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Posted 6/19/2014 4:46 PM (GMT 0)
Doug:

 

You are asking great questions, displaying good logic/thinking.

 

I honestly think our knowledge does not extend that far.

 

My thoughts: see a top-notch medical oncologist.

 

My opinions:

 

IF there is a good/decent chance that the PC is still in the prostate bed, then go for the SRT. I am not sure that you can jump to the conclusion that it is not there. A G9 means it is very aggressive, but it still might be there.

 

Good luck.

 

Mel
Posted 6/19/2014 5:15 PM (GMT 0)
Thanks Mel, the oncologist is certainly in the near future.

Just for the fun of it I researched the weight of a human cell. Using the weight of the tumour and pre and post op PSA, I come up with a 111,000,000,000 (111 Billion)cells to produce the latest PSA. Not scientific but probably ballpark. LOL! Some got out of bed.
Cheers, Doug
Posted 6/19/2014 7:56 PM (GMT 0)
Hi Doug,
Sometimes all of this just seems over my head. I have indeed read where G9s are sometimes do not make much PSA.

But my 1st contrary or at least confused thought is that though your study says: "" High Gleason score cancers often have reverted to an embryonic state in which PSA secretion into the blood is markedly reduced.", you, a G9 like me, had a "first post op PSA was 1.15". Well, that sounds like a pretty good hunk of PSA considering that presumably the great bulk of the prostate and tumor and PSA producing cells had just been removed a couple of months or so back. 1st off it sounds like your G9 is producing plenty of PSA if you are getting over 1 just from what miniscule amount might have been left behind. (but who the heck knows?)

2nd thought is: I had some G8s and at least one G9 on Bx, G9 confirmed in path report. My PSA was 4.0 about 2 1/2-3 years before diagnosis, then 9.1(more than doubled in less than 3 years) and then in the few weeks it took me to get to the Uro went to 10.9, about a 20% increase in about 2-3 weeks. Was my G9 cancer causing all of this increase in PSA, or just my prostate? I mean, it's the PSA rise and doubling time that makes them suspect cancer in the 1st place isn't it?

Lastly, when I read about men with end stage PC, seems like usually the PSAs are 40 or 60 or even in the hundreds and whatever level rising rapidly. Don't these guys usually have the more aggressive cancers almost by definition? But they sure have plenty of PSA, even with no enlarged prostate gland to contribute it's share.

Oh well, I'm just thinking out loud. I have no clue. I'll be real interested to find out what you find out in the near future. Considering you only had a 3.8 PSA to start with- your glands normal PSA plus whatever the PC was producing, I am amazed that either enough could have been left behind in the Pros. bed, or that enough could have already metastasized, to produce over 1 just 3 months post surgery. How can that even happen?

But I'm sure sorry to hear about your reading Doug, but I am praying that :
1: it's some sort of lab error
2: that it is still in the bed

One of my alternative guys is always saying(he might be right or wrong) "they never get it all, by the time it is diagnosed it's always systemic". Plus, right or wrong, he feels even if it wasn't to start with, by the time they get done with biopsies and surgical manipulation, they are bound to have spread a few cells around. His point being that people develop cancerous cells all the time, but their immune systems normally take care of it. And of course he feels that nutrition plays a big role in how well the immune system works. So I don't know if you are heading for radiation for the bed, or HT for systemic, but either way hopefully you are maximizing whatever you can that will boost your immune system, just to leave no stone unturned.

God bless you, Doug, I will be following your story closely, even more so as a fellow G9.

Bill

Post Edited (BillyBob@388) : 6/19/2014 1:59:03 PM (GMT-6)

Posted 6/19/2014 8:20 PM (GMT 0)
Thanks for the post Bill. Just to touch on your first thought, because I don't have enough for knowledge for the others.

My theory is that to have such a high PSA 12 weeks after surgery it is probably coming from someplace other than the bed. If I had a positive margins, positive lymph, nodes, SVI etc. I would understand the reason for SRT. I think it's systemic. I'm just being pragmatic and trying to find some logic in all of this. Thanks again.

