Hello, everyone. I was diagnosed with Gleason 8 prostate cancer 2 weeks ago. I live in Los Angeles and I'm about to turn 53. Here's my test history:
2017 - first high PSA test of 2.7. DRE normal
2017 - 2019 gradually rising PSA up to 3.2. Annual DREs still normal
2021 - PSA up to 4.7, DRE normal. Opted for MRI instead of biopsy. 3T MRI found extensive evidence of prostatitis, but no indications of neoplasia. No symptoms.
May 2022 - PSA down to 4.3. Normal DRE
May 2023 - PSA up to 6.8. UCLA Health urologist finds nodule on right side during DRE. Blind biopsy scheduled.
July 17th - Received biopsy results. 3 of 14 cores malignant; RLB 10%, a 2nd RLB core at 30%, and RLM 40%. All 3 cores graded 4+4=8(4). The PNI column is empty, so I'm hoping that means no perineural invasion. The UCLA Health diagnosing urologist recommends treatment because of grading (RP because of age and good health) and makes referrals for PSMA PET, a urologic oncologist, and a radiation oncologist.
July 31st - PSMA PET scan. "No PSMA evidence of metastatic disease. Faint to low diffuse PSMA expression within the prostate gland with small focus of moderate PSMA expression within the right peripheral posterolateral apical/mid gland compatible with biopsy-proven disease. SUV max 4.1."
Upcoming appointments:
August 9th - Dr. Robert Reiter (urologic oncologist)
August 18th - Dr. Amar Kishan (radiation oncologist)
I asked my diagnosing urologist about getting a second opinion on pathology from Johns Hopkins, and was told to discuss it with Dr. Reiter during my consultation appointment. I'm going to ask him about possible genomic biomarker testing on the biopsy tissue, so I'm not sure if it's a good idea to have the slides shipped elsewhere just yet.
In the meantime, I've been reading Mark Scholz's "The Key to Prostate Cancer" and Patrick Walsh's "Surviving Prostate Cancer", and watching Malecare and PCRI videos on YouTube. I'm trying to keep an open mind about all treatment options at this point, staying aware that I'm probably going to be recommended aggressive treatment for Gleason 8 at age 52.
I'm only 2 weeks into this, so I'd appreciate any advice about what else I should be doing at this point, such as other doctors in Southern California I should be checking out, or questions I should be asking Drs Reiter and Kishan during my consults.
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I know this is all new to you, so I wanted to congratulate you on the steps you've taken so far. A few comments:
1)Reiter and Kishan are about as good as it gets.
2) "RP because of age and good health." I disagree completely. Those are two good reasons to avoid RP - you have longer to live to impotence and incontinence.
3) "I'm going to ask him about possible genomic biomarker testing on the biopsy tissue, so I'm not sure if it's a good idea to have the slides shipped elsewhere just yet." It's much more important to get a correct diagnosis - your treatment depends on it. Genomics will make no difference in your treatment but correct grading will. There is a clinical trial at Cedars-Sinai that asks for a Decipher score, but you will have plenty of time to get the slides back if you opt for it:
I can imagine you are in a stressfull situation, and have a lot of question about your life, until now and after now (now=diagnosis).
My PSA also was rising and going down im my early 50s. Now i m diagnosed with G7 at 57.I took time before I choose my treatment. I think i had the tumor for a while before diagnosis, and i was thinking what would I have done if I would have been diagnosed earlier. What would my life have been like, and how it will be from now.
aggressive treatment for Gleason 8 at age 52 : this is what might be a bit stressfull, but dont hurry, anyway. Drs know there job and have experience.
My husband was 49 at diagnosis with Gleason 9. His was metastatic at diagnosis- sounds like yours may not be. I agree with Tall Allen above. You can check my profile for my husband's treatment details- keeping in mind he was metastatic. An RP has many long term issues I'd be leary of at your age. In my years if researching and watching forums- Urologists usually want to do surgery first. I'd be interested to hear what the Radiation oncologist and Medical oncologist have to say. I also trust Tall Allen's opinion on the doctors you're seeing- but if you want a 2nd opinion you don't need their permission. Just call where you want to get the 2nd opinion and ask what they need to give you one. You've found a great place here on this forum!
Totally agree with TA regarding Dr Kishan (I have not met Dr Reiter), he is great. I traveled from GA to LA to be treated by Kishan (and on ViewRay) and am glad I'm under the care of a RO that is a leader in the industry and is current on other trials and treatment options. He will be honest with what is best, from his experience and knowledge, for your case. And you never feel rushed with him. With all he has going on around him, he will answer your questions like he had nothing else to do, it is very calming as you are trying to determine your best path.
