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Decision Time Has Come. Advice?

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Posted 4/14/2018 11:03 AM (GMT 0)
Brothers,

I've read the medical journals, gotten the second opinions, met the docs. Ready to decide what's next.

Status:

Healthy 60-year-old. PSA 5.8. Positive 8 of 12 cores, up to 50%. Urologist saw 3+3. Johns Hopkins second opinion saw 5% 3+4 on one core. Dr. Zelefsky sees 3+4 on two cores. "Oncotype" screening finds 3+3 and 1% chance of metastasis within 10 years. MRI and DRE show an "abnormality" on the right side of the prostate but no lesions.

Met with Stock: He prefers seeds but would be happy to oversee active surveillance. Met with Zelefsky: On balance, he recommends treatment but active surveillance would "not be unreasonable" choice, with another MRI in a year. Chances, he says, are extremely low that the cancer will progress any time soon.

Decision Time:

Seeds? SBRT? AS? My personal feeling is that I wouldn't mind foregoing the treatment and side effects if possible, by choosing AS for the time being, but if I need to treat, so be it. I don't have a strong desire to be cancer-free. I have a suspicion that Our Disease is routinely over-treated. If treatment, probably seeds, since it is better-established than SBRT and involves fewer treatments.

Sincere thanks for your advice.
Posted 4/14/2018 11:18 AM (GMT 0)
AS. Defer treatment as long as possible. You are in a good situation. Just keep an eye on it.

If, you do treat, then brachytherapy or external beam is preferred. I used HDR brachytherapy and am pleased. Have you looked into HDRBT?
Posted 4/14/2018 12:41 PM (GMT 0)
IMHO, G4's are dangerous to keep as pets. "Cancer free" could be fun.
Posted 4/14/2018 2:01 PM (GMT 0)
If it were, I'd do AS. (Of course, it's not me--it's you.) As to treatment, almost a coin flip since any of those treatments should do the trick.
Posted 4/14/2018 2:29 PM (GMT 0)
scottaleh: You have done your homework well. Now comes the rather agonizing part of making a decision. My stats are quite close to yours except I had fewer recognized cores. All of your choices offer high cure rates including HDR, LDR, SBRT. I personally could not handle the AS wait and see if treatment becomes imminent. Proactive VS reactive was my choice with LDR. So far, I consider myself quite blessed with my results with SEs being a thing of the past with the exception of diminished ejaculate. Your choice is a life choice that will be one of not the most important ones you will make during your time on this earth. Everyone here will stand beside you no matter where your journey takes you. Best wishes and keep us posted.
Posted 4/14/2018 2:51 PM (GMT 0)
My thinking on this is probably outdated as I was in the research mode in the fall of 2012

Remember that the biopsy is tiny sampling only, so 8 of 12 cores with up to 50% involvement is fairly significant. That's only what they sampled.

I would think your PSA velocity should be part of the equation. What is your PSA history?

On the plus side, I don't think waiting another year will make any difference, as long as you monitor it

As the late Terry Herbert stated "The Golden Rule of prostate cancer is simple THERE ARE NO RULES."

Gather all your information and make a decision you are comfortable with

It's China Town, Jake
Posted 4/14/2018 3:06 PM (GMT 0)
In your place, I'd be thinking seeds or SBRT. With a grade 4 in the mix, AS would concern me.

Andrew
Posted 4/14/2018 3:13 PM (GMT 0)
My involvement percentages may have been a bit different, and I was a bit older, but I had the same dilemma. Mostly 3+3, with one core 3+4. For me all were low percentage involvement. The decision driver for me was the presence of any G4. I felt it best to actively treat before the G3+4 had any chance to become G4+3. No way to know if it would, but no way to know that it would not. My call - yours may be different.

I did much the same research as you, but with my surgical history, I chose radiation - specifically SBRT for the high efficacy and convenience. I am now almost 16 months out, and other than a PSA bounce (common among raddies), doing just as planned.

I don't think you would be wrong to choose any of these: AS, external beam radiation (you pick the flavor) or brachytherapy. Just making a choice will be the right thing for you.
Posted 4/14/2018 3:29 PM (GMT 0)
I had more 3+4 and some 4+3 so the TX decision was made for me but I believe had I had the same as you I would also have treated. As I used SBRT for my higher risk I am sure I would have done the same with your lower risk stats.

I can only comment on the SE's from 5 fractions of 36.35GY with SBRT. They were nothing but unexceptional.