Cheers, Doug
Posted 6/20/2014 1:53 AM (GMT 0)
Doug,

Have you had a Bone scan and CT?
Posted 6/20/2014 4:27 AM (GMT 0)
Jerry, no. I've asked about that since day one and have basically been told "no need". I've been asking when I would see an oncologist and radiologist since day one. That apparently is now being arranged. The nurse has indicated "probably radiation" (thru email contact), at this point in my thought process I don't see that happening.

What's your gut feeling, is a PSA of 1.15, 12 weeks post surgery indicative of the cancer being limited to the prostrate bed? You've been a real help on my journey and I respect your views greatly!

Cheers, Doug
Posted 8/4/2014 2:26 PM (GMT 0)
My story is summarized in signature. I'm finished with IMRT and plan to get lupron for at least a year. My docs believe my PCa is contained in prostate bed which was zapped with IMRT. Hope they're right!
Bob
Posted 8/9/2014 9:59 PM (GMT 0)
I want to offer hope to those with Gleason 8/9 and 10 by sharing that I was given five years at the time of dx. In a matter of months, I will be at the five year mark and hopefully will still be non-detectable as I currently am.

I express appreciation to all my doctors, nurses, researchers, pharmaceutical companies and to my loved ones for getting me to this point. I also give major credit to my faith.

I haven't posted in a long time but talking with my dear friend Appleseed (who is another G9) we thought it would be a good idea to let others with high grade PCa that have been recently diagnosed or who are in the early stages that there is hope (when the clouds are as dark and gloomy as they can be) when you first hear of your extremely unfortunate high grade PCa.

Best wishes to all of us that are fighting this hideous disease.
Posted 8/10/2014 1:02 AM (GMT 0)
I should probably update this thread.

I had my Feb 2013 biopsy rescored recently by Johns Hopkins and still a G9.

However either my small town local imaging firm really screwed up when they diagnosed me a Oligometastatic with bony mets in spine and ribs, or Lupron since 3-28-13 has caused my mets to no longer be visible on either the standard bone scan or the more advanced F18 Sodium scan.

The latter F18 did show suspicion of lymph node involvement that was confirmed with a C11 Acetate test at AZ Molecular Imaging in Phoenix (I highly recommend Dr Fabio Almeida to any of you who like me live in a rural area that does not do very many prostate cancer bone scans).

The C11 Acetate is not covered by Medicare/Insurance and costs $3,000. Since I did the F18 at same time, cost was $2500 out of pocket as F18 is covered by insurance.

So I have 3 micro LN's contained in pelvic area and need radiation to prostate, and to what we would call the prostate bed if prostate had been surgically removed and to the entire pelvic girdle (not just the 3 LN's).

Holding off on starting radiation until after last week of GFMPH Rochester 2014 for 2 reasons:

1. Trying to qualify for Provenge with 2 consecutive PSA increases to leverage the so-called abscopal effect - Tall Allen has been instrumental in educating me about this. So far even after suspending taking my Zytiga since Thursday after Fathers Day, PSA has not increased, went from <0.04 at chicago Prostate Center to = 0.03 at Univ of Florida & Shands, so not directly comparable with respect to increase, decrease or stayed the same.

2. Need to decide on two week very high dose SBRT at UCLA that has a lot of appeal over 7-8 weeks of traditional radiation. However spouse not thrilled with me being in LA 2 weeks, and happy wife, happy life. We also have a very good IMRT/IGRT RO within a few miles of where we live in FL.

Will update in October.

LupronJim
Posted 8/10/2014 4:32 PM (GMT 0)
Jim
Sorry to hear you're at the next stage. LA is not a bad place to take your wife for a two week vacation. Sure beats seven weeks of IMRT IMHO.
Bob
Posted 8/10/2014 4:37 PM (GMT 0)

Break60 said...
Jim
Sorry to hear you're at the next stage. LA is not a bad place to take your wife for a two week vacation. Sure beats seven weeks of IMRT IMHO.
Bob

I hear ya Bob, and I thought so too, but for some reason Karen has no use for LA. Perhaps she is not fond of Hollywood, who knows.

