I had a great meeting with my Onco today. Just a little recap; in September (my last visit with him) my PSA was 2.2, today my PSA is 3.9
For those that don't know, my doctor is the head of Oncology at the MD Anderson Cancer Center in Orlando and his area of expertise is PCa.
Now I recognize that what I am about to relay to you may fly in the face of some of the expected norms and practices, but I like the way he explained it, it made sense to me and fits into my frame of mind in dealing with MY PCa.
When he came in he had some very nice charts and graphs of my PSA tracking as well as the MSK Nomo for the velocity/doubling time.
My DT computes to about 4.6 months. I mentioned to him that it was interesting that he was handing me a MSK Nomo. I asked him how MDA didn't at least have their own. He chuckled and said we all use theirs, we all contribute the stats to them that keeps it current and we all let them spend the money on the servers and so forth that make it accessible. We don't need our name on it. The number is what it is and we all compute it the same way.
I like this guy.
We spent quite a bit of time talking about how I feel, physically, mentally, in my role as caregiver for my wife and so on. I told him that I am feeling better than I have felt in the last 2-3 years. Lots of energy, stamina, I love my weight loss down to 185 from 215, interest in doing things that I had put aside for a couple of years (like boating and fishing), overall I told him I feel too darn good to have cancer.
We discussed a couple of things that seem to have changed as relates to continence and ecch!! bowl movements. He asked a lot of questions, I answered them honestly and at times graphically (by necessity). He feels that these changes are the result of my SRT, but went on to say that this should be about as far as it goes. In his experience about a year from SRT and the changes should settle in to where they are. These are changes I can live with as long as they don't worsen any further.
So we started talking about where do we go from here. He totally floored me at this point.
He said that my last bone scan and skeletal survey were done in May 2010 so he wanted to see me in May 2011. Wants me to have another set of scan and PSA test then.
Okay my learned brethren, this is where I came up out of the chair and asked him about HT. Okay, put your teeth back in your mouth. Yes, I asked him about it. Now don't get me wrong, I still don't cotton up to the idea on going on HT, but I was surprised as hell that he wasn't ready to jump on it given my PSA.
I asked him to explain, given that almost everybody it would seem, from the posts here, has doctors that decide 0.20 is the time to call it BCR and jump on the HT express.
He said that I wasn't experiencing BCR, I have never gotten rid of the crap in the first place. He said that he and the others there treat each PCa as any entity unto it's own and how each patient responds to treatment on an individual basis.
Hey! Isn't that what all of us keep preaching? Nobody responds to treatment the same as the next guy, everybody's PCa has a mind of it's own and each PCa no matter how similar to the next is still it's own little beast. Some more aggressive, some not and some that try hard to follow the expected norm. Hey, I am a Gleason 7 and there are plenty of you that are GS 9s and you have no issues, you still are PSA undetectable and the word METS is not in your vocabulary.
So I asked him to explain my case and his recommendation. He said yes you have had a MET and that one was a little earlier than most. NOT ALL MIND YOU, but most. He is convinced that the radiation took care of that MET.
I asked him where in the world is the high PSA coming from. This was his analogy.
YES! you have a lot of PCa cells in you body no doubt. It takes a lot to keep the PSA going up. But they are like a lot of little travelers, going along on their own just cruising around the countryside and their collective numbers of population show up in the PSA. BUT! they are like travelers. By themselves they don't cause a lot of trouble, they don't have the crowd/mob mentality. Now put a bunch of travelers in a snow bound airport, make them sleep on the floor, tell them you don't know when they will ever leave and don't feed them and that crowd mentality is going to kick in. Collectively they will join together and raise such a noise, cause destruction, set the place on fire and continue destruction until you call in the National Guard.
He likes the fact that my travelers are still on their own.
He went on to say that there is no doubt that HT or something akin to it IS IN MY FUTURE CONSIDERATION. But not know. He is treating my cancer and me as the patient. So he will wait until May, do the scans, check the PSA, reevaluate the issue and we will proceed from their.
This all makes sense to me. He doesn't see me in any danger and doesn't see this time frame of one that lets the horse out of the barn. He did say though, that I would need to really stayed tuned to my body, my mentality and so on, so that if any changes begin to occur I can contact him and we can check it out.
Lastly, I told him that I was about 16 months post surgery, and I was beginning to see really strong improvements in the ED department. I told him that Lynn is receiving blood transfusions and is getting more energy and feeling better by the day.
I told him that I really appreciated him letting me (NO HT NOW) take this new found improvement out for a test drive before he totally emptied the gas tank of the engine.
You all now that I have stated my reluctance to HT because of side effects. I am all about QoL. And for me that stands for Quality of LIFE. Reminds me of a talk I had with my boss many years ago. I had been promoted to manager and he was chiding me about not being there an hour or two before the others in the morning and then being there long after the others had left in the evening.
I told him that I worked to enjoy LIFE. I do not LIVE to work. I try to enjoy life each day to the max. I don't want to be satisfied with seeing the sun come up each day and considering that one a success. I want to use each day to enrich my life or someone else's. It is all about LIFE and not merely existing for me. Okay off the soapbox.
I would like to throw one thing out there for discussion amongst you more knowledgeable HT brethren. His PA mentioned in the meeting that since I lived so close to the facility, maybe I would be a good candidate for Degarelix as opposed to Lupron.
He said they both work to limit the production of Testosterone. They both have side effects and that most of the side effects come from the reduction of testosterone not from the drug itself. If you monitored a patient on Lupron you would find that the testosterone numbers fluctuate up and down. This is why the Lupron patient reports having good and bad days with side effects and sometimes within the same day. The Degarelix knocks the Testosterone down and at that point it mostly flatlines. There is not the fluctuation. So the side effects are more constant. In his experience the Lupron side effects are somewhat less and easier to tolerate. Does this make sense to you guys? It did to me.
So there you have it. This is a long post, but I felt the subject matter and the meeting was one that was worth investing the time into.
Every Day is A Bonus, and I Love You Guys,
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9