recently diagnosed and gathering info - Advanced Prostate...

Advanced Prostate Cancer

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recently diagnosed and gathering info

SkyH profile image
SkyH
39 Replies

New to the group. 65 yr old, 4+5 G; 20 PSA; extracapsular extension; getting PSMA scan. I've found who I think is a very good and unbiased Oncologist in Dr. Mark Scholz at Prostate Oncology Specialists in LA. He is recommending focal seed implants from Dr. Chang at UCLA for 1/2 of my prostate that is affected.

Does anyone have any feedback about these specialists? I've gone to Urologists (surgery!) and radiologists (beam radiation!) but the conflicts of interest are more than obvious. Just getting started on this journey and of course, petrified of the potential side effects. Any feedback would be greatly appreciated!

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SkyH profile image
SkyH
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39 Replies
6357axbz profile image
6357axbz

There’s a guy in our group, Schwah, who can tell you much about Dr. Mark Scholz. You could wait to see if he chimes in or simply message him...

SkyH profile image
SkyH in reply to6357axbz

Thanks for the help! I'll try to reach out to him.

6357axbz profile image
6357axbz in reply toSkyH

Schwah had 40 % of his prostate removed.

RyderLake2 profile image
RyderLake2

Hello, I don’t know Doctor Chang but Doctor Mark Scholz is one of the best. He hosts the annual Prostate Cancer Research Institute (PCRI) conference every September in Los Angeles. Scholz is very aware of what is happening in the PCa world and is a top notch doctor. You are in good hands with him. Hope that helps.

SkyH profile image
SkyH in reply toRyderLake2

Thanks very much for that. It's taken me awhile but I feel he is one of the best.

timotur profile image
timotur

I'm seeing Scholz/Chang— I had excellent treatment for t3bN1 PSA 29 (see profile). I would suggest HDR Brachy and treat the whole gland as Dr Chang did for me, along with 25x IMRT and 18months ADT. I'm a little surprised Scholz is recommending LDR Brachy with seeds and only treat 1/2 the gland for your GS-9/PSA-20, but you need to have a consult with Chang if you haven’t already-- he's great. PM me if you go this path and have Q’s.

SkyH profile image
SkyH in reply totimotur

Thanks. Sounds almost identical to my situation. I wouldn't say he is "recommending" just the 1/2 with cancer... but suggested I push the idea when I meet with Dr. Chang as a possibility. I meet with Dr. Chang this week and if you don't mind I'd love to get your opinions after that.

timotur profile image
timotur in reply toSkyH

Dr Chang won’t do partial gland tx with Brachy, but I may be wrong. I naively mentioned it to him, but he said it’s a non-starter for high-risk PSA>20 with EPE. Chang will likely recommend HDR-BT with SpaceOar as in my profile- did an excellent job, no SE’s at all. Yes, will be glad to chat with you about it. Tell Dr Chang, Tim from San Diego said hello and highly recommended him.

SkyH profile image
SkyH in reply totimotur

This is excellent feedback thanks so much. I'll mention you say hi and give you his recommendations later this week.

SkyH profile image
SkyH in reply toSkyH

Tim just curious, did you look at California Protons for radiation treatment as its in San Diego?Or just proton therapy in general?

LearnAll profile image
LearnAll

Dr. Mark Sholtz is admirable . I wish I had him as my Doctor.

SkyH profile image
SkyH in reply toLearnAll

thank you. it took some time to find him.

in reply toSkyH

Your guy get top marks. Follow him and heal yourself good man .

tango65 profile image
tango65

You should consider to consult with a radiation oncologist directly about what type of radiation treatment is the most adequate to your situation. I believe Timotur’s treatment is probable the one offering the best outcome.

SkyH profile image
SkyH in reply totango65

thank you...very good idea and I'll do that.

tango65 profile image
tango65 in reply toSkyH

Best of luck. Please, keep us informed.

Tall_Allen profile image
Tall_Allen

(1) Mark Scholz is a medical oncologist, which means he specializes in advanced prostate cancer, which you don't have. He isn't unbiased - he's just biased in different ways.

(2) Albert Chang doesn't do "focal seed implants," he does a kind of brachytherapy called high dose rate brachytherapy. There are no seeds. He implants catheters and puts radioactive needles through them. Unlike seeds, nothing is left inside.

(3) hemi-gland treatment is almost certainly a mistake with your high risk characteristics. The odds that the cancer is only in one hemisphere is less than 10%. Just because the rest of the cancer was missed on the biopsy, doesn't mean it's not there.

(4) Unfortunately, it is unlikely that your PSMA PET/CT scan will show no cancer outside of the prostate. HDR brachy monotherapy (especially focal) cannot be used in such cases. You have to take this one step at a time. After you get the results, you will be in a better position to make a treatment decision.

