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Posted 1/8/2011 12:08 AM (GMT 0)
I was disappointed with my Ford meeting today. I expected definitive guidance. Instead the ball is in my court. 
Basically, the protocol for SRT would be a reading above 0.20 followed by another one. Also, they do have situations where the PSA shoots up like mine and just stops. 
But that is generally unlikely. So, I probably have a reoccurance. Radiation does work better when started ASAP, although it is unclear (according to the doctor) 
that starting before it hits 0.20 is significantly better. They said I could wait a few months and do another PSA. 
They also suggested I discuss it with my radiation oncologist (I will see him Wednesday). 
They also agreed with me when I said he would be quite likely to recommend we start immediately. They also said that would not be unreasonable either.

So, we left it that I will wait ONE month and do another PSA. Unless it is unchanged or down, I will do the radiation. 
In fact, if the radiation guy is amenable, I will probably have the starting date scheduled, so that within a week of getting my next PSA result
I will be starting SRT ( and I will cancel if I get unexpected good news on the next PSA). Basically, that will amount to a very short delay, if any.

I guess that sounds reasonable. As I said, I expected a firmer suggestion from the Ford group.
 
Mel
 
Mel
Posted 1/8/2011 1:14 AM (GMT 0)
A good friend of mine, who is a doctor, tells me one of his patients' greatest frustrations -- second only to dealing with insurance companies -- is the fact that there are often no "right answers." He says some doctors make up right answers -- "you should definitely start radiation" or "you should definitely wait 47 days and then start radiation" -- because patients crave definitive advice, so might as well give 'em what they want. But better docs probably tell the truth, provide all the information, acknowledge the uncertainties, and let the patient decide. Fortunately, it is clear from your prior emails that you are a smart guy and able to evaluate the information you are given and make intelligent decisions. Pitty for the guys who are not as able as you. Of course, if/when you do start SRT, you will have another tough decision -- with or without HT. Another question to which there is probably no definitive "right answer." Sorry you have to be dealing with all this. I wish you the best. Medved.
Posted 1/8/2011 1:20 AM (GMT 0)
Mel, the short delay won't hurt a thing in the bigger picture of things. Waiting for one more PSA test in a month or so sounds reasonable to me. From my experience, I doubt seriously if your number will either stablize or go down, I would expect another small increase by your next reading. The only reason to even wait at this point, in my opinion, so that you will be convinced that you really need SRT. That is the process that I went through, knowing what horrid nightmares I had in my previous radiation experience.

Waiting for it to hit .20 seems pointless to me, and the radiation oncologists I spoke with all agreed. It would be generally safe to wait till that threshold, if you were delaying treatment for a good reason, like incontinence issues ongoing, or perhaps other medical complications in your life.

I agree with you, talk to your radiation doctor, go ahead and make plans and schedules, to one more PSA test, and if its up even by .01, go for it while it has its best chance of working.

Just my thoughts. Like all PC matters, no one is going to tell you what to do, not even the good folks at Ford.

David in SC
Posted 1/8/2011 1:37 AM (GMT 0)
Mel,
Sounds reasonable to me, that's pretty much what my Dr and I have agreed on (slightly lower numbers but close).

I agree with David, if a Dr lays out "You've got to do this xxxxxx" I get a creepy feeling. I actually had one tell me "If you don't have radiation right now you're dead" SERIOUSLY!! We walked so fast the door barely had time to open before we were through it. His partner was quite amenable and laid out several options including the "hit it as soon as it sticks it's nose into detectable" option.

Best of luck
Dave in Durango CO
Posted 1/8/2011 2:21 AM (GMT 0)
Actually, I'm surprised at your responses!  I thought you would say quit waiting and get started (which part of me is saying, especially since we know we have a BCR!).

But, at least I can start second semester here with a clear mind and get busy with enjoying my work/life.

I will let you know what the radiation guy says. He is very nice (I saw him once) and I suspect he will go along with this and probably put me on the schedule.