I am actually better off now with the current diagnosis of advanced local disease (no bony mets) than the prior one which was stage IV treatable but not curable in most people's opinion, though UF & Shands does treat Oligo with curable intent.

LupronJim
Posted 8/21/2014 2:49 AM (GMT 0)
Greetings,

Oh wheeee... I guess I'm a member of this crew. (ducking!)

How did it start?

While I was thinking I had "irritable bowl syndrome" the frequency of my urination kept going up, my "stream" kept getting weaker and close to the end I was rather painful to urinate OR have a bowel movement. I'm 55yo.

Initial findings

A visit to my GP got me a DRE and a host of blood tests, including a PSA. DRE revealed "large, hard and lumpy". My 1st PSA test in Feb 2014 = 390.
2/14 PSA 390

I was quickly referred to a urologist. (who ordered another PSA = 320)
3/14 - PSA 320

A CT/CAT and MRI scan later I was scheduled for a 12-16 sample biopsy. I got to tell you, it was the WORSE living HELL that I was ever subjected to. None of the pain meds did ANYTHING. I nearly passed out in the office. They kept me there for 2hrs before I went home (was 'sold' as a return to work thing) and stayed there and took the next day off work.

All cores returned positive. One core G=7 and all the rest were G=9. The cores+scans showed the entire prostate and seminal vessels plus lymph node involvement.

Referred to trial

This was a complete waste of time. They did however downgrade/upgrade me to S4 and added "metastatic to lymph nodes" to my chart.

My urologist started me on 1mo of Casidex and then ~2weeks later my 1st Lupron 4mo shot.
6/14 PSA 58

At the beginning of Aug 14 (ahead of my next Lupron shot) I got another PSA test.
8/14 PSA 37

I had suggested that we get a serum testostrone reading at the same time as my PSA but the idea was nixed by my DR. After getting the PSA 37 4mo's after my 1st Lupron shot he ordered a testostrone level test. T <=10. The Lupron appears to be working. My urologist just this week added Casidex to my daily meds and now wants to see me in 2mo's (October) 2mo ahead of my next Lupron shot.

How am I doing?

Besides getting over the initial shock of the diagnoses I find the lack of energy, continued loss of sleep (because of multiple bathroom breaks during the night), general "foggy" feeling coupled now with aches+pains in my ankles and lower back+hips and weakness in my legs. The "hot flashes" gave me much respect for females that tend to live through them at some point in their 50's. I've gotten an extra med that makes the hot flashes more bearable but they seem to be triggered the worse at night (while attempting to sleep) or right after having a meal.

I still work full time but have little energy to do much else. I'll often end up trying to get 10-12hrs of sleep and only get a fraction of it. At least 1 day every weekend is spent in bed resting. I don't have a sex life. Little to no interest. No response to "stimulation". To paraphrase Dr Mcoy on Startrek: "his junk is dead Jim".

I've read a study where sometimes a slow drop to the PSA low point has better prognosis but its rather distressing that with T<10 and my PSA=37 ~4mos after starting Lupron.

I/we were rather hoping to get some mileage/time of ~3yrs out of the 1st round. I'll have to wait and see what October's number brings.

Post Edited (Mark0) : 8/20/2014 8:55:11 PM (GMT-6)

Posted 8/21/2014 2:59 AM (GMT 0)
Hi Mark..

Welcoming Healing Well. Great place for info and support...

All of us can relate to the shock...

You've been through a lot...hopefully it will calm down soon....

Jerry
Posted 8/21/2014 3:26 AM (GMT 0)
Hi Mark, welcome from another G9. It appears you have a good medical team. This is a great forum for support and finding answers. You will find that there are those that are going down the same road as you, and are very willing to share their successes and or failures. There are no stupid questions and even if you just need to vent, we are here for you. I had night sweats real bad last month due to some sort of infection unrelated to PCa. A friend let me borrow a fan with a remote and I gotta tell you, it was a real huge help.

