involvement is about 40%. MRI's are not very good at seeing lymph node involvement unless it's significant.

Treatment choices can be quite controversial, so my plan is the result of assessing my specific situation, and weighing the results and probable side effects.

Surgery, while certainly possible, was projected to have a low probability of being curative (this is definitely controversial). My urologist said we wouldn't be able to do some of the "luxury" things like nerve-sparing, and it would be a wide excision. The expected side effects would be complete and permanent ED, and incontinence which has a pretty wide range of severity depending on lots of factors.

Radiotherapy (RT) with hormone therapy has shown good results with this type of case, with lots of variations in the type chosen. RT has changed a lot over the years as knowledge and equipment has matured.

We selected Image Guided Radiotherapy by Intensity Modulated Radiotherapy, external beam only. Adding seeds was not seen as being helpful enough to offset the increased side effects (urethral strictures, mainly). The lymph nodes are being treated due to the likelihood of micrometastatic disease in them already. I have 3 gold fiducial markers implanted in my prostate, which are imaged by low-energy x-rays to guide the alignment of the x-ray machine before every treatment.

So, the treatment plan is concurrent hormone therapy, or Androgen Deprivation Therapy with two drugs (ADT2), with Lupron and Casodex for two years. Eight weeks after the start, Image Guided Radiotherapy was begun as primary treatment. The pelvic lymph nodes are being irradiated to 50.4 Gray, and the prostate boosted to 79.2 Gray. We're using a Varian Trilogy with RapidArc so the time on the table is very short, 10 minutes from the time I walk into the treatment vault until leaving.

At the end of August, I completed 44 sessions of radiation therapy with minimal side effects so far. The biggest challenge was keeping a full bladder and empty rectum for every treatment, important to protect the areas around the prostate from excessive radiation exposure.

The best news is my PSA is undetectable, <0.1 ! My medical oncologist (MO) decided to check it right after radiotherapy to see if my ADT2 course is effective.

It definitely is effective! It's too early for radiation to have had a major effect on my PSA, so it's not usually checked this soon. This was something of a special case in that there was some question about why we added bicalutamide to go for ADT2 (instead of just Lupron ADT). My preradiation PSA had come down from 9.7 to 2.0 during 7 weeks of Lupron alone, good but we'd hoped for a bit lower. So my urological oncologist added Casodex (bicalutamide) to see if we could get it significantly lower (like down to less than 0.5), mainly to help the radiotherapy be more effective. My MO was satisfied with the results, to say the least.

So we stick with the plan, ADT2 for 2 years during which time the radiation effects should fully mature. Then, stop the ADT2 and see how my system recovers. The desired outcome is for my testosterone to recover while the PSA stays low.

Edit:
This is a link to a thread about my radiation therapy experience. There's a video of an actual treatment session for those who may wonder what that's like.
www.healingwell.com/community/default.aspx?f=35&m=2878923

Edit:
November 7, 2013 - update:

Good news today, PSA is still <0.1, undetectable! Yay! This is after a bit less than 3 months past completion of radiation therapy, and still under ADT2 Lupron/Casodex therapy. The doc says it should definitely remain low while on ADT2, and really doesn't think a check is necessary any more than every 6 months in this phase.

I don't have the testosterone result yet, but my doc believes as long as I'm still experiencing significant hot flashes my T level is in the castrate range. I'll edit this when I get that number.

Saw my new urologic oncologist yesterday, since my primary doc has gone to another facility to chair their urology department.

I like the guy, we interact well, and I like his approach. He wants to be aggressive too, considering my young-ish age and that I have, in his words, "a bad cancer". :) Hard words to hear really, but I agree completely.

The downer is he is more in favor of 3 years on ADT2, suggesting longer in my case is likely to be worth the cumulative side effects. It's still controversial whether 2 years has been shown to be non-inferior to 3 years with high risk, locally advanced, etc. cancer. As far as I'm concerned, if 3 years might be better let's go for it. We'll see how I feel at the 2-3 year decision point, but right now I'm in agreement with the longer sentence. I know there's a lot of effort going the other way, with one Canadian study that pretty solidly supports 18 months being as effective as longer periods.

He also suggested low dose Megace to see if it has much effect on the hot flashes. I'm not convinced that any risk from it is worthwhile, but I'm going to try it for 3 weeks or so to see how much it helps, if any. Obviously, if it doesn't help, then we'll drop it. So far today, it has not been much help.

