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Almost there--treatment decision

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Posted 11/3/2012 6:33 PM (GMT 0)
Yesterday, I had my follow-up consultation with Dr. Lam and he reviewed my MRI results and the re-look my biopsy slides. The MRI was clean, but they re-graded my Gleason 8 core to a Gleason 9. So I ended up with one smiley face and one sad face.

My mild preference has always been for surgery. Getting it out resonates with me and my wife. But based on the data at hand, Dr. Lam thinks there's a 50-50 chance I'll need radiation as a follow-up. And I'd have to say that having both surgery and radiation is really my last choice.

So, I'm trying to decide if I want to roll the dice on surgery or go straight to the radiation route (most likely with seeds) and skip the surgery. In other words, should I go with my preferred treatment knowing there's a 50-50 chance that I'll end up with my least preferred path--the surgery/radiology combo.

I was really hoping the next post I had was going to be titled "Settled on a treatment decision" but I'm not quite there yet. That said, I feel like I have all the information at this point...I just need to determine how I want to roll the dice and plan to do that this weekend and get on with my life.
Posted 11/3/2012 7:01 PM (GMT 0)
Michael, if I had your stats I can tell you that selecting brachytherapy plus IMRT would be a no-brainer.

Good luck,

Jim
Posted 11/3/2012 7:11 PM (GMT 0)
My stats were better but since I had a 60% chance that the pc was out of the capsule I went with a combination treatment which I believe is the nuclear option.

So far my disease is in remission and I have never been incontinent.

ed
Posted 11/3/2012 7:13 PM (GMT 0)
I investigated brachy for myself, but did not find the combined seeds/IGRT suggested at the time. Seeds would not have been enough according to a couple of ROs (and I was told no by MD Anderson for my seeds inquires), but the two together might have been a good single-attack plan.

I did surgery, with much the same situation. "Get it out" was important, but I was seeing it as if not curative, at least a debulking prior to RT. IGRT alone did not promise good results either.

But with what I know now, the two together look like a good approach vs. surgery in general. Your age (51) would be the big question for me. You have an expected lifespan that will allow you to possibly develop the long term side-effects of RT. Balance that against potential long-term incontinence when you make your choice.

Yeah, clear choice - clear as mud.

Posted 11/3/2012 7:22 PM (GMT 0)
Michael,
When I look at any problem I look at the upside potential and probabilities versus the downside potential and probabilities.

In your case surgery has a 50% down side probability and what are the upsides? None that I can see, except that it is your preference and you would have to assign some sort of value to that preference. It also comes with increased downside risks of ED and incontinance and these probabilities increase when salvage radiation is added.
With radiation there is no downside when compared to surgery and a slight upside in terms of both cure rate and side effects. The biggest upside is that you avoid a 50% chance of two treatments.
So to me the answer is pretty simple, and as Tud said a no brainer.
JohnT
Posted 11/4/2012 4:02 AM (GMT 0)
As always, I appreciate the thoughtful responses I have had in my short time on this forum. As said above, it's clear as mud. But I always feel better for having others help me wade through that mud.
Posted 11/5/2012 1:18 AM (GMT 0)
Michael -

I had similar pre-op situation, including a second opinion upgrade from 8 to 9. I opted for RALP and so far, am glad that I did. My reasoning was my relatively young age (not as young as you) and my very strong desire to have a full pathology on the little bugger. So far so good. I was downgraded to a 7 and had just about as good a pathology report as I could hope for. My 3-month PSA was zero and I just had my blood drawn for the 6-month ... fingers crossed!

I am dealing with ED, but there's enough life there that I'm hopeful for a recovery on that front. Incontinence went away after a couple of months.

Good luck with you decision.
Posted 11/5/2012 1:55 AM (GMT 0)
Hi again Michael. Sorry to hear your latest update, and also that you continue to struggle with making your choice of treatment - believe me I know it's incredibly hard - this is likely to be one of, if not THE, biggest decision of your life. At the end of the day you have to make the call on this, and then move on and not ever look back - but again I would encourage you to look at all of the information you can find. My stats are significantly different than yours and thus I cannot relate directly - however given the vast amount of research I've done and then considering your stats as you've shared with us - I just don't see how surgery can be a plus? Clearly you'll need some form of RT, so IMHO other than the (perhaps uncontrollable) feeling of "just get it out", I'm not sure why you're still considering surgery? Again - your stats and your decision, I would continue to look at the facts, studies and results of the various treatment choices to help you wade through the mud!
Posted 11/5/2012 2:54 AM (GMT 0)

