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MET WITH THE 3RD RADIATION ONCOLOGIST TODAY

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Posted 9/25/2016 5:32 PM (GMT -5)
I wonder what a doctors response would be to specific recommendations gleaned from the internet.
Posted 9/25/2016 6:26 PM (GMT -5)
HW is not the same as the wide open internet where you get a bunch of unsubstantiated information.
HW, as you know, has many well informed members sharing information based upon their personal experiences, informed knowledge and medical trials.

Bobby Mac
Posted 9/25/2016 6:33 PM (GMT -5)
Still, none of them are treating patients and seeing the results. Being well informed and being a doctor "on the front lines" are different matters altogether. The doctors clearly see the issues from a different viewpoint no matter how smart the HW "guys" are. Personal experiences , sure..but specific treatment reommendations..not so much.
Posted 9/25/2016 6:58 PM (GMT -5)
I believe that three years of HT is outdated and that 18 months or at least more than 12 months is now recommended. As far as driving, fatigue sets in after a few weeks so it's not advisable. Get someone to go with you. Accuracy is very important when radiating lymph nodes and high dose is necessary to be effective. So RO should specialize in lymph node treatment and do it as a major part of his practice. Not as a side line.
Bob
Posted 9/25/2016 9:08 PM (GMT -5)
Sheepguy-

Why do you post on HW?

In several years of dealing with doctors, I never had a complaint from a single doctor. You seem to be the only one with an issue that you have imagined. Perhaps an attitude adjustment will work in your favor. The shift to shared decision-making and patient empowerment occurred many years ago. It has been taught in medical schools for decades. You seem to be stuck in an earlier age. Does that work for you?
Posted 9/25/2016 9:40 PM (GMT -5)
Of course I'm the only one with the issue on this forum , everyone here has advice for everyone and for their doctors. Why on earth and how is "shared decision making" taught ? It's intuitively obvious that that is the way to approach medicine..something so obvious hardly needs to be "taught". I've never been in an "age" where that was not the case. My father had bypass surgery in 1970 , pretty early in the history of the proceedure. His surgeon was more than willing to share knowledge. He didn't discuss with be the nuances of surgery but answered all questions that I had. Teaching physiology at Cornell at the time gave me some knowledge and reading Journals in the Vet Med, library gave me reasonably current knowledge too. So yeah, for about 4 decades it has worked well. I continue to read the appropriate literature as applied to any medical condition I encoiunter. It sure is a lot easier with the internet than it was in 1970. Writing papers must be didly given how easy it is to do the "research" now. I simply am under the impression that the MD has a more practical exposure to issues than a layman ...no matter how well informed. We obviously need to agree to disagree.
Posted 9/26/2016 2:40 AM (GMT -5)
I don't disagree. That's why I and others here always recommend patients see the best doctors available. There is expertise from dealing with live patients that can never come from reading studies. But you don't seem to like that we empower patients by offering suggestions about what to even ask their doctors about. Or that we encourage patients to be equal partners in the decision making process. The doctors don't mind - especially the good ones. So why should you?

I ask you again - why do you post on HW? You are obviously not offering the support patients come here for, neither moral support nor help thinking through difficult issues, which you seem to actually object to. And you never ask for support yourself. So why do you post here?

I suspect the real reason is you need something that HW provides. It's OK to need help. It's OK to feel scared, anxious, and sad. Let go of the pride -- you may start to feel less bitter if you do.
Posted 9/26/2016 7:53 AM (GMT -5)
I can't offer support because I have nothing relevant to offer I don't ask for support or help but that doesn't mean I don't get it. There is such a broad range of issues discussed that anything I want to know is covered at one time or another. I, like a lot of people, like to look at cases similar to mine in particular.
I don't feel scared about prostate cancer...I like Jesse Ventura's response when asked what he was afraid of.."not anything I can think of right of the top of my head"..LOL. But serioiusly, sure I'm anxious but that brings up something I did get from HW..namely mindful thinking which is a bit of work but effective..apparently everyone and their sister is doing it now. Not sad either..except for the guys that are in deep doodoo after every treatment they can think of...but then there is Todd, who personifies pressing on regardless. Not bitter about anything either , prostate cancer or life..just ain't me.
Posted 9/26/2016 7:54 AM (GMT -5)
How does my doctor react when I mention HW? Heck, my RO actually asked me if I knew about HW! She was very pleased to learn that I had been here for a while prior to our meeting for the first time.
Posted 9/26/2016 8:31 AM (GMT -5)
I mention HW to my RO in conversation.I have brought her info that I copied here.Actually why not.I mentioned Tall Allen when I had a phone consul with Dr.King.One member,Paxton,will be using my RO,Dr.Hirsch for his CK/SBRT.Networking. Me think some Uros,ROs can actually get updated here on HW.
Posted 9/26/2016 8:47 AM (GMT -5)
My doctors have appreciated me learning from other sources and assisting them in the treatment process. They are very positive about HW and have visited it. They are also very positive when I send them info I have come across and are keen to discuss it. They have always encouraged second opinions and have been quick to factually let me know when I may be on a questionable track.

They recognize it is my life, my body, my health and that they are not the only source I can go to. They seem to value the relationship and treat me with respect. One of the little irritants I had from my first HDR procedure actually led my RO to make a change in his procedure based on my recommendation.