I got the next six month Lupron shot too, so my rear is a bit uncomfortable, but not much yet. Not limping.

Keep fighting, cancer warriors!

Edit:
February 10, 2014 Update
My PSA came back today at <0.01, T=10, so continued success! "Controlled remission" is the most applicable term I've seen; "controlled" because still under treatment (ADT2), and "remission" because there's no evidence of cancer activity. Next check in May.

Edit:
May 2014 update
PSA is still undetectable (<0.1, different assay). RO says, "Of course, and we expect it to stay there while you're on ADT.". I like the attitude, and I'm hoping he's right. He says let's wait 6 months for the next check, and so we will - November next stop!
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zufus
Veteran Member
Joined : Dec 2008
Posts : 3149
Posted 9/27/2013 3:15 AM (GMT -8)
You forgot that idiot zufus guy Gleasons found in biopsies 7,8,9's (2 of each of those) 12/12 all positive biopsies and maxed out with 80-95% PCa, psa 46.6 and total urinary blockage (ermergency room, leading to diagnosis). That was March-April of 2002 at age 51 and never saw this coming, blind sided. The 9's were (4+5)'s I even have photos under the scope, posted at yananow.org (pathology 101 stuff).

Oh, I'm that idiot zufus guy.....you get humility after 11 yrs. of various drug therapies, I am respondsible for the coined PCa term ' it's the twilight zone', my inspiration for that was Robert Young (3 year survivor, 1st PCa dictionary for laypersons....his terminology was: PCa is like being dropped into a jungle)...jungle it is, being that it is so bizzare I had to add a spin to it. 

The Zen-Zufus mantra is:  with PCa question everything and all the time  (holds up over time, I noticed)

yeah

 

Post Edited (zufus) : 9/27/2013 5:18:35 AM (GMT-6)

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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2817
Posted 9/27/2013 3:40 AM (GMT -8)
Thanks zufus! You're an inspiration.
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Nomar Lupron 4 Me
Veteran Member
Joined : Apr 2013
Posts : 1922
Posted 9/27/2013 4:04 AM (GMT -8)
"Of the most interest: How did you find out, how did you choose your treatment, and how are you doing? I'll edit this top post to keep the list current."

First, thanks for the thread and for keeping the G9 roster current.

I am Gleason 9 (4+5) and as my username implies, my current treatment plan is Lupron every 4 months (first 3-28-13 and second 8-1-13) and Xgeva monthly (first 8-26-13 and second 9-23-13 ).

I found out then age 64 due to PSA doubling rate of 6 months, even though my PSA at the time was only 3.68, the highest it has ever been. I had been having regular DRE's and PSA tests for past several years.

I turned 65 in August which made me Medicare eligible that really helps on medical expenses.

My situation is pretty unusual in that my G9 was found at initial diagnosis including bone mets. Technically I am classified as Oligometastatic <=5 distant bone mets.

So I still have my prostate and have never had surgery nor radiation nor chemo, though one or more is likely in my future.

I am fortunate to have no symptoms, no pain, and only occasional hot flashes when awake, though wife claims about midnight I sometimes turn into the Lupron pumpkin and sweat profusely but sleep through it.

I have had a DEXA density bone test that came back normal and a CTC Circulating tumor cell test that came back negative, a ray of hope from that.

My second bone scan (not DEXA but regular bone scan) came back as "improvement" over first bone scan, but very frustrating as a metrics guy to not have that quantified.

My MRI to spine showed that the brightest glow on the bone scan at T7 & T8 was actually a previously undiagnosed herniated disc with spinal compression (recall no pain). But I still have what report referred to as "mild bone metastasis" if there is such a thing at T4 and T9.

The MRI to pelvic area went the opposite direction. What appears on bone scans to be merely a spot on the right sacroiliac that is not symmetric with the left sacral area was classified by radiation oncologist as classic prostate cancer metastatic to bone.

Plan is to stay on Lupron for 24 months if i can remain castrate resistant that long and then decide on Intermittent Hormonal Therapy.

Since PSA is often a poor indicator for G9's, though my medical oncologist at UF & Shands' Metastatic Disease program continues to monitor PSA and Testosterone, rather than continue to do quarterly bone scans, will conduct scans only if persistent pain symptoms develop.

Besides no pain I am blessed with a very supportive spouse and an extensive prayer warrior group.

Gotta run over to GFMPH Rochester for some informal group therapy and will edit post if I think of anything else.

