Hi everyone -
After a removed lymph node was found to have cancer in it after my prostatectomy, I’ve migrated myself over to this Advanced Prostate Cancer group. I keep joining these new clubs. I must be popular.
Does anyone know of a great Medical Oncologist specializing in prostate cancer in the Seattle area? I’ve seen one at Virginia Mason, who seems fine, but I’d like to get more than 1 opinion.
Hey. Check out Heather Cheng at Seattle can er Care. Love her and her team.
Thank you!
I would go to one of four MOs.
1. Phoenix: Amber Flaherty
2. Baltimore: Sam Denmeade
3. Seattle: hemonc.uw.edu/people/michae...
4. Minnesota: Emanual Antonarakis
It depends on what you want. I want an MO who knows about hormonal therapies and truly understands hormonal cancers.
I'm in Phoenix so I see Dr. Flaherty. City of Hope.
and how does the"average" patient determine that beforehand?
QoL. Quantity of life. The possibility of a cure even if it means a horrible 1-3 years at the start. Libido.
I chose QoL and accepted some risks. I also desire to put off CRPC.
But ask yourself what is important to you. I can't tell you that.
Not an answer to my question re your " I want an MO who knows about hormonal therapies and truly understands hormonal cancers. "
I go by their nurse's look.................WOW WOW "accept"........ BOW WOW "reject".....
Sometimes life can be sooooo simple....(just like me)...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/23/2023 10:24 PM DST
You weren't clear. Could have been either statement. I picked "It depends on what you want" rather than the statement about what I wanted.
If you too want an MO who understands hormones:
Buy a book on hormones. Learn a few cascades. Then quiz the doctors on the interactions. I did that and was surprised that most MOs I talked to did not know hormonal basics that are taught in High School.
Another way is to really learn the details of how ADT drugs work. Most MOs I have encountered understand a lot about ADT. But some of them don't. ADT is a hormonal manipulation. FSH, LH, GnRH, and ultimately testosterone and its derivatives.
If you want to know why that is important to me it is because PCa is a hormonal cancer. Hormonal manipulation makes up a large part of SOC and soon to be SOC therapies. I want an MO who understands what blocking testosterone does vs. reducing testosterone. If they don't know this then they are going to be hard pressed to understand what Zytiga does and when it is called for, what the advantages and disadvantages of double and triple hormone blockage (misnomer), how to reduce ADT side effects and what to monitor and when. How CRPC develops. Why intermittent testosterone blockade ala Embark delays CRPC. What test panels to use, etc.
And lacking a good understanding of hormonal interplays they are unlikely to understand the therapies that I use and why I use them. It took me almost half a year to find an MO who will work with me, understands what I am doing, and can provide valuable input into my therapies.
Suggested reading on how hormonal therapy works and any suggested treatments? I get my first shot on Wednesday followed by 8 weeks of proton radiation.
I found these books useful:
1. Dr. Mark Sholz: The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer
2. Dr. Mark Moyad: Promoting Wellness Beyond Hormone Therapy, Second Edition: Options for Prostate Cancer Patients
3. Dr. Patrick Walsh: Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer
4. Dr. Edward Friedman: The New Testosterone Treatment: How You and Your Doctor Can Fight Breast Cancer, Prostate Cancer, and Alzheimer’ s
Thank you for the references.
Exercise and a good diet are particularly important during ADT.
Unconventional but works for many is a low dose estrogen patch for bone loss - and in my case it takes the blues away and all irritability/hostility. I use 0.1 mg/day Climara (not Climara Pro). When I feel irritable, I slap on a patch and usually feel better within hours.
I am a big exerciser now. 3-4k miles on the bike a year. Rowing machine in the winter. Have home weights and do a 3-4 minute workout every morning. Just got back from a vacation where we hiked 5-7 hours every day. I'm a little concerned on how I'll do sans T.
Keep it up! Consider increasing the weight exercises.
PCaWarrior wrote in Bio -- "I was diagnosed GG5 in 2018."
Not sure what GG5 is, but if it's GL 5+5 or or Gleason 10, then same as me.
