Poll...Stage 3 repondants only, please.

I was at the oncologists office today.  My PSA is now undetectable.  But because I am stage III (T3b N0, Mx) I must make a decision on my treatment.  But I have a stage that no answer from my doctors matches.  I believe that I can't watchful wait.  I had surgery on February 16 and the surgery has seamingly removed the bulk of my disease.  But the doctors can't say if it is still in my body, confined to the positive margin area, or an immediate danger.  I am given several options:

1> Hormone treatment

2> Radiation

3> Chemotherapy

4> HT and Radiation

5> Shotgun of all the above

6> There is also a clinical research study offered by a med company.  In that study, I would be randomized into one of four classes.  There are two arms of those four classes.  Arm 1> I could get HT, I could get HT and Taxotere (chemo), Arm 2> I could be told to do nothing until my PSA rises up to .4 in which any of the first two would be engaged.  Radiation is not an option in this study.  I do have the option to opt out of the study at any time, but cannot chose my randomization.  My oncologist happens to be the Study doctor with Dr. Epstein at Johns Hopkins.  1700 men will take part worldwide.

Again only those with stage III (T3x) respond at this time.  Others are welcome to post what you might do but do not take part in the poll, please.

Post Edited (TC-LasVegas) : 3/29/2007 12:06:07 AM (GMT-6)

It's frustrating facing this decision about further treatment.  So many sources say it doesn't matter if you wait until/if your PSA rises to .2, where some recent studies I've read say that adjuant therapy will increase your chances of not having a reoccurance.  However, the rate of mestastesis was equal, and longevity not significant either.

I'm still in the waiting stage, with my next PSA test in June.  My surgeon has leaned toward additional therapy, but not as a must.  Hormones were ruled out, but my oncoogist mentioned that a lot of information about chemotherapy was coming down the pike. 

If anyone has had additional therapy in the form of radiation or chemo,  I would like to hear from them as to the side effects, since the amount of radiation would be less.

Tony:

May be of interest:

AMA Study Says Early Radiation May Cure Recurrent Prostate Cancer
			An estimated 30,000 men who have had surgery for prostate cancer will relapse this year, ......... But many of those patients can be saved by radiation treatment (such as proton radiation) at the earliest signs of recurrence. The latest study, published by the American Medical Association, looked at 500 men who were given radiation therapy in lieu of hormones. The new study suggests that many of these men can be cured with early radiation, because the cancer has not spread. Dutch

Hi Parson,
It frustrates me sometimes that when I reveal my cancer to someone, somewhat in the know, they always respond "well that's a good one to get, cause it's very treatable". It is very treatable in the stage I and stage II, but not as "very" in stage III or IV. I always respond that yea I guess I am pretty lucky. And you're correct that when someone dies of a car accident with PC, that the stats don't accurately take that into account. I guess that's the glass is half empty point of view, but it cannot be voided in my mind. I believe I have a strong will to live and won't let this get me down. But we in this thread are not like everbody who gets this disease, and we have to make different decisions than most. That's why I posted this poll. I am in the same frame of mind as you. On the one hand, I am not looking for the side affects, and on the other "da.m the torpedoes" does sound like it can reduce or delay recurrance. I will likely ratiate the local positive margin area and hormone the systems remnants. Thanks for replying.

Tony

Dutch - I want to understand this in regard to radiation: Are you speaking of cancer that is confined to the prostate bed?

Thanks


Tony - Geez...is there any easy decisions with this disease? After LRP Don gained continence quickly, had partial erections, healed well and his first PSA post surgery was 11.8...we got up off the floor and tried to regroup. It took 7 months, many tests and a final PSA of 18.8 for to confirm distant (out of the pelvic region) lymph nodes. ALL docs agreed, as did Don, to wait until they knew where the cancer was before starting HT. The theory was why put him through that any earlier than necessary. So HT (3 mo. Lupron shots) is his mode of treatment for the moment. His stage is now D2. Sucks. ( Didn't hear from Loma Linda today so it should be tomorrow)

If your docs know the site of involvement I'm for the give it all you've got. It seems that the course of some treatment is in stages...does that "shock" the cancer...maybe. Does blasting it with ALL OF THE ABOVE beat it into submission...that's the desired outcome. I'm NOT for clinical study - no control, no control. That doesn't sound like you.

Anyway - that my 2 cents.
Sounds like all you guys are doing your best to make informed decisions based on much research. I certainly have no answers but I have so much respect for you all on taking charge of your medical situations like you are. God bless youse guys.

Susan

Here's my logic stepping in.

Discussion 1>
If they cut out the prostate and find a positive margin, then it is possible that there is cancer where the prostate used to be. Hormones alone only slow the growth of this stuff not kill it. Radiation kills it. Why would one not want to kill what is likely present? Even if the cancer is systemic, A targetable area is a potential reduction of cancer cells. I had four positive margins so multiply that logic by four. Why wouldn't radiation be a benefit? Dr. V and I discussed this. He said that studies show that radiating the area has PSA benefits but long term studies show little change in mortality and the timeline. I talked to Dr. P (the radiaologist) and he says forcing recurrance is better than living with continuation. In other words if it's present and in a targetable area, hit it. I know Dr. V's information is true, and logic agrees with Dr. P. Also stated in many studies, as Dutch points out, recurrance can be targeted with radiation. OK. Logic again, What's the difference between recurrance and remnants?

