Wow ! Newly Diagnosed Prostate Cancer. Greatly appreciate some Guidance with all this new Technology. Tampa Bay Area.

[mijona]

72yo – Gleason 7 – (4+3)- Group 3 - PSA 6.456 – PHI 91.7 – Free 12.86% - Localized in Left Lobe – Clean PSMA- 8mm Lesion – 15 cores taken – 5 unfavorable – 36cc PH -

Hi All, Recently diagnosed with PC. Had the MRI, Biopsy and Pet PSMA done. Urologist suggested ERT + HT ( 6 mths). Started to research with an RO and on the internet. External Radiation Therapy brings so many options, is mind-boggling.

-RT- PHOTON , PROTON, MRI LINAC , SBRT, MRg-A-SBRT, 3DCRT, IMRT, VMAT – GammaKnife, CyberKnife, Truebeam, LD longer treatment, HD shorter treatment, etc.etc. Since my diagnosis is localized just in one lobe, which machines have the best safety success , LD, HD, etc. ?

- Also my Urologist only started doing SpacerOAG since 1 year and only done 50 so far. And the complications if not done right ? Researching on the Internet are statements that with certain ERT machines, you don’t need to have the SpacerOAG gel or some even say markers done. Certain R machines have more narrow, direct, true imaging, robotic beams that don’t require it. Anyone have any insight to this?

-HT – Latest ,most successful Hormone Therapy ? With the least side effects or long term damage ? So many different drugs out there. Advice greatly appreciated.

- Prostate Oncologists/Radiation Oncologists – Anyone have any good recommendations in the Tampa Bay area ? Also, where can I also get 2nd, ,3rd opinions/consultations for example with MD Anderson/Mayo/MSKC via virtual Telehealth appts , without physically going to every place ?

For a new person, this whole area is mind-boggling. Not to mention, each Dr. you speak to has their own expertise, cancer group they work with, etc., they promote. Its amazing how this Network/Community and internet brought everyone together. Greatly appreciate any advice, suggestions, recommendations and feedback. Thanks to all.

[Tall_Allen]

I like Debra Freeman in Tampa for SBRT. SpaceOAR matters less than careful planning on the part of your RO. Short term hormone therapy will improve expected results.

[mijona in reply to Tall_Allen]

Thanks Tall_Allen. I was impressed with Cyberknife in how the robotic arm can move and beam attack at many different angles. I believe this is Photon therapy. Am I correct ? What about Proton therapy for even more precision ?

[Tall_Allen in reply to mijona]

Proton enthusiasts like to misinform patients that the Bragg Peak makes proton treatment more precise. It doesn't. Proton therapy has the same amount of side effects from scattered radiation to organs at risk as photon therapy:

prostatecancer.news/2016/08...

[mijona in reply to Tall_Allen]

Thanks. Interesting.

[dhccpa in reply to Tall_Allen]

Didn't know that. Yes, proton centers do a great sales job. I didn't qualify, but they had me leaning.

[mijona in reply to Tall_Allen]

Hi Allen, any thoughts about the HT Cancevi for short term 6 Mos ?

[Tall_Allen in reply to mijona]

Probably a good idea.

[mijona in reply to Tall_Allen]

Thanks. How does Camveci compare to other drugs ? Any feedback on Camveci ?

[Tall_Allen in reply to mijona]

Leuprolide is one of the most popular drugs for ADT. I never heard of this brand name.

[mijona in reply to Tall_Allen]

Hi Allen, Would you happen to know/recommend a good U/UO and MO in the Tampa Area ?I tried going to Moffitt but impossible to get appointment sooner than 6 weeks out with Dr. Powh Sang. Thanks for your help and understanding.

[Tall_Allen in reply to mijona]

Sorry, the only doctor I know in the Tampa area is Debra Freeman who does SBRT.

[mijona in reply to Tall_Allen]

Thanks anyway. I have an appointment with Debra on Tuesday.

[mijona in reply to Tall_Allen]

Hi Allen, Very impressed with Debra Freeman. Thanks alot. Also, what's your thoughts on this new Artera AI Prostate Test (artera.ai) for people like me that have localized PC. This test supposedly identifies patients who can benefit from ADT and those that wouldn't ? Seems like new AI technology and is covered by Medicare Part B. With all the side effects everyone has described, still debating whether to do the 6 mos ADT with Lupron or Orgovyx or not at all ?

[Tall_Allen in reply to mijona]

My problem with artera.ai is that they use the absence of distant metastases as the endpoint. When I was treated at age 57, I wanted to be cured, not just to be free of metastases for 10-20 years. If they had used biochemical recurrence-free survival as their endpoint, they would have found that ADT was more useful in curative therapy.

[Vynbal]

WRT your question about HT, I took the relatively newer oral drug Orgovyx - Relugolix. (Positives) starts working very quickly; clears from system very quickly at end of treatment; fewer cardiac side effects seen in trials vs Leuprolide ( Lupron or Eligard). (Negatives) Requires very strict daily compliance; Cost - depending on insurance may be up to $3K per month.

[mijona in reply to Vynbal]

Thanks Vynbal. So you take this shot monthly ? Which is the shot you take once that lasts 6 months ? I wonder if Medicare with Supplement covers these ?

[Vynbal in reply to mijona]

Orgovyx is a daily pill. Thus the need for strict compliance. Because it is an oral medication, and taken at home, it would only be covered under Medicare Part D. Whether and how much it is covered will depend on your Part D plan particulars.