(5) Start ADT immediately. It will increase PSMA expression in the short run. More importantly, it will prevent any further progression for a while, giving you time to make a treatment decision that's right for you.

garyi profile image
garyi in reply toTall_Allen

ADT increases PSMA expression in the short run, really?? Approximate timing of the "short run". Learn something new every day. Thanks, TA.

Tall_Allen profile image
Tall_Allen in reply togaryi

Definitely in the first month. After that, loss of PSMA expression due to tumor shrinkage begins to give a net loss of PSMA avidity.

rosatt1 profile image
rosatt1 in reply toTall_Allen

I thought 4+5=9 can be advanced prostate cancer. I also thought Firmagon may stop a surge in first month of ADT but I am not an expert. Can Gleason score 4+5=9 prostate cancer be cured by EBRT & ADT?

Tall_Allen profile image
Tall_Allen in reply torosatt1

"I thought 4+5=9 can be advanced prostate cancer." No, it is high risk, but localized, not advanced.

"I also thought Firmagon may stop a surge in first month of ADT" It prevents a surge of testosterone in the first month.. But the discussion was about PSMA expression.

"Can Gleason score 4+5=9 prostate cancer be cured by EBRT & ADT?" Brachy boost therapy has the best results.

KAgolf profile image
KAgolf in reply toTall_Allen

Have a couple of questions I am hoping someone can help with. My husband (77) was diagnosed 1/14/21 with PCa; 4=5=9 and 5=4=9, grade 5. Six/12 cores, all left side malignant; all 6 right benign. PSA was 3.7 in 9/2019, 5.15 in 9/20, 8.18 in 12/20, and 10.43 before Degarelix injection 1/28/21. Last week PSA was 0.54 and T was 41.3 (296 on 1/28/21)

He has had CT, PET, Axumin PET, and two 3-T MRI's; all show 3-4 “suspicious" lymph nodes which 1 doc says are round, not elliptical so that's what makes them suspicious.

With all those tests, NOT 1 radiologist will commit to calling them malignant or benign--all say suspicious, so they are being treated as malignant. He has also had a bone scan and no bone malignancy was seen.

bottom line seems to be 1/2 prostate malignant, plus 3-4 (probably) malignant nearby lymph nodes...... now for my questions:

URO oncology surgeon calls it advanced, very aggressive, metastatic PCa, with extremely high risk. He also calls it stage 4

Other terms used by other docs call it "regional", but do not say metastatic.

I keep reading "metastatic" means it has spread to other parts of body or bones or distant lymph nodes, indicating that the local lymph nodes aren't considered metastatic. IS THIS CORRECT? IS his regional or metastatic? (I'm a bit OCD about correct term)

He was started on ADT right away: 1 mo. Degarelix, then a 3-mo. Eligard, followed by 2nd 3-mo. Eligard. Uro says 3 years on ADT; Proton radiologist says 18 months.

We asked about HDR early on and were told by uro and radiologist that HDR plus radiation or proton would be too much....not sure why they said this since I have read here that many men do that combo

After a lot of research and talking to other men, hubby decided on the Pencil Beam Proton Therapy instead of regular radiation.....will have 40 session with 3 phases:

ph1= 200 gy hitting both left and right sides daily and targeting prostate and ALL lymph nodes in area for 24 days

ph2: 200gy daily targeting prostate and "suspicious" lymph nodes in area for 9 days

ph3: 200gy (I think) daily, targeting ONLY the prostate for 7 days-I believe they call this a "boost"

In 2 days, he will be ½ way through sessions—with 45-60 min. drive each way, seems as if he’s been going for 3 months!!

The uro and MO are at MD Anderson Jacksonville; the Proton is being done at UF Health Proton center (we REALLY like and trust his Proton Radiologist who also has a better attitude about husband’s situation); I know MDA uro isn't too happy we went elsewhere instead of doing their radiation. We do not see the MDA MO again until after proton is finished when he will decide whether to recommend chemo or any other chemicals to go with ADT. At last meeting he mentioned “possibly” using docetaxel (6 doses, 1 x every 3 mo.)

He has osteopenia in 1 hip and osteoporosis in other hip—didn’t know this before the DEXA scan; his primary put him on Boniva. Is this good enough or does he need one of the bone strengthening meds mentioned here?

Wondering if anyone else has gone this route?

If there are any opinions or suggestions we need to consider before going to next step?

If there is a better alternative to chemo? Hubby says he does NOT want chemo.

Trying to be prepared with questions, ideas for next meeting with MO

Tall_Allen profile image
Tall_Allen in reply toKAgolf

Some definitions:

Local= in prostate only (stage T1-T3)

Loco-regional= in prostate, may be growth into nearby organs (T4) and/or into pelvic lymph nodes (N1)

Metastatic= in non-pelvic LNs (M1a), bone (M1b), or visceral organs (M1c)

Stage IV can be T4, N1, or M1

So he has loco-regional PC and is getting proton boost therapy for it, which will be hopefully curative. He has to have 18 months of ADT with it. Chemo adds very little to the benefit.