David: If it only goes up 0.01 in one month, I'll probably be going "hmmmmmm????"

Mel (getting on with it!)

Posted 1/8/2011 3:16 AM (GMT 0)
Mel, how much do you want it to go up in one month? That figure of .01 wasn't meant to be literal, what I meant, if it goes up any at all at the next reading, then you will have two readings in a row of a rising PSA above .10.
Posted 1/8/2011 4:18 AM (GMT 0)
Mel, I well know the feeling of anti-climax -- going to a clinic and coming away with nothing sad

I suggest plug your numbers into the MSK nomogram here as I did: http://www.mskcc.org/applications/nomograms/Prostate/SalvageRadiationTherapy.aspx I expect you will find that starting radiation at your present PSA .13 won't be hugely advantageous compared with waiting until 0.2. (Try around 66Gy of radiation). The tradeoff is a small (moderate?) chance that your PSA will stabilize at its current level, and you won't need radiation at all.

I put "moderate" with a question mark because if you decide to wait, there are options you can take to maybe stop the PSA continuing to rise. I am thinking specifically of diet/supplement and lifestyle changes.

Many here pooh pooh this idea, (including me at first) but I think there is enough, often tenuous, evidence that there may be something in it. In cases where there is nothing to lose, it is worth a try. With frequent PSA testing, you would get quick feedback on whether something is working. Weasel words aplenty there :-)

This is a hot topic I know, and I have no wish to stir up a hornets' nest, so I just offer that as a suggestion for consideration. Good luck with whatever you finally decide.
Posted 1/8/2011 4:22 AM (GMT 0)
David:

I think it will be a moot point as I'm reasonably sure it will go up more than 0.01. My thinking, really, is any increase. But I guess if I just see .01 or .02 I might think twice and maybe delay things. Frankly, my doubling time is scary: less than 3 months. So only a .01 increase would be a big surprise.

Anyway, while many criticize the ultra-sensitive test for creating so much anxiety (it sure did), the advantage is that it gives one a pretty good heads up.

Mel

Posted 1/8/2011 4:39 AM (GMT 0)
Piano:

Do you have any specific ideas.

I'm thinking 8 oz per day of pomegranite juice and maybe blueberries.

Perhaps trying to continue low fat diet.

Perhaps try and do more exercise.

Any other quick stuff?

(Vit. D-3).

Hey, I am not adverse to a sensible diet.

Mel

Posted 1/8/2011 4:53 AM (GMT 0)
Hi Mel, the medical advice you need, and are getting here, is way above my pay level, but I wanted to tell you I'm sorry you have to be dealing with this and to wish you well.

I'm 18 months out from evisceration D-Day now, but I realize my PSA could pop up at any time and so I read with interest, and great respect, of those who are leading the way and grapling with these difficult issues.

Sheldon AKA Sleepless
Posted 1/8/2011 5:32 AM (GMT 0)
Mel,

We are obviously beyond medical clairvoyance here and into personal decision time. It is my personal guess, based on the relatively slow growth rate of PC, that whether you go for it now, or wait until .2, that it will make little difference. If it has metastasized somewhere, most likely it has already done it.

We are obviously hopeful that the positive margin's other half is just laying there in bed awaiting the dreaded radiation beam.

I really hope you can approach this like a calculus problem, and be able to put it on the desk, and walk away and enjoy your life and your work, and return to it when you have to.

Good luck !
Posted 1/8/2011 6:17 AM (GMT 0)

compiler said...
Do you have any specific ideas. ... Hey, I am not adverse to a sensible diet.

 

Mel,

 

First of all, I'm sorry to hear of your increased PSA, and sorry for the internal angst and worry that you are going through.

 

At the risk of being beat-up here for repeating myself too much, as you ask here for "ideas", you should consider these two things:

First, I've posted this link here many times before, but you should keep this statement (copied/pasted from the linked article) in mind: 

          "There was a direct correlation between the degree of lifestyle change and the changes in PSA."  LINK

Second, I've said this many times, but "change is difficult." 