You will discover that there is more to sex than just an erection. And your significant other will also, and that may make your relationship much stronger than you thought possible.
Posted 8/21/2014 3:31 AM (GMT 0)
Just a quick update for this thread. I lost my > sign last month. Here is my update thread....
www.healingwell.com/community/default.aspx?f=35&m=3160852
Posted 8/21/2014 6:56 PM (GMT 0)
This will be my first post to the club though I've been a G9 for almost 8 years now. After some 500 posts on the board I'll try to make this one short and to the one current problem that really has me worried. After Provenge treatment during Sept thru Oct 2013 my PSA haas risen an average of 4.3 a month over that 10 month period, a 4.7 to a 47. I'm scheduled for CT and Bone scan on 09/03/2014 and have another PSA as well. The results will be discussed with my MO, Dr. Karen LoRusso at Christus St. Vincent Cancer Center in Santa Fe, NM. Have any of you had such a rise in PSA no matter if you've gone through Provenge or not? BTW, I've stayed on Lupron all the way through this. Any replies welcome, thanks . . . Q
Posted 8/21/2014 8:09 PM (GMT 0)
..Q, you have been in this for the long haul brother, much respect to you. I feel your concerns but I trust in that you will continue to slay the beast for many moons. Thank you for fighting so hard cause you give us younger folk hope. If any scans come back pos hope you can zap them gone, so you can keep on truckin brother..

.....Appleseed......
Posted 8/21/2014 8:59 PM (GMT 0)
Lupron Jim
I understand that Marina Del Rey has a great cancer treatment center. My son lives there and it's very nice. Not like LA. Just thought I'd mention it! Good luck.
Bob
Posted 8/21/2014 9:42 PM (GMT 0)
Thanks Appleseed,
Now that I've found the club I will definitely post these scan results. Sure has been a weird rise but my MO has plenty of tricks up her sleeve so no worries mate . . . Q
Posted 8/22/2014 12:25 AM (GMT 0)
Update ... still fighting :-)

Got into the zero club again ... PSA 0.05. I think it was the radiation last Spring of the bone lesion that was found on my clavicle. The Zytiga probably helps too. Can't say enough good things about AZ imaging center and the C11 scan ... made this leg of the journey possible.

Even though i'm in the zero club, my doctor has me scheduled for chemo (taxotere and low dose carboplatin) this Fall ... I start in two weeks. I know it's the right decision, but still feel some trepidation.

Keep up the good fight and use the tools available to us ...

Ray
Posted 8/22/2014 1:02 AM (GMT 0)
Mark0 - thanks for introducing yourself! These accounts really help people.

I'm sorry to welcome you to the least popular chapter of the club no one wants to join. You'll find your nickname up on the grand marquee! PCa is concerning enough, but to have a G9 case just puts the icing on it. This thread is a gathering place for those of us with this diagnosis due to our relatively unique concerns.

You sound like you've been doing pretty well, and have a good medical team. I'm sure after 4 months on Lupron you were hoping for an even lower PSA, but at least it's headed the right way.

Your ADT symptoms sound all too familiar! We've discussed these on the forum quite a bit. You mention a drug to help with hot flashes, Megace by any chance? That's what I'm on. It helps some, but doesn't seem to stop them completely. Others have mentioned estrogen patches, some have mentioned depo provera shots.

I work full time too, and find myself constantly low on energy. I don't do well sitting at my desk for long, but my job lets me be pretty active. Exercise helps, counterintuitive as that seems. I sleep 8-9 hours a night, and get a 1/2 hour nap at work at lunch. Still, I find little motivation to do much else. What you're encountering is apparently a perfectly normal set of side effects, unpleasant as they may be. I choose to think of the hot flashes as an ongoing reminder of my suppressed testosterone level, and the beneficial effect on my PCa.

