Dr. Kwon at the Mayo Clinic - for bone mets/high Gleason?

snowcake,

you might want to check out ISU-CycloneFan's posts. He has written in detail about his (positive) experience with Dr. Kwon.

good luck - m.

Gunner34 is practically on a first name basis with Dr. Kwon, and speaks well of him. You may want to contact Gunner34. Do a forum search for him, and click on his forum name on any of his posts. It ought to bring up his email address.

Snowcake
my husband was a G9 with mets to spine, pelvis, ribs, arm, leg -- at each location they were described as "innumerable." We saw Dr. Kwon shortly after diagnosis, and were impressed with his thoroughness and especially important to us at that difficult time, his excellent communication skills and positive attitude. Mayo was not in our insurance network so ultimately not sustainable for us, but I did love the speed and coordination they offered. You'd see Kwon, and he'd say you need scans and tests X, Y and Z, and by the time you were leaving that room, you had a printout of where and when to go get those tests over the next 24-48 hours. Results were shared almost immediately, plans made quickly. This was in stark contrast to what we'd experienced at home, where everyone felt pretty leisurely about this disease that felt anything but leisurely to us! Mayo just gave us the good hands feeling, that your case was being thoroughly and comprehensively considered.

We ultimately worked with Dr. Myers (Snuffy) in VA and a local med oncologist. Snuffy is brilliant and amazing, but I was glad to have the local doctor who saw my husband as a patient...Snuffy is a bit more researcher than clinician. That was ok when things were good -- he loved our case when it was going well. But when things got rough, I did feel some detachment on Dr. Myers' part. I'd still recommend him if you're open to the out of town expert approach, but I'd make absolutely certain you have a local med oncologist you trust.

Good luck! And echoing everyone else, don't lose hope -- treatment options for PCa get better and better every few months it seems.

Another medical oncologist that has a great reputation with advanced PCa is Dr. Oliver Sartor at the Tulane University Medical Center in New Orleans. That is probably where I will go if my PCa causes a problem. The weather and food are better in NOLA!!!!

Snowcake, I'm sorry for your experience. It seems to me that patients should be given both expected outcomes but also a range. My experience with the Canadian system is that unless you have contacts or family members in the system. you can't expect more than the standard of care. Men are labelled according to risk or met status and care is standard accordingly. Not sure that anyone is willing to "try hard" or think outside of the box.

Did anyone mention BAT? Has your dad been given all of the possible medications? I wonder if Dr. Kwon suggested a certain therapy to buy time if PMH would be willing to offer it. Our experience in that regard is very adverse.

You are not going to do better than Princess Margaret Hospital and Sunnybrook - they are on the cutting edge, do lots of clinical trials, and some of the best clinicians anywhere in the world. You are lucky to have access to them.

thanks, both!

TA, I thought the same as that too, but this one radiation onc's approach made me feel a little uneasy. when i asked about avoiding antioxidants during radiation he said "we usually do tell people to avoid those when doing radiation but it this case [he shrugged] it doesn't matter". it made me feel like he was saying "he's a goner anyway so it doesn't matter" and like the radiation was just being done as a going through the motions exercise.

it's just the vibe i got. after watching dr.kwon and his more positive "we can still beat this!" approach it felt a little disappointing to me.

i know it's a great hospital and i'm hoping the med onc will have some more encouraging news that's a bit more outside the box and a bit less "standard routine"

the radiation onc said my dad isn't suitable for SBRT because of the spinal decompression surgery so unfortunately, he won't be getting that and is getting standard IMRT instead. my dad's taking curcumin and drinks pomegranate juice and takes a couple other things as well. when i read up on them the logic also wasn't clear to me...i guess antioxidants are good when you don't have cancer but when you do have it and are being treated for it...it seems like they're the opposite of what is needed?

anyway i've asked the rad onc for a more detailed outline of why my dad's not oligometastatic despite only having one bone met and also why the SBRT is ruled out. and also if this other radiation is being done to kill the cancer cells.

i wish i'd known about the sunnybrook prostate cancer bone mets clinic as that sounds like the perfect thing in this scenario - plus it's multidisciplinary and he could've seen everyone in one day instead of having to do back to see each individual specialist like he has to now. plus sunnybrook did that SBRT trial. maybe they just have a different way of thinking around this than PMH? i know PMH is an amazing cancer centre. i just wonder if in the case of PC, if sunnybrook is better? i haven't been able to find much info either way

does anyone know how much a consultation with Dr. Kwon would cost? it's ok if you don't feel comfortable giving details but just wonder what ball park it is so we can figure out how much we need. thank you again!

thanks annie8. how did you arrange it on your own? is there a different way to get in contact with dr.kwon? i would love to know!

we went to see the medical onc at PMH today and he did not offer a PET scan, although i did ask. he said at this stage he doesn't think it would be helpful, as he wants to do a full MRI first. thanks for the info about the pet scan from london. it looks promising!

unfortunately there is a 1-2 week wait for the MRI. we have been waiting so much throughout this whole thing and i wish we just had some assurance soon

wow, that's so awful that the consult with mayo resulted in harm to your husband at PMH i was hoping they'd be open to working *with* kwon collaboratively. thanks for the warning though, we're gonna have to find a way to do this then without them finding out and potentially putting my dad on the back burner. we haven't dealt with any uros there, only oncs but i wonder if they'll have the same issues with outside opinions/involvement.

i actually got our uro to but in a referral to the sunnybrook prostate cancer bone mets clinic for a second opinion (something we never did the first time around) and now i'm scared PMH are gonna have issues with that too :\ navigating egos is one thing we don't need in this process!

thanks for the tip to contact dr.kwon's office directly. i will do that!

i wonder if PMH would be open to other scans in specific circumstances. the med onc was a bit evasive and didn't explain in detail why, but it's something i'm gonna ask about again next time we go.