Update: Bad news from a good team

I posted my recent progress a couple weeks ago and promised I would give an update. As stated before, I had HDR brachytherapy about a year and a half ago. PSA never dropped very far, and rose from 3.2 to 5.67 from last November to early June this year. You folks gave me lots of good ideas on what to do next - thanks to all of your for your thoughts. Here's the update:

I spent the last 3 days at the Huntsman Cancer Institute in Salt Lake City (I live in the Boise area). I'm very impressed with the team, the knowledge, the caring attitude, and the beautiful facility. They take a team approach to cases like mine and I was the subject of a "tumor board" meeting with inputs from their entire group. I'm really sold on using a team like this vs. seeing a single doctor.

Unfortunately the news doesn't look good. As part of the visit, they did a new PSA test and a bone scan. The bone scan, as expected with my "low" PSA level, was clear, but my PSA rose from 5.67 in early June to 7.4 less than 3 weeks later. That news set my wife and I back a lot, and I'm still trying to find some balance. I guess we were really hoping for a prostate infection or some other reason for the PSA rise.

I spoke to their top surgeon and he thinks that if we can show the cancer is still localized, I'm a good candidate for salvage prostate surgery. While my initial PSA and biopsy didn't make it likely that the cancer had spread before treatment, the fast recent rise probably means it was or is already outside the prostate, so this is probably a moot issue. However, he thinks my numbers are still low enough to make it a possibility. We went into detail about the possible ugly side effects and risks, but if it could mean a cure, it could be worth it. On the 3rd day, after the PSA work came in from the previous day's blood work, they immediately cleared a slot for me and did a new biopsy. I'll have the results next week.

I also met with their top medical oncologist. He agreed that if the biopsy shows the radiation simply failed and the cancer still appears to be localized, it's worth the risk to try the salvage surgery - but he thinks this is unlikely (so do I). If it appears after the biopsy results that the cancer in my prostate was indeed killed by the radiation then clearly it's metatstatic, and my only option is ADT. The plan would be to monitor my PSA until it reaches 20, then do regular scans and start HT once either scans or symptoms indicate it's time to proceed. They seem to have a wide variety of tactics for improving the effective time of the HT. I'll see what they recommend when it gets closer. For now, I'm happy to avoid the side effects of HT for a little while.

New data I heard said that if my PSA is below .4 after 7 months of HT, there is an excellent chance of 8-10 years before HT fails, and they said this is true for about 40% of men. Another 35% have PSA between .4 and 4 at that time and typically have 4 years or so before HT no longer works and the 25% that are above a PSA of 4 at that time have significantly less time. I'm very interested in data that supports or refutes these ideas, along with other ideas you may have on how to prepare mentally and physically for what lies ahead. I've lost about 13 pounds since the early June news and I'm running 5-6 miles a day (if you can call a 10-minute mile running). I understand I'll have to continue to watch my diet closely and should start some strength training to keep bone density once HT starts.

I'm obviously bummed and scared by all of this. I thought the PCa was in the past after the HDR. Still, I may have many years to come and I certainly have a new-found desire to stop simply existing and start really living. I have a huge number of blessings in the support I'm getting from family, friends, and my employer, and I'm excited to see how much living I can do with a change in focus.

I'll let you all know what we find from the latest biopsy and give an update once in a while - hopefully without being overbearing. I know I get a lot from the posts others have made and just want to do my part. I'll be searching for expected life spans of men whose primary treatment didn't cure the cancer, as well as tips for dealing with the present.

Thanks for listening, for being there, and for the fight you put up. I hope to have the courage and fight that you do, while enjoying every day to its fullest.

Greg.

Greg, thanks for your update. 

I feel for you with regard to the tough decisions you face.

Very best wishes...

Thanks for the replies and support.

Peter: Nothing on any imaging done so far. The docs feel that though my numbers were low it must be that the cancer had already escaped the prostate before the radiation treatment. I've done both a CRT and a bone scan. May add PET and MRI, but they think with the fast increase in PSA that either the radiation simply failed and it's still in the prostate or it spread but is too small to detect.

Allen: I did antibiotics for a week before the visit and I'm still on them. The docs, however, said that the numbers show it's not just an infection. Rats - that was my best hope. Since I had HDR radiation, I don't think I'm a candidate for any other radiation.

I understand you did monotherapy.   Before I would look at surgery, I would determine whether IMRT/IGRT would be in order much like failed surgery salvage radiation therapy.   I think post radiation surgery misses the point and opens you to an extremely high risk situation regarding efficacy and side effects.

Perhaps you are systemic and HT/ADT is indicated.   Why wait?   Many of us have been and are on HT and there are worse things.   If you are likely to do this in the future, then why not now??

As you can see I did HDR, but I was high risk and hit it with much more.   It may be that you need to jump on this now.   Many oncologists posit that the harder you hit this stuff at an early stage the better you will do.   Why wait until it has strengthened and is harder to kill?

I wish you well,

Jack

I understand you did monotherapy.   Before I would look at surgery, I would determine whether IMRT/IGRT would be in order much like failed surgery salvage radiation therapy.   I think post radiation surgery misses the point and opens you to an extremely high risk situation regarding efficacy and side effects.

I think they are presenting the chance of the PC being local -- failed HDR -- as a very low probability.  the really sad thing is if  the cancer had ecaped to the prostate bed a combination treatment like you and I received would appear to have been a much better choice.  but I don't know all the details and it's water under the bridge now.  I hate to read stuff like this and I wish the best for the OP.

ed

 

Greg,
They have been using the C11 PET scan to some success in identifying if a reoccurrence is local or systemic. I would check this out before you do anything. Regarding salvage surgery if it is local: there are a lot of other less morbid options, such as reseeding with LDR brachy, cyberknife, or even HIFU.
Regarding your question on HT; the only study I know of is from Scholz/Lam that showed a nadir of .05 that held for at least 3 months indicated a significant survival benefit.
The rapid rise in PSA is not consistent with a local reoccurrence.
Good luck and a visit to someone like Scholz or Myers would be a good next step.
JohnT