Fired first Urologist : New to group... - Prostate Cancer N...

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Fired first Urologist

Boacan
Boacan

New to group. Went to PA in urology clinic in June 2018 for kidney stone. He performed DRE and felt nodule on prostate and recommended biopsy. PSA was 3.7. Doctor came in and said prostate just enlarged and probably have prostatitis due to some symptoms I was experiencing. Doctor talked me out of biopsy stating risks. Active surveillance with PSA going to 4.5 in May 2019 and 4.7 in September 2019. PSA went to 6.1 in November and urologist finally decides biopsy needed even though I complained of prostate pain intermittently for the past year. Biopsy confirmed cancer in 5 of 12 cores 3+4=7 Gleason. Left side clear so I guess biopsy missed left side module? Peri neural invasion in 1 core. I’ve had increased pain around prostate since biopsy. Decided to dump urologist and went to Huntsman Cancer center in Salt Lake City. Specialist there didn’t say but seemed surprised that biopsy wasn’t done sooner. MRI done yesterday and I’ve elected RP surgery in January. Still waiting for results on MRI. Anyone have similar experience? Very frustrating as Initial treating urologist told me over and over that he didn’t believe I had cancer and that prostatitis and BPH was the cause of my symptoms.

18 Replies

You probably do have prostatis and BPH as well. The pain is almost certainly from prostatitis and not from prostate cancer. I hope you've explored your other options with specialists in those other options. With what sounds like "favorable intermediate risk" PCa, you have plenty of time to learn about your options, and all radical therapies for your risk group are equally curative.

Boacan
Boacan in reply to Tall_Allen

Thanks! I have explored other options, including proton beam, cryotherapy, radiation brachytherapy, etc. - The reason I’m leaning to robotics is the oncologist said once you have radiation and brachytherapy, they won’t go back and do RP surgery as the complications are much greater. If RP doesn’t get it all then radiation can follow surgery. ADT as well. Mayo Clinic essentially said the same thing but said they have, in some limited cases, done RP after radiation but it’s quite risky and most surgeons don’t recommend. My oncologist felt that if I was older (I’m 61), he’d probably be less inclined towards surgery. He said if I was in my 70’s, other less invasive treatments may still allow life into my 80’s. A real challenge to know what to do but fortunately my wife is an ICU nurse with many years of care for cancer patients. Her input and support has been invaluable. Thanks again for sharing your insights!

Tall_Allen
Tall_Allen in reply to Boacan

Those things they told you are true-ish. It is true that surgery is a poor salvage option after radiation. What they didn't tell you (because they probably don't know) is that there are many non-surgical salvage options after radiation. Look at the table at the end of this article to get some idea of that:

pcnrv.blogspot.com/2017/09/...

Even more relevant for your case is the fact that cure rates for "favorable intermediate risk" PCa are about 90% no matter which therapy you pursue. Because of this, salvage should not be a determining factor in your decision. It is worth taking a look at the published results of each kind of therapy used for your risk level, which I compiled in about the center of this article:

pcnrv.blogspot.com/2018/10/...

If you are in Salt Lake City, I recommend you at least talk to John Hayes at GammaWest. They reported 5-yr biochemical recurrence-free survival of 97.5% for men in your risk group. HDR brachy has the lowest reported rate of erectile dysfunction - side effects are typically transient.

ncbi.nlm.nih.gov/pubmed/220...

Boacan
Boacan in reply to Tall_Allen

Great information! I wish Dr. Hayes was in my insurance network. I had investigated St. Mark’s Hospital and another oncologist who practices there. I checked Dr Hayes vita and unfortunately all of the hospitals he is affiliated with are not covered by my insurance. I plan to meet with the Huntsman Center’s radiation oncologist to review some other options. Thanks again for the info and advice.

Tall_Allen
Tall_Allen in reply to Boacan

He may be worth talking to for paid consultation. If he can't treat you, he may have an in-network recommendation.

Boacan
Boacan in reply to Tall_Allen

Good advice. I’ll call his office tomorrow.

A little bit similar and a little bit opposite. I resisted biopsy for 18 months despite the urging of my URO. We did some alternative testings that suggested a low risk. But then the PSA shot to 13 and I had bx followed by RP in December 2018. RP for me represented the "easier" treatment in terms of time and efficacy. Side effects pretty much the same. I do not regret my decision to wait, as it was rational and evidence-based. When the evidence changed, I changed my mind. Similarly I do not regret my refusal to accept hormonal therapy or post-op radiation therapy. So far, my PSA has been nil for 13 months. If and when that changes, a rational man will reconsider his options. I did not want to be pushed into a different treatment decision simply because it was described as "standard of care."

Boacan
Boacan in reply to dadzone43

Thanks for sharing your experience with this!

BTW, my DRE indicated firmness on right side only. Biopsy confirmed tumor in right side and nothing on left side so your biopsy likely didn't miss left side involvement. I did get whole gland HIFU ablation as opposed to 'focal' or targeted to one side ablation. In looking up that link I was a bit surprised to learn that my original urologist that I saw three years ago is now offering HIFU. He wasn't three years ago and I had to go out-of-state and out-of-pocket. I wouldn't be inclined to go with a HIFU new-comer; the one I saw in SF had years of experience. You may also need TURP surgery prior to HIFU.

I had a doctor playing the odds. I was in my early 40's and should not have had Pca, but I did. By the time I had the biopsy it was too late. Pca spread to the lymph nodes.

Boacan
Boacan in reply to Magnus1964

So saddened by this all. Don’t understand why doctors don’t watch this more closely and test or biopsy early on. I’d much rather be safe than sorry. I just got my MRI results today and may have cancer escaped from the prostate. Radiology said earlier detection would have helped in both our cases...

my first decision was get it out .....my second was Tomo Therapy...3 years now life is near normal.....good luck Boacan on your very difficult decision....Peace

Hidden
Hidden

The uros can be wrong. Mine nearly killed me .,

Who's your oncologist at Huntsman? I've been very happy with mine and the urologist that I see up there.

Boacan
Boacan in reply to Maleko808

I have seen both Dr. Dechet and Dr. Lowrance. Both seem top notch.

Boacan
Boacan in reply to Maleko808

Addendum: My first post-op PSA at 7 weeks (02/25/2020) was undetectable. Hence, the surgeon recommends waiting for the next PSA in 3 months. If it’s still undetectable, then we’ll continue to monitor. If not then I’ll probably be referred to Dr. Agarwal who several friends in N. Utah have recommended.

Maleko808
Maleko808 in reply to Boacan

Dr Lowrance is my urologist. I picked him after firing my first urologist ( oh guess you do have cancer...). Dr Agarwal is my MO. He is one of the best. If you do go to him you will like his PA's and team. They are family to me. Hopefully it stays undetectable. Unfortunately mine is in bone so we just play the swat the bug game.

Boacan
Boacan in reply to Maleko808

I have heard nothing but good about Dr. Agarwal. Hope I never need him but my post-op pathology revealed Extraprostatic extension along with PNI and lymphovascular invasion. Fortunately the margins, lymph nodes and seminal vesicles were clear but still worrisome. Sounds like you have some Polynesian ties as I believe “Maleko” means war or warrior in Hawaiian? I lived in Hawaii back in the 70’s and have many Polynesian friends. Laki Maika’i!

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