My radiation oncology appt

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reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 5/16/2011 6:49 PM (GMT -6)   
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.
Age: 66
PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Continent right away, ED
Viagra, Cialis did't work, Trimix works well
Post-surgery PSA:
3, month: undetectable <.1; 6 month: undetectable <.014 (ultrasensitive); 9, 12, 15 month: undetectable <.1; 18 month detectable .05

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/16/2011 7:09 PM (GMT -6)   
Nice rep-ort,

"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."

Actually I think it's great. If you are going to error you might want to assume the greater risk.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5816
   Posted 5/16/2011 7:09 PM (GMT -6)   
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
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 5/16/2011 7:41 PM (GMT -6)   
I am impressed with how thourough and detailed your post was written Reachout. Thankss for the update.
Michael

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/16/2011 7:46 PM (GMT -6)   
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
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3742
   Posted 5/16/2011 8:27 PM (GMT -6)   
"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."

Denver is in a situation like this..All the big hospitals and treatment centers have spent millions installing the latest linacs and in many cases they are under-utilized and will never pay for themselves..
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7204
   Posted 5/16/2011 8:40 PM (GMT -6)   
Good report and you should wait. Why subject yourself to this when you very well might not need to.
 
Mel

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 5/17/2011 7:24 AM (GMT -6)   
I forgot to add, I asked them if choosing a radiologist was the same as choosing a surgeon -- experience level, type of operation, etc. Of course, I expected them to say they were the best, and they did say they had the latest equipment and very good results. But they were honest in telling me that radiation therapy is a lot more uniform than surgery, that is, most major centers have it down to standard procedures and it doesn't vary as much from place to place. They said I should, of course, avoid "podunk" places but that the major centers are all competent.

They said that SRT for PC is "easy" as compared with other types of radiation they do. It's their "bread and butter" in the sense of that's the most they do, and they have it down to standard ways of doing it.

I also asked if something does go wrong, would they know right away or would I have to wait until it's all over? Of course, I was thinking of Purgatory's case. They hesitatingly admitted that it's possible for things to go wrong but they check the settings every day and should be able to tell if a mistake has been made. I asked if it's a doctor who does the daily checking, and they said yes, a doctor reviews every patient's record every day. Purg, I bet they told you the same thing.

Oh, one other thing, concerning the procedure. I'm sure the SRT guys must have mentioned this but I didn't recall it. They said that before treatment starts they do a urethogram where they inject a radioactive substance into the bladder with a catherer and take photos, then they do the tatoos.

Each treatment takes about 20 minutes (which I knew from the many posts here), but what I liked is they are open from 6:30AM until 2:00PM and I could go anywhere in that time frame. That had been a concern for me because I would have to drive a long way in a lot of traffic and it would be hard for me to always make a specific appointment.

Lastly, I did see that bell you guys talk about, with instructions to ring it loudly three times when the treatment is finished.

TC: "Actually I think it's great. If you are going to error you might want to assume the greater risk." OK, I see your point. But I was looking at the decision tree flowchart they showed me with a 16% success rate for Gleason 8-10 and that spooked me. I still think there should be some difference between a Gleason 7 with a minor amount of 4+4. a Gleason 8, 9, and 10. After all, a perfect 10 is 5+5. Not that it's incurable, but don't know how that can be the same as a 4+3 with a little bit of 4+4. However, this disease has humbled me a whole lot, and logic doesn't always work. As I said earlier, though, they did mention that many of those cases may have already had metastasis, so radiation would never have worked anyway.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7204
   Posted 5/17/2011 8:36 AM (GMT -6)   
For my set-up, they didn't do the urethra thing. They did do a thing up my butt
 
Mel

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 5/17/2011 5:40 PM (GMT -6)   
I go see my RO on Friday. After my drop in PSA, my Uro says to wait for my next PSA in August before starting SRT. I guess we shall see what the RO has to say.
Mel,I know I was tired of every thing being shoved up my butt by the time I had my surgery. Enough already!!!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11
2nd PSA-05/09/11-0.08

Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 5/17/2011 7:06 PM (GMT -6)   
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
AGE:59

Dx: October,27, 2008(the day after my birthday)
Psa 14.5,Gleason (4+3), all scans negative. Biopsy, 4 of 12 positive. DaVinci, 1/19/09. Confined to prostate? No lymph node involvement, all margins clear. 8 wk. Psa<.01,6mon .1,9 mon. .2. Began IGRT 10/09, finished.12/09. Since then,.1.12/22/10. <0.10, trending down. See you in one year, Doc.

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 5/18/2011 5:35 AM (GMT -6)   
Bob
Thanks for the feedback and for asking about my mom.

Yes, my mom has severe Altzheimers but is doing better now in the nursing home than she was when I made that post. She reached her 96th birthday a couple of months ago. We almost lost her to pneumonia but she's a real fighter and bounced back. I now realize that AZ is a very difficult condition to treat at home, even with home caregivers. It's too exhausting for caregivers and potentially dangerous for the patient. A home that specializes in AZ is a Godsend.

They say that stress is a risk factor for PC. Well, I had enough stress during the last 6 months with the AZ situation that it could explain why my PSA started going up again. Or it could be other things, who knows.
Age: 66
PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Continent right away, ED
Viagra, Cialis did't work, Trimix works well
Post-surgery PSA:
3, month: undetectable <.1; 6 month: undetectable <.014 (ultrasensitive); 9, 12, 15 month: undetectable <.1; 18 and 19 month detectable .05.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 5/18/2011 5:52 AM (GMT -6)   
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)

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