When to Radiate

BWalker · Regular Joined: 10 Dec 2008 Posts: 11

First, I am new here and this is my first post. 51 years old and was diagnosed with PC at age 43. PSA was 4.4. First biopsy showed "suspicious" samples. Second one 3 months later showed positive.
Underwent a radical and for 7 years PSA's showed undectable. The first few years it was <.1 and then they started using the hypersensitive test and it was .04, .05 .04 jumped to .07, back to .04. This past Spring it rose to .09. Had it checked this in September and it was up to .14.

Was going to get thru the holidays and start salvage radiation but I had it checked again just for the heck of it and it's back down to .10. Same lab. Urologist says give it a couple of months and recheck. Radiation Oncologist says to go ahead and start treatments. Waiting to hear back from another urologist and another radiation oncologist for third and fourth opinions.

What could be causing the PSA's to start back down? I'd like to think the rise was a blip but I am thinking it may be just the opposite.

Edit: I forgot a couple of things. Post RP gleason was 7 (4+3 I think), no lymph node involvement, no seminal vessel involvement, and it had not penetrated the wall.

Another edit: Just heard back from radiation oncologist at Bowman Gray. He did mention that there was a speck of aggresive cancer and if I was only a year or so out from my RP he would start immediately but being almost 8 years out it's kind of a toss up.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

There is a small segment of the population who will progress to 0.1 or thereabouts after surgery but never go higher. That's why traditionally, doctors have waited to see further progression. Even though these days, SRT side effects are milder and more temporary than in the past, they still happen, and you are also increasing your odds of secondary cancer by radiating the pelvic region.

You have a ways to go before reaching either of the cut points discussed in recent studies. If you are going to have salvage radiation, Dr. Andrew Stephenson's (Cleveland Clinic) research has shown that for optimal odds of a durable response, you want to start at 0.5 or lower. The next cut point is 1.0. Patients who start before they get to 1.0 are statistically better off than those who start after 1.0.
( Journal of Clinical Oncology, Vol 25, No 15 (May 20), 2007: pp. 2035-2041, http://jco.ascopubs.org/cgi/content/abstract/25/15/2035 )

Were your surgical margins positive or negative? Usually you'd want to hear your margins were clear, or negative (note: you could have positive margins and no capsular penetration). But if you are wondering if your recurrence is localized--and therefore potentially curable by radiation--it's better to have positive margins, since that provides a local explanation for the rise in PSA.

There are no guarantees, of course. Salvage radiation is always something of a gamble.

It sounds like you're doing a great job staying on top of the situation. I know the uncertainty and anxiety are no fun.

I highly recommend getting a copy of Stephenson's article. Contact me via my blog if you would like to do this but don't know how. Also, his presentation and slides where he presented his research were on the ACSCO website the last time I looked. He has been researching this for a long time, and presented an earlier version in 2004.

Best wishes.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

BWalker · Regular Joined: 10 Dec 2008 Posts: 11

Thanks for the reply. All the doctors are pretty sure it's localized (if it is even back at all) because it took over 7 years to start rising. One radiation oncologist is wanting to be agressive and get started. Another is kinda on the fence and is telling me to do what I feel most comfortable with. One urologist told me to come back in a couple of months and get the PSA checked again and Monday I will be able to talk with another urologist, who's opinion I highly respect. I am in NC and he is in NY is the only reason I haven't been using him all along.

I am the kind of personality that wants to just "fix it" and I guess the PSA anxiety is driving me crazy right now. However, I am not going to do anything until after the holidays so I'm going to try and foget about it for a few weeks.

Thanks again.

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

I view Replicant as the local sage on SRT.

I have gone through a similar dilema and completely understand the difficulty of your decision. Obviously it is totally a personal decision with potentially significant risks. The truth is you cannot know with certainty.

I went 4 years then:
.06,
3 months later .09
1 more month and .10
2 more additional months .10
3 more months .15 (at this point nearing 5 years post op

Unlike you however I had no declines, I was a little less time post op, and one tick higher in my highest reading. I also had Gleason 8 cancer. So I was slightly worse off than you on about 4 factors. I had negative surgical margins. My last test pushed the decision. I start actual SRT on Dec 18th. I have already been mapped and marked.

