Treatment Team Meeting Complete

So Carol and I did our treatment team meeting today. It was pretty cool to have the different specialties together and I made it a point to bring up the lack of consensus they have on treatment plans. Doubt it will matter and certainly isn't an issue in my case. Turns out the colectomy surgery I had in 2005 would complicate prostate surgery because scar tissue tends to attach itself to nearby tissue. Dr Duffy (Urologist) at SAMMC said he would try if I wanted but it would have additional complications.

Dr Wong (Radiation Oncologist) recommended radiation and HT saying I wasn't a good candidate for surgery, because even if I did, there would most likely be a recurrence.

A Lupron injection regimen (every 4 months) for two years, casodex in pill form and will start 9 weeks of EBRT for 9 weeks, 2 months after the first Lupron injection.

I'm a pretty thick skinned guy having been through more than my share in life and welcome any discussion about my decision so others can learn the difficulties of deciding on a treatment plan.

Still at the beginning of this ride but alot more relaxed now that there is a plan in place.

Glad you had a good meeting. HT and radiation makes sense, but I'm a little surprised they're not talking about a brachytherapy boost to your radiation. I'm not one of the guys here that can quote studies, but I'm pretty sure there's evidence that could be more effective for high risk guys. You have time to figure that part out--the important thing is that you're starting HT now.

On that front, you can find many threads on HT here. It's not a walk in the park, but I think most here can agree that you can power through. For what it means, I had Zytiga added to the Lupron/Casodex combo. That's not common, but my oncologist felt it had some benefit. (And my insurance paid for it, as it's an expensive drug.)

Good luck with everything--you can still do very well as lot of other G9s here can attest! I do hope someone else comes by with comments on adding a brachy boost to your regimen.

I think most people here would agree that surgery may be problematic in cases where there's a good chance that the cancer has moved beyond the prostate, such as a G9. I had the same thought process.

But I'm a little puzzled why brachytherapy is not an option as a boost to your EBRT--as Tall Allen mentioned combo treatments can work well in high-risk patients. It seems like you've done your research, so personally I'd want to know what the reasoning is. Do you know if the RO performs brachy? Not all ROs do...

First of all, yes my mind is made up, thank goodness. I'm determined to not look back and second guess if I should have asked other people for opinions or thoughts on alternative treatments. Dr Wong responded saying she would reserve brachy radiation for low risk patients. I don't fit in that category as my signature describes. Am I workng without some proof of my opinions? Yes. Without consensus between fields of practice and having to trust a reference to who is the best doesn't carry any more weight. So I have decided to trust the radiological oncologist I spoke with directly and used my communication skills to justify her as someone I could trust, in person.

Thank you'all for responding. Since signing up to HW the support given to me personally has been exceptionally positive and informative. As all of us here, I have a few unique circumstances that have led me to the treatment plan I started this week. From the day I got the telephone call from the "resident in training" (for a mere 2 months) to the follow up meeting with her I don't think I slept more than 3-4 hours a night and was getting pretty frazzeled. I didn't get the answers I needed to get a clear picture of my situation so I continued researching at every available opportunity. Frankly the range of opinions for a G9 with one lobe effected was astounding to me. By the time we went to the treatment team meeting I was prepared enough to understand what they were recommending. Surprisingly (to me at least) they all echoed the conclusions I had come to. The most important reason for making a decision now was that I found myself getting lost in the details and started to take that downward spiral of depression. It certainly isn't because I disregard any of you'alls recommendations. I'm sure all of the experienced members have helped many before me through this process.

At any rate enough of the rambling.

I feel a little light headed after taking the Casodex in the AM and this lasts for most of the day. Other than that I feel normal. Keep in mind I work in a fast paced environement and don't have a whole lot of time at work to dwell on my own personal situation.

As I progress with the Lupron and Casodex this may change. I'll update again when radiation starts.

RioMedinaBill,

I have been pretty much exactly where you are right now, both with the disease and this forum. Our numbers are strikingly similar, as is the decision process and the choice of treatment plan.

Tall Allen and I have had a number of discussions about the radiation plan of seeds plus IGRT, vs. only IGRT. There are studies (a commonly presented graph here is a "metastudy" compiling a lot of other studies) that indicate seeds plus IGRT may be better together, but when you try to really dig into the specifics of those studies they are very hard to find. Those studies seem to often be presented by brachytherapy groups, so their objectivity is a little suspect to me. Also, the very high risk group is so small they can't get good stats for us, so they lump us in with others to create a "high risk cohort", including such things as PSA>20, any cT3, or GS>7. Note the "or" in there. When really pursuing the details, like what was the outcome for MY situation, it's not there. You can't find it. You have to look at the actual study, the actual cohort, virtually down to the outcomes of the individual cases. It's not usually enough to look at abstracts of the studies since they don't have enough detail.

Anyway, due to some of the recommendations from those on the forum, I argued hard with my RO about this. I took the studies presented to me on this forum to the RO and said, "Well, what about this?". He had good answers, usually on the order of "it's not that simple", and increased side effects aren't supported by increased benefits. The sometimes passionate interactions with forum members here, while often helpful, also added a good deal of stress. The tone is "Here is the best thing, why aren't you doing that?". As you've said, we discuss, challenge, get to know our RO and decide if we trust their experience, their judgement, their clinical outcomes. This forum is best when it helps us with questions to ask our docs.

Vanderbilt University is a regional referral center, and no slouch when it comes to prostate cancer. Their clinical experience with seeds + IGRT is that it significantly increases the risk of side effects, primarily urinary strictures, without much proven benefit. They treat patients coming to them presenting with complications from treatment elsewhere, and are well aware of the physical results of various treatment plans. Their recommendation was to do the well-proven path of IGRT by IMRT. They use a Varian Trilogy with RapidArc, less than 15 minutes per treatment session from walking in to walking out.

Two years later, I have an undetectable PSA, and no side effects from radiation treatment. Never had any, except urinary urgency at night toward the end of treatment, which resolved in a couple of months after. Given my diagnosis, I was very uncertain what my future looked like, and I'm very pleased to be here well over 2 years later with a situation this good.

Now lurking in the background, we still have the forum. I stay here to help folks like you specifically due to our unique concerns. Unfortunately the people who are here saying "you should do seeds+IGRT" always have the option to do a "told ya so" if recurrence does happen. Obviously, a G9 cT3a has a MAJOR chance of recurrence no matter what treatment is done, so that's always going to be there.

You're adopting the attitude I find best, my brother. Develop a plan you understand and believe in, with doctors you've vetted and that you trust. Launch that plan, and don't look back.

We're here for you. Feel free too, if the aggravation exceeds the benefit, to move on. This forum is full of great guys, but it is just a forum of guys with the same disease. In cancer, you'll find the mindset valuable to only do what you find helpful!

Jerry