NEW Here - Best Direction Advice Needed - Prostate Cancer N...

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NEW Here - Best Direction Advice Needed

jimbay
jimbay

Well, I guess it’s my turn. I would love advice on the best direction to go.

Here are the details:

PSA: Started at 5.8 in August 2016 steady rise to 7.3 February 2018

.

Free PSA 7%

Two (1.5T and 3T) Multi-parametric MRIs. Both nothing positive.

Two Biopsies. First clean. The second one this May: one core positive, Gleason 3+4 40% of the core.

Polaris result of positive core: 2.8 (13th percentile).

I’m 52. So the default seems to be nerve sparing robotic radicle prostatectomy.

Two questions:

Are there any other better options?

How do I find the best surgeon?

Thanks so much.

14 Replies
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AlanMeyer
AlanMeyerModerator

Hello Jim,

Given your young age, rising PSA, Gleason 3+4, and low free PSA, I agree that treatment is a good idea. It seems clear that you have cancer, it is growing, it isn't going to get better by itself, and you're too young to expect to die of something else first. So, from my pure layman, inexpert point of view, the odds of successful treatment go slowly down as the cancer advances and it's better to treat it now.

Radiation is a common option. I used it myself. Is has different side effects, including a quicker recovery period and has advantages for men whose cancer has penetrated outside the prostate. It is relatively painless and, in my humble opinion (not shared by all) it has equal outcomes when performed by an equally good practitioner. However it is often argued that a younger man with locally contained disease should have it all cut out. You could consult a radiation oncologist but, alternatively, you could just consult another surgeon for your second opinion - if you decide to get one.

I can think of a couple of ways to find a fine surgeon. One way is to ask for recommendations, which you are doing here. There are some famous prostate surgeons. Ash Tewari at the Icahn School of Medicine at Mount Sinai in New York is a pioneer of laparoscopic surgery. Patrick Walsh at Johns Hopkins in Baltimore is (I think) the inventor of nerve sparing surgery. I don't know how easy it is to get appointments with either one of them, and since both are professors as well as surgeons you'll want to know whether they do the work themselves or plan to supervise residents or interns.

Other people here may also have recommendations. If you want to find good people near you, tell us where you live and maybe someone will be able to help.

Another approach to finding a good surgeon is to find one of the top teaching/research institutions. They attract good people and they participate in medical research, requiring their people to keep up and not just do what someone taught them many years ago. The National Cancer Institute has designated 70 centers around the U.S. that they believe are the best places for cancer research and treatment. See:

cancer.gov/research/nci-rol...

Again, I think you'll want to ask about whether the doctor you talk to, who may also be a professor, will be doing all the work himself or be working with students.

I don't know if you'll be able to evaluate the capability of a surgeon by yourself. I don't believe that I could. However I can evaluate the person as a human being. Is he (or she) answering my questions carefully? Does he take time to hear my concerns? Does he speak frankly about side effects and failures or does he pretend that his patients always do well? Does he speak thoughtfully or does he produce pat, flip answers? Does he pressure you to use his services or does he suggest other possible alternatives?

Local guys may be very fine surgeons. Just because they aren't famous and don't work for a prestigious institution doesn't mean they aren't good. However If you go with a local guy, be sure that he specializes in prostate cancer surgery. The first guy I was referred to by my HMO proposed to remove my prostate. But when I looked him up on the Internet I found that his specialty was treating female incontinence. I'm not sure how many prostatectomies he did each year but, ideally, you want a guy who is doing at least one a week. Specialists like Tewari and Walsh have done thousands of them.

I hope that helps.

Best of luck.

Alan

jimbay
jimbay
in reply to AlanMeyer

This is so very helpful Alan. Thanks!

Dr. Brian Chapin MD Anderson Cancer Center in Houston, Texas. My doctor here in Georgia told me he was the best in the world

jimbay
jimbay
in reply to DeanNelson

I'll check him out, Dean. Thanks!

When I had my surgery, my urologist said I could have it done locally (western Kentucky). I told him I wanted to go somewhere where they did prostate surgery all day, every day. He sent me to Vanderbilt in Nashville, and I have never regretted my decision and his recommendation.

jimbay
jimbay
in reply to michael42301

Thanks, Michael, I'll check it out.

HiddenThis reply has been deleted
jimbay
jimbay
in reply to Hidden

Thanks Joe. Focal therapy is an option. One challenge is that it the pc is not visible yet, so they would have to guess the area.

I am not sure where you are located, however if you are in the Pacific Northwest I can say I've recently had excellent care at University of WA Medical Center. The urologist (surgeon) I see is closely associated with professionals at Seattle Cancer Care Alliance and Fred Hutch, both well known cancer research centers in the Seattle area.

In Feb. I was diagnosed T2d. Imaging results came back clear yet biopsy results reported a plentiful amount of Gleason 9. I received a diagnosis of localized advanced cancer. Given my case, my urologist discussed best next step treatment options. He discussed both pros and cons behind ERBT and RP, and rated them ~equal with respect to successful outcome.

I chose RP. My main reasoning behind this was two-fold. My age is at a youthful 63. The other determining factor was follow-up treatment (if it came to that). I was told that if RP fails, there is radiation available. The opposite not true. Once you have radiation, RP is (typically) not recommended.

Once I chose RP, the urologist mentioned a clinical trial that I may be interested to join. It sparked interest, and he gave me a referral to the oncologist behind it. Looking back now, I'm glad I joined it and believe it has given me best outcome! If you are interested in the details, you can find/read my entries on this site. Which ever direction you choose to go, I wish you the best. As others have mentioned on this site, its' best to get a team you trust and feel good with. Best of health to you!!

For So California L.A. region I recommend the Urology group at UCLA, starting with Dr. Marks

jimbay
jimbay
in reply to NolHaltom

I am in Los Angeles, but I'll go anywhere. Thanks.

NolHaltom
NolHaltom
in reply to jimbay

Worth checking them out if you are here. Highly ranked!

AlanMeyer
AlanMeyerModerator
in reply to NolHaltom

UCLA is one of the NCI designated "comprehensive" cancer centers - NCI's highest level of evaluation.

California in general and Los Angeles in particular are loaded with top institutions. See: cancer.gov/research/nci-rol...

Alan

Whole gland brachytherapy (radioactive seeds) is worth considering. It irradiates the prostate without radiating the rest of the pelvis.

It's a pity you have one of the cancers that does not show up on MRI.

Stop drinking cows milk and eggs and buy some Lugols iodine and inositol go vegan if you can taurine is a good supplement also get a good probiotic

Check out Provenge and HIFU

Wishing you well

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