 

Quite a number of guys either on AS, or in a similar situation as you after radical treatment and with subsequent increases in PSA have posted details on their own diets...and their results.  Lots of guys who got serious about it have had results similar to those reported in the Carroll study (in the link).  Off the top of my head:  Herophilus, Red Nighthawk, Jim is sick, Franchot, rhb47, ASR, brb0923, mr bill, Gordy.  SV was another recent visitor with a great success story, but unfortunately he was (embarrassingly) attacked by some members, and we haven't heard from him since then.

 

Despite all that, it wasn't too long ago, Mel, in a thread where "Jim is sick" posted details on his diet, and you wrote:

compiler said...
I do think some folks drastically change their diet. I don't have the willpower to do that and I have to add that my wife is supportive of eating healthy but NOT supportive of truly making drastic changes.

Perhaps that's unfortunate. 

 

Ours is a culture that rewards pills and procedures, and nurtures a clinical culture in which the goal is primarily focused on fixing what goes wrong rather than intervening in our lives now, before things get out of control.  I'm no doctor, but it is my belief that if you stick to a conventional diet, then you (i) don't put yourself in a position for the possible outcomes these other guys have experienced, and you (ii) will likely have conventional results.  Popping a few D-3's and eating blueberries on ice cream probably won't do it.

 

I hope that you read this in the spirit in which it was intended...truly from the heart.

 

 

Posted 1/8/2011 10:06 AM (GMT 0)
Casey -- somehow I just knew that you would pop up in this thread -- is that ESP or what? :-)

Thank you for being the cheerleader for diet/lifestyle change often in the face of considerable flak from the doubters which six months ago would have included me. BCR with the next stop ADT (or radiation) adds a lot of extra persuasion.

Mel this is what I have been doing and plan to do -- take from it what you will:

Firstly I have always led a low-stress lifestyle, never smoked, and over the last 10 years took daily walks of at least an hour, which included substantial hills. Have been a light (alcohol) drinker, thought I had a reasonable diet with no supplements, and if anything am a little underweight. But none of that stopped me getting both colon cancer and prostate cancer and now PCa BCR.

So the only things I haven't done relate to diet, supplements and drinking. I love my red meat, dairy products and sweets but am less fond of fruit and vegetables. All that is going to change.

After my last PSA test nearly three months ago, I started a daily aspirin (100mg, with doctor's approval) and soon after, a daily glass of pomegranate juice (200 ml, a little less than 8oz). I figure if those items make a difference, it will show in my next PSA test now just over a week away.

I have read the threads on supplements and planned to add OPC and fish oil for the next quarter. Just in the last few days I have decided that I will also go completely vegan. I will trial it for the quarter and if my PSA continues to rise at its present 7-month doubling time, of course I will stop everything.

ADT is the next stop for me on this journey, and so with nothing to lose, and much to gain, I see at least temporary veganism as a much lesser evil.

[Edited to correct references to BCA. I have BCR not BCA!]
Posted 1/8/2011 1:50 PM (GMT 0)
The radiologist guys usually are all to happy to start anytime, anywhere and like Daveshan mentioned (lol) there is never bias or one sidedness!
I am sure you are aware that SRT is a gamble in any event, might be a very decent gamble, but comes down to another gamble...just like having the first protocol-treatment...the guarantees don't exist...plenty of conjecture and supposedly highly educated best guesses as you have seen in others cases. Unfortunately the realities of dealing with PCa can become a nightmare as you have already been living through. You can get twenty different answers+...so how do you know who's correct? Since no body in my thinking can define where PCa make actually be in ones system...scans are about worthless for guarantees...it comes down to Las Vegas style medical decisions, so if you wanna jump into SRT even sooner than later or even skip it and go straight to HT therapies (which some patients have done this path), it can be your decision or you can hand it over to another guy(a doc) and let him run with his gut feelings. Might as well ask the radiologist about the game plan for the whole deal, just to know what something about what those plans might be.