LupronJim
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grandpaof4
Veteran Member
Joined : Apr 2013
Posts : 805
Posted 9/27/2013 4:25 AM (GMT -8)
Redwing57,

Didn't see my name on the list of 4+5=9. Have to get ready to so to the SSA office this morning so will update later today.

Thanks for the thread.

Dave in Bartlett, TN
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greetingz
Regular Member
Joined : Aug 2012
Posts : 247
Posted 9/27/2013 4:34 AM (GMT -8)
And then theres me. At diagnosis psa in mid forties. 5-4. Over the last year flare ups show doubling time to be as little as 2 weeks. One radiation treatment on thigh and middle back. Presently appears another flare up beginning.
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Jerry L.
Veteran Member
Joined : Feb 2010
Posts : 3197
Posted 9/27/2013 5:06 AM (GMT -8)
Neat thread idea. It's always helpful to have the support of others that can relate. (My friend Oncas is missing on the list...he is a big inspiration for me and others)

Most of my story is in my signature, but to answer your specific questions:

How did I find out?: PSA baseline at age 40 was .70. PSA at age 44 was 4.03 which led to biopsy/DRE.

How did I choose treatment?: Scans showed that it "could" be contained. Chose surgery. PSA came back undetectable, but was a T3b. Decided on Adj. Radiation. 15 months later- PSA up a little (.09); rescan; spot identified... hormone therapy followed by spot radiation/xgeva and a trip to Dr. Myers. Currently off HT...on some controversial "stuff"...

How am I doing? Currently on a HT vacation. Last Lupron was October, 2012; testosterone at 700ish since early, 2013. doing good...running a race in 9 hours for PC...goal --- 23 mins.... expect to go back on HT and other therapies in the future, but for now....loving the vacation...

I have developed and said this before...if I'm going down, I'm going down swinging. I will stay on top of this disease and use anything and everything that I have to combat it.
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 9/27/2013 5:28 AM (GMT -8)
Redwings, glad you went ahead and started this special thread, as you suggested on the last chat night. I think it will be useful to all the G9 guys out there. The scary part, is just how many members are already in that club and still showing up.

My heart is out to all of you. I often feel, that if I had avoided my 3rd biopsy as I had wished, I would have ended up here as well. My uro had the good sense to push me into it right away, instead of waiting another year or two as I had wished.

David in SC
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Old Sailor
Regular Member
Joined : Aug 2009
Posts : 214
Posted 9/27/2013 5:54 AM (GMT -8)
Old Sailor is 4+5
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FoxRun
Veteran Member
Joined : Aug 2011
Posts : 891
Posted 9/27/2013 6:32 AM (GMT -8)
I'm not on the list and that maybe because I did not identify myself a G9.

Clinical Stage - T2c - R lobe biopsies positive involving 4/5 cores, 40% of R biopsy area - L biopsies positive involving 5/5 cores 30% of L biopsy area.

Gleason Score - 9/10 4+5 - high grade

PSA baseline 10.6 - 1/3/2011

Treatment - External beam RT 6/22/2011 - 7/29/2011
- HDR implants June 16 & July 21, 2011

A 2 phase method, with first phase including pelvic regional nodes, 4 field technique, dose 4500 cGy in 25 fractions, 18 MV photons. The second phase was by high rate (HDR) implant technique, dose 950 cGy per fraction, dose prescription at prostate capsule radiation source Ir-192, with treatment prescription based on a CT planning technique.


I had no definite symptoms of any kind and just decided to do a routine PSA test because my brother was dx'ed a few years earlier.
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NJ Jon
New Member
Joined : Sep 2013
Posts : 14
Posted 9/27/2013 7:26 AM (GMT -8)
I'm a new member, just joined. Age 67. Had PSA over 4 for several years, 2 biopsies, both negative. PSA went up to 19.4 (on Avodart) after 19 month interval when tested in June 2013; biopsy in July 2013 showed all cores on the right side positive for adenocarcinoma -- four Gleason 8, and two Gleason 9 (4+5), all involving >75% of specimen. Extension to seminal vescicle and perineural invasion highly likely. CT and MRI showed two lymph nodes (right external iliac and right hypogastric) enlarged. No clear evidence of bone mets on bone scan; doctor's don't think there are any yet.

Started Lupron (3 mo. injection) and Casodex on 8/15. Will have first T and PSA blood tests on Monday. Plan is to do scans again mid-November, and if able to make progress in shrinking the tumors, to do a round of radiation beginning in February.