Discussion 2>
Hormones or no hormones? As Susan points out, when the cancer does not have PSA rise, then why hormones now? If the disease shows no PSA at all after removal of the prostate, then could HT cause a "safe" level of cancer microplasms to becom refracted when there was no potential danger? Wouldn't that mean once the recurrance happens after HT you have no gernerally accepted tool to use? Dr. V states that whether or not you choose to do HT now or later, there is some refraction by the mear rise in PSA at recurrance. Dr. P. says "shrink it and I'll shoot it". Logic agrees with both perspectives. Dr. V's states the studies consistantly show that the earlier you use systemic treatment the better chance the bodies immune system can attack remaining cancer cells. Hmmm. That sounds logical.


Discussion 3>
Chemotherapy now or later. Over previously used chemo drugs, Taxotere adds a couple extra months. The timeline appears to be 19 versus 16 months for mortality. But Taxotere also carries an additional benefit when combined with radiation. Radiated docetaxyl molecules are stronger than non-radiated molecules at killing cancer cells. The doctors do not agree 100% on this.

The shotgun attack says all three combined, but in what order? The answer appears to be chemo, then radiation, then HT. Now we are talking severe side affects. I may not have broken this down 100% correctly as it is alot of information to digest.

Early systemic treatment appears necessary to allow the body to attack back. Radiation appears logical when residual cancer may be present through positive margins.

I am leaning torwards HT and radiation but if someone has an argument, by all means. Speak up. Please note the radiologist I have interned at Loma Linda. He believes that IMRT and Proton is about equal at stage three or four. (yes, NCI has an IMRT system and not a proton accelerator). I spent two and a half hours examining the equipment and some of the computer images from a subject. (no names were used) Since I was his last patient to see him last night he stayed with me for a very long time and went into great technical detail. He obviouly liked to talk about his science and I am a technical person so we actually went well beyond a patient/doctors visit. He convinced me to consider IMRT. Then he gave the name Rossi at LL and said go there and talk to him. Try to get the last window the in schedule of the day and he would tell him I was coming and get real technical. Interesting offer. Yup, Dutch, and PCDave, I'm going to LL.

Tony

Post Edited (TC-LasVegas) : 3/29/2007 11:06:28 PM (GMT-6)

Tony:

Boy, have you been doing your homework!! In discussion 1 - "difference between reocurrence and remnants" - I would think it would be more a cause and effect thing- the remnants are the cause of the reoccurence. ????  Does it seem logical that if you have positive margins, one of the places the cells will definitely be with reoccurence would be in the prostate bed?  Therefore radiation to this area to clean it up ASAP would be a good idea???   Don't know.

Good choice in Dr. Rossi - don't know if you will be able to see all of the equipment as the last time I was there they had treatments from 6AM until almost midnight, but hope you can see some of it.

Most of the motels give discounts to LL patients, so be sure to mention it.

Keep us posted.

Dutch 

Hi TC,

Wow. What a masterful summary analysis. I am going to print it out and keep it with my notes.

I still haven't decided what to do but I am leaning towards getting another opinion from an oncologist (I haven't seen one yet) and I think that they will suggest that I undergo further treatment (most likely radiation) right now even though my PSA is presently 0.00.

As you noted in an earlier posting, it is clear that getting radiation now will reduce my odds of recurrence. However, it is much more controversial whether there is any real impact upon long term mortality with radiation now as opposed to waiting until your PSA increases.

You and I have two key differences though. First I am T3a and you are T3b. With T3a I have positive margins but the cancer has not necessarily learned to live outside the prostate nor gone anywhere. With T3b your cancer has learned to live outside the prostate and it has gone somewhere else. (The other difference is that unfortunately in my case the T3a is joined by a stunning Gleason 10 which makes everything much worse.)

If I was T3b I think that I would probably undergo further treatment now and try to kill the remaining cancer while it might still be contained to the vicinity of the prostate. However, you might want to delay for several months if continence is still an issue.

Good luck whatever you decide.

Ben

Hi Tony:

I am not sure there is one right answer for the poll. The right answer is probably a function of post-op metrics (staging, gleason, etc)..

As for me, I am T3a Gleason 3+4. The good news for me is that I am not stage 3B or a higher Gleason score. Thus, I will probably sit tight and wait on pins and needles for that dreaded PSA bounce to 0.2.

If this were to occur, the next question would be when. My understanding is that if it is 2 years or later, there is a good chance the cancer is local and that radiation could be curative. If it is under 2 years, there is a good chance the cancer has already micrometastesized and I would be looking at radiation + hormone.

However, I still have thoughts sometime that maybe I should opt for preventative radiation. However, that does not seem to be the norm for folks with my staging.

Unfortunately Susan, none of this is getting easier. Not the decision making, not the research, and certainly not hearing this news for Don. But don't dispair, continue your research. Proton is simply a supplement to a stage I know is not condusive to localized treatment. It's not the worse news that you have to forego it. And in addition radiation can still be used in the future, according to my docs, in the form of salvage therapy.

Take it easy today, Susan. And Don, too. You are people who are special in my life, that I have never even met, but it's amazing that we don't even have to, to be friends. Our prayers are just needing some refreshing.

Tony & Ruth