You have several really good options with fairly equal potential cure. Look closely at the SE's.

Be well.

Roger
Posted 4/14/2018 5:00 PM (GMT 0)
We have very similar numbers. I would echo JNF and recommend you look into HDRBT. The ease of the procedure and back to normal life the next day is what tipped the scale for me.
Posted 4/14/2018 5:20 PM (GMT 0)
Only 1 of your choices has 0% chance of devastating, or even minor SEs. (unless we are counting the chance of serious cancer spread as an SE, in which case the odds of suffering that are only extremely low, but not zero.) And does one of your tests show a 99% chance of being met free in 10 years? During those years, treatments and SEs might well improve. But it is all a gamble.
Posted 4/14/2018 8:06 PM (GMT 0)
Scottaleh, Having bliateral PCa with up to 50 percent core involvement, a positive DRE, and some G4 found, would push the limits of my comfort zone, and I have had a high tolerance for a long time.

Are you at great risk if you sit on it for a year? Very probably not. But, that G4 possibly in more than one core is unsettling.

Evidently, MSKCC is far more liberal in their AS recommendations than Johns Hopkins is. Maybe that's a good thing, but JH publishes stats every year contending that looser AS standards are more risky.

You must do whatever you feel most comfortable with, and we have all heard horror stories about some folks suffering from SE's of treatments. But, I would suggest that you start considering treatments, and SBRT or HDR-BT would have my interest if I had to come off of AS.
Posted 4/14/2018 11:03 PM (GMT 0)
Per Subdenis: Ease of treatment and back to normal life the next day. HDRBT and SBRT either or you look at the SE's and the availability of that TX in your area.

Be well

Roger
Posted 4/15/2018 2:02 AM (GMT 0)
If you can handle the AS go for it...lotsa folks say they can...then over the months the little gl 4 starts growing more in the mind than in the body...Give it a shot...when you want ...flip a coin and stick with it...I know nothing about SBRT...But BT sounds good..feggid about surgury. I do sense SBRT and all the new stuff is better than BT if you really research..
Posted 4/15/2018 2:51 AM (GMT 0)
i like your thinking. Why not get as much extra time as you can without any risk of any side effects? AS watches you more closely than the disease is likely to progress. Enjoy your time symptom free!
Posted 4/15/2018 11:47 AM (GMT 0)
Grateful as always for the group's advice.

My thoughts are trending toward taking this disease one year at a time, and acting as soon as a doc says it's time to act.

First, I'd like to see a trend. I never had a PSA until my 60th birthday in November. I could have been carrying this cancer for years without knowing it. Let's see if it's growing or is stable. The "Oncotype" says 1% chance that it metastasizes within 10 years.

Second, the path results are oddly mixed. Four paths have read the slides. Two found 3+3, one found 3+4 in one core, one found 3+4 in two cores. The "Oncotype" says 27% chance of finding 3+4 if the prostate were removed and studied.

Third, I live in NYC, so have access to some of the top docs. Stock at Sinai is OK with AS. Zelefsky at MSK is OK with AS. Frankly, I was surprised -- thought the volume and the 4's were a disqualifier. Having Sinai and MSK close by also means I can enroll in a well-established AS program.

Deeply grateful for your comments...perhaps most impressed that there is no consensus, which makes me feel free to go with my instincts and not feel like I'm being a stubborn idiot.
Posted 4/15/2018 4:37 PM (GMT 0)
Scottaleh,

Sounds like you have done commendable research and received a number of "second" opinions and have landed on a very well reasoned decision concerning next steps.

I am a relatively new member here and am still learning 6 months post diagnosis. We are in the same neck of the woods and I was diagnosed at MSKCC and very strongly advised for AS. My research led me to also seek additional opinions that led me down a different path.

I think things worth sharing from my experience to date (but that are likely already obvious to most) are:

1. Understand that much of this business is one of interpretation and that experts can see things differently
2. While respecting the expert opinions we all need to be very active in representing ourselves
3. What is most important in the decision is to be able to carry forward with as much confidence as possible and to realize this is ultimately a very personal thing
4. Keep learning

I wish you all the best!!
Posted 4/15/2018 6:35 PM (GMT 0)
My stats were somewhat similar to yours and I was told by some that I was on the edge of what might be considered reasonable to do AS. I had fewer positive cores but was also a 3 + 4. One of those who thought AS was reasonable for me was an oncologist I met with at MSKCC.

