What should I do next?

Do you mean that I should contact the MD Anderson in Houston ? I contacted the local hospital right now that says it is working with MD Anderson. Houston is about four hours drive for me so not very bad at all if that is a better option.

Thanks all for the great information. Wish I came on here sooner...

Is Mayo or MD Anderson a center of excellence? I am in Texas. I'm on Medicare so not sure how many opinions that they will pay for. Are they generally out of pocket?

@newtothegroup yes, they are both considered centers of excellence. I went to a total of six Radiation oncologists, Four of which were at centers of excellence and two of which were trained at centers of excellence. Medicare paid for all my consultations.

Hi Colleen, I really appreciate your unrestrictive moderation of this board. You allow us a pretty wide berth and let our discussions unfold in a very orderly but lively way. As men - manly men before our ADT😆- we tend to “tell”others what to do as one friend to another. We don’t mean to sound demanding or pushy but to offer a path toward the best possible outcome. This is how guys talk - what the ladies would call “mansplaining”. We are not aiming to imply lack of understanding or ignorance on the part of the person asking the question! Rather, we are placing our hand on their shoulder and saying “Look bro, this is what you gotta do now…”
Jeffmarc is truly an incredible source of information for us - not only for his ongoing involvement in other prostate cancer discussions but also for his firsthand experience with this disease over many years.
As I was reading the comments from everyone on this topic I kept asking myself, “Why isn’t anyone’s head exploding over this like mine is? Shouldn’t someone tell newtothegroup that he has been horribly mismanaged?! That his doctor has been asleep at the wheel?”
That is certainly only my opinion on the matter and as a layman I can only speculate on how a man who has been going for checkups all this time suddenly finds himself with metastatic disease.
Did his doctor recommend biopsy ages ago and he refused? Was the patient non compliant in other areas? Was the doctor so steeped in his clinical research that he didn’t see what was going on right under his nose?? Is metastatic disease the only thing he focuses on and everything else is minor? A LOT of unanswered questions here but the real truth is always elusive!
So, though you may chide me next for what I have said here, I simply wanted to point out that sometimes SOMEBODY has to yell “Fire!” even at the expense of decorum and good manners; I think Jeff has given newtothegroup a helpful shove in the right direction and hopefully his future care will be in the hands of those more observant than his previous doctor.
Thank you again Colleen for all you do and making this forum such a valuable part of our treatment.
Phil

Thanks for that course correction, @heavyphil. cc @jeffmarc, point taken. 🙂

Those are great questions, Phil, to help @newtothegroup get answers from his team.

I can confirm that no one ever recommended a biopsy. I asked about cancer for the past three years. My dad passed away from what we believed to be complications from prostate cancer when he was 84. Therefore, it been on my mind. I didn't go for one visit as I had a stroke and was hospitalized. Outside of that, I been diligent about not missing appointments for past three years. I have never gone online to google things and I never asked for more than what the doctor recommended or suggested.

Thanks for the honest feedback here all. I been upset over last two weeks since PET scan results as I googled things but trying to funnel my focus on what I should do now. I just keep asking how I got here when I thought I was doing "good" by showing up each appointment and listening to my doctor's recommendations.

Any additional information that folks can offer on how to get the center of excellence telehealth appointments set up that would be appreciated. Also, I looked into the Somantic genetic testing and seems like insurance will pay. Do I call my doctor or just the biopsy location to request this? I got lot of things to do on Monday but that's good and will keep my brain busy. My prescription for Oxyxyz (spelling?) came in late Friday and I plan to start it later today or tomorrow morning.

Where you go for a center of excellence depends on where you live. At the Tuesday Ancan.org meeting, they can tell you Places that you can go to for the best treatment in your area.

Ask your doctor about somatic testing. He can arrange it.

newtothegroup, if you haven't yet had a PSMA/PET you should before starting orgovyx because it obscures the evidence of cancer. It may not matter, but with more opinions, you might not be interested in the clinical trial.
When you call any of these centers they will connect you with a new patient coordinator who will explain what they require. They may be able to retrieve your medical history with your permission or you may have to send it.
Call the place where you had the biopsy. Ask and ascertain that they will order the Decipher.
If you are on original Medicare, your insurance will pay for as many telehealth appointments within the state as you would like to have. I would schedule with many in order to be seen asap.