Michael,

I haven't posted a lot, but thought you should also look into IMRT/HDR treatment.  My Rad Onc said they are seeing very good results, especially in more aggressive Geasons.  I was a 4+3 and, although this was initially the least appealing choice, it was ultimately my choice for stopping this beast within me.  The HDR can place an extremely high dose inside the prostate while sparing the areas that would lead to more side effects.  The IMRT, at roughly half the usual IMRT treatment plan, is still more than enough to destroy cancers in the tissues outside the prostate.  The calculated Gys in my treatment was in the 92 range as I recall, and was heavily dosed to the area of known tumors, but also in the entire prostate, and the area directly outside the tumor area.  The IMRT especially dosed the rest of the potentials.  My description may not be exactly as treated as it's been a while since I read the treatment report, but I think its close.

The biggest risk for ED is if one of the needles gets inserted into the path of the nerve bundles and severs a nerve, but they try to minimize that risk.  Other side effects of HDR are probably less than seed brachy as the radiation is only inside the prostate and surrounding tissue for a few minutes, not a few months.  Of course, there are probably situations where they want the longer period of dosing that you get from seeds, so that would have to be determined.

Anyway, check out HDR with IMRT.  I think it was the best choice for me.  Actually, it was my urologist who suggested it and reported that it would be his choice if he is ever diagnosed with PCa.  My research seemed to indicate a reluctance by most Rad Onc's to use seeds on Gleason 7s or higher.  In my case, I think they wanted to get a little wider spray with the IMRT to the outside areas and a higher dose inside the prostate with the HDR.

HDR is not comfortable, but the usual risks of surgery (side effects) are not as present.  My HDR lasted 36 hours lying flat on my back in a hospital bed, being transferred to a treatment center for 3 sessions each lasting only a few mintues.  I had 19 hollow 10" needles placed into my prostate and surrounding area.  Generally, there are not a lot of issues with side effects.  In my case, I was driving my motorhome south for the winter only 3 weeks after treatment ended. 

Good luck with your treatment plan, whichever way you choose.

Posted 11/5/2012 3:18 AM (GMT 0)
That's a tough one for sure. How much do you want to play the odds? Current radiation is good, seeds, IGRT, IMRT even proton work and would likely be fine by itself. But I know that some people just want that thing out of here.

If it were my body I'd be very tempted to skip surgery and go right to radiation but then get the offending gland out and into the pathology lab might have some value.

Darn - you got a tough one there. I just wish I had the right information to help you choose.

But I will say this - once you do decide, march bravely on and don't second guess. I've wasted a lot of emotional energy wondering if I made the right choice. So far my PSA says I have but there is always that doubt which troubles us.

All the best with your decision,
Andrew
Posted 11/5/2012 3:31 AM (GMT 0)
I see where a primary treatment decision for you would be a tough call.

I don't believe in the one size fits all theory.

I had surgery. It failed fast. I had salvage radiation. It failed fast.

Now that you have a Gleason 9 core, I would be more inclined to go with surgery first, and only have radiation later if needed. Your prime concern should be getting rid of the cancer first, the potential side effects of surgery vary so much, that should be your second concern in my opinion.

I think seeding is a great option in many cases. I am not biased toward surgery in general, I try to look at each case based on its own merits. In your case, I feel surgery first might be your best shot for being rid of the cancer.

Good luck on your choice, it is yours to make on your own. As others have said, there is no guarantees with any choice, so in the end, you have to go with what you think is best for you, and hope for the best.

david in sc
Posted 11/5/2012 1:47 PM (GMT 0)
Good luck deciding. It's a tough choice. Just get as much information and see as many doctors as you need to. Be comfortable with your decision as there are no do-overs.

You can read what I went through by clicking on the link in my signature.
Posted 11/5/2012 4:01 PM (GMT 0)
Hi Michael,

One question you might ask (or perhaps you already know) is the location of the cancer. If it is in the apex, surgery would very likely result in a positive margin, which would likely mean radiation at some point.

In my case, I went into surgery with a Gleason 7 and came out with a Gleason 9. Without the surgery, I wouldn't have known the severity of my PCa. In your case, you already know you're high risk (although it could still be wrong). Surgery also lets the doctors go after the lymph nodes for more definitive diagnosis and actual treatment.

