I don't know if it is a blessing or a cure to find yourself under the care of strangers with MD tacked behind their names. Began my third journey into prostate cancer treatment with a PMSA scan in September and a six month Lupon injection the first of October. I had RP in 2014 and salvage radiation to the prostate bed in 2017, followed by a PSA reoccurence of .2 in March. I met with my MO referred RO this week. The bottom line, even before this appointment, is I need whole pelvis radiation plus ADT for a couple of years. The issue is both the MO and RO are at Duke. The MO says he sees three bilateral avid nodes and the RO says he sees one. (I think one was looking too hard and one not looking hard enough. The human scan reader is just as important as the scan.) What I don't see is traveling five hours a day for treatment or moving away from home for two months to get treatment there. All doctors agree that a recently manufactured radiation machine is still a radiation machine whether it is 150 miles away or 15 miles away. Getting treatment 15 miles away makes more sense mentally, fiscally and physically. The Duke RO referred me to the local RO who did my first salvage radiation. He did forget to make the referral until I contacted his office for a second time. My local RO's office says don't worry about it; they will do their own scans to which I replied, "No, I want you to develop a plan based on the PSMA scan." All these providers either don't want to step on each other's professional toes, or seem to think I am trying to hold them responsible for treatment delivered by someone else. Not the case. Next week, I see the local RO face to face and try again to continue this conversation. It would seem to be straight forward talk: don't destroy my bladder with radiation and give extra radiation to the PSMA avid hotspots. The warm haze of Lupon hot flashes and sleepless nights should make the appointment interesting, but I do need these specialists to not be so special.
Divide the waters: I don't know if it... - Advanced Prostate...
Divide the waters
Good Morning... has there been any discussion of adding an anti-androgen (Xtandi or Zytiga) to your current Lupron treatments?
MO feels it isn't needed yet, even though, there are people here who say it is advisable. I can see both sides.
There is a large randomized clinical trial which will test whether intensification with Erleada is beneficial. Maybe your RO can duplicate their protocol:
clinicaltrials.gov/ct2/show...
It sounds like the lymph node metastases are too small to biopsy. But if they are large enough, if they are of the basal subtype, that may be a good clue that adding Erleada is important.
I hope your local RO takes direction from Duke about the size of the irradiated lymph node field.
The thing is Duke doesn't seem to want to provide collegial input and that is not what I was hoping. Response to my questions is the same- outside of my specialty, or can't discuss another facility's methodology. I see their point, but that does stop the MO from seeing avid spots that the RO staff didn't, or the RO forgetting to schedule a referral. Anyway, the local RO should have all notes and images from Duke now. I feel fairly certain the local equipment is up to the treatment task, but the local center tends to do a lot of breast cancer, not prostate cancer treatment. I wanted a coordinated approach to medical care with Duke knowledge influencing local treatment delivery. My own input will have limited value in this environment where the professional source is the "authority". I want to get the local RO to use the Duke PSMA scan information thoughtfully, not as "ok, drop your pants and we will blast the heck out of your pelvis for five weeks."
What the RO or MO says matters less than the radiologist's report. The radiologist compared the PSMA uptake to background. What does his report say?
The equipment is not the issue. Any VMAT linac is good enough. The issue is the care your RO takes in contouring, setting narrow margins, adequate dose, strict bowel dose constraints, and dealing with bowel motion.
Make sure your local RO treats a wide enough field:
redjournal.org/article/S036...
You never disappoint. Should be able to go the full 30 minutes with questions Monday now. You don't know how any T_A moments you have given my doctors over the years.
Your local RO doesn't know what to do with your PSMA imaging and will just ignore it. He will do what has always been doing. Dump him and find a competent one even if you have to travel at the other side of your country. The argument that an irradiation machine of a recent make is just as any older one is for the dogs. The person that uttered this assertion is a used car salesman. Don't place your well-being into his hands.
Travel to where you can get the best treatment.
Why risk a lot for a little, or think anyone is going to change their professional habits for one troublesome patient?