Also, good luck to you on the SRT going forward, I hope it goes very smooth. I presume Henry Ford has IMRT machines being used now for PCa, back in 2002 they had IMRT but were not using them on PCa and there radiologist lied to me when I asked: (do you have IMRT machines=answered 'No'); do you know anywhere in Michigan that has IMRT available..she said 'NO and was going to be my radiologist...I fired her one day before starting radiations (I found a couple places not all that far away that offered IMRT and even one that offered Neutron & IMRT-Photon and when I met that doc he told me she was a friend of his and had visited their facility before...so I was lied to in order to cash in to make a sale $$$$, I wasn't gonna do EBRT and didn't need the collateral damages-LOL). But I did see Dr. Menon at Ford for his opinion on LRRP for my case....righteously he denied me and said no surgery it would be for nothing..so no cashin from his angle...thus a righteous doc for telling it straight up (has was correct, I verified his opinion). So I am not bashing Ford overall.....hey funny I found out the radiologist that I was going to have there...she either got fired or quit within 10 months..not there anymore.
Posted 1/8/2011 2:39 PM (GMT 0)
David, a month ago, I would have agreed with you about starting as soon as possible. After talking again to my 2 docs, hearing of so many cases they had where the psa shot up to around .2 and then stabalized, being told of the residual prostate tissue left after surgery, and being aware of just how big a risk radiation treatment is to surrounding tissue, continence and ed, then I am very willing to wait until I hit the two times .2, rahter than start treatment before I have allowed my body to reach any plateau. As they told Mel, waiting til .2 won't make a big difference one way or the other.

Mel, I think your decision to wait and retest is a good, sensible one. I'd even wait 2 months, if it were me. Like we are told all the time, we got just one time on each treatment to get it right. Also, I must have an unusual radiation doc., as he did not want to do anything early, and stated be would not begin until the twice .2 reading. So not all rad. docs are eager to use radiation as soon as possible.
Posted 1/8/2011 2:39 PM (GMT 0)
Casey,

I don't remember that SV was attacked. I believe that instead of welcoming him,

some posters used his thread, in which he expressed his progress, as a platform,

and things went downhill from there. That wasn't my idea of the purpose of a welcome

thread, but then ....

I do hope he returns.

Posted 1/8/2011 3:24 PM (GMT 0)
Mel, I really don't have anything intelligent to say about starting or not starting radiation, but I do want to wish you well as you struggle with the decision.  Sometimes, none of these things seems to have a "right" or a "wrong" that we can pin down, so I just hope you come to a place where you feel comfortable about whatever course of action you choose, and then I hope it works well for you. 

Posted 1/8/2011 3:32 PM (GMT 0)
Piano:

I'm thinking of doing the pomegranite juice, fish oil, vit. D-3, and flaxseed (ground). Is the aspirin supposed to help with PC? I need to get back in the gym; I've been ill with bronchitis that knocked me for a loop but is getting better. What is OPD?

Zufus: I am not going to Ford for radiology. I am not going to travel 2+ hours each way. Our local hospital is the major hospital center for mid-Michigan and they do have the latest and greatest equipment (Varian Trilogy RapidArc). I personally like the radiology guy and he seems knowledgeable. He came highly recommended by 2 friends who are local physicians. Still, I can only HOPE that he is good.

IT IS VERY HARD TO FIND A RADIOLOGY GUY THAT SPECIALIZES ONLY IN PC.

Mel

Posted 1/8/2011 3:37 PM (GMT 0)
James = re-read my post. I am also agreeing that Mel won't be harmed by waiting for another test, and see those results. It was his idea to go ahead and get the planning and scheduling part out of the way while he was waiting. If he doesn't need treatment, I would be the first to clap my hands and cheer.

My case for doing SRT (which I was totally opposed to for past experiences) was pushed differently, because of my pre-surgery PSA velocity issues, and the quickness to BCR, so as usual, different game plan for different circumstances.

