My radiation oncology appt

I saw the radiation oncologist today in Washington DC. Actually, saw two of them, and they spent a lot of time with me in an orientation and answering all of my questions. I'll pass on key points I jotted down, and avoid things that have already been extensively discussed such as the actual procedure.

First, my ultrasensitive PSA came in at 0.05, same as it was a month ago. I know it's only been a month, but that tells me that it wasn't a lab error, but at least it hasn't continued to go up. The radiologist told me I'm very early and am not in need yet of SRT, but they would offer it to me if I wanted it. He told me my PSA might stay at 0.05 forever, or it might stabilize for a while then start going up. He did say since I was at 0 after surgery, and .05 now it's likely to be from some spot that is still in the prostate bed. If they radiated they would recommend just the prostate bed and pelvic lymph nodes, not the wider radiation.

He did say that the ultrasensitive numbers are a fairly new thing for them, and they are more used to the older 0.1 sensitivity tests. They said they are seeing more men come in now with ultrasensitive numbers and they are still trying to figure out how to interpret them with respect to SRT.

On SEs they said, of course, they're usually very well tolerated and the most they see are urgency in urination, loose bowels, etc. I mentioned, without name, Purg's severe SEs and they told me they've never experienced that type of severity in the 7 years they've been there.

On success rates, they said that unlike adjuvant, there have been no randomized trials for SRT. But a couple of things they don't like to see are PSADT <10 months and PSA level >0.5 before starting SRT. But they said in all the studies that have been done, the conclusion is always that the earlier SRT is started the better, but you have to trade off against possible SEs.

Interestingly, even though my pathology had me as a G 4+3 with a small amount of 4+4, they consider me a G8, which is not good. However, they also said that my pathology report, with negative margins and negative EPE and SVs would not have qualified me for adjuvant radiation. They usually reserve adjuvant radiation for positive margins, SVI, ECE, T3, etc. However, when they pulled out a decision tree type of chart for SRT progression free results, it made a huge difference if I went in with a G7 or a G8.

The problem is that the chart lumps together Gleason 8,9, and 10, and if went in with a G8 and followed it down it only showed something like a 16% chance of SRT working vs almost 60% for a G7. The doctor said that was too pessimistic, and thought those numbers included a lot of men who probably already had metasticised cancer. I tend to agree that for me, with a Gleason 4+3 with a minor 4+4 component, I should not be in the same category as someone with a solid 10, but who knows?

They have brand new IMRT and Tomo Therapy machines in a new building, and even though they didn't think I needed SRT at this point, they gave me the impression that they would like to have more patients to get hours on the new machines.

All in all it was a good appointment, and has set my mind at ease somewhat. I decided to wait and get another ultrasensitive test in 3 months, and go from there.

Excellent, report reach out , I will be watching your journey ,as our pathology is similar. the only thing that concerns me, tho they were upfront about it, which might negate my concern, is not being familiar with ultra and how it fits into SRT go signal. They really seemed like straight shooters, I like that in a radiation oncologist. lol So relax enjoy the summer and wait for the next.05 or lower. I mean I really love how they said it could stay there for years. I would say they are keepers. Heck you are the one who will make the call in any event. Heck where are they I, oh never mind.....


Just reread, nations Capital

Reachout,

Sounds like you got a good thorough report. My own uro was concerned that after my surgery, my PSA never went below .05, and the RO I used was equally concerned, to both of them, it indicated at an early level, there was still some cancer present. Your doc is right, you may or may not rise above the .05. I think its good advice to wait for your next scheduled PSA reading, and re-evaluate.

For the record, I was on supposed state of the art Tomo based IMRT too.

Good luck, and I honestly hope you don't need the next step. Smooth sailing, I hope.

David in sC

Good report and you should wait. Why subject yourself to this when you very well might not need to.

Mel

For my set-up, they didn't do the urethra thing. They did do a thing up my butt

Mel

Great report, and you asked the right questions. The clinic I went to was "the best in the four state area" and they had a waiting list to get in. It's in Overland Pk, KS. Guys were driving there daily from Wichita, St. Joseph, Mo. and Springfield , Mo. Springfield guys had family in the area that they were able to stay with. They ran 45 patients a day when I was there. It dwindled to less than 24 by the time I finished in Dec. of 09. I also had the dye into the urethera.

I also noticed that you posted at the Alzheimer's site. I hope your Mother is doing well in her situation. I started posting there with questions about my mother-in-law. AZ is such a terrible disease and I am really trying to get a handle on how frustrating it can be, both for the patient and the care-givers. Good luck, my friend.

Bob

Looks like you have contemplated plenty on this and know that it is a best guess gamble just like about anything in PCa. As for the Gleason scores Dr. Chinn mentioned in latest issue of Paact Newsletters, 'Molecular Pathology'-article that Gleason scores are not your truest measure??? (what???) Two men can have the same Gleason score(s) and one can be much more aggressive than the other....if you learn alot about pathology you will come to understand why we are not given the righteous pathology information that could be gleaned and only a few experts even know how to do it. We are still in the less than definitive mode in PCa (i.e.- comparatively semi stone-age).

Risk factors in PCa pathology: ploidy DNA analysis types, 24- variant types of PCa (average pathologists would be clueless), specialized staining methods like chromagrainin for over expression of AR(androgen receptor) gene...has prognostics known just by having staining done and studied by the few experts(some people ask for this testing), then other genetic testings that might be offered: P53, BCL-2, HER-1 & 2, Cox-2, CGA, MUC-1, VEGF-R and some others. Then scanning methods which are still evolving, so we end up with making decisions (docs or patients) with less than perfection in the data collected and actually known.

Pathology links that will enlighten us: www.yananow.org/Mentors/BonkhoffStrum.pdf
www.nature.com/modpathol/journal/v21/n2s/full/modpathol200811a.html  
Paact Newsletters online   www.paactusa.org   (newsletters tab, newest issue Dr. Chinn)

Just pointing some things out, I can admit I am just a dumb layperson....I sure as heck question everything in PCa and have found plenty of reasons and not just pathology. Good luck no decision is all that simple and all have risks and variables builtin.

Post Edited (zufus) : 5/18/2011 5:59:13 AM (GMT-6)