You don't say how long between tests which is at least a point of interest. Based on little more than a hunch and my comfort zone, .12 was my personal cutoff. I think it becomes difficult to explain a reading over .10 as a meaningless blip. On the other hand you had a .04 decline. If I waited, I think I would wait no more than 2 months between tests. I would certainly proceed if it even slightly tops the .14

Just another confused soul

_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

BWalker · Regular Joined: 10 Dec 2008 Posts: 11

Looks like we are on the same page. I am taking the test in mid January and unless it is down further I am going to pull the trigger. One thing I didn't mention is that in the post op biopsy showed a gleason of 7 but there was a "speck" of #5. The doctor at Bowman Gray said that this #5 can move without necessarily reaising PSA's. Otherwise he said they would just monitor the PSA's.

I've got a gut feel it ain't going to continue to go down so in January if it's the same or up at all I'm going to go ahead.

Thanks for all the feedback guys!

BWalker · Regular Joined: 10 Dec 2008 Posts: 11

Update: Had my PSA's pulled again and they are back up to .12. I called the radiation oncologist this morning to get things started. With the fairly level of PSA's and the fact it took almost 8 years for the recurrence I am optimistic.

Any advice on diet, excercise, etc while going thru the 38 treatments. Any questions I should ask or just let them do their job?

neutrondbob · Posted: Sat Jan 24, 2009 9:30 am Post subject: Re: When to Radiate

Do not let the radiation doc rush you into anything (make a sale), before you have a chance to learn all you can up front about your condition, your relative chances for successful radiation....did he mention anything about those numbers or such???? Does he even have such???? If so ask him how he arrived at those, then hold him to his statements and research it all....then you may know if it is b.s. or likely straight facts.

You can start hormone therapy with casodex or other choices and take some time to learn about your situation, also seek an PCa onco-doc get his opinion, just for kicks (smell revelation thereafter).

Salvage radiation might be at best 50-50%(according to books) shot at beating this disease and could be less than that depending upon assessment variables. Also, do you have enough insurance or money cost can be $70K-250K depending upon type given, locations, etc.

Hey I am not saying don't do proceedures, I am saying patients need total unbiased, factual assessments and knowledge to make their best choices, not the choice that fits the docs best scenario. It is not all roses out there...I have seen plenty over 7 yrs. in forums and with my own 8 opinions from years ago.

BWalker · Regular Joined: 10 Dec 2008 Posts: 11

Thanks neutronbob, I appreciate your post. I have two unrelated urologists and 3 unrelated radiation oncologists telling me all basically the same thing. I have read all I know to read and basically have 4 second opinions. God knows I don't want to go thru it but I can't find any doctor who is saying not to. One urologist I understand is one of the top urologists in the country and 2 radiation oncologists are with Bowman Gray (NC Baptist Hospital). Due to my age (51), the time it took to re-occur (7 years), the slow rise in my PSA's, and the fact that I am well under the cutoff of .2 (.5 for some and 1.0 for others) all factors that they are all pointing to with their recommendations.

I have an appointment for the CT scan Tuesday and will probably get started the next week. This is a good time of year for me too. Like I said, I don't want to but I truly believe that this is probably my best next step.

Thanks again.

neutrondbob · Posted: Sat Jan 24, 2009 3:19 pm Post subject: Re: When to Radiate

I am not saying don't do it or don't consider it, but know what you are doing and it looks like your doing your homework on it. All the rad-docs are probably going to say yeah do this, ask them about guarantees or how do they know it will be a success, listen closely. Make sure whom ever is doing it that they have done alot of these, expertise is always paramount. It seems IMRT radiations for external is the way to go over older 3DEBRT methods, also targeting variables come into play using IMRT, cyberknife radiation may be 'cutting edge' excuse the pun, experience is more important than the machine used.
Radiation can go very well for patients so it is not as scary as you might think, with an experienced rad-doc.
Radiation in effect messes up the DNA structure of cells, normal cells return, cancer cells die off over time-stop multiplying, so radiation results takes time, is it not immediate kill (per se), and psa monitoring goes on and on. It is an option that people have taken, the truth is the unknown of where is the PCa, if it is beyond the pelvic areas that can be radiated, then radiation is not the total answer, but drug protocols would be a choice, thereafter.
Wish you well towards anything you may choose.

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

I don't want anyone to misread me but I want to make a point or two.

A doctor that gives a guarantee is a fool and is to be avoided in my opinion.

All a doctor can ever give are general statistical odds and very little about individual odds because they are not God and there are too many variables. Individuals are not statistics and my diagnoses has made it abundantly clear that I have never followed a statistically predictable outcome

There are 2 main known cures for PCa - Radiation and Surgery.
If you fail surgery there is only one possible cure remaining, radiation.

The long and short of it is that the statistical odds be damned. What man with a 10yr life expectancy would not go for the only possible cure on the planet as opposed to managing PCa. Especially Gleason or higher. Matters not if the statistical odds are 75% or 35% for a cure.