We are luck to have TA as well to help inform and would highly recommend joining his support group.
i was also recommended RP because of “age -59 and good health” When I asked what exactly that meant I was given the explanation that less “the cancer is gone and you ‘probably’ will bounce back quickly will far less chance of side effects” I asked if he could point me to studies confirming this he told me it is what they see everyday in practice. That wasn't really an acceptable answer to me. I suppose Tall Alan has become a bad influence on me as a patient.
Hi. I had a similar diagnosis - high risk (in my case Gleason 9) but only a small amount and no scan evidence it had escaped. I talked to a lot of docs. I didn’t want the long term effects of high levels of radiation but RP by itself didn’t seem enough since even if scans don’t show it, there might be micromets. So I chose an innovative process called neoadjuvant intensive ADT for 6 months to get rid of any micromets followed by RP to get rid of the motherload. Very happy with my decision. 3 years later no evidence of cancer, no issues with incontenence, some ED but manageable. I had the procedure at NIH but since you are in Southern California, if you are interested, you could contact Rana McKay at UCSD who also does this (procedure written up in layman’s terms in the blog “vital jake” in case you want more info).
I asked Dr. Mack Roach at UCSF one of the top RO's in the country about surgery and he said shaking his head : "I wouldn't do surgery" and I firmly believe that he said that not because he is a RO but because he is a scientist and data man.
I'm trying to not be biased against any particular treatments at this point while I'm absorbing information, but I'm glad I've read so many recommending against RP, so I won't be going into my consult with the surgeon thinking it's the obvious choice.
I suspect one appointment I'm missing is with a medical oncologist. I'd like to get some thoughts on my case from a doctor who doesn't perform surgery or radiation therapies. UCLA Health has a few (Matthew Rettig, Alexandra Drakaki and John Shen) who are listed as specializing in genitourinary cancers, so that might be a place to start. Does anyone here have experience with them, or have another medical oncologist they can recommend? (Thanks, Tony666, for bringing my attention to Rana McKay at UCSD)
My insurance uses ULCA Health as a PPO, so (at least for the first consults) there's a big financial incentive for me to keep it within the UCLA prostate cancer department. I do have the option of going elsewhere by paying co-insurance.
In the meantime, I'm exercising a lot more than I used to. In part to be better prepared to endure coming treatments, plus I'm finding it helps with the anxiety.
Welcome to the club, I'm very similar in your age, I'm 55, Gleason 3+4 in 2 cores. So I've been researching like crazy and been all over various forum boards, watching videos, reading books just like you. I'm on the fence about which treatment I'll be going with. It seems like many of the people in this forum really are proponents of radiation, especially with Dr. Kishan from UCLA. There's a lot of negative vibes on the RP option. But I'm sure you have read and watched where there's been great outcomes, and bad, with both procedures. So what do you do, just keep researching and talking to others who have had both procedures. I met with Dr. Lau, from City Of Hope in Duarte, and I've met with Dr. Kishan from UCLA. Both were very informative and patient with all of my questions. I have yet to decide on what I'll be doing, but one thing that Dr. Kishan said to me was that if I have a great surgeon, like Dr. Lau, he would be comfortable with me going that route given my age. I appreciated his honesty. I really like the idea of SBRT, but the fact there's not long term data, gives me hesitation. Dr. Kishan said they have 12yrs of data to use as a guide for long term side effects. If I was in my 70's /80's I'd be doing SBRT without a doubt. But I'm concerned about late term urinary/rectal issues when I'm in my late 60's or beyond.
I know of a few men you have had RP, and yes urinary and article function was an issue early on, they are now fully functional. So to say RP is a bad choice is just not accurate. Everyone will have their opinion, but you have not research and decide what's best for you.
Good luck on your journey. Take care and stay positive !!!
I was diagnosed at age 49 -Gleason 7. Researched you tube videos and listened to above listed audio books and met with medical oncologists and urologists . I decided RP was my best choice due to my age and the risk for late term side effects from radiation. The key is finding a surgeon that has done thousands of RP’s with success. You have to find the BEST RP surgeon in the country to do your surgery. For me, I put my future with Dr. Edward Schaefer at Northwestern in Chicago. I am 2 years cancer free, had urinary continence and sexual function as soon as catheter was removed. Probably shouldn’t have tested sexual function that early with the incisions but…….. it worked. Dr. Schaefer had me taking ambien 3 days after surgery and catheter came out on day 11. Scary times - I know well. Still hate getting blood work done - afraid it comes back. Try to focus on the good things life has to offer and live life to the fullest. Still take ambien daily because my wife says I’m like a 18 year old again.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
Scholz is in Marina Del Ray, you can make him your head doc if you want. I don’t think he takes insurance though?