Lots of great people here, you should find a lot of good support. Ask, vent, whine, plead, whatever you may need to do.
Posted 8/22/2014 2:43 AM (GMT 0)

Break60 said...
Lupron Jim
I understand that Marina Del Rey has a great cancer treatment center. My son lives there and it's very nice. Not like LA. Just thought I'd mention it! Good luck.
Bob

Thanks, Bob.

She has nothing against LA other than it a all the way across country from Florida. She's really dug in on not going there even for her Sept birthday, the day after the PCRI conference at LAX Marriott that offers rooms at $100/night for the conference. She did go to Marina del Rey with me for my first appointment with Dr Turner an associate of Scholz/Lam, but prefers travlling to spoil grandkids over glitz and glamour of LA.

Break60 said...
Jim
Sorry to hear you're at the next stage. LA is not a bad place to take your wife for a two week vacation. Sure beats seven weeks of IMRT IMHO.
Bob

I agree that if it really does treat the prostate, what we would call the prostate bed if prostate had been removed and the entire pelvic girdle without undue toxicity to healthy cells, two weeks beats the hell out of 7-9 weeks for various EBRT options, be they IMRT/IGRT, low dose brachy, high dose HDR brachy with a boost etc.

I have seen a lot of top RO's not only Dr Chris King at UCLA, but Mack Roach at UCSF, Brian Moran at Chicago Prostate Center, Bob Zlotecki at Univ of Florida and Shands plus 2 local RO's. No one else comes close to Dr King's approach.

My thanks to all you younger guys still working and contributing to Medicare to make all these consults possible. Hope Medicare and Social Security are still alive and well when you retire.

So I expect to be in LA in October for one week of dosage planning and 2 weeks of high risk SBRT, deferring til then since I do not want to miss GFMPH last week of September and to qualify for Provenge before then to leverage the abscopal effect.

My best point/counter point with my spouse was that the total radiation of 7 Gy *5 is less than half of the 79.2 - 81 Gy with traditional that offers so do-overs whereas with SBRT there is the possibility of a second 35 Gy's if the need arises.

So she reluctantly agreed since at the end of the day it is my decision, not any uro's, nor RO's nor MO's nor her's.

What makes it high risk is not Dr King's methodology but if it does crap out, her I told you so's:}

Tall Allen who lives in LA was my mentor of this and I am eternally grateful for his help as he has done for so many of us.

LupropnJim
Posted 8/25/2014 1:21 PM (GMT 0)
I just read through the 8 pages of remarks. I am going to be busy figuring out all of the acronyms associated with these posts. I transferred over here from the newbie forum Redwing started for me. I'm not sure if that was wise or not. I'm not familiar with how things are done here yet.

My diagnosis came about from my search for the reason for my lower back pain. After at least three x-rays over a three year period I hit the Internet looking for answers. I was told my problem was arthritis. After reading that PC can cause lower back pain I made an appointment with a urologist. He checked PSA, had reading of 4.4, DRE showed firm spot on right side near apex. He suggested I come back in six months. I waited eight months. The doc had closed his doors so went to a different urologist, back pain had increased. He did the DRE and confirmed hard spot and somewhat enlarged prostate. No PSA reading was taken. I told him I wanted a biopsy. 4/12 with numbers 6, 7, 8 and 9. The 9 was 4+5.

As I stated in my first post I decided I wanted the robotic surgery, get that cancer out I thought. I scheduled the surgery for September 8th with Dr. Brantley Thrasher at KU Med Ctr. After some reading on the Internet I decided to get a second opinion. Flew to Baltimore from Kansas City, met with Dr. Alan Partin, he said you have a bad cancer and told me their lab found a 6, 7, 9 and 9. One 9 was 4+5 at 80%, the other was 5+4 at 100%. He said as a surgeon I regret telling you this but surgery is not the answer. You need RT with HT and maybe chemo. He said I can tell you that it is 100% that you will need the radiation even if you have the surgery. My bone scan did not show positive so that surprised me.