Experience: I have been told by radiation oncologists at a major cancer center of excellence that salvage radiation is a "bread & butter procedure" that any competent radiation oncologist can do and that there was NO reason to go to their center which I was very prepared to do.

I was also told by them that age of equipment was not even a minuscule consideration anywhere within the U.S.

I was specifically told to be sure I was dosed at 70 - 72 Gray.

After a couple opinions and personal research, it really cooks down to a couple basics. You can consult 10 doctors or research for 5 years but it does not change those basics.

That comes from a guy who is known for being a research-aholic. Wink

_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

neutrondbob · Posted: Sun Jan 25, 2009 8:56 am Post subject: Re: When to Radiate

The statement there are two known cures for PCa, is actually not the total truth, it is "generalized" perhaps acceptable wide knowledge and/or endorsement from the medical doctors and would exclude perhaps onco-docs and others maybe cryo or HIFU docs and other possibilities.

Another thing is how do they define 'cure' it is not black and white, some institutions or docs used different psa's or parameters to define cure, maybe only up to 10 yr. survival etc. PCa is not as simple as is laid out before us.

Rather than start arguement, keep looking at everything, even it is not main stream, yes there is b.s. and snake oil out there too...weed it out.
There are protocols that even if not 'cured' status..the results may be very comparable to so called 'cured' status. If someone is 20-25 yrs. post surgery and psa say is not above .1, probably we can say with certainty that person is never dealing with PCa in his lifetime (i.e. cured), there have been psa failures (increases) on patients after looking cured for 10 years via psa history...so where did the PCa come from?...Dr. Barken says micro mets...cannot be seen or detected...can lurk on any patient, not what we want to hear, but it apparently the factual truth, there are patients out there that were considered "cured" when in fact they are no longer in that status.

PCa resembles the Twilight Zone- bizzare and unknowns, exceptions, non-definitives, exclusions....crazy land is more accurate to describe it.
_________________
"Youth is wasted on the Young"-W.C. Fields

neutrondbob · Posted: Sun Jan 25, 2009 9:11 am Post subject: Re: When to Radiate

Hawk no disrespect on research and what we can learn as patients about the bizzare land of PCa, just open discussion, alot of parameters and things to look at, all are also controversial and it never ends. We need to very careful about blanket statements with PCa(includes me too), always exceptions and inconsistencies are found. I too am just a layperson looking at everything and still do after 7rs yrs. Its a wild world is my comment on PCa.

I am not sure if you are saying there is no difference in all the various radiation protocols as to survival time or whatever paraments. But if you are saying that, it is not totally correct either. I could give an example or two.

Alot patients are never told total accurate truth (factual non-biased), it is a shame that many patients are not shown 'all possible' methods to combat the disease, some patients are not even reasonable candidates for like surgery...and yet many docs...just proceed to do them.

I just saw a 75 Yr. man whom got surgery in 2008, now totally incontinent and getting a surgery for artifical sphicter or such. Doc ought to be slapped, rushed him into surgery no doubt, at his age why risk surgery, drug protocols, radiation or cryo, HIFU, brachy seeds would have been a better choice for him (generalized), probably drug therapy would be the wisest he will die of heart attack or something else is more often road traveled by others like his scenario. Did the uro-doc surgeon tell him all such???
Doubt it.
_________________
"Youth is wasted on the Young"-W.C. Fields

BWalker · Regular Joined: 10 Dec 2008 Posts: 11

Update. Finished SRT April 5th. Just got blood drawn Friday and got a call today that I am down from .14 (pre SRT) to .11. I take that as good news. From what I have read it can take time for the PSA's to drop after salvage. Anyhoo, my urologist said that this was a good sign that it hasn't spread and said he is very optimistic that the SRT is probably working. He set me up for 90 days for another blood draw.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

That's great. It does take time for PSA to fall. Hopefully you'll be less than 0.1 on your next check, but I'd say, so far so good!
How are you doing on side effects? What kind of radiation did you have?
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

BWalker · Regular Joined: 10 Dec 2008 Posts: 11

[quote="Replicant"]That's great. It does take time for PSA to fall. Hopefully you'll be less than 0.1 on your next check, but I'd say, so far so good!
How are you doing on side effects? What kind of radiation did you have?[/quote]

I had 38 treatments of 3-D with little or no side effects. Some bladder urgency later in the treatments but OK otherwise.

	Cancer Forums Forum Index -> Prostate Cancer Forum	All times are GMT - 5 Hours Goto page 1, 2 Next
Page 1 of 2

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others