In the end I decided on treating. Was influenced by my father's experience with advanced Pca. Also was aware that a good percentage of those (forget the number) who start AS eventually do undergo treatment and decided I preferred to treat rather than wait and treat later.

Good luck,
Posted 4/15/2018 7:35 PM (GMT 0)
good luck in your decision. I am 3+3 in 10 of 12 samples. Had mri Friday at Dana Farber and was told all contained in Prostate which was good news . However again all my recommendations from drs at Dana are for surgery. Says the fact that I have so many samples with cancer that AS or Radiation not recommended. Meeting with RO next week before making final decision. Seems we are getting diff advice
Posted 4/15/2018 8:46 PM (GMT 0)

tomobrain said...
good luck in your decision. I am 3+3 in 10 of 12 samples. Had mri Friday at Dana Farber and was told all contained in Prostate which was good news . However again all my recommendations from drs at Dana are for surgery. Says the fact that I have so many samples with cancer that AS or Radiation not recommended. Meeting with RO next week before making final decision. Seems we are getting diff advice

I don't know why having a lot of samples with cancer would disqualify you for RT? If the entire prostate bed and a bit more is being radiated, would it matter how many are cancer, aren't they all going to get radiated? And have you had 2nd opinions on your slides, and if so, are you only 3+3?

Are the recommendations for surgery coming from surgeons?
Posted 4/16/2018 12:37 AM (GMT 0)
Tommo, anyone that tells you no radiation is an idiot, whether they are are a surgeon or not. How biased that is. Good for you to see a radiation oncologist. Look at my signature and see if radiation might be effective. You are low risk and I was very high risk and it has worked very well for me and thousands of other men. Great cancer control and far less negative side effects than surgery.

Here is an excellent website for PCa and the treatment of HIgh Dose Rate Brachytherapy. It is by Dr Jeffrey Demanes, the father of HDRBT having used it since 1981 and he heads the department at the UCLA Medical Center. Www.cetmc.com.

Note that I was 12 of 12 and G7 with 59 PSA. Thankfully three PCa surgeons all,said no to surgery and suggested radiation therapy. What rock are the doctors at Dana Farmer living under?
Posted 4/16/2018 12:52 AM (GMT 0)
Tomo-

You just learned for yourself why one should never ask for opinions outside their specialty. The ignorance is sometimes astounding to me. I guess D-F follows a restrictive AS protocol, similar to Johns Hopkins. There is actually little evidence that cancer volume is a risk factor for AS. I hope you will be talking to Irving Kaplan at Beth Israel.
Posted 4/16/2018 1:59 AM (GMT 0)
thanks for your advice - meeting with Radiation oncologist at Dana soon. So far met with 2 surgeons, one on south shore boston and one at dana farber and also with medical oncologist at DF. My initial read had 2 of my ten at 3+4 but the second read which was done at dana farber was all 3+3.
The reasoning for surgery as well as volume is my age as 52. Also my MRI 3T on Friday showed all contained within prostate so might be best time to do. All drs really nice and very smart and all no doubt that surgery way to go. Current recommendation is more than 3 cores positive on 3+3. They admit that thinking on this could possibly change in future but that is current recommendation. Will keep u informed before making final decision after upcoming meeting. thanks all
Posted 4/16/2018 2:07 AM (GMT 0)

Tomobrain said...
The reasoning for surgery as well as volume is my age as 52.

In my opinion, that is a completely bogus argument, for reasons described here:

/pcnrv.blogspot.com/2017/08/the-myth-that-younger-men-should-not.html

Tomobrain said...
Also my MRI 3T on Friday showed all contained within prostate so might be best time to do.

That's like saying that the best time to remove your prostate is by age 30 before it causes any problems for you. I think you can see the flaw in that logic.

Tomobrain said...
Current recommendation is more than 3 cores positive on 3+3. They admit that thinking on this could possibly change in future but that is current recommendation.

Thinking has already changed in many other places. They seem to be lagging.
Posted 4/16/2018 2:14 AM (GMT 0)
tomobrain...I was diagnosed at age 51 and I would certainly say that the default thinking is that younger guys should have surgery and older guys should have radiation. (I'm not sure I fully agree with it, but you will find a lot of docs that will say that.) But I certainly don't get the "volume" argument for surgery over radiation--I certainly haven't seen any data to that effect. I do think it's good that you're meeting with an RO--it's definitely the perspective that you're missing based on the three doctors you've met with. Good luck deciding on your treatment!
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