Great news, but some disappointment

Well, I saw my med onc today for my 4 month checkup.

Great news --- UNDETECTABLE PSA (<0.1)!! And that's at about 23 months on ADT2.

Disappointment --- Still wants to do 3 years of ADT2 (sigh). Explanation: since I'm as young as I am, with as aggressive a case as I have (it's the cT3a plus G9 5+4 that's exciting), and RT + HT for primary therapy treating with curative intent, she wants to continue with what has been demonstrated in peer reviewed journals and long-standing practice, 3 years. So, another Lupron shot today...

She also said if life is miserable, unsustainable, and I really insist on quitting, that she'd be ok with that too since the point can be argued either way with today's information. She "wouldn't say I'm crazy" for stopping earlier. Perhaps someone, somewhere, has a peer-reviewed journal published study demonstrating non-inferiority of 2 years vs 3 years of HT for very high risk cases?

Her comment was, "I'd rather find out 10 years from now that 3 years was overkill". I added, "and much better than finding out 10 years from now that 2 years wasn't sufficient"!
[edit: please for my brothers here I don't intend any implied criticism of anyone's decision on duration! There is obviously no known right answer yet, and everyone's case is quite unique anyway. It just occurred to me that comment could be taken the wrong way...]

Well, I don't like this HT stuff, but life is not "miserable" on it by any means. I sure wish I could find a way to wake up my libido; for me that's the most painful loss in this process, and for us as a couple.

Jerry (or at least a somewhat faint image of him)

i can appreciate what you are going through. March 28 will be my 2 year anniversary of my first Lupron Shot.

My MO, Dr. Jeffrey Turner in Marina del Rey CA is measuring 9 months from start of Zytiga which will be Memorial Day rather than how long I have been on Lupron.

Congratulations on the good news.

and congratulations on being called, "young."

my doctor still goes on with the phrase, "At your age..."

as to more on HT - you've come this far, just a little further? maybe?

Hang in there,
Andrew

Congrats on the PSA Jerry! HT woes, won't get much sympathy from me! LOL.

Cheers, Doug

Jerry, my good friend, very happy to hear your latest PSA news!

As for some more time on ADT... I have a friend who survived testicular cancer and was treated more than 25yrs ago. At the time of his treatment, he had X number of very difficult chemo treatments, and the protocol suggested that one more treatment was needed. He did not want it at all, but he toughed it up, and got the treatment. A few years later he saw his doc, the doc remembered his angst about that last treatment, and then the doc told him “you know, studies were completed, and we no longer do the last treatment that you had”. With all that said, he agrees that it was the right decision for the time. So, tough it up Jerry!!! just kidding...

My best to you,

Here are a couple you can run by her:

High-risk prostate cancer treated with pelvic radiotherapy and 36 versus 18 months of androgen blockade: Results of a phase III randomized study.

Long-term quality of life in high-risk prostate cancer: Results of a phase III randomized trial.

- Allen

Likewise, congrats to you . I'd say stay on it for as long as it works.

yeah, Congrats, celebrate the good news "0" 1st

guess got be more patient & tolerance for the HT treatment.
NTL...stay on.

Jerry,

Maha Hussain is a stickler for accuracy and for going by the books - I admire that. Someone has to stick up for the rigorous rules of research and she does it better than anyone around. (She is a polar opposite to someone like Snuffy Myers in that regard). She is absolutely right that it is riskier going with info that hasn't yet been peer-reviewed in a major publication, although my feeling is that when a top researcher like Nabid is presenting at an ASCO conference to the top researchers in the field, I tend to doubt that there will be a lot of emendations before publication. At least in my experience, when I look at presentations and what was later published, I can't recall any that were changed. Other top researchers like D'Amico (who is himself a peer reviewer for ASCO publications) are already using his findings in their practice.

I don't quite understand why you are working with a medical oncologist rather than a radiation oncologist. Many people think of medical oncologists as generalists, and that is not quite the case. They are experts in their field, and have a very different expertise from radiation oncologists or urologists. I'd think someone like Hamstra would be a better choice. The problem, which you are exemplifying, is you run into the hammer/nail problem. Medical oncologists treat people who can no longer be cured of prostate cancer, so their natural inclination is to use the biggest guns around.

In the end, it is your decision. You have to weigh the risks of going with the findings of that unpublished research against the benefits of shorter duration ADT, and decide what is more important to you.

- Allen

Tall Allen, as always I greatly value your thoughts and information.

My MO at Vanderbilt was of the mindset you describe. She said unless something serious recurred, she hoped never to see me again! Definitely only into the post-recurrence cases, and only tangentially interested in anything involving primary treatment.

While I am still under primary treatment, radiation is in the past for me. My RO at Vanderbilt wasn't even going to follow up with the HT series, that was done through the urologist's office. The RO was about radiation, and not much surrounding it except to coordinate with the neoadjuvant etc. HT therapy with the urologists.

While I am still in primary therapy, I think Dr. Hussain is fully cognizant that this is primary. As you say, probably most of her patients would be in recurrence and that would color her perspective. But, my primary treatment was RT + HT, and my current treatment / eventual options really are in the med onc arena. I guess I kind of like an aggressive approach myself, and "as an engineer" I know how important peer review is. It's interesting you mention no changes are usually made to these papers between an ASCO presentation and eventual publication, but it's going on 2 years now and Dr. Nabid still has not published. Maybe the data set is still maturing?

Yep, this as with most things PCa is largely a matter of preference and personal opinion. I'm going to see how my side effects are with a few more months on HT. Maybe I'll decide in July that it's enough!

Jerry