What would you do if you were in my shoes?

I am six months post RRP and somehow my PSA is non-detectable with the ultra sensitive tests. I am a Gleason 9, my PCa had their bags packed and left for a vacation and left the capsule, find one lymph node and stayed, checked in for a stay in the margins, both sides, visited my perinural nerves and even took over my seminal vesicles. I shouldn't be at a non-detectable stage, but don't get me wrong I am thrilled. In six months I have healed quite well, still get fatigued, still improving on incontinence (wide open RRP which takes longer) and still mourning with impotence and trying the trimix injections with limited success.

With my Dx, I need adjuvant therapies, HT and IMRT and possibly Chemo to improve my odds of non-recurrence.

The Medical Oncologists said to start HT and IMRT so I went to the Radiologists Oncologists and he agreed with the M.O. with the exception of why start now since you have non-detectable PCa, only six months out of surgery and still healing. His advice is to have the PSA tested every two months and the second the darn little weasel shows its ugly head, he would give me the six month Lupron shot, start Cassodex and then he would map out for the radiation and begin IMRT in 4-6 weeks of when the Lupron was administered. He would first blast all the lymph nodes, then proceed to the IMRT up to 80 greys.

Would you suggest waiting at least for a couple more months to heal and even if the December PSA is still non-detectable would you start the HT and IMRT? Or would you keep waiting until the weasel pops out and I go from a <0.01 to a <0.02 to begin? I know some doctors like to see three continuous increases before they go with HT and IMRT.

Am I too paranoid about my bad pathology? Should I just start the process even though I may never need it? Or should I let the darn cancer come back before I take decisive action?

I would appreciate your advise, wisdom and counsel my fellow HW brothers.

Dev,

My uro/surgeon had me penciled in for Adjuvant RT before surgery based on my 9 of 12 cores positive, mainly G 4+4.

Once the path was back at 4+5, the pencil changed to ink.

Now, post DaVinci / RT, my PSA is rising again.

Did it help? Who knows. God, maybe.

Did it hurt? If I work under the premise that I needed it, no. If I work under the premise that I was already eaten up with micro-mets, might not have been a great idea.

I am working under the presumption that we cut out and nuked enough to buy me a few years even if there are mets.

One consideration - if you are close enough to continent to feel like dry really is possible, I would give it a month or two more. I pulled the trigger in a "one-pad-per-day" state, and I am now a little worse one year out from RT. I wonder every day what I might have bought for myself if I had waited another month. Useless wandering of the mind now for me, but a valid thought for you now.

With my Dx, I need adjuvant therapies, HT and IMRT and possibly Chemo to improve my odds of non-recurrence.

i'd go for the adjuvant treatment but hold off a bit until you heal up since your PSA is undetectable.  and of course i would test more frequently.  i think your best shot for a cure or a long remission is to hit the cancer ASAP with every weapon at your disposal.   i think the incremental approach with your pathology is not wise.

ed

 

Dev,
I was 58 when diagnosed and the cancer had escaped and was attached to the rectal wall. Also had bilateral invasion of the seminal vesicles.My PSA some 6 weeks after surgery was <0.2 (which was the lower limit of the PSA assay used in 1992), The surgeon told me he had left some tumor behind and to expect recurrence and to arrange my affairs. That was 19 years ago and I am still around, but not without the side effects of treatments...See signature

You are facing a tough decision but remain positive and recover from the surgery first. I am not sure that you can depend on the PSA to signal when to treat. This is because any residual cancer has to be poorly differentiated (high GS) and might not produce much PSA. Your Rad Onc seems to be offering a logical protocol except for the 6-month Lupron shot. Never start HT with an extended depot. Try a monthly shot for 2 or 3 months before and during RT. Later if HT side effects are manageable you can have a longer effect depot of say 3-moths duration. Plan this HT to be of some 12 months duration to preserve testicular function.

Wish you the very best outcome,

Ralphv

F8: I am not going to take the bait here in the open. If you really don't know what I mean, and I am not the only poster that uses that phrase, e-mail me, and I will give you the answer.

David

David -- i know Sonny uses it to.  it's a phrase that on first glance seems straightforward but the more i look at it the more elusive the meaning becomes.  you use the phrase alot now and maybe i'm not the only one who's not sure what it means.

i certainly feel my doctors aren't treating a number and are treating the whole person.  besides irradiation and chemical castration they have also treated my anxiety and erectile issues.  they answered all my questions and have explained all my treatments to me. plus a couple of my doctors will see me any time i have concerns or just want to talk.

if i balked at treatment my uro would probably say something like "that's fine if you want to die".  at least i hope that's what he would say.

ed

 

 The only thing I dont like about that is it takes away my options faster ...

this is another thing that is said alot here that on the face of it makes sense but on close examination may not be true.  has there been any studies done on this?  i am  particularly interested because i did fire all my curative bullets in my initial treatment as well as nine months of hormonal therapy.  if my cancer recurs did i hasten my demise by not holding something in reserve?

the way it was explained to me is the cancer had a 60% chance of being out of the capsule so a more aggressive approach was warranted. my uro, who is of course a surgeon, also told me that he would operate if that's what i wanted and if i didn't want to piss my pants for the rest of my life he was my man.  i asked him what would you do?  he said he would definitely go with the combination treatment.

would i have been better off having surgery and putting of further treatment only if the cancer returned?  should i have saved some bullets?

ed

Dev, If it was me, I would follow your Drs advise. I am not an expert, but it seems like a sound approach to me. The thing that would bother me about waiting is that positive lymph node. You have PCa starting down the highway to the rest of your body. Knock it out before it starts its trip. Also, by starting HT right away and delaying RT, you are getting more time to heal. You still seem to have a shot for a cure. I don't know if 3-6 extra months will give the PCa a chance to get loose. But it may. Why take that chance. Best wishes. BB

I always hesitate to reply to open questions like this, lest someone think I am trying to imply that I have any answers.