Lupron and Eligard both are common injectable ADT drugs w/the active ingredient Leuprolide. It comes in 1, 3, and 6 month doses. It is covered under Medicare Part B (if you have traditional Medicare, not Advantage) so the supplement would cover it (after your deductable).

Firmagon (aka Degarelix) is also an injectable ADT drug, and works more like Orgovyx. It is only available as a 1-month dose. It too would be covered under Part B.

[mijona in reply to Vynbal]

Very interesting. Have you heard of Camveci ?

[Vynbal in reply to mijona]

I had not, but after looking it up Camveci appears to be the same active ingredient as Eligard or Lupron, just a different delivery package.

[ToolBeltZia in reply to Vynbal]

One of the reasons I'm taking Orgovyx is because it is a daily pill and it gives me at least a modicum of control in this otherwise out of control treatment. I've been on it for 6 weeks and other than one or two hot flashes I've had no side effects. I also had SBRT with a Barrigel spacer, a focal boost to the primary lesion and urethral steering to minimize the dose to the urethra by ensuring no are of the urethra received more than the 36.25 entire gland dose. I am 68 years old with a 4 + 3 = 7 and a decipher of .84 which put me in the intermediate unfavorable category and trip the trigger for the 6 months of ADT

[mijona in reply to ToolBeltZia]

Thanks. Thats pretty smart. Each person reacts differently to HT. Instead of taking a 6 mth injection which you cant change, you take daily doses and if all well continue. If not you have the ability to change. The only thing about Orgovyx I see, is that it hasnt been approved by the FDA yet. Am I correct ?

[ToolBeltZia in reply to mijona]

I believe it is absolutely approved.

[mijona in reply to ToolBeltZia]

Thanks. Yes, your right. It was not on the ACS list so i figured it wasnt approved. Strange how the ACS website not up to date. Also I am covered with my insurance but needs prior authorization. So you Orgovyx guys gave me a great recommendation. Thanks.

[Vortex12 in reply to Vynbal]

I wonder which ones of these would be the easiest to live with or would they be about the same . Any advantages to Firmagon or Eligard or cutting down to a month month dose shot?

[Derf4223]

Exercise a lot --- cardio / resistance, starting now. Reduces PCa treatment side effects and decreases long term morbidity. And its low cost

[Hidden]

Of course Moffitt is the big dog in the Tampa area. There's also Florida Cancer Centers. And I'm sure TGH is on top of the list for treatment. I'm in Pinellas county and used a Urologist in St Pete and Lykes Radiation center which is at Morton Plant hospital. I would not recommend Lykes at all. I was given a 4 moth shot of Lupron and 27 sessions of IMRT. That was 4 years ago and all is well with me. My PSA has been .25 or lower each year since treatment. My wife used to work for Aetna and she had a client that used a center in Miami area for proton beam. It cost him $25K and Aetna would not approve his claim so he had to appeal several times. Not sure if it ever got approved. Insurance may not pay fo rit.

[mijona in reply to Hidden]

Howdy Neighbor, The big dogs you mentioned are hard to get in to and the waiting time to speak with a good Dr is at least 6 weeks and even if you get in you never can speak with the Dr for follow up, etc., only their assistants. So am still looking to put my team together. Still looking for a well recommended/experienced Medical Oncologist and Urology Oncologist in the Tampa Area. For RT I am leaning towards Cyberknife and trying to get some feedback . Anyone who has any info on Cyberknife would be greatly appreciated. For HT got great advise recommendations on this network for Orgovyx, which was only approved 3 years ago from the FDA. Great to hear your doing great.

[Gvhdoc]

Cleveland clinic offers virtual consultations. I am in St Pete and at being treated at Moffitt.

[mijona in reply to Gvhdoc]

Hi Gvhdoc, (neighbor), Thanks for the info. Greatly appreciated. Especially Cleveland. My biggest problem with Moffitt was trying to get an appointment much sooner than 2 months out. Any suggestions ?

[Gvhdoc in reply to mijona]

I agree. I did not like the wait. I also made appointments at Sloan Kettering and Hopkins. The prostate cancer world is not in a rush

[Derf4223]

@mijona What is your PSA doubling time? Did you get PSMA PET/CT scan?

Your case is actually a good problem to have. Not metastatic (see PSMA PET/CT). PSA is not higher. Doctor appointments are months out unless one's case is dire, which does not sound like the case. If put on ADT, it should not be for very long. Our biggest foe is our own anxiety. Cases like yours have excellent odds of being highly treatable.

[mijona in reply to Derf4223]

Hi Derf4223, Thanks for the good word and support. Hearing the "C" word does have its anxiety that goes along with it. Slowly getting an oncology team together. Yes, PSMA PET scan is clean. Where do I get the PSA doubling time ? All I know is that started out with PSA 6.5 and 4 months later with the biopsy showed same 6.5. Starting with the SBRT treatment Cyberknife. Got a Genomic Prostate Score from MDX Health ( Genomic Health in Calif ) which showed that Metastasis probability within 10 years 23% and Prostate Cancer Death probability within 10 years 4%. Now I'm trying to figure out how to keep one step ahead and should something be brewing/recurring not only in prostate but elsewhere, what tests/scans on whole body can alert me to catch in early stage and/or any preventative steps I could do. Any suggestions ?