Questioning MO's treatment plan

My initial reaction is that his definition of "doing fine" is considerably different than mine. Fortunately I have known very few men when their PSA was in the thousands, but the ones I know were not doing fine.

When to treat, how to treat, when can you be cured or at least be in a long and durable remission? All the great questions. There is something to waiting until mets can be found and treating them, but I think that would come long before you got to PSA of 20. Has he discussed adding chemo per the CHARTED findings? HT is not the end of the world.....remember that only happens once!! I know that HT is doable as I did for three years. Often in a case like yours it can be used intermittently, combined with chemo, introduce Provenge, and second line HT therapies and get a lot of good.

It sounds like to me he is talking about treating you on a palliative basis rather than on seeking a strong remission or cure basis. You have to decide which you desire. At your age, heck at my age, I know what I would want. You may have to se another med onc to determine the direction you choose.

I suggest you check in with Gunner who uses Dr. Kwon at Mayo for some perspective. Kwon treats aggressively especially with young advanced guys and has established a great reputation in that realm.

I think your MO makes a lot of sense, and reflects the latest thinking on the subject. There is no evidence that starting on hormone therapy before mets are detectable (or at least until PSA is high, or is very rapidly rising) accomplishes anything. Why suffer the SEs of hormone therapy before you have to, especially if there is no survival advantage to doing that?

PSA of 20 is when bone mets can reliably be detected by a bone scan. It makes sense to zap them when they are large enough to become bone-scan detectable because that can help prevent pain and skeletal injury. There's really no evidence that detecting mets earlier and zapping them earlier accomplishes anything. When they are detected, he may also want to start hormone therapy along with Taxotere - that is the new standard of care.

For now, you have to think of the disease as systemic and micrometastatic. Those micrometastases will eventually take root and grow in various places, and there's nothing we know now that can prevent that. Will early hormone therapy kill off some of those micromets? Of course. But it will also allow to live the hormone-insensitive micromets that replicate very rapidly - so you're no better off, and possibly worse off from starting on early hormone therapy.

I think the hardest part of his recommendation is that you are doing nothing at this time. That is very difficult when you know the disease is inside you.

- Allen

Thanks for your informative replies. They have made me feel more confidant towards my doctor's plan. I was just very surprised. I thought that the next step following failed curative treatments was automatically HT, and sooner than later. I'm thinking some doctors must subscribe to this line of thinking because my RO suggested I would probably go on HT if my PSA reached 1.0.

TA et al:
Wow! I find it amazing and surprising that T. A. And others say that HT is not warranted until mets appear for a Pt3b high Gleason case. What is the basis/ science behind this rec.? I've read that HT has been found to extend life for high risk cases. Believe me if I can find a good reason to stop HT I'll jump on it! I'm within a month of my next lupron shot at six months and am scheduled for 13 months total by Dr Dattoli. As my signature shows, I've had RT, SRT to prostate bed with six months of HT, and RT to pelvic lymph nodes along with HT 3. After five months of HT3, I'm feeling like s...t. Mainly weight gain, aching muscles and lack of endurance. I will do the additional 8 months of HT3 if necessary but I won't enjoy it. I'm active physically and hate the impact on my performance. I'm praying that the IMRT to pelvic nodes will stop progression. I'm on pads again due to leakage and urgency.
Should I just stop ADT?
Bob

You are very young to be told you are incurable at this stage. I would definitely be seeking another opinion from an MO at another one of the major cancer centers. You really don't need this guy telling you that you are incurable and he is going to treat you accordingly. That happened to me before I went elsewhere and got treated by an MO who believed that, with very aggressive treatment, he could offer a curative possibility. Once again, you are way too young to take this for granted.

Simon

Well, I think the premise is that the prostate was removed and the prostate bed and lymph nodes were then irradiated, therefore there should not be any cancer left in those areas. If my PSA rise from 0.1 to 0.3 is accurate, then it means there is mets elsewhere, most likely the bones. So, the only question left is to whether to treat immediately with HT, allow it to go refractory, and then irradiate the bone mets. Or to allow the mets to become visible, irradiate them, start HT and then allow the PCa to run it's course to becoming HT refractory.

The real question: is there any difference in survival between the two strategies? If not, I would prefer the plan where I spend less time on HT.

I do plan to seek another opinion.

Bob,
Perhaps you don't understand the anatomy involved. When mattamx tells you that he already has had his lymph nodes irradiated, that already includes iliac nodes as well as all the other nodes in his pelvic area. So he has already done what you propose and it didn't work, unfortunately. You two are not in the same position. One cannot re-irradiate the same area because of toxicity.

