Just dx’d: G7(3+4), Stg 3b, leftSV - Advanced Prostate...

Advanced Prostate Cancer

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Just dx’d: G7(3+4), Stg 3b, leftSV

timotur profile image
17 Replies

Woke up to a PSA result of 23 in Sept 2018, and life changed. Did successive freePSA and 4K tests (2.7%, 77%). First Uro found negative DRE, suggested random biopsy. I elected to see Dr Bahn who did CDUS targeted biopsy yielding a biopsy result of G7(3+4) Stage 3b tumor with left SV involved. Will do a PSMA PET scan soon.

Bahn recommended Brachy + EBRT + ADT.

Also considering SBRT + EBRT + ADT.

Anything else I should consider other than praying? I’ve wondered if RP is an option with left SV involvement.

Thx- 64yo, good health, active, no family history.

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timotur
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17 Replies
Tall_Allen profile image
Tall_Allen

If you are in the LA area, you should talk to Dr King at UCLA about his SBRT clinical trial for high risk patients. There's no need to add EBRT to SBRT because SBRT is already external beam.

Brachy boost therapy is the tried and true standard of care for high risk patients.

The open question is whether ADT is needed for use with either of the above and for how long. It is probably a good idea to treat your pelvic lymph nodes too.

Surgery will remove your prostate and seminal vesicles, but with your risk characteristics it is likely that it has already spread locally:

mskcc.org/nomograms/prostat...

It is a really poor idea to have surgery knowing in advance that you will have radiation on top of it. The risk of side effects is worse, and it does not seem to be as curative.

timotur profile image
timotur in reply toTall_Allen

Thanks Allen, appreciate the response. It confirms what I have been reading in the forums and trial results.

Yes, I looked at SBRT, and it is basically EBRT with dynamic beam forming to adjust for breathing movements to keep the radiation centered on target. My initial thought was, it seems overly complicated for a small gain, but that's why they are doing the trial to assess it. I've contacted them at UCLA and sent my info. Also at UCLA is Dr Demanus who does Brachy, seems to have a lot of experience in this field.

Dr. Bahn recommended ADT for 3-6 months to account for micro-metastasis. Is it a good idea to delay ADT unless absolutely needed, say after Brachy or SBRT, and not as a pre-TX?

Thanks for the link to the mskcc.org website. I see what you mean, there is significant chance it has spread to the lymph and other areas.

Ok, I'll proceed with Drs King and Demanus at UCLA. I live in San Diego, so it's not too bad getting up there. Thanks again for your insights.

Tall_Allen profile image
Tall_Allen in reply totimotur

SBRT has nothing to do with breathing (that has very little effect), but does correct for organ motion. The major benefit over IMRT is 5 treatments vs 40-44 treatments. It is well established for lower risk levels, but they are doing the trial to see if it works as well for high risk patients. I had it, btw. Dr Demanes has retired. Albert Chang replaced him at UCLA. Mitchell Kamrava does HDR brachy at cedars Sinai.

In San Diego, you have Don Fuller doing SBRT - but I don't know if he accepts high risk patients.

ADT before and during radiation ("neoadjuvant") is thought to radiosensitize the cancer. Afterwards, it can kill any strays. It is not clear that it is still has any benefit with the high intensity radiation one gets with SBRT or HDR brachy. Talk to the experts.

timotur profile image
timotur in reply toTall_Allen

Allen, this is great info and clarifications, giving me some more options to check out with Drs Chang, Kamrava, and Fuller.

Just wonder if BT was an option for you, and if you chose SBRT over BT for a particular reason? It's looking like those are my two options. Thanks again. Tim

Tall_Allen profile image
Tall_Allen in reply totimotur

Yes it was. I talked to both Dr King and Dr Demanes in 2010 for my low risk PC. SBRT was in a clinical trial at the time. I could have gone either way. Toxicity was similar - maybe less acute urethral strictures with SBRT. Recurrence-free survival was about the same, so far. In the end I decided on SBRT because it was a lot easier (no anesthesia or hospital stay) - just lay down on a bench for 5-10 minutes 5 times. It was also a lot cheaper.

timotur profile image
timotur in reply toTall_Allen

Hi Allen, may I ask, when you chose SBRT, were you Stage 2?