For my treatment protocol (in 2015), I didn't see a Medical, Surgical or Radiation Oncologist but instead an Interventional Oncologist (Interventional oncology (IO) is an umbrella term for minimally invasive cancer treatments that often use medical imaging during the procedure.) So far so good having treatment beginning with a bilateral Orchiectomy + Cryoablation for the right half of prostate GL10 tumor +IRE for lesser GL6 and GL7 in left half + a 1 time in situ the GL10 cryo'd tumor injection of Opdivo + Keytruda +Yervoy and since 2016 Cypionate(Testosterone) injections.
Different strokes for different folks.
GG5 is Gleason grade 5. Either Gleason 9 or 10.
Grade I got - did forget 🙃
Had your prostate cancer metastisized outside the prostate? Lymph node effected? Never heard of Optivo as a treatment till reading your post.
Injection offered was a triple non FDA Approved 1st use experiment that I agreed to since at the time I had no mets. visible with scans back in 2015 and thought maybe it might help boost immune to prevent future mets. So far still good even WITH TESTOSTERONE injections.
Opdivo + Yervoy has gotten FDA Approval
+The combination of nivolumab (Opdivo) plus ipilimumab (Yervoy) demonstrated significant anti-tumor activity when treating patients with metastatic castration-resistant prostate cancer (mCRPC) and immunogenic signature, according to data presented at the virtual AACR Annual Meeting 2021.*
Most folks have neither the time nor the background to delve into the subject in the way that you evidently have.....did some of those MOs(how many interviewed?) toss you out ?
Hormonal basics taught in HS> wow, guess things have changed since my HS days!!
MOs that don't understand ifference between Lupron's mechnism and an androgen receptor blocker? Hard to believe?
Depends on your interests. I enrolled in every science, biology, and math class there was.
A recent story about ADT: The PCa MO that a friend of mine was seeing did not know what Orgovyx was until we informed him. And then he wanted to use two weeks of Casodex to counteract the Orgovyx flare.
Interesting the point you bring up about not having the time to learn about hormones. I looked at it differently. I made the time to study since my life was on the line.
I did not "interview" MOs. I consulted with them. Nobody tossed me out. Why would someone "toss me out" if I ask a question? It is possible to ask a question while still being respectful and polite. When someone answers my questions, I do not nitpick what they say, question their veracity, or become passive-aggressive. Those are signs of a weak individual.
well, finding one good MO would seem to be essentially interviewing them...though yes in form of consult to pick their brains.
That is incredible about the Orgovyx !!!
A retired medical oncologist, Ed Weber, co-hosts a monthly prostate cancer support group at the Swedish Medical center in Seattle (seattleprostate.com/news-ev..., so if you’re in that area he’s very knowledgeable and is great at explaining things, and he’s happy to give you an opinion about your case.
Thank you.
As a prostate cancer patient and a physician, I can’t say enough positive things about Robert “Bruce” Montgomery at Fred Hutch/UW. I recently saw him for a new patient appointment in a transfer of care from another MO also at FHCC/UW. I could go on and on.
I’ll look into him, thank you.
So Dr. , other than referrals from another PCa patient, how is the average man supposed to find/choose someone??????????? Keeping in mind that most men do not live near places such as Fred Hutch? Aned even for those lucky enuf to live near, selecting one MO from a group of MOs......or in my case, choosing one RO from a group of ROs? Just purely hit or miss?
Selecting a physician can be very challenging. In the case of Fred Hutch (and probably most top quality centers), I think you are likely to find that all the physicians are highly competent. In my case, I made a change due to stylistic differences, not competence concerns. If you don't live near a top quality center, one idea is to try to get a recommendation from one via second opinion consultation, etc. You can also keep the second opinion consultant involved via periodic visits, and get ongoing input from them for proposed treatments.
I look at healthgrades.com/
And then see how many publications they have authored. Clinical trials. Presentations.
My RO is at Mayo and is the president of ASTRO. He has good reviews and has authored good publications.
Consult urologist or medical oncologist ?
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