Doubling Time questions

AK123
Some thoughts. We look to be the about same age - I am 64. and was diagnosed just around my 59th birthday. You were fortunate to have had a slower recurrence than me. I did not have positive margins nor EPE but had a 4+3 and which was mostly a '4' so I consider my gleason nearly an 8.

I am not nervous or scared - since I have done a lot of reading and research. I am not saying you should not be scared or nervous, but I will share some thoughts with you that might offer you some comfort.

In my case my psa was never above about 4.5 and all my doctors have said that with this low psa, and with doing the radiation early, the likelihood of dying from this disease is low - at least for the next 15-20 years. Further, I know that ADT will manage the disease for a few years, perhaps longer, and then there are chemo treatments that are effective, plus some of these are now approved for patients like us. In fact, some of these can be used without hormone therapy which is my goal, since I already have osteopenia and I don't want more bone loss. I also will consider a clinical trial with a vaccine, that SK is conducting - a psa of 0.8 is required. Eventually I will get there. Interestingly, my urologist is the only person who has said that my psa can still drop - he has seen this occur even after 2 yrs post radiation. I doubt it.

What bothers me but does not scare me, is that I need to figure out the best treatment plan for me. ?Sure I consult with my MO, but I am the type of person who takes a very active interest in my medical conditions, and I try to take an aggressive stance in figuring out what the best course of action should be. So there is effort I need to expend in doing all this - and it is time consuming and not fun, and that is the part that I dislike. I just cannot leave it up to my doctor to tell me what is best without me researching it somewhat.

I am also hopeful that by the time we both need further treatment, current drugs etc will be more established and new ones developed and in trials, so the outcomes will hopefully be more favorable. I am trying to get on with life, and sort of look at all this as a nuisance to deal with, rather than a doomsday curse. My wife and I keep our adult kids informed to a reasonable extent and I don't let this get in the way of having a good retirement.

Sure it sucks to have to deal with this, and I wish things were different. But when I think about what medical issues others have, including folks I know, this does not seem so awful. For me, and not necessarily for you or others, it is important for me to have no regrets regarding treatment or taking action. This is why I wanted the scan early, even though likelihood of finding anything was low. I did not want to face the possibility down the road of ' if only I had the scan earlier'.

Hope this helps. You can send me a private message if you need more insight

Teddy

Thanks again teddy for your thoughts. It is very comforting. You said it might take
15-20 years before it gets us but I am trying to understand what are the treatments that
Will last 15-20 years. You said ADT can last for a few years. After that there is chemo
Which I know it does not last long and even immunotherapy only
Lasts a year or 2, so just wondering about the 15-20 where do they come
From?

Ak123 said...

I have heard it takes 8 years for Mets from the time psa starts to rise after surgery & SRT

There is no meaningful timetable for this for individuals.

First and foremost, understand that it is impossible to know when metastasis starts. It is not even detectable until it has doubled many, many...possibly many dozens of times. It is impossible to know when this started. Period.

Second, the rates of metastatic development vary dramatically from person-to-person, case-to-case based on differences in individual human biologies.

It may be true that you saw somewhere that (as you wrote) "it takes 8 years for Mets from the time psa starts to rise after surgery & SRT," but more likely than not that summary came from data which might have worked out from examining 5 cases something like this (illustrative examples):

• Case 1: 1 year
  
• Case 2: 3 years
  
• Case 3: 8 years
  
• Case 4: 10 years
  
• Case 5: 18 years
  AVERAGE = 8 years

Would data like this be meaningful to any individual? No. And your question of which is the reported baseline start-point really doesn't matter, because as I said the actual micro-met start time is completely unknowable. It would be completely unadviseable to use any sort of "average time to mets" number for anything except retrospective study of large populations.

Post Edited (NKinney) : 6/2/2018 7:34:07 AM (GMT-6)

Teddy9,
How can I send you a private message like you suggested please ?

Thank you very much Teddy. Your comments are extremely encouraging and
Up lifting. The strange thing is I never heard them from anyone of my
Doctors. I never asked though in terms of how many years left for me but when
I hint, I just get you will be ok. That is it. I have learned a lot from guys here
On the forum and the reply was something like” we see patients go fast and some
Last, hard to tell”. So to say the least, I was scared and nervous especially after
RP and SRT both failed. Thanks again