What would you say on a podcast about PCa?

Well, lots of good points by the forum.

First and foremost, stay on top of your health. See your doctor, have those labs. For those who have served in the Army it's akin to:

PMCS - Preventative Maintenance Checks and Services
Q-Services (Quarterly)
S- Services (Semi-Annual)

This identifies issues early only so potentially instead of having to replace a transmission, you just do transmission flushes. Same principles with your car.

There is no "good" cancer. That's an oxymoron.

If you are unfortunate enough to join this club then start learning the terms and definitions. Hard to have an intelligent conversation if you don't know what an ARI is...OS, PFS, RPFS, PSADT, PSAV...

Always have a multi-disciplinary team. Besides radiologist, urologist, oncologist, have a cardiologist...,

Become familiar with where to find information - guidelines such as NCCN, AUA and patient centered websites such as PCF, PCRI

Have "rules" for you and your medical team. I've posted them before.

Understand that despite the science behind the guidelines for treatment, they are population based and lag behind data emerging into mainstream clinical practice from clinical trials. The "art" is applying the science to your particular clinical data.

There are a plethora of choices when deciding on treatment. This can lead to paralysis by analysis. There is no single "right" treatment decisions, there a quite a few "good" ones.

If you do not understand the basics of statistics, get busy...things like Bell Curve, Standard Deviation, Sampling Size, Confidence Intervals, Mean, Mode, Average...

Do not underestimate the power of things like attitude, exercise....

If you are comfortable, look up the shared decision making model for you and your medical team.

If you are using a shared decision model with your medical team and somebody is dismissing your I out to the decision., well, firing them is an option.

Finally, statistics....statistically you stand a good chance of being around for awhile, you may have to live with prostate cancer and its side effects but you can live a lot with it!!

Understand the difference between research and what I call literature search and reviews. Truth be told, most of us do the latter, me included!

There are more but I'll stop here.

Kevin

Hi Kevin, looking at your timeline graphic and I’m curious about what made them add Taxotere in Jan 2017 when they also started you on Lupron. Did you ask for that? I asked if I could do chemo after radiation, and I was told “no” because I don’t have a high tumor burden. I plan on discussing this again at my next appt. Radiation planned for late September - November.
Thanks!

John

I asked for triplet therapy.

At the time, the two studies, STAMPEDE and CHAARTED showed a "benefit" for use of chemotherapy in high risk patients.

I first went to to see the Director of Urology at the nearby NCCN Center. I laid out my clinical history and my rationale for doing chemotherapy, that being while I might not meet the criteria in those two studies at the moment, given my PSADT and PSAV, I would be shortly!

He dismissed the idea, said he would treat me using mono-therapy, ADT, continuous.

He left, I told his PA I wasn't doing that and would go elsewhere to get the best treatment.

I went to Mayo in Rochester where Kwon recommended the triplet therapy based on my clinical history and the results of a C11 Choline scan.

I agreed. He asked if I had a medical team here that would do it. I said yes.

Aggressive PCa necessitates aggressive treatment decisions. Those decisions often don't fit neatly inside guidelines such as NCCN and AUA, thus making some doctors unwilling or reluctant to prescribe them. In a way, I understand, given malpractice issues, if they venture outside the box, are they subject to risk of the patient turning on them..!?

If I understand correctly, those two studies have refined their data and the general consensus is that chemotherapy may have a benefit in high but not low volume prostate cancer.

So, back to the dilemma, standard of care or...fortune favors the bold.

Kevin

John

I asked for triplet therapy.

At the time, the two studies, STAMPEDE and CHAARTED showed a "benefit" for use of chemotherapy in high risk patients.

I first went to to see the Director of Urology at the nearby NCCN Center. I laid out my clinical history and my rationale for doing chemotherapy, that being while I might not meet the criteria in those two studies at the moment, given my PSADT and PSAV, I would be shortly!

He dismissed the idea, said he would treat me using mono-therapy, ADT, continuous.

He left, I told his PA I wasn't doing that and would go elsewhere to get the best treatment.

I went to Mayo in Rochester where Kwon recommended the triplet therapy based on my clinical history and the results of a C11 Choline scan.

I agreed. He asked if I had a medical team here that would do it. I said yes.

Aggressive PCa necessitates aggressive treatment decisions. Those decisions often don't fit neatly inside guidelines such as NCCN and AUA, thus making some doctors unwilling or reluctant to prescribe them. In a way, I understand, given malpractice issues, if they venture outside the box, are they subject to risk of the patient turning on them..!?

If I understand correctly, those two studies have refined their data and the general consensus is that chemotherapy may have a benefit in high but not low volume prostate cancer.

So, back to the dilemma, standard of care or...fortune favors the bold.

Kevin

Thanks Kevin!
I agree with you 100% I’m trying to be aggressive as possible. Had prostatectomy in May, started Firmagon 3 weeks ago, staring zytiga in 2 weeks, starting radiation in about 3-4 weeks. I believe I have to hit the cancer as hard as possible now to ensure “many years” of survival and I will continue to ask my MO about chemo and other treatments, but I expect she will push back in the short term for all the reasons you wrote above.
Thanks!

I'm in exactly that place. Gleason 9 with adverse factors like cribriform, multifocal, bladder neck invasion and so on. Aggressive. Surgeon said it could have been fatal if not removed. Second post-op PSA was low - 0.02. Urologist and second opinion at looked at PSA and said no need to do anything more right now even though recurrence is likely. I'm getting one more opinion, and if he agrees with the first two I'll be calm until my next blood work in about a month. They're preaching patience, and my mind is racing. If radiation is likely, why are we waiting? This PCa thing is much harder mentally than physically, at least for me. Grateful for everyone's comments.