But whole-pelvic radiation, plus seeds, can have the same effectiveness, albeit without the certainty. Please be aware that with either approach, if they are aggressive with the lymph nodes, there is a reasonable chance for lymphadema in one or both legs, requiring that you wear compression socks for the rest of your life.

Still, with Gleason 9, folks like us are dealing with an ugly beast. Surgery followed by radiation is almost a given, and side effects, however unpleasant, are still better than being dead.

Best of luck with this difficult decision.
Nellie
Posted 11/5/2012 4:13 PM (GMT 0)

Somebody said...
Still, with Gleason 9, folks like us are dealing with an ugly beast. Surgery followed by radiation is almost a given, and side effects, however unpleasant, are still better than being dead.

Yes, twice as good, as I sometimes think on my grumpier days.
Posted 11/5/2012 7:55 PM (GMT 0)
What is the value of having a path report with surgery? What can it really change? Also, if you're dealing with seeds/IMRT combo, could you also consider seeds/proton combo instead?
Posted 11/5/2012 9:09 PM (GMT 0)
Squirm, that's a very good question and one that I have posed before on this forum.  I would love to hear some of the surgery guys chime in with answers.

What I believe is that having the post-surgery pathology is only important if you are totally committed to taking action based on the information.  For example, if the post-surgery report shows positive margins then one might immediately opt for adjuvant radiation treatments and perhaps ADT.  However, it appears to me that most men seem to take a "wait and see" attitude post-surgery no matter what the pathology shows.  In other words, they undertake active surveillance of their cancer, waiting  for PSA tests to determine if and when other treatments will begin.

As a brachytherapy patient, I don't know if my Gleason 3 + 4 was really a 4 + 4 but that doesn't bother me.  What I want to know is that my PSA keeps dropping to a nadir and any other information would have been interesting but not actionable.

So...what am I missing, guys?

Jim

Posted 11/5/2012 10:45 PM (GMT 0)

Tudpock18 said...
However, it appears to me that most men seem to take a "wait and see" attitude post-surgery no matter what the pathology shows.

Apparently I am unusual. Post-surgical pathology GS 9 with positive margins and immediately went for HT and adjuvant RT. Same thought process as the surgery, actually, I am still hoping to get a look at PC in my rear view mirror.
Posted 11/6/2012 1:51 AM (GMT 0)
Beware of people projecting their treatment decisions upon you. And good luck with yours - I remember going through this last year, and not fondly.

It's never a no-brainer unless you don't think about it.

You have a hard call - with a G9, considerably harder that I had to deal with, other than I had to wade through the whole set of people who like to argue against doing anything about G6 (not an answer I was happy with at age 47.) You certainly will need to do something with a G9.

You might try gaming a double coin toss to see if that helps you settle how you really feel. Take a couple of different coins, and make heads on one be surgery, tails be radiation, and the other is heads negative margins - no escape, while tails is positive margins/escape with surgery.

see how you feel if:
you radiated, but surgery would have done it
you choose surgery, but need radiation
you radiate, and surgery would not have done it
you choose surgery, and done.

The point of the coin toss (repeat a few times - substitute dice or cards if you like - let the "results" of each sink in for a while) is to make you deal with how you'd feel about the outcomes other than the ones you hope for - because we all go into this hoping for the "good" outcome, but we may not get it. If we pretend that's what will happen it skews our choices - so pretend them all to try and balance that.

IMHO, the point of choosing surgery, if you do, is going for the clean win. Pathology is a minor side effect, and as was recently covered in another thread, can be far from definitive anyway. If you do need radiation as a followup, you need to give the surgery time to heal, since radiation slows or stops the healing process. That would be a tic-mark in favor of just going for radiation in the first place, particularly with a G9.

If you find that radiation where surgery would have been adequate upsets you less than surgery followed by radiation that might help to guide you, since the other two options are essentially "the good" result for each primary treatment mode.

Then there are the ugly options that don't fit this simplified version of the game, such as where Purgatory is at - escape despite multiple treatment. Hopefully you won't have to cross that bridge.

Realize also that side effect profiles for each treatment mode may not be represented in a balanced way here. Don't go into anything thinking there are no side effects simply because some folks who post here got lucky... You may want to roll dice (most are not 50/50) on those too.

