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Decision made. For better or worse, here I go...

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Posted 12/1/2016 4:50 PM (GMT 0)
After four months of truly excruciating back and forth while consulting with a variety of eleven Uro/Surgeons, Radiation Oncologists, and a Medical Oncologist I have had made my decision and will be undergoing a combination treatment of surgery + external radiation + ADT, and possibly, chemotherapy.

What a journey just getting to this point has been. The interesting part is that I'm right back to where I started when diagnosed by the Cleveland Clinic this summer. The tumor board at the Clinic studied my case and recommended this very treatment path at that time. One thing that made it so difficult for me though was my reading so much about the success of HDR/LDR brachy + external radiation for high risk guys while the great majority of doctors Uros and ROs both kept telling me that based upon what they know and their experience, in my specific case, with my specific amount of cancer, the surgical removal of the prostate as part of a combination plan appears to them as my best shot at cancer control/remission/long-shot but still possible, cure. The contradictions in my mind based upon my research finally became so overwhelming that I broke down and consulted with an MO to see if maybe they could make some sense of it all for me. I truly expected going into that consultation that the MO would give me the backing I needed to feel comfortable with deciding on radiation despite what the majority of doctors were saying. The MO did just the opposite and while they said radiation wouldn't necessarily be a "poor" choice and could work out for me, they actually provided me with a good explanation of why based upon their experience, they too agreed that surgery to remove my heavily involved prostate gland was the better choice in their opinion.

So, I'm a 51 year old guy with a very ugly diagnosis of aggressive PCa but every reason in the world to want to live as long as possible . Unfortunately, I've found for those of us very high risk guys, choice is much more limited and comes down to more about what, if any, treatment might save or prolong my life as opposed to any treatment will work so just chose on the basis of SEs. Honestly, I still wake up in the morning hoping that I just had a nightmare and I don't need to go through any treatment. Since that it not the reality, I am taking a leap of faith and making my decision based upon everything learned.

My surgery will be performed by Dr. Eric Klein (thousands of prostate surgeries) at the Cleveland Clinic possibly as early as December 19th. Now I need to really read up on the surgery discussion threads here. I'll keep the board posted on my progress and am truly appreciative of any thoughts and/or prayers people here can send my way.

Thank you,
Bill
Posted 12/1/2016 5:41 PM (GMT 0)
Bill:

I feel for you. The one problem for us analytical type is paralysis by analysis, or maybe just running around like a headless chicken.

When I made my decisions, calmness return. In fact, although surgery and SRT failed in my case, I've never looked back nor regretted any of my decisions. You can only gather information and try and call the shot with the information you have at hand.

I think decisions these days are a bit tougher.

In my day, which is ONLY 7 years ago, it seemed that surgery was still touted as the "gold standard" and radiation (IMRT) was a very real choice also. Seeds, HIFU, and a few other txs. seemed more peripheral.

Mel
Posted 12/1/2016 5:55 PM (GMT 0)
We are all wishing you the very best. It's a difficult choice, but it seems that you are opting to hit it very hard. Something you said was very interesting to me -- that with a lot of the prostate involved in the cancer, surgery is recommended to get it out. My surgeon said much the same. Although I was "only" G 3+4, the pathology showed that 75% of the gland was involved in the cancer. He said that with so much cancer, radiation alone would not have been a good option. My surgeon happens to be totally enthusiastic about surgery and negative about radiation. So I wondered when he said that whether this is the generally accepted view, that with a lot of cancer, surgery is needed to get it out.
Posted 12/1/2016 7:17 PM (GMT 0)
Glad you made a decision.

That is often the hardest part.

Now it's just a matter of following through.

Andrew
Posted 12/1/2016 8:09 PM (GMT 0)
S-P, I totally understand the agony you've been through in getting to this point. You were presented with a nearly impossible situation and had to begin getting to some closure about what you wanted to do to have the best available control of your situation. I admire your focus in doing this, as I am sure I would have been a total basket case had I been presented with your diagnosis. You are yet another man on board here, who has earned the respect and admiration of the rest of us.

I sincerely wish you only the very best in care and outcome, and humbly ask that you keep us posted so that others who may follow in your footsteps may have the benefit of your story.

