Prostate Surgeons in Southern California

67 year old. Recently, got Biopsy Gleason Score of 4+5 = 9. Grade Group 5. 10% Gleason 5 Pattern - Involving 50% of one core and 26% of a second core. Tumor Lengths: 4MM and 6MM. MRI Scan showed nothing. PIRADS 2/5
Report states: Carcinoma is seen only in the biopsies from the left apex. This reveals a GG5 lesion mostly pattern 4 but with some pattern 5 invasive carcinoma. The target lesion is benign. Otherwise the cores show florid prostatic hyperplasia of ducts and acini.

Not sure what all that means.... though i am now reading like crazy everything I can. This seems to be an incredible forum with a lot of knowledge. I do know that Gleason Score is not good. Indicates aggressive cancer etc.

I am, as of now, dealing with Dr. Timothy Wilson. He used to be at City of Hope, now at St. John's in Santa Monica. Are there any suggestions for So. Cal surgeons? I hear Wilson is highly rated... any comments? Also... suggestions for a second opinion on the biopsy (should I bother)... I read that Dr. Epstein and John Hopkins is the place for a second opinion. AND.... any suggestions for top notch So. Cal oncologists I could consult with.

Scared but trying to focus and move forward. Any help is truly appreciated.

Post Edited By Moderator (PeterDisAbelard.) : 9/14/2018 9:16:06 PM (GMT-6)

Billyboy,

Did you accidentally repost your original thread?

Prostate surgeons in Southern California

Billyboy,

Here's some suggestions (I can't speak to So Cal docs, I'm on the east coast)...
1. Ask to have the slides sent to Johns Hopkins for second opinion. Your doc's office will know how.
2. Get referrals to radiation oncologists who do both external beam and the various flavors of brachytherapy (LD, HD, SBRT)
3. I like your surgeon who says you have time to figure this out.
4. Once you have talked to ALL the experts, then make a sane and thoughtful decision.

Oh, welcome to the club.

Hi from a fellow G9 in SoCal (San Diego area). I don't wish to talk you out of surgery if that is your choice, but you should search for and read the Ascende study. There are several of, myself included, that have opted for "triple play" -- hormone treatment + external radiation + "brachy boost" (LDR or HDR). When I did my research I found that the odds suggested G9 treated by surgery had 50% or higher follow-up radiation, where as a couple of studies showed G9 "triple play" with 97% survival in first 10 years and 84% cancer reoccurrence free.

But bottom line, get a second opinion, research your options, and then choose what makes sense for you and then don't look back.

I had a consult with Dr King as well -- too far of a drive from San Diego or I may have selected him for my treatment. As it is, I decided to treat with UCSD doctors.

It took me just short of four months from DX until I finally made my treatment decision. Trying to decide which way to go was probably as stressful if not more stressful than knowing I had cancer. It was a big relief to make a decision, though I still found myself wondering if it was the correct choice for a couple of weeks. I'm past all that now.

So, take the time you need, but I would want to do it on the sooner side if you can because as G9 we need to have more of a sense of urgency to treat as the risk of micro metastasis occurring is present.

It's been awhile since I posted. I sincerely appreciate all the advice and help I got. Here's what I've done and what I am planning to do:

---I DID send biopsy to Epstein at John Hopkins - he confirmed the 4+5=9.
--- I spoke with Chris King at UCLA - kinda an odd guy - but very very knowledgeable - very helpful.
--- Spoke with Dr. Bergland (I think I got the name correct) at the Cleveland Clinic - he's a surgeon.
--- Spoke with Dr. Lam at Onclogist Specialists in Marina Del Rey. Another VERY knowledgeable doctor, very
thorough very helpful.
--- Spoke with Dr. Timothy Wilson - used to be at City of Hope - now at St. John's in Santa Monica, Ca. I believe he
has done over 4,000 robotic prostate surgeries.
--- Wilson sent me to UCLA to have a PSMA test done. My understanding is that it is probably the best test you can
have to determine if there is any prostate cancer that has spread. It's relatively cutting edge type of test. THAT
test showed nothing anywhere else in the prostate and adjoining regions - accept for what the biopsy showed (left
apex of the prostate.)
--- I have scheduled surgery with Dr. Wilson for early December. I actually know a patient of his. All went very well for him several years ago when he was 68 or 69 years old. All the doctors stated the latest studies showed basically the same success rates for radiation and surgery. I feel that I would no do well if I had to do MONTHS of radiation plus hormone therapy plus seeds etc. This could extend easily to 19 months or more. Even with Dr. King's methodology (which appears to be a quicker treatment time.) I think all the doctors (with the exception of Bergland in Cleveland) told me something to the effect of "It's kind of strange situation because it's high grade cancer - but it appears localized." Again, the PSMA showed nothing but the apex location - and the two prior MRIs didn't see anything at all. Dr. Wilson's reputation was known by Dr. Lam and Dr. King. And vice versa. With surgery - I'm out the next day. Catheter out maybe six days later - and I'm on my way. I FULLY UNDERSTAND that if the cancer shows up again - I could be knocking on the Oncologist's door. I'll take that chance at this point. The man I know that underwent this procedure with WIlson about 12 years ago - said his sexual function came back in a few months. He said he was up and around in days. He also said that now, in his 80s, there is significant ED... but not completely dysfunctional. ANY AND ALL COMMENTS are appreciated. I'm pretty thick skinned - feel free to disagree or point out anything I may have missed (or just didn't include in this post). The BEST advice I got on this post was GET OTHER OPINIONS - EDUCATE YOURSELF THE BEST YOU CAN - and TRY AND MAKE AN INFORMED DECISION. I have to say - the doctors I spoke to were ALL very very helpful...and I would have felt pretty good in the hands of any of them. Again, feel free to let me know if my thinking on all of this seems reasonable..