The radiologist indicates that dosage to the lymph nodes will have to be lower than optimal to kill all the cancer because of danger posed to other tissues. Does anyone know if Proton beam therapy can deliver a larger dose to lymph nodes because of its ability to minimize effects on surrounding tissue?
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duke68
Regular Member
Joined : Mar 2007
Posts : 247
Posted 9/27/2013 8:10 AM (GMT -8)
Hi

Well my story is in the signature.

Will be 7 years since diagnosis.

Last scan showed enlarged lymph node. Then went on clinical trial.

Very low testosterone told it won't come back.

Well 27+ months since end of treatment psa 0.05.

Best wishes to all the brothers and there families.

Gerry   

 

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howard l
Regular Member
Joined : Aug 2010
Posts : 152
Posted 9/27/2013 9:46 AM (GMT -8)
Biopsy showed 5+4. Path showed 4+5. What a break I got. Went through a clinical trial at COH. This is my second go round with cancer. First was Non Hodgkins Lymphoma. Since I beat that I thought it was time to give back a little so I did the clinical trial. Currently on triple ADT. This is my second go around. I did have a ADT vacation that lasted 8 months. Last PSA was .03.

FIGHT ON-

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CacDaddy
New Member
Joined : Mar 2013
Posts : 10
Posted 9/27/2013 10:28 AM (GMT -8)
April 2013 orig diagnosis with a PSA 19.1. Biopsy 12 of 12 showed Gleason at 4+5. Stanford Hospital radiation 37 days. Just finished my 2 months of waiting before first PSA test. Results show 1.6. A lil tear formed. I feel as though things will be OK. I'm done with it all (my choice). Not going back. I'll see my own doctor and get a PSA annually, but no more of the high price hope and wait stuff. I'm going to live life and be happy. The song "Don't worry be happy" is my motto from here on.
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Michael_T
Veteran Member
Joined : Sep 2012
Posts : 4041
Posted 9/27/2013 10:35 AM (GMT -8)
I don't have time to respond to Redwing's questions yet, but I did want to welcome NJ Jon to our club (sorry you're here NJ Jon) and recommend that you start a new thread with your question about proton beam and the lymph nodes. I think if you do that separately you'll get some good advice.

Good luck and please stay active on HW!

Michael
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jetskifisher
Regular Member
Joined : Jun 2013
Posts : 66
Posted 9/27/2013 3:21 PM (GMT -8)
Hi Red
Good thread
My post op was 4+5.....so am I on both lists? lol, if I have to pay 2 subscriptions I will just be one or the other!
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Ed C. (Old67)
Veteran Member
Joined : Jan 2009
Posts : 2543
Posted 9/27/2013 3:46 PM (GMT -8)
I was diagnosed with Gleason 4+5 and a PSA of 3.8 in December 2008. I had non sparing robotic surgery on Feb 9th 2009. The biopsy report showed Gleason 4+4, EPE but negative margins and negative seminal vesicles. I've been in the zero club since surgery. My latest PSA was done in July 2013 and it was <0.01.
I feel great, I exercise 5 to six times a week and enjoy playing golf. I was dry at night from day one but used a pad for 3 months. I use trimix injections for sex.
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Michael_T
Veteran Member
Joined : Sep 2012
Posts : 4041
Posted 9/27/2013 5:17 PM (GMT -8)
Thanks for starting this Redwing. I'm definitely drawn to the stories of other G9s here, so I think this will be very helpful. (BTW, does it seems like there are more G9s than G8s here?)

How did I find out: had a biopsy in 2007 that was negative, but my PSA kept going up so I had a second one last year that was positive. I fully expected to be told I had cancer, but I didn't expect to be told I had an aggressive cancer. It took me a couple of months to get my head around that.

How did I choose my treatment: I chose the triple play of brachy (HDR), IMRT and HT. Brachy for the prostate, IMRT for the surrounding areas, including the lymph nodes and HT to treat me systemically. I feel good about my choice and I have an excellent oncologist (Dr Lam) as the QB of my medical team. BTW, my HT includes Zytiga, which is not typically used in early stage treatment, but has shown some promise in at least one study. I'm glad it's part of my regimen and that my insurance pays for it.

How am I doing: I honestly don't feel like I have cancer. It rarely occurs to me. OTOH, I feel crummy from my HT--that's in my face every day. It's too soon to say I have this thing beat, but in my head I feel that way and I'm not even one of those overly optimistic people. This community has done an incredible job in teaching me perspective.