Thank you.
Posted 12/1/2016 8:58 PM (GMT 0)
Congratulations on making the decision! I know you worked hard on this. Did you ever meet with Martinez?
Posted 12/1/2016 9:10 PM (GMT 0)
I wish you a full and speedy recovery and hope that you are at peace with making a decision under very difficult circumstances. My hopes and prayers are with you.
Posted 12/1/2016 9:41 PM (GMT 0)
Thank you all for the thoughts and responses.

Mel - I admire the no regrets and want to be in that place as well.

Fiddle - That is somewhat similar to what was explained to me. Most of the ROs though never said that radiation was "not a good option". Instead, they said that because I have a high volume tumor they felt that there was a possibility that there might be a couple of radio-resistant cells and/or that smaller tumors respond best to radiation. It seems they feel radiation would probably work, but feel surer that physically removing the tumor and nodes and then doing pelvic radiation had an advantage.

TA - Yes, I did meet with Dr. Martinez. To be fair, he is the RO who told me unequivocally that HDR Brachy was the way to go. If I went that route, I would likely do so with him. The idea that it could be the way to go tore me apart because the majority are saying to start with surgery. I just can't overcome the fact that really only one of the eleven doctors I consulted with felt that radiation is where I should start.
Posted 12/1/2016 10:43 PM (GMT 0)
Man I wish you the best outcome, just stay in as good a shape as possible and stay positive.
Posted 12/1/2016 10:57 PM (GMT 0)
Bill:

My situation was, in many respects, similar to your predicament except I had a couple of bone mets. Before moving my case to MD Anderson, I was told that there was nothing to do except HT. However, MD Anderson took a very aggressive approach which involved HT, RP and RT. My last HT shot was in 2/14 at which point my MO decided that I should try to take an extended holiday from all treatment. I have been on that holiday for 2.5 years and my latest (11/2016) psa came back at .1. So I am still on holiday. Since I experienced quite a few SE's with hormonal therapy, my extended vacation has helped me get back to a more normal life. At your age I think it is totally right to take the very aggressive approach you have described. Hopefully, you can beat this disease or at least experience an indefinite, durable response.

Good Luck and feel free to send me an e-mail if you want more details.
Posted 12/1/2016 11:15 PM (GMT 0)
schoolpsych-

I know that you made a well-considered decision about the therapy that is right for you, and that it was not just a popular vote (I'm sure that other brachy boost therapists like Zelefsky at MSK, Merrick at Wheeling, Kamrava at UCLA, etc. would have "voted" along with Martinez, thus increasing the numerical advantage of that therapy). I've found that specialists usually know only about their own specialty, and not about other specialties (although that seldom stops them from having opinions). I think that talking to an MO when curative therapy is being considered only adds to the confusion - they are not specialists in any therapy that is useful for patients pursuing a cure. This leaves the patient in the difficult position of having to decide for himself. And it is a difficult position. This is the downside of patient empowerment - the patient accepts responsibility for his own health decision. This is a decision that no one but you can make. And you've done a great job of gathering the info you need to decide for yourself. I admire that - too few patients do that.

I assume you had the fluoride PET scan and got an all clear. I guess there's no point in continuing on Lupron now, which I'm sure must be a relief to you. Will Klein perform an ePLND, and will he use fluorescent dye to find them? Will you wait for a first uPSA before adjuvant radiation, or will you do that regardless?
Posted 12/2/2016 1:32 AM (GMT 0)
Bill, glad you've landed on a decision--I know it's been quite a journey for you. It's hard to fight a battle without a battle plan and I'm glad you now have one in place. All the best to you as you move ahead! I'm sure you'll do well.

Michael
Posted 12/2/2016 1:56 AM (GMT 0)
Bill the fact that you've done so much due dilligence, and have arrived at such a well thought out decision, will be a huge help to you, in going into the surgery with great confidence. You are in good hands, and will likely have a good outcome.

Between now and Dec 19th, do three things...
a lot of walking, even running if you can. in other words lots of aerobic conditioning
work on your core muscles, crunches situps etc.
Have a LOT of sex. As much as possible.