Now I have an appointment with RO Dr. Bonnie Goins in St. Joseph, MO on Sep. 10th to discuss treatment. I have not met with a MO yet as several have suggested here. I will plan on doing that.

It was stated on this forum there aren't many long-term 5+4 people here, in fact only five diagnosed since 2010. (one no longer with us). I took that to mean they had all died, was that the correct assumption or am I reading that wrong? After seeing several veteran members I am thinking I was wrong thinking that.

As you can tell I am really new here and anxious to learn more. I'm like a babe in the woods. I still strongly suspect my lower back pain has something to do with PC. Would a MRI help? I also have some abdominal pain that in my mind is suspect. I have a minor problem with bowel leakage and have not had any treatments yet. Does that mean anything?

Before asking many more questions about other things like Free PSA, PNI, EPE, biomarkers, sodium scans, PAP blood tests, C11 scans, 3Tesla MRI, and medications I will look these up, learn about them and then come back with questions if I have any. I'm sure I will.

So happy I found this site. I don't like not knowing. Urologists that sugar coat findings are doing patients a dis-service in my opinion.

DOB 10-27-42
US Navy 1960-1963 Kiddy Cruise
Retired American Airlines Training Manager
Posted 8/25/2014 4:02 PM (GMT 0)
Hi restofmine -

This thread has really grown, and 8 pages is a lot to slog through. I hope you've found some useful information along the way.

Sorry for any confusion, but it's best for you to stay with the main forum for most of your communication. I think they suggested there that you check out this thread, but you'll still get the most personal interaction on the main forum. There's no need to "transfer" to this thread. It's wonderful you've provided so much background; that's very helpful.

My intent for this thread was and is for folks new to this situation to find support and encouragement, as mainly a collection of background information and case stories. Posting our stories of our journey is meant to help people get their feet back on the ground after being knocked over by this diagnosis. You've probably done a lot of internet surfing on the topic already, and may be rather freaked out by the G9 5+4 stats. Lots of the stuff you find is rather dire, but a lot of it is pretty old too. Things have been looking up in the treatment arena, especially in the last few years.

For you to get the most personal help, the main page of the forum is really the best place. Everyone goes there, and for many of us we go there rather a lot (this forum is pretty addictive). Not as many peruse this G9 thread on a regular basis. So it's wonderful you've posted your background here. Add that to your main thread too, and I think it will be well received.

To answer a couple questions from your post:
- It was stated on this forum there aren't many long-term 5+4 people here, in fact only five diagnosed since 2010. (one no longer with us). I took that to mean they had all died, was that the correct assumption or am I reading that wrong? After seeing several veteran members I am thinking I was wrong thinking that.
Fortunately yes, you've misread that. What I meant was that there just aren't a lot of 5+4 posters, and only five diagnosed BEFORE 2010. No, that doesn't mean they've all expired; in fact the good news is quite the opposite. Those I've found are almost all still here; it's actually quite encouraging! There just aren't many (fortunately for most).

- I still strongly suspect my lower back pain has something to do with PC. Would a MRI help?
there has been lots of discussion here about mpMRI, multiparametric MRI, identifying significant prostate tumors. That would very likely help, especially for staging ("has it escaped the prostate capsule yet" is a critical question). You've already been told (and I heard this too), that this is a "bad cancer". My urologic oncologist also said surgery was a very marginal option, said he would operate if I wanted him to, but that if I was interested should also talk to an RO. I did, and went that way eventually.
Posted 8/25/2014 4:24 PM (GMT 0)
Redwing57: I still do not know if cancer has spread beyond the capsule. After Dr. Partin told me he could say 100% that I would need radiation I just assumed that his long experience showed there would be microscopic cancer cells after surgery. Today I talked with the surgeons assistant that was scheduled to do Robotic on me and told him Dr. Partin's recommendation, he said it was a good plan.
After reading about Varian Triology with Rapid Arc I am wondering if I should consider going somewhere that has that machine for my radiation. It sounds like the timeline would be much shorter and the visits shorter as well, maybe only 12 minutes a visit.
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