And as to Sheepguy's question about whether doctors would respond to what is gleaned from the internet....how else do you think they are learning and being informed? They are not waiting for the conferences, books and magazine articles. They are living online. All the studies, alerts, journals, etc. are all online via their smartphone and pad. So if I offer them a responsible link how is that any less valid than that link being offered by one of their colleagues, medical society, journal, etc.?
Posted 9/26/2016 10:13 AM (GMT -5)
Hey sheepguy,we are all entitled to our opinions.I have been on the HW forum for a while.In my opinion it seems you take the negative approach to issues.An attitude adjustment ,maybe.
Posted 9/26/2016 10:36 AM (GMT -5)
I don't necessarily thing doctors are "living online"..that is quite different from subscribing to legitimate journals or sources online. Opinions by laymen are not the same thing.
O3..negative approach to what issues? Not factual, data backed issues..opinions made without a strong basis yes...and part of that strong basis to be is practical experience with patients...that's it. Without opinions are not meaningful. In any case we can agree to disagree or not...I'm out.
Posted 9/28/2016 4:03 PM (GMT -5)
Good news today -

Heard back from my RO today and he emailed me he would cover Lymph nodes extended coverage to L4/5 - Thanks Tall Allen for that recent study-

Now, we never discussed which nodes he would radiate, so not sure if he would have covered them anyway? Now it is in the books, so to speak!

Also, received insurance information today that they would cover the PSMA PET/CT scan I had on July 25th.

Full bill was ~ $12,000 - insurance paid ~ $5,000 and my portion was about $300-
Posted 10/1/2016 7:06 AM (GMT -5)
I asked two of the three RO's I met with if they would change
my SRT plan based upon the below study.

Tall Allen said...
BTW - You may wish to discuss the following new study with your RO. There will be a trade-off between increasing coverage and increasing toxicity.

Patterns of Lymph Node Failure after Dose-escalated Radiotherapy: Implications for Extended Pelvic Lymph Node Coverage

I said...
Good news today -

Heard back from my new RO today and he emailed me he would cover Lymph nodes extended coverage to L4/5 - Thanks Tall Allen for that recent study.

My first RO also replied to my question:

"I think in your case this is definitely a consideration. It should not be a problem to do this if you don't have a lot of bowel there. I will let you know if it is possible."

Anyone with positive nodes, or potential positive nodes, doing RT probably should discuss the above study with your RO.

Bobby Mac
Posted 10/1/2016 9:27 AM (GMT -5)
Glad to hear your RO was willing to consider this. Epitomizes the shared decision making that TA talks about...
Posted 10/1/2016 1:43 PM (GMT -5)
What is ironic about pelvic LN treatment is that it's the one time where having more visceral fat is actually an advantage. It provides a safety cushion around organs and actually pushes bowels out of the way.

BTW - I've been reading some new evidence that dose escalation may be important in salvage treatment.
Posted 10/1/2016 3:30 PM (GMT -5)
Allen -

Please share what you have been reading about dose escalation for SRT-

Thanks,

Bobby Mac
Posted 10/1/2016 3:54 PM (GMT -5)
Can't share it yet. Just make sure you get at least 70Gy to the prostate bed.
Posted 10/11/2016 5:48 PM (GMT -5)
Radiation planning CT next Monday with SRT starting 10/24/16.

PSA 10/10/16 was <0.1 - happy Lupron is working!

Bobby Mac
Posted 10/11/2016 5:59 PM (GMT -5)
a very good sign.
Posted 10/12/2016 6:57 AM (GMT -5)
I wish you good luck with your upcoming SRT !

I have learned a lot from reading this tread (including information from Tall Allen) that is relevant for my situation.

My thinking is that I'm willing to accept the risks/side-effects with going "all in" for a potentially "cure", so I did find the study about extended lymph node coverage to L4/5 and the hint about dose escalation very interesting.

Could I ask you if you in your research managed to find any additional information about risk/reward considerations for extended radiation ?

Rgs,

Tom
Posted 10/12/2016 10:51 AM (GMT -5)

Tall Allen said...
What is ironic about pelvic LN treatment is that it's the one time where having more visceral fat is actually an advantage. It provides a safety cushion around organs and actually pushes bowels out of the way.

I resemble that. Dr. King told me and Tall Allen that it was a perfect storm of visceral fat and favorable anatomy that led to such very low SBRT doses to rectum but very high doses to the pelvic LN's on my Dose Volume Histogram that I shared with Tall Allen.

At end of this month it will have been 2 years and so far no adverse side effects and PSA remains <0.01. Granted with any form of radiation, the side effects sometimes manifest later but so far so good. I have now been off the 9 months of Zytiga and 25 months of Lupron for a year and a half.
Posted 10/12/2016 4:05 PM (GMT -5)

Tom said...
Could I ask you if you in your research managed to find any additional information about risk/reward considerations for extended radiation ?

I did not find risk/reward info.

I suspect the only thing that would impact coverage to L4/5 would be the location of the bowels - that is what one of the RO's had mentioned.

The CT on Monday will determine if that is my case.

Bobby Mac
Posted 10/12/2016 7:24 PM (GMT -5)
FWIW my SRT was done at UCSF under Mac Roach. This was standard IMRT, not hypofractionated, targeting both prostate bed and extended pelvic region. They implanted fiducials and used tattoos. They positioned me on the machine roughly using the tattoos, then did the final alignment using the fiducials. This is not one of the newest machines that does inter-fractional adjustment; it just adjusts position at the start of each fraction.
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