Oligo

[TheTopBanana]

Where in the world would you go for treatment and/or second opinion for oligometastatic prostate cancer? If you could go anywhere.

[6357axbz]

MD ANDERSON in Houston, Texas is the #1 rated (US NEWS &WORLD REPORT) cancer speciality hospital in U.S.

[j-o-h-n]

Memorial Sloan Kettering cancer center at 68th Street and York Avenue in New York City.

MSK is the world's oldest and largest private institution devoted to the prevention, treatment, and cure of cancer. Founded in 1884, MSK has long been a leader in early detection, precise diagnosis, and individually tailored treatments for cancer. We continue to as a National Cancer Institute–designated Comprehensive Cancer Center, with state-of-the-art science flourishing side by side with clinical studies and treatment.

MSK is committed to patient care, education, and . The close collaboration between our scientists and physicians is one of our unique strengths, enabling us to provide patients with the best care as we work to discover more-effective strategies to prevent, control, and ultimately cure cancer. Our education programs train future scientists and physicians, and the knowledge and experience they gain at MSK has an impact on biomedical research and cancer treatment around the world.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/11/2023 1:32 PM DST

[cujoe]

Well, How about a third suggestion.

Regardless of PCa status, if I was just starting out on treatment or considering a major escalation, I'd at least seek out an opinion from Dr. Olivor Sartor, now recently relocated to Mayo Clinic in MN. He is a recognized world-class MO, IMO.

However, as a way to think about such a significant decision, I offer the following thoughtful excerpt from a now-abandoned patient support site for my #1 cancer, CLL. Some of the content is specific to that cancer, but the advice being given by the co-founder of the site is valid when considering decisions about MOs and treatment center. You can substitute PCa for CLL throughout with no loss of significance for the content.

* * *

Excerpted from:

Does Your Doctor’s Expertise Matter?, CLL Topics, September 3rd, 2011, written by Chaya Venkat

. . .

Everyone has agendas. A while back I wrote about a friend of mine who went to five different expert centers for full workup of his newly minted CLL. Each center did a great job of doing all the blood work and reading the prognostic tea leaves. Each center came up with an entirely different therapy suggestion for what ailed him. In each case, the recommendation was a clinical trial that the center was conducting at that time and were actively recruiting patients for it. Human nature is what it is.

There is a built in conflict of interest between the two roles that CLL experts play. On the one hand, they are dedicated researchers anxious to hasten the recruitment process for their pet projects. Expert reputations are built on successful clinical trials and rapid recruitment is one of the advantages of working at a large institution that has a steady inflow of fresh patients. On the other hand, they are physicians sworn to do what is right for the single, individual patient in front of them. Finessing this conflict of interest is not always easy. When your expert looks at you, which hat is he wearing? The researcher hat or the physician’s hat? Can you tell the difference?

Some centers are more aggressive than others in their recruitment practices. Recently, one of our leading expert centers told a patient they were recruiting for Rituxan + CAL-101 trial that his participation in the trial would not change his chemo naive status. I beg to disagree. They also told him that participation in this trial would not in anyway impact his chances with something like FCR down the road. I hope so, but no one has done this research and we have no way of knowing whether or not FCR would work equally well down the road, after a possible CAL-101 relapse. This is a case of trial recruitment getting ahead of clear and honest discussion of the risks / rewards. A recent review of a clinical trial using CFAR regimen in relapsed / refractory patients underlines what can happen, when clinical research gets ahead of patient care – in my opinion.

Everyone has agendas, and everyone has egos. The bigger the expert, chances are the bigger the ego. Do you have what it takes to listen to the expert and nevertheless make decisions that are right for you, even if they do not match what he is suggesting? Some experts do not take kindly to patients who do not automatically say “how high?” when they say “Jump”. Local oncologist from round the corner from your home or office may be easier to deal with, especially if you are the type that does not do well in confrontational situations.

Bottom line, as with all things having to do with CLL, no one is more in charge than you, the patient. No one has more skin in the game. By all means, expertise is valuable and important. But only you live within your body. Only you know what is right for you. The only way I see that you can do a better job of making good therapy decisions for yourself is to come up the learning curve yourself. Be well informed. Be well prepared. Use your resources wisely, use tact and charm in your dealings with the medical establishment. Listen carefully to what your doctors have to say, ask questions and make sure you understand the answers. Be good to your friendly and ever so charming and humble patient advocate ( grin), you never know when you may need information in a hurry. Don’t burn bridges that you may need later. But above all, be very sure you remember, you get to have the final say.

* * *

Written 12 years ago by the MD wife of a man with CLL. (Her MD husband was in continuous treatment for CLL and later died from a failed stem-cell transplant.) As pertinent to us patients today as it was back then.

As another CLL patient support site says in it's trademarked logo:

Smart Patients Get Smart Care™

Good luck in your search - and Stay Safe & Well throughout.

Ciao - K9 terror

[Justfor_ in reply to cujoe]

Excellent compilation of the truest truths any patient should be acquainted with. Chapeaux to the Lady MD!!!

[cujoe in reply to Justfor_]

Justfor_ It was really heart-breaking when her husband died. She had realtime profiled his treatment history as " Harvey's Journey". Sadly, had the BTK inhibitors used extensively for CLL today been around back then, he might still be alive.

Here is a link to her farewell post. It tears me up to read it now, just as it did 10 years ago.

updates.clltopics.net/4874-...

Such things serve to remind us about that "every day is a gift" thing . . . Live it or lose it.

Stay S&W. Thanx for the appreciation. Ciao - K9

[Concerned-wife]

my husband traveled to Weil Cornell in NY in order to receive MRI directed radiation. Now he is consulting with Duke. Both were excellent.

It has gotten harder to obtain virtual visits so you might consider distance. You could look at who is presenting info on UroToday .

[MateoBeach]

I would go to a center with MRI guided SBRT to all oligomets (ViewRay MRIdian). Then follow that in a month with monoclonal antibody based Lu177-PSMA-J591 at GenesisCare AU in Perth with Dr. Nat Lenzo. (This is what I did one year ago as documented in my past posts.) Alternatively, consult with Weill-Cornel about their trial with Ac225-J591 for mCRPC after the SBRT.

[MateoBeach in reply to MateoBeach]

See. medpagetoday.com/meetingcov...

[DarkEnergy in reply to MateoBeach]

Why not go with PSMA guided radiation therapy?

[MateoBeach in reply to DarkEnergy]

That is what I did. Oligomets identified and mapped from PSMA PET scan. But it was a CAT scan guided EBRT treatment delivery LINAC. He asked about “the best” and now that would be MRI guided LINAC such as ViewRay for the most precise targeting. I favor the Lu-J591 over Pluvicto for (hopefully) the clean up of micromets.

[marnieg46]

Hi Hanna,

You haven't updated your dad's profile and I can't seem to find any mention in your posts to date about where his metastases are and actually how many he has...perhaps I've missed this information along the way...if not... the details might be helpful though to those who are providing you with suggestions.

[kainasar]

I think Dana-Farber has an online 2nd opinion program. Also Mayo Clinic - Eugene Kwon lectures on oligomets (videos)