KAgolf profile image
KAgolf in reply toTall_Allen

THANK you so much; you verified what I "thought" but wasn't sure if I was looking thru rose colored glasses. This site and your replies throughout the site have been/are a great source of info.AGAIN, thank you

in reply toTall_Allen

👏🏼👏🏼

SkyH profile image
SkyH in reply toTall_Allen

Thanks for the info TA. Very helpful. I’m a little confused as Dr Scholz seems to work with men up and down the spectrum of pc. He is more than willing to work with me. Anyway, do you have any west coast prostate oncologist that you would recommend?

Tall_Allen profile image
Tall_Allen in reply toSkyH

I know he takes patients of any stripe. But I think a patient is best off seeing specialists in his type of PC. For you, that would mean talking to several radiation oncologists - not medical oncologists. Save the MO for men with advanced PC. Why let any doctor take your power away? I spoke to 6 specialists before deciding. You seem more than capable enough of deciding for yourself.

In LA, my short list, given your high risk characteristics would include Chang at UCLA, Kamrava at Cedars, and Kishan at UCLA.

If your PSMA scan comes back positive, you can stick with Scholz, or I also like Tanya Dorff at COH, Edwin Posadas at Cedars-Sinai, and Sandy Liu at UCLA.

Turt713171 profile image
Turt713171

A friend of mine saw both Schultz and Chang. He liked them.

Welcome to the club SkyH! Each specialist follows his training. Urologist like surgery.$$$$ Radiation oncologist like to fry us . I was beyond surgery so I did 8 weeks imrt along with Lupron and another now defunct test drug still working for me today . I went into a clear status and have stayed here over five years. Still taking 4 little pink pills per day to keep me in the pink . You will learn it all and more . In one year you’ll

Be the expert on pc Scholz sounds good to me . Good luck .

SkyH profile image
SkyH in reply to

Many thanks LuLu700.

in reply toSkyH

The point is to smell any roses along the path. A reason yo live and endure is mandatory . I’m sure that you have many. Heal yourself from this point forward a health kick . You’ve found this best place for info . Keep rolling !

SkyH profile image
SkyH in reply to

Thanks very much! Big time health kick indeed!

in reply toSkyH

Bravo! You can do it! 💪

Qiviut profile image
Qiviut

I have similar Gleason PSA numbers. I have found the PCRI website and YouTube videos to be very helpful. Dr Scholz collaborates with many brilliant minds in this field of medicine and is an incredibly good communicator. PC is complicated and individual. I am trying to decide between IRMT versus SBRT treatment which will start soon. The seed implant can be done with the other approaches to treat the tumours locally. Some doctors elect to be very aggressive in their approach to the disease, so all options are on the table. You will find this website to be very helpful. Stay clam and soldier on.

SkyH profile image
SkyH in reply toQiviut

Thanks, Qiviut really appreciate the info. I haven't seen this website so just looking at it now. Need to quickly educate myself on this. Jeez quite complicated and contradictory. This is quite helpful. Appreciate it man.

in reply toSkyH

It’s tmi initially. But you will soon understand it as good as anyone can . A lot of terminology. Ask questions. Someone has been exactly where you are now. We can all relate . The first is the hardest transition You will push the beast down .. like I and others have 💪

VCinTx profile image
VCinTx

Also check out a new process. It is called TULSA and you should check it out.

Wilbur77 profile image
Wilbur77

SkyH, I was in a situation much like yours 2 years ago with Gleason 4+5 and PSA of 29. One suspicious lymph node and seminal vesical involvement. Oddly (seems to me) biopsy also revealed cancer in right node only. At Lowell General in MA I consulted with urologist, imrt radiation specialist, HDR BT specialist, and medical oncologist (for Casodex and Zytiga). They held council to discuss patients each week -- supposed to be working together as a multi-disciplined team. They put on Casodex for a month and then Lupron and Zytiga to both start treatment as soon as possible and to reduce the size of the prostate for Brachytherapy. In my case, they did the Brachy first (at Lahey) and then IMRT external radiation. Combined with the Lupron and Zytiga, this aggressive treatment, as TallAllen said, has been shown to be very effective. Side effects were minimal - a little trouble peeing resolved with Alfuzosin and some minor rectal effects at year 1.5. The Brachy was an impressive combo of Radiologist and Oncologist - they worked towards the best plan together and kept me there until like 11 pm at night. They were able to get to both the Lymph node and the seminal vesical. A very committed team that I was lucky to have. Just finished up my Lupron last week and hope to move on to a new normal! (Had to quit Zytiga early due to liver trouble). Good luck with your decision and your treatment.

SkyH profile image
SkyH in reply toWilbur77

Wow…that sounds pretty close to my situation. My PSMA said “4mm left pelvic sidewall lymph node with low level uptake, suspicious for metastatic disease. No other focal uptake is noted in the pelvic area”Not sure what that means.

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