Hi Jim, I went back and looked at my PSMA test results (That is a PETCT with Diagnostic CT of the neck-chest-abd-pelvis w/IV contrast: Ga68 PSMA-11)... what all that means I'm not sure. Other than it cost me a lot of money and I was told it was the way to go. This is a synthesis of a CT and PET scan.
OK... so..."Impression" was "Newly diagnosed prostate cancer with PSA uptake in the left apical aspect of the prostate gland." AND.... "No evidence for extra prostatic metastatic disease." Further down on the report under "Legend" it says "Local tumor involvement = Unifocal organ confined tumor. Left mid, left apical sextant is involved: THEN it says "No positive region lymph nodes" AND THEN "no distant metastases."

So I'm presuming all of that means the answer to your question is no. And that seems to be a "good thing."

Good research.

Keep us updated on your progress. I have a feeling you'll do just fine.

Andrew

Billyboy:

Congratulations on such great research and on arriving at your decision to have Dr. Wilson perform your surgery.

Wilson performed my RRP at City of Hope in early 2011, and like he says you will be out with a catheter in the next day or so. The catheter will be out in about a week. For me, incontinence was a minor issue. I needed less than one pad a day for about two weeks at the most. Wilson always performs a nerve sparing procedure and every man is different with regard to how long you will have to deal with the ED. You will no doubt be prescribed Viagra or Cialis to help it along. The object is to keep the blood flowing. Wilson also performed a lymph node dissection during my surgery. Although one was positive, he chose to complete the surgery removing a total of 16 lymph nodes, mostly from the left where my tumor was located. Recovery time for me was about two weeks and I was back to work after three weeks. Although my surgical pathology was not the best, my first post op PSA was undetectable.

Best of luck with your RRP, you are in very good hands with Dr. Wilson. Please keep us posted on your results.

Rick

Congrats on making a decision...it seems well-reasoned on your part. Good luck with the surgery and do keep us posted on how it goes.

Disclaimer, Disclaimer, Disclaimer, I have a severe bias against anything to do with surgery of the prostate for the primary treatment of prostate cancer. I am not a physician or a scientist. I am a cohort of 1. I express my opinion and only my opinion.

I am a post-surgical guy. about 10 years out. I have very limited side effects from surgery.

You said you had thick skin…
With your numbers and age, surgery is the last thing on earth that I would consider. (please remember I would never recommend surgery regardless of age and pathology) Why on earth would you place yourself in a position to change quality of life forever? And in a position that has a huge likelihood of needing additional therapy (radiation) when radiation alone would be a super-duper primary treatment modality.

Regardless of where you end up on the Dry/Wet paradigm you are going to be without a prostate. Sex without a prostate is about as much fun as having sex while undergoing endodontic therapy. I’ve given up, it’s not just worth the effort. I don’t have ED. I don’t ejaculate urine (it’s a thing post prostate surgery look it up, Climacturia). Orgasm post-surgery is an embarrassment. The tactile sensation of the genitals and surrounding areas is noticeable different. It’s difficult to explain but I’m being very open and telling you like it is in this group of one.

I’m in the very lucky group because I have a wife of 40 years that loves me and I do my best to keep her happy. Marriages have been dissolved post-surgery because of the change in sexual activity. That is a fact! We however enjoy our intimate time together it just doesn’t involve me having the traditional experience. This isn’t going to be an issue for us because we (she is) are amazing in how we work and communicate together.

Others will say that they have wonderful (even better) sex after recovery from surgery. I have no reason to question the accuracy of such remarks. I can only attest to my own situation.

I wish you the best. The surgery in and of itself is a walk in the park and for the most part could be done as an outpatient. I could have easily came home the day of surgery and other than the fact that my wife was able to hit every pothole on the 70 mile way home that caused some discomfort I didn’t need any pain medication. (that’s part of that working and communication that I was talking about, she laughed at each thump…lol)

Even with the catheter I was very active, I able to return to a desk job as soon as it was pulled. In short order I was back working all day outside on the weekends. I would say the overwhelming majority of people that I see regularly never had a clue that I had a surgery. (same with my younger brother, however because he just wanted to take off, he was out of work for about 6 weeks. He is now retired and he has no restrictions related to his prostate surgery.) I would comment that at the time of surgery I was in the best adult physical condition of my life!

My best to you, good luck with surgery and recovery.

Hero