Good luck, i'm sure you'll be fine.
Posted 12/2/2016 4:07 AM (GMT 0)
Hello schoolpsych,

Your situation and time of dx is almost the same as my husbands. We also had a hard time deciding. One very experienced urologist told us that one reason why RT wasn't a good primary therapy was because the prostate was so full of cancer. I think you were told something similar.

Regarding ePLD, there is an interesting new publication just out that reports biochemical free survival is much better with neoadjuvant HT than with no neoadjuvant HT and ePLND.
https://www.ncbi.nlm.nih.gov/pubmed/27889880

I wish you the very best.
Posted 12/2/2016 9:43 AM (GMT 0)
Annie-

In the study you cited, they didn't just receive neoadjuvant ADT, they received either chemo + ADT+ RP + limited PLND or RP+ePLND, and it may well be that the men who got ePLND were the ones diagnosed with enlarged LNs. It's hard to draw conclusions.

A similar trial of chemohormonal therapy prior to RP found no significant difference compared in biochemical recurrence compared to historical data:

Long term oncologic outcomes of a Phase II trial of neoadjuvant chemohormonal therapy followed by radical prostatectomy for patients with clinically localized, high-risk prostate cancer

There is a randomized trial in Toronto now of Jevtana+Zytiga+Lupron+RP vs Zytiga+Lupron+RP to see if chemo adds anything:
Anti-Androgens and Cabazitaxel in Defining Complete Response in Prostatectomy (ACDC Trial) (ACDC-RP)

When added to EBRT for high risk, chemo had a very small positive benefit (If I recall correctly, 5-yr bRFS increased from 89% to 92% with it), so I'd expect no more than that if added to RP.

As far as hormone therapy (without chemo) goes, there was a randomized trial of RP+flutamide (an antiandrogen) vs. RP alone that found no survival benefit to the additional hormone therapy

Prospective Randomized Trial Comparing Flutamide as Adjuvant Treatment versus Observation after Radical Prostatectomy for Locally Advanced, Lymph Node-Negative Prostate Cancer


As for PLND vs. ePLND, most of the data come from Europe where ePLND has been more standard. With the advent of better detection techniques, it is becoming more popular in the US. In cases like schoolpsych, where he is known to be N1, there is a direct correlation between the number of nodes removed and survival:

More Extensive Pelvic Lymph Node Dissection Improves Survival in Patients with Node-positive Prostate Cancer

Anatomical Extent of Pelvic Lymph Node Dissection: Impact on Long-Term Cancer-Specific Outcomes in Men with Positive Lymph Nodes at Time of Radical Prostatectomy

The trade-off is that complications from ePLND are greater than PLND. If there are complications, it is usually lymphoceles or lymphedema that is transient, but there may be serious cases too.
Posted 12/2/2016 3:01 PM (GMT 0)
Hi SchoolPsych,
I am sorry that you find yourself here but you came to a good place. There are lots of smart guys who have already provided you with invaluable information.

I don't have much to offer except to say that we are traveling similar paths. Wishing you all the best and hoping for a great outcome. Take care.
Posted 12/2/2016 11:01 PM (GMT 0)
with your numbers that's was way more time than I would have been comfortable with. anyhow you've made a decision. best of luck to you.

ed
Posted 12/3/2016 4:22 PM (GMT 0)
Bill,
Good luck. You are on similar path to the one I traveled; diagnosed at age 50, PSA in the 50s, G9, everyone including the RO recommended surgery + radiation + ADT and eventually chemo. Six years later I have no signs of prostate cancer. However, expect a fairly heavy side effect profile. Best wishes.
Southern Comfort
Posted 12/5/2016 11:46 AM (GMT 0)
SchoolPsych-our thoughts go out to you. Best of luck on your journey. Keep a positive outlook, stay strong. You will do well.
Posted 12/5/2016 5:26 PM (GMT 0)
Thank you everyone for the great and helpful responses. 14 days to go...
Posted 12/6/2016 6:53 AM (GMT 0)
I just came across this Russian study. In contrast to the evidence I cited above, this study found there was a significant benefit to pre-treatment with low-dose docetaxel prior to RP. Maybe send it and the other one to Klein to get his opinion.

Neoadjuvant Chemotherapy Using Reduced-Dose Docetaxel Followed by Radical Prostatectomy for Patients With Intermediate and High-Risk Prostate Cancer: A Single-Center Study
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