The danger of doing anything, treatment or other things in this life, is in making an assumption that becomes an opinion that solidifies into an unsubstantiated fact. Magical thinking will not change behaviors or cure cancer. More resources and big name institutions may suggest a better outcome, but don't guarantee it. I guess the word "troublesome" works, but I prefer the word "determined". I can't marginalize treatment options by stereotyping providers or institutions. Track records are important; reputations are earned; but they are only indicators, not givens. Our best resources are ourselves when we approach every situation with an open mind, a willing to sort fact from opinion, the courage to consider the unlikely and the grace to acknowledge the probable. Our hearts guide us, but our minds should lead us. My best option is to ask questions, listen, analyze and make a decision, knowing full well that fate is always in the hands of faith.
Lololol
"I guess the word "troublesome" works, but I prefer the word "determined".
Determined patients are the very definition of troublesome patients.
Engineer, lawyer, doctor, architect it's all the same. Charlie Munger's architect just quit on him because he was so determined.
You ignore that type of Doctor patient dynamic at your peril.
And you don't get many do overs with most prostate cancer treatments.
Attempting to get a doctor to change their practice habits is a fools errand.
Why would you bet your one body on such a wager? To avoid the inconvenience of a little travel?
That is betting a lot for a little. That's not a sustainable gambling strategy. Lololol
There is a difference between means and inconvenience. I don't even play the lottery much less gamble. ...and seriously, who wants to live in a windowless building.
My recollection was that the person who brought up the topic didn't mention affordability.
But I'm always amazed at how people will scrimp on healthcare costs to save sums they wouldn't think twice about spending on a plumber, some home improvement, or a cruise vacation.
2 months of room and board in another city, depending is a few thousand dollars less to leave to the kids.
You are entitled to third person point of view.
"But I'm always amazed at how people will scrimp on healthcare costs to save sums they wouldn't think twice about spending on a plumber, some home improvement, or a cruise vacation."
It's actually not an opinion. I have had these discussions with multiple people, including my wife. LoL
It reminds me of one presentation of
Schizophreniform disorder in which the patient refused to believe that the right leg in his bed was his, and against all reason, he would continue his struggle to throw his right leg out of his bed.
When I had the C11 Choline scan at May in January 17, it showed four PLNs bu no bone or organ after surgery and SRT.
My medical team here in Kansas City was fine with executing Mayo's plan, 18-24 months of Lupron, six cycles of taxotere and radiation to the PLNs.
My radiologist reviewed the C11 Choline scan, coordinated with the Mayo radiologist and developed a treatment plan for 25 IMRT that included wider margins around the four PLNs along with boosts to those sites and treatment of the entire PLN system.
Perhaps I was fortunate but my medical team was on board with joint decision making and had no issues with coordinating with Mayo, heck, they even provided them with update during the course of the treatment.
I live in Kansas City so going to Mayo for five weeks would have been challenging to do the radiation treatment, same for the chemo and Lupron.
I did go back four times for C11 Choline scans and consults, entirely manageable.
If your medical team is not in sync with your decision, may be time to find one that is.
Kevin
I don't believe they are on the same page, but I do think they are reading the same book. I will not compromise the treatment I feel is right for me, but maybe this is a teachable moment to encourage collaboration. I can't force a square peg into a round hole, but I don't handle dismissive replies or indifference well. Unfortunately I don't have broad resources, so I have to find solutions within my means. I'm thinking there are a lot of us like that here.
Strange, We used to go to Kansas City to get the C11 acetate scans that were better then the choline and part of a trial. We lived very near Mayo but at the time they were very SOC and/or conservative.
I asked about those at the time when I saw the Chief of the KU Medical Center Urololgy for a 2nd opinion. He said it was broken and no idea when it would become operational again. Given my doubling and velocity times, time was something I didn't have.
His name was Dr. Thrasher, he didn't really seem interested in the clinical trial at KU of the C11 acetate nor was he interested in anything other than the standard of care for me, Lupron.
I more or less fired him and the KU Medical Center Urololgy Department as they were too conservative and not open to emerging combination therapies.
Good luck with specialist. They either have good bed side manners or the dont. I’ve had MO’ s from both camps .
It is easy to jump to conclusions about SOC. Generally speaking , any advice one doesn't want to hear is questionable. I'm a child of the 70's who questions all authority. Sometimes that is a good thing; other times, not so much. The best care possible is subjective and not necessarily found living out of a suitcase. I think the challenge in dealing with most people is looking through, or over, their personality to see their skill set.
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