- Allen

I am in the situation that Tall Allen writes about: systemic, micro metastatic, and undergoing no treatment. My MO recommends no reason to start treatment until either mets are revealed or PSA doubling time accelerates to an unacceptable level. What that number is will be his judgment. In a way I feel grateful not to be going onto HT at this time; HT really sucks and it is not a cure. Had six months of HT during SRT. Doing nothing for now actually feels really good, and seems like the best alternative now that alternatives have narrowed. This HT thing will eventually happen, and probably will not be especially helpful for long. So why rush? Best wishes!

NewspaperLover
Age 72
Gleason 8
Surgery 2009
SRT + HT winter 2011-12
PSA detectable again Dec. 2014
Most recent PSA .26
Next PSA end of May

Hello Mattamx,

Just want to greet you and reach out with a handshake greeting to you, from across the miles. We're in the same general age range and you would have been a few years ahead of me in high school, just as a reference point, to get acquainted.

It sounds like your case has a few complexities, Mattamx. From your post, I can tell you've got some "fighting spirit" within you --- and you want to get the best treatment plan going for your future. From your post, I can tell you're at the proverbial "fork in the road" ... as far as some treatment decisions. The questions ... the complexities ... the uncertainties ... the considerations ...

I'm reaching out with a message because I think the title of your post says it all, and right now --- YOU are the most important person in your situation --- your post title contained the word "QUESTIONING" --- that's significant --- you've got some questions on your mind --- and your question is the most important question of all right now ...

I was diagnosed with an advanced case and have been pursuing treatments ever since --- fortunately, I've had some meaningful success along the way with my treatments --- so I'm keeping up with a full-time career, friends, family, exercise, hobbies, volunteer work, and social events. I formed a medical team comprised of my urologist and medical oncologist ... but realizing that my case has some complexities, and realizing that I want to get farther down the road of life, I finally made the decision to get a second opinion by taking my case to the next level ---

Here are some words that my local doctors shared with me --- because I INCLUDED them in my decision to seek a second opinion and sought their blessing in my decision ... they said to me, "A GOOD doctor will ALWAYS recommend that you seek a second opinion." Those were powerful words --- I won't ever forget them --- and I felt that those sage words of advice were worthy enough to share with you today.

I've got a set of friends here who now share in my same medical diagnosis --- they are my "Battle Brothers" --- but most importantly, they are my FRIENDS. One by one, each one of us has traveled to seek a second opinion from a larger medical facility, with specialists who focus specifically on advanced prostate cancer. Each one of us has returned from seeking that "second opinion" with a greater sense of confidence --- in some cases, confirmation of the current course of treatments --- in some instances, new ways of looking at the treatment course and new options and possibilities being offered. In ALL cases --- the specialists who consulted with me and also with my friends formed a BOND with our local medical teams, to consult and coordinate the treatments and medical care TOGETHER.

That's been a very POWERFUL event in my treatment plan, as well as for my friends here, engaged in the same battle. A second opinion can add an extra layer of expertise --- another viewpoint --- another idea on treatment possibilities --- and perhaps confirmation of your current course of treatments, which would be very affirming in your case, I feel. There are OUTSTANDING medical centers in every corner of this great country of ours --- experts in the field of prostate cancer. I want the best medical treatment and advice for every friend of mine --- and every member of this forum.

A second opinion can offer some PEACE OF MIND ... I know it did in my case, and my friends have spoken of the same feeling after they sought out a second opinion ... I've heard them say, "I now sleep better at night, knowing that I sought a second opinion. I now know I am doing everything I can think of to preserve and maintain my health."

These are just some thoughts to share with you, Mattamx --- when I saw the word "QUESTIONING" in your post title, it leads me to think that you might want to consider the possibility of a second opinion. I got to the point where I felt I needed to "Go BIG, Or Go HOME" --- and to make sure I was doing everything in my power to maintain my health. Seeking a second opinion --- "No Harm, No Foul" --- just my thoughts, anyway.

Sure want to wish you the best, Mattamx --- stay connected with us here --- you've found a supportive "Band Of Brothers" right here --- and we're here to support you.

Handshake of friendship from across the miles,
"Cyclone Fan" From Iowa State University

Cyclone fan, thank you so much for your inspiring and heartfelt reply! You don't know how much I appreciate it! I wish I could write a more extensive reply but it is so frustrating trying to type on this site!

You should know that I graduated from the U of Iowa, so I am a Hawkeye! Even though you are a Cyclone, you seem like you're okay. :)

Mitch

I agree that a second opinion is important but it needs to be from an acknowledged expert. We also need to do our own research so we are smart enough to ask the right questions. Frankly I got some good leads from gents right here on HW in terms of whom to talk to about next steps. I highly value this website because guys who have been through the ropes testify to their personal experiences.
Bob