I'm reading for Stage 3 like mine, that BT + EBRT is better than EBRT alone, which makes me think I should go with the former, acc. this article...

"Researchers recently evaluated the effectiveness of brachytherapy plus EBRT versus EBRT alone in the treatment of over 300 patients with advanced localized prostate cancer. Half of the patients received treatment consisting of both brachytherapy and EBRT and the other half received EBRT alone. Five years following treatment, high PSA levels existed in only 33% of patients that had received the combination of brachytherapy plus EBRT compared to 56% of patients that received EBRT alone. Since high PSA levels are an indication of the presence of cancer, these results suggest that brachytherapy plus EBRT may be more effective than EBRT alone in the treatment of advanced localized prostate cancer."

cancer.unm.edu/cancer/cance...

I am encouraged reading about HDR-BT at UCLA, that it’s my best option...

uclahealth.org/radonc/prost...

Thanks, Tim

Tall_Allen profile image
Tall_Allen in reply totimotur

As I said, it is a clinical trial at UCLA. SBRT is NOT the same as IMRT- the biologically effective dose is MUCH higher -in fact, the dose to the prostate is similar to brachy boost therapy. Brachy boost therapy is certainly the "tried and true."

tango65 profile image
tango65

it is not the standard of care but you could discuss with your doctor to have a PET/CT done (PSMA based or Axumin) beforany treatment to determine with precisionwhere the cancer is located and help the RO to plan your treatment. It has been studies showing that after a PSMA PET/CT the doctors had to change previous treatment plans in about half of the patients.

ncbi.nlm.nih.gov/pubmed/295...

jnm.snmjournals.org/content...

timotur profile image
timotur in reply totango65

Tango, yes, Dr Bahn also recommended a PSMA Ga68 PET scan and I am scheduling that this week. It's expensive ($4800) but I see it's important to check for metastasis. Thanks for those links!

tango65 profile image
tango65 in reply totimotur

Best of luck with your treatment.

babychi profile image
babychi in reply totimotur

We paid $700 in Australia for a PSMA pet scan in May 2017. No Medicare subsidy, no insurance. Not sure why the cost is so high where you are located. Can you shop around or check out a few radiologists?

timotur profile image
timotur in reply tobabychi

Wow, it's almost worth the flight to AUS at that price! Yes, I called another group associated with a hospital and they said it was $19,000! So looks like $4800 is lowest here in San Diego. I'm calling up in LA tomorrow and see what I can find out. One thing I'm hearing is it's not yet approved by the FDA and a lot of centers don't provide it, so limited suppy = higher price!

babychi profile image
babychi in reply totimotur

Heavens to Betsy! Might try Canada too? My friend from U.S. has cancer treatment in Singapore. Far less expensive than her homeland. Thailand, Malaysia and Singapore all have excellent diagnostic and treatment centres. And yes, we are very fortunate here to have excellent support from our health care providers. Hope you can get the scan at a reasonable price. 🌼🎅

Katyandscott profile image
Katyandscott in reply totimotur

We participated in the clinical trial at UCLA in September and paid $2600.

Break60 profile image
Break60 in reply totimotur

Timotur

I see you’re 64. When you turn 65, Medicare will pay for the scan, medigap pays the 20% not paid by Medicare and you pay $875 for the radio tracer which is not covered because it’s not FDA approved yet but probably will be soon based on the trial results submitted. . And least that’s what I just experienced for my PSMA ga68 scan at UCSF in China Basin.

Bob

timotur profile image
timotur in reply toBreak60

Thanks Katy and Break, I'm checking in the LA area using this website:

petscanworld.org/find/CA_Ca...

I've got 8 months to go to 65, so I'll have to wait on Medicare coverage.

I have a little time, 1st appointment with Chang is on Jan 7th.

tsim profile image
tsim

Sorry for the late reply, could I ask if you are N0M0? Even though my PSA was higher (40ish), I have basically the same stats with a small left SV tumor, slight perineural involvement and am N0M0. I was checking stats from the NCI patient database, this is a rare group. I chose HD Brachy, IMRT, and ADT. Almost 2 yrs out, stopped ADT at 18 months. So far, so good.

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