New to the group - this does sound familiar . Do you have a urologist on your case ? Your age ? do you have any other health issues or history ? I am not a Dr , so this s not medical advise . Get to a reliable and good RO ( Radiation Oncologist) as well , so he can start a file on you. ADT will help limit the PSA big time ! Also consider taking 222mg FenBen and turmeric together for the next year 1 day on one day off and see the results as well. Talk to Dr about it , he will have no problem with it if your in Canada . Where do you live and is there any problems in accessing Quicken decent medical care? Also you will need a PSMA PET scan soon, bone scan and full body contrast MRI and a ultra sound of prostate . Start a book or binder and keep all your conversations and questions in there as well as all relevant blood tests, scans and otherwise. It's amazing how doctors fumble around trying to re-search the information. If you have it all in one source in your binder, easier to talk with the doctor about it. Be organized and read up on various cancer treatments. Keep us informed of your progress. God Bless ...I will pray for you ! James on Vancouver Island .

Here's a slightly modified post I made yesterday which may be useful to you:

It's overwhelming, first the diagnosis, then the new language....

It will take homework on your part to "learn" that language.

I would start with the basics, understanding the staging system - https://www.cancer.org/cancer/types/prostate-cancer/detection-diagnosis-staging/staging.html

Knowing that, you may have a grasp of the terms and their definitions - Gleason Score, Grade Group, Stage...useful in understanding treatment options and discussions with your medical team

Next, get a baseline understanding of treatment options - https://www.pcf.org/about-prostate-cancer/prostate-cancer-treatment/choosing-treatment-option/ - this may give you a baseline understanding from which to discuss with your medical team treatment options. Just understand, its baseline stuff, the devil is in the detail, which ADT, which ARI, which radiation machine...

Having an understanding of the staging system, terms and definitions and the basic of treatment options, may help you then understand the plethora of choices. I would start with the NCCN Guidelines https://www.nccn.org/guidelines/guidelines-detail?category=patients&id=50 .

Gather and understand all the clinical data related to your diagnosis - biopsy results PSA tests, genomic tests, imaging results, any other health data cardiovascular, kidney....

Then assemble your medical team - a urologist, though as others have hinted, maybe not your current one, if that is who suggested Orgovyx then a clinical trial, well way too unconventional and frankly, not your best choice, given the state of clinical practice today and with advanced PCa, it is generally considered better to have the oncologist take the lead though I have found competency wins over specialty, I had an oncologist who I would not select as my lead!. In the end, I have learned that you are the team's quarterback,

Based on the NCCN Guidelines they should have discussed doublet or triplet therapy (https://www.urotoday.com/video-lectures/asco-gu-2024/video/3858-triplet-delays-further-therapy-versus-doublet-in-metastatic-hspc-neal-shore.html ,) - ADT+ARI or ARDT+ARI+Chemotherapy for De Novo Hight Risk Advanced PCa. You should consider consulting a radiologist and most definitely an oncologist, with expertise and experience in treatment of Advance PCa,

I try and keep in mind that there is generally no "right" decision, only the best decision based on the clinical data and each of us and our preferences, tolerances... My oncologist and I disagreed on treatment choices during my last go round, he was not wrong in what he recommended, nor was I in what I advocated for, who was right, time will tell! This is an insidious and very heterogenous cancer, mine is not his and the data that emerges from clinical trials into mainstream practice is population based and historical, may not work for your husband!

Another thought is perhaps not get mired in the "long term"... I found it helpful keeping the focus in the three-to-five-year window narrows the plethora of choices which can lead to paralysis by analysis. If the treatment decision keeps the cancer under control for that time, medical research will bring about new understandings and new treatments which may kick the can down the road.

It may be possible with treatment to live with this as a chronic disease, managed through treatment and lifestyle - diet, exercise, managing stress, proactive medical visits and screenings with doctors - cardiovascular, primary care managers....

Finally, don't hesitate to come back to this forum after the consults and ask for input from the members on your discussions with your medical team.

As other have said, you want to consider a multi-disciplinary team, urologist, oncologist and radiologist, all with experience and expertise in prostate cancer. You may want to add a cardiologist, ensure your general practitioner is linked in...

There is data that speaks to the 5-, 10- and 15-year longevity with PCA, I am at 10+ with high-risk GS 8, GG4, 18 months to BCR, rapid PSADTs and PSAVs. Yet, here I am! I have packed a lot of living into those years.

For me, the doctor's recommendation to put you on Orgovyx while they looked for a clinical trial struck me as negligent,

Kevin