Active Surveillance Caution - Advanced Prostate...

Advanced Prostate Cancer

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Active Surveillance Caution

Spaceman210
Spaceman210

I had active surveillance between 2007 and 2009 at UCSF. Their prominent doctors/researchers did not follow up with me in a timely manner to advise surgery after the tumor upgraded and expanded. As a likely result of this delay, though my surgical margins were negative, I now have a relapse 9 years later. Also my surgeon at UCI was adamantly anti-radiation, so I missed another opportunity early-on for that. MD Anderson apparently mis-read an MRI to boot (see my other post today).

For those on or considering active surveillance, I hope some of you will realize the risks in doing so and realize that ongoing prompt, thorough communication and assertive questioning is necessary to be maintained for best chance of success. Going to top Comprehensive Cancer Centers and seeing top doctors gave me false confidence. Had I known all this in advance, of course I would never have entertained it and now wish I had never heard of the concept to tempt me to go this way. Ultimately my RP resulted in none of the horrendous side effects my uro had scared my off with, so realize that in good hands, surgery may not be as bad as you think.

I hope this helps someone.

23 Replies

I'm sorry that your active surveillance [AS] experience wasn't good. You need to post this to a different group, though. (This is where I find out that the Advanced PCa group has a lot of AS guys. LOL)

Some years ago, Dr. Myers seem to agree with others who were saying "Just don't call it cancer!" (Gleason 3+3). Considering that 25-30% of 3+3 cases will progress, that seemed to be a bit deceptive.

Men on AS deserve to find out as quickly as possible the probably of progression. Not just those at high risk, but also those at very low risk who otherwise suffer unnecessary anxiety. For the former, it seems a bit crazy to simply sit around until things get worse, when there are additional probabilistic tests that can be done at the outset. (Even if they are not yet covered by insurance.)

-Patrick

Thanks so much. I just saw a UCLA doc Dr. Reiter who said do nothing at this time. More consults to come.

leach234
leach234 in reply to Spaceman210

Reiter, Wilson, and Ahlering are the 3 best surgeons in Southern California.

Spaceman,

I can't disagree with anything you said but I'll add one little but important caveat. When we're dealing with cancer and we look back at the past and say, "If only I had ...", we have recognize that even if we had done something different, we might not have done any better. It's possible, for example, that there were micrometastases, undetectable with any current technology, that would still have become evident many years later.

Also, of course, both we and our doctors are only human and mistakes are made.

Best of luck for the future.

Alan

Great thought; thank you and I just saw a doc who agreed with your statement.

Who was your surgeon at UCI? Ahlering?

Spaceman210
Spaceman210 in reply to leach234

Yes

Remember:

Would I've, Could I've, Should I've.... If my Aunt had a mustache she would have been my Uncle. Come to think of it my Aunt did have some tiny hairs under her nose and her chin... and a mole on her cheek (Eastern European trait).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/22/2018 12:44 PM EST

Hirsch
Hirsch in reply to j-o-h-n

Very clever

Spaceman210
Spaceman210 in reply to j-o-h-n

Har-de-har-har!!! Thanks for the laugh

Ahlering was also my surgeon. He is a great surgeon and I had no incontinence or ED. But you are correct, he doesn't like follow up radiation. I am 7 months out from surgery and just had my 3rd PSA test. Waiting for results. First two were undetectable but I am a Gleason 8 with a focal margin. If my PSA rises I'm going to have salvage radiation no matter what Ahlering says.

Spaceman210
Spaceman210 in reply to leach234

You might want to explore the options in advance. Any thoughts photons vs protons? BTW I live in Anaheim Hills in case you are in OC.

Lived in Costa Mesa for last 20 years but living in San Luis Obispo for last 7 months (since I got married). Still own my house in CM and am down there about once a month to water plants. If I need radiation therapy will likely go to UCLA for treatment. I hear Christopher King is very good.

Spaceman210
Spaceman210 in reply to leach234

I heard the same and am seeing him on Monday! I went to Cal Poly there in the '70s

leach234
leach234 in reply to Spaceman210

I went to Cal Poly in 1977 but transferred to UCSB and graduated from there. Let me know what Chris King says.

What was your Gleason score and PSA when Ahlering removed your prostate? Did you have extracapsular extension? What was your PSA after surgery and what is it now 9 years later?

Spaceman210
Spaceman210 in reply to leach234

Just 3+3 final (though one needle biopsy had been 3+4), negative margins or extension anywhere and ND for about 9 mos, then crept up gradually and is 0.15 now. PSA had been about 7 at surgery.

Last year it had made a jump from 0.10 to 0.16 quickly, so I consulted John Araujo, MO at MD Anderson, who said: get on metformin, get on a beta blocker, and seek radiation at 0.2. They also advised me to lower my Vit D supplement due to my T being high. I have been on both metformin and carvedilol as a result, since Feb. My D level then went too low so had to compromise on the supplement.

Dr's Altering and Reiter on consultation do not want me to treat with a slow rise, but am anxious to get Chris KIng's input at an early stage. I regard John Araujo the most at this point - he spent the most time with me and was the only one who gave concrete suggestions. My own uro was pretty useless.

Additionally I cut out all dairy, meat and egg yolks in Feb. I do take soy products and drink almond milk. Walnuts, flax seed, avocados, etc for the good fats, and occasional salmon. Have lost some weight as a result, which makes me pretty skinny.

leach234
leach234 in reply to Spaceman210

Chris King will likely have a different opinion since he is a radiation oncologist and not a surgeon.

Spaceman210
Spaceman210 in reply to leach234

Do you happen to know names of good MO's with PCa expertise in Orange County or at least So Cal? I need someone up on the latest and greatest to partner with who is unbiased, not my uro.

One other point to make: you need to be your own advocate. My GP sent me to a Urologist when my PSA hit 4.0. My Urologist monitered my PSA for 2 years as it slowly rose to 5.2. Biopsy positive and surgery 6 weeks later. Focal positive margin of <2mm on surface of prostate during pathology. If I had insisted on biopsy when PSA was 4.0 cancer would have been fully contained.

Spaceman210
Spaceman210 in reply to leach234

Docs have many different attitudes toward it I've found...I had lots of ultrasounds/biopsies with Dr. Shinohara at UCSF.

What I heard was the best MO is Dr. Scholz in Marina Del Ray.

Spaceman210
Spaceman210 in reply to leach234

Thank you!

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