Lastly, I know many of my fellow G9s have a much tougher row to hoe than I do. I salute the bravery and character of those in the G9 club! Many of you in this "club" have been an inspiration to me.

Michael
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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2817
Posted 9/27/2013 7:02 PM (GMT -8)
Wow, thanks everyone for contributing. I hope this is helpful both for us now and for future members. It's fascinating to hear everybody's story, sort of fleshing out the sketches in our 400 character-limit signatures.

I think I've caught up with the various list additions/corrections so far.

Clinical vs pathological Gleason score is an interesting question.... I guess we probably would be most interested in the initial diagnosis, the clinical score. That's what guides us on to the initial steps.
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 9/27/2013 8:53 PM (GMT -8)
Red,

You have done great with this thread, looks like you have gotten a huge response, all things considered.

Good going.

David
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Southern Comfort
Veteran Member
Joined : Jul 2011
Posts : 1058
Posted 9/28/2013 6:17 AM (GMT -8)
Redwing,
Thanks for putting this together.

I was diagnosed in Fall of 2010 with my GP running a PSA test after discussing my urinary symptoms. I thought is just middle-age, BPH kind of stuff. My PSA came back over 50 .. whoa!

I had a biopsy that confirmed the cancer. It was easy to see on the ultrasound. My biopsy Gleason score came back as a 7. I decided I wanted surgery and adjuvant radiation. I also started Lupron around the time of surgery. The post-surgery pathology came back as a Gleason 9 (5+4), t3b. Yikes! Fortunately, the surgeon removed 14 lymph nodes that were all clean, and I had negative margins. And, the bone scan was clean.

I had a major surgical complication that took time to resolve. (I will skip all that.)

I finally had the adjuvant radiation in the summer of 2011.

My RO kept insisting on 3 years of ADT. I kept pushing back. In early 2012, I finally went to see Dr. Lam to get another opinion. Not only did Dr. Lam insist on 3 years of ADT, he wanted me to add chemo. Dr. Lam gave me a 50% chance or recurrence, even after all the treatments. So, I did the chemo and have stuck it out on ADT for the full 3 years. I am now less than 7 weeks away from being off the Lupron clock. On one hand, I am so looking forward to it. On the other hand, that is when I will start to find out if there is any hormone-sensitive cancer left. Interesting times!

Southern Comfort
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jetskifisher
Regular Member
Joined : Jun 2013
Posts : 66
Posted 9/28/2013 12:56 PM (GMT -8)
Breaking news; I got laid last night, 47 days post op, yahoo.....very exciting, but different!
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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2817
Posted 9/28/2013 4:01 PM (GMT -8)
jetskifisher - Great news. Congratulations on your continuing recovery!
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Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 9/28/2013 4:09 PM (GMT -8)
Had a complete physical when I was 55. DRE=Normal. PSA3.5 Back then (15 years ago) that was considered normal for a 55 year old with a little BPH. Medical insurance cost exploded so I dropped it..Had a few more PSA tests several years apart, it was slowly rising..At age 64.75 my daughter told me there as a free prostate screening at the local medical school..Urologist marked my DRE "abnormal"...PSA came back 5.8 something like that..The day after my Medicare kicked in I was off to the Urology center, Biopsy negative....Whew! Urologist said we may want to do another one next year..PSA now north of 7..Second biopsy negative but atypical cells found..Put on Finasteride, PSA dropped to 3.5 but 9 months later were back to 5.3...Third biopsy, positive, 2 cores G6, 1 core G7, 1 core G9, 4+5...

I chose robotic surgery even though the surgeon said my chances for a surgical cure were only 50-50..But that's better than nothing and radiation could be used as a backup, a second chance...If radiation had been my first choice, there was no second chance...My post surgery PSA was 0.9...Radiation + HT followed, PSA was undetectable for almost 2 years..Stopped HT, PSA 0.5 Back on Eligard and Casodex, so far no symptoms, no mets...I go in next week for a 3 month checkup. So now I play the game 3 months at a time....So far, so good....

Observations....Even though I was having biopsies every year or less, I went from a few atypical cells in one core to full-blown G-9 cancer in 9 months..I had a positive margin and one positive vesicle but clean lymph nodes..I suffered a surgical complication, a raging staff infection that put me back in the hospital for a week..The surgery left me impotent and after HT began, that's chiseled in stone..
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