My surgeon at Cleveland Clinic told me that the current thinking there was to wait for reoccurrence. I personally waited because of my incontinence. My PSA held at .03 or less, so I just kept going from 3 month to 3 month PSA intervals.

My local URO wanted me to throw the book at it. I went to University of Michigan and saw Dr. Hussein, who also recommended ART within 4 months.

In the end , it came down to QOL for me. I have read enough posts from the HT guys to know that it is no picnic. Have seen enough guys report on radiation. I have a radiation guy on standby. I figured that I was not going to jeopardize my current "good life", for a relatively low odds chance that radiation/HT could do what the surgery did not (25 to 40 % depending which study you read.)

Having a Gleason 9 diagnosis is a heavy addendum to an already tough thing to hear. I decided early on that the odds of winning the war were long ones, so I was going to fight kind of a guerilla one, only shooting when I had to.

Again, I can't tell anyone what they should do. This is my 31 month report, and so far, it has worked for me. Let you know in December if I need to do anything different.

Always a difficult choice. Your statistics are somewhat worse than mine but the options and your thinking are similar to what I went through. In my case Gleason 7 (4+3) going in, Gleason 8 (4+4) coming out. Extensive perineural and vascular invasion within the gland with a great deal of the gland on both sides involved with tumour. I looked into additional therapy at six months and did PSA tests 3 monthly at the ultrasensitive level. As they were undetectable I put off additional therapy until there was some evidence of recurrence at the ultrasensitive level. I maintained the ultrasensitive testing for 4 years and it has remained undetectable (<0.01). I shall now drop it back to six monthly and maintain that regime for life.
To make it understandable:
Grade 5 cells will release about 1ng/cc of tumour while grade 4 will release about 2ng/cc. Grade 3 on the other hand releases about 4ng/cc of tumour. A pea is about 0.5cc. At Gleason 5 grade cells, this will give a PSA reading of roughly 0.5ng/mL for tumour the size of that pea. Tumour the size of one tenth of that pea will give a PSA of 0.05ng/mL. Just for mathematical fun the PSA from a tumour 1/100 the size of that pea would not be detectable at 0.005ng/mL. For the record, with human tissue the relationship between weight and volume is 1:1 ------- i.e. 1 gram=1cc.
Of course there are some variants that do not follow the rules and the above calculations are theoretical. Had I your stats I probably would not have followed the course did.

Some interesting reading:

www.prostate-cancer.org/education/riskases/Strum_StrategyOfSuccess2.html

Bill

Post Edited (BillyMac) : 10/29/2011 9:53:07 PM (GMT-6)

Daar HW Brothers,

Thank you each and everyone of you for taking the time to share you honest thoughts on what would be best in you opinion. Fortunately, by the grace of God I have non-detectable PCa which is giving me time to heal further. As I have read your responses, I clearly will be retested in later December and will be optimistic that I will still be non-detectable. Then get tested every two months thereafter even though the cancer center says three months is plenty soon. I do like what the radiologist oncologist is saying that every two months is a good period for someone that has high risk factors like myself. My goal will be to see if I can make to a year out before the Mets are ready to have a reunion at my expense. When that does happen, darn the torpedoes and I will perform an all out frontal assault with HT, IMRT and chemo. I will use each and every bullet that is out there.

I hate this darn disease and wished for one day I could stop thinking about it, but I can't. I would assume most of you are like me in that regards.

Again, thank you for your concern, and your unbiased opinion as to what you would do.

Best wishes to each and everyone one of us in our own personal journey with this cancer.

Happy Halloween.

See you all down the road.

STX,
The different between ART and SRT are not small when adding AHT. But adjuvant therapy does not help everybody. From my personal experience I went from a 50% relapse rate at year 5 to remission today for five years. Can I attribute that to the decision for adjuvant therapy? I dunno. But it likely didn't hurt.

Devasted,
I mentioned this before but this was a tough decision that I made several years ago and my decision was based on bad science. I could find plenty of data by not doing adjuvant therapies and I did not like the results I was seeing. For me at age 44 at the time, I wanted better results and the unknown appeared to be a better option. I did see some data on ART with AHT and hitting the lymphatic system, and it looked very good.

I think that the difference between ART and SRT were minimal when the RO wasn't hitting nodes during the ART procedure. But WPRT has changed things quite a bit. If I were to do prostate cancer over, it would be the same as I have done it so far. I had an opportunity to consider adjuvant chemotherapy which I declined. But after five years of this stuff, I would have tolerated it well and could have missed another opportunity.

If I were in your shoes I'd get more opinions on the adjuvant radiation from another RO...

Tony