I know one guy off HW who had brachy, and he's got continuing urinary urgency and some burning, had several months of intense pain somewhat after the point where his radiologist expected that (and the rad doc really had no answer for - it just went away eventually.)

I came out of surgery on the good side of ED and the not great but hardly as bad as some side of leakage. Another surgical guy I know got the bad side of ED and the good side of leakage. Some others got good on both fronts.

An EBRT guy had fatigue and swelling to the point of blockage and needing (urgently) re-catheterization in the near term, and both he and another EBRT guy I know have the "wet farts" problem longer-term, which is no fun and seems a lot more problematic than urinary leaks.
Posted 11/6/2012 5:26 AM (GMT 0)

Tudpock18 said...
Squirm, that's a very good question and one that I have posed before on this forum. I would love to hear some of the surgery guys chime in with answers.


What I believe is that having the post-surgery pathology is only important if you are totally committed to taking action based on the information. For example, if the post-surgery report shows positive margins then one might immediately opt for adjuvant radiation treatments and perhaps ADT. However, it appears to me that most men seem to take a "wait and see" attitude post-surgery no matter what the pathology shows. In other words, they undertake active surveillance of their cancer, waiting for PSA tests to determine if and when other treatments will begin.



As a brachytherapy patient, I don't know if my Gleason 3 + 4 was really a 4 + 4 but that doesn't bother me. What I want to know is that my PSA keeps dropping to a nadir and any other information would have been interesting but not actionable.



So...what am I missing, guys?



Jim

Jim those are good points and it's something I've always pondered myself. What value is receiving a post op path report. What difference does it realistically make? Almost all further treatment is based via monitoring the post op PSA anyways.

about the only issue I can understand is reassurance from a report that states confined within the gland, but even those aren't always reliable.

Post Edited (Squirm) : 11/5/2012 10:34:42 PM (GMT-7)

Posted 11/6/2012 3:16 PM (GMT 0)
Thanks all for the thoughtful comments. I've tried to be worthy of your thoughtful input by making a thoughtful decision. I've decided to go the radiation route (perhaps with seeds--as I continue to work that out, it's my preference) in conjunction with hormone therapy. The 50-50 chance of doing both the surgery and radiation was just too much of a chance for me to take. At the end of the day, this is what felt right for me and if there's anything I've taken away from the comments on this thread and similar ones is that you have to go with what feels right.

Having made a decision makes me feel immensely better. Now to get with the process of getting rid of this crummy thing!
Posted 11/6/2012 5:40 PM (GMT 0)
Michael,
Glad to hear you finaly made a decision. The hardest part is now behind you.
Tud,
I agree with your points. I have always felt that the additional information was not worth the price to be paid. Also given the fact that a high percentage of negative margins progress anyways in the higher grades and many positive margins don't progress. Post op pathology is better than biopsy pathology, but no where near 100% probability as many believe.
Your point as to Gleason grade being upgraded or down graded is pretty worthless after the fact. After the fact the only thing that matters is if psa is going up or is stable. If it rises it doesn't matter what the post op pathology showed.
I would prefer to relie on a good non-invasive scan for information rather than a radical procedure noted for a high probability of complications and side effects.
Posted 11/6/2012 5:44 PM (GMT 0)
Ok, decision made, now move on to preparing both physcially and emotionally for the treatment planned. Don't second guess yourself unless something really major, I mean huge comes up to alter your research decision. Good luck, and a successful treatment.
Posted 11/6/2012 6:00 PM (GMT 0)
Good - that's the hard part done. Now get it done and don't look back on the choice.

The important thing is you carefully considered your options.

Here's hoping the first radiation treatment knocks this stuff out.

All the best,
Andrew
Posted 11/6/2012 7:18 PM (GMT 0)
With a Gleason 9 I'd go surgery first, if there are close or positive margins then radiation. That's what I did with my G7.
Posted 11/6/2012 8:05 PM (GMT 0)
Hello again Michael - and congratulations on making your decision on a treatment path!  You have now progressed to the next level of this wonderful journey, and I can tell you for me it was like a huge weight take off of my shoulders, hopefully you are feeling the same! 

O.K., now that you have gotten to this point, as others have mentioned - Don't Look Back or Second Guess yourself.  You've done a great job researching this beast and the available treatment options available, weighed all of that as well as how YOU feel about everything - so feel good about that and move forward!

Keep in mind as you continue down this path that we're all out here to continue to provide help and support.

My very best to you!

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