To me, Mel, you had your mind mind up before this thread was posted. In that you were convinced that you had BCR. Now that you passed the .10 mark, I agree with you. But, its still a low number, and you still have plenty of time to think it all through. I think the next big decision wall for you will be SRT alone or SRT with HT.

That part was easy for me. With all the problems I had with SRT, I sure wouldnt have wanted to have a mix of HT SE to deal with too.

You still have to do what is right for you. Just like your diet interest above, if you think it will help, then go for it, but there is still some of the "horse is out of the barn" thinking in the back of my mind, as your primary treatment more than likely has failed, and you are contemplating your secondary and last curative attempt. It certainly isnt going to hurt a bit to make those life style changes.

Once you start the SRT path, there is no stopping it mid-stream, no re-play, etc. It's a long term committment, with limited odds of sucess, even in the best of facilities, but it is a chance, and that is what it is all about.

David
Posted 1/8/2011 4:02 PM (GMT 0)
David:

Yeah, we all have lots of fears. The horse is out of the barn is definitely one of them. The horrendous side effects (possible) with SRT is another.

I did consults with Dr. Hussein, a major medical oncologist who specializes in PC, at Umich. She advised NOT doing HT. The Ford folks didn't mention HT. So, I am more than happy NOT to do HT.

Mel

Posted 1/8/2011 4:21 PM (GMT 0)
Mel - one minor point on your diet ideas:  you mentioned ground flax.  I would consult with a knowledgeable doctor before doing that.  I have read suggestions that flax can actually be counter-productive in prostate cancer.  I have not studied the issue, but I would inquire before doing that. 

 

Posted 1/8/2011 5:04 PM (GMT 0)
Mel,
I'm truly sorry to hear your news...wishing you the very best.
Hero
Posted 1/8/2011 5:28 PM (GMT 0)
Mel,

I am truly sorry you have to go through this.

You are getting a lot of conflicting medical advice from non-MDs, so I'll weigh in also ... on the side of waiting for the results of more tests. I'd want at least one 0.2, if not more.

No HT.

Full disclosure: I am biased by the fact that I do not believe that I would personally undergo radiation treatment or HT at all (but per the rules of this forum I am not allowed to tell you why).

Zen9
Posted 1/8/2011 6:06 PM (GMT 0)
Mel, I am going through the same decision process. After surgery in 9/06 my PSA had a slow rise and when it hit .31 from a .20, I waited 3 months and it was .28. I did have a slight positive margin and SRT seems to be beneficial for a slowly rising PSA with a positive margin. Both my Doctors - Urologist and Radiation Oncologist suggested going ahead with SRT, but my decision because it has a chance of not working in some cases. The Doctors origionally suggested Adjuvant RT because of slight positive margin, but I had decided to wait and watch the PSA numbers - I think good move for me. They now suggest SRT and then watch the PSA go to nondetectable (or not) - this is the path I am taking.

So, been through the first CT with and without contrast, MRI to help with CT calibration, and yesterday the CT on the treatment machine with the tattoos placed ............ I start SRT Monday .......I just had to make the decision to go ahead, get this over with and have some time to recuperate before the Spring and Summer fun starts. I feel very good about this decision. (Treatment at Beaumont, Royal Oak, Michigan).

Best of luck getting through the decision process!

Dave
Posted 1/8/2011 6:30 PM (GMT 0)
Medved: Well, as far as I know, the latest is that flaxseed OIL is bad, but ground flaxseed (stored in the refrigerator) is GOOD. Who knows; a later study could reverse all this (that's why I get skeptical about some of the diet/supplement claims beyond the usual established low fat eat your veggies especially strong colored ones heart healthy diet).

Michael: Can you elaborate on your SRT. Do they use the Varian Trilogy RapidArc machine? Supposedly this is the latest/greatest. Our hospital went to this recently.

Mel

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