You have two of the very best doctors. My situation is dry much like yours and i found them to be knowledgeable and helpful. In my case i went with SBRT radiation and ADT. Duration of ADT is a big variable as its side effects are very noticeable, but as Kishan will tell you it decreases recurrence. I am in the valley and if you want to chat PM me
The meeting with Dr. Reiter went well yesterday. My wife and I both had a positive impression about him. He patiently answered my questions, and had already answered half of them before I even started on my list.
He didn't think that a Decipher test would be useful in my case. He uses them for low risk cases considering AS, but not for high risk cases like mine. He said I can get a second opinion on pathology if I wanted to, but that he trusts the UCLA team-based pathology results for prostate biopsies. He also said his recommendations wouldn't really change even if another lab downgraded cores to a 7.
As expected, he didn't consider me a candidate for for AS, or for focal therapy, given the pathology. He recommended treatment within 3-5 months with either RALP, or radiation+ADT. He didn't push surgery, but said that most men with cases similar to mine choose it. He was glad to hear that I had an upcoming appointment with Dr. Kishan and encouraged me to wait until after that meeting to make a decision.
He said there were encouraging signs for treatibility - a small lesion on the PSMA PET with no signs of extracapsular extension or significant lymph node spread, all on the right side of the prostate, no perineural invasion on the biopsy, PSA level below 10, and nothing significant on the 2021 MRI with a drop in PSA in 2022, so he thinks we probably found it early. If I opt for RALP, he felt he could be liberal with nerve sparing on the left side, but the amount on the right side would decided during the procedure.
I was also encouraged to hear that at UCLA, penile rehab and pelvic floor PT are offered both pre and post surgery.
I asked him about inguinal hernias following RALP. He thought that most of those cases probably began as small, undiagnosed hernias which were then made larger by the prostatectomy. I told him that I'd already been diagnosed with bilateral inguinal hernias several years ago and while I had considered having them repaired, I decided not to risk the surgery since they weren't causing any pain or discomfort. He said in that case, he would hand over the DaVinci controls to a general surgeon at the end of the RALP to repair the hernias before closing. Two for one.
One thing I forgot to ask; if I opt for radiation over surgery, would the radiation damage make a future hernia surgery more risky, should it act up and need repair.
I understand that there is no established best treatment, and every case has its own nuances, but in the end, the doctors want you to decide on treatment. I am struggling with either surgery or hormone therapy and a Turp or HoLEP, followed by radiation therapy after the TURP has healed, both regimes having risks and problems
The appointment with Dr. Kishan (radiation oncologist) went well yesterday. I really liked him a lot, and I feel that between him and Dr. Reiter (surgeon), I'd be in good hands. He said that he would recommend external beam + 1 year of ADT if I decided to go with radiation, but that he also felt that it would probably make more sense for me to go with surgery.
He thought that between the PSMA Pet scan and 6.8 PSA, there is a good chance of a low-volume of disease confined to the prostate which might be cured by surgery alone, despite the Gleason 8 risk. He felt the chances of a cure were similar between surgery and radiation+ADT, but that since I'm 52, there isn't enough data to understand the 20+ year risk and safety of radiation. If I were a decade or more older, he'd probably recommend radiation over surgery. He felt that long-term ED risks were similar either way, but that radiation had a better chance of avoiding UI incontinence.
We're ordering a Decipher test. He said the only effect it might have on his treatment suggestion would be extending the ADT time if it comes back high. The same with a second opinion on pathology - an upgrade to Gleason 9 would increase the length of ADT, but a downgrade to Gleason 7 wouldn't change his recommended ADT time. I'm getting an MRI in 2 weeks which would be used for radiation planning, if I choose that route, and it could also give Dr. Reiter a better idea of how much nerve-sparing might be expected. I also sent in a cheek swap for radiogenomic testing to see if I have biomarkers which might indicate that I have a high risk of toxic reactions to radiation.
I'm still undecided, but I'm leaning towards prostatectomy right now. Two very good doctors, including a radiation oncologist, have said that RP would probably make the most sense for me. Mentally, I prefer the idea of having the worst side effects immediately after treatment, knowing that progress can be made in the coming months and years on continence and erectile function, as opposed to radiation, where side effects might be minor at first, but knowing that they might get worse over the coming years. I also have a lot of concern about the effects of 1 or more years of ADT while I'm still working to provide an income and health insurance for my family.
I'm keeping in mind that going with RP still might result in a rising PSA which would require salvage radiation+ADT, so I'd get all the risks and side effects of all 3 treatments. I can imagine that would feel devastating if it happened within a couple of years of surgery, but if it happens 10 years from now, the deferment might be worth it.
There are so many probability risk assessments built on top of probability risk assessments that this decision sometimes feels like throwing at dart at a map.
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