If you could go back to your 1st meeting with your RO what do you wish you had asked?
I have been on Eligard for 50 days, well tolerated so far. planning to start Zytiga on Nov. 2nd. Not sure when radiation treatments will actually start.
The plan they have proposed for me is 28 sessions with a total of 60 Gray using VMAT , IMRT. they use tattoos vs gold pellets.
Target is Prostate and 2 Lymph Nodes that showed + for cancer.
Get a second opinion from someone that does Sbrt radiation exclusively.
From a different institution.
Simple question: "If I get you a PSMA scan will you consider it during planning or not?"
If he starts: " Hmmm, yes, but it is not mandatory" or "Normally we don't, but if that makes you feel better...", fire him on the spot.
Have you read Tall-Allen's list of questions on his blog? prostatecancer.news/2017/12...
Thanks very helpful
Thanks Gemlin_ and TA for the list - Golden!
Is cyberknife an option in these circumstances and would it be more effective? Can I just have six sessions of 6Gy instead?
(I just had six sessions at 6Gy)
STAMPEDE just released data that includes abiraterone+SBRT for LN+ (M0) patients and it looks excellent!
Thanks. I take it you're referring to my treatment? You've lost me in the medical language there somewhat.
Yes. The UK STAMPEDE trial allowed CyberKnife (SBRT) for treatment of the prostate in men who had positive lymph nodes and who had otherwise had no metastases (M0). They randomized them to receive abiraterone+ADT or just ADT. The men getting abiraterone lived significantly longer,
I am on enzalutamide and had radiotherapy on my prostate and seminal vesicles. To my knowledge, they have not attacked my lymph nodes yet but I understand the enzalutamide goes everywhere in the body.
IMO your plan is a big mistake. You are making the mistake of thinking that the LN metastases you can see is all there is. It isn't. Lymph is a fluid. It is slow-moving, but it does move, and it carries cancer cells throughout the pelvic drainage area. So if you want to be cured, the entire pelvic drainage area has to be treated. You have a history of under-treatment, and that strategy has never worked for you. You have this one last shot at a cure, so I strongly urge you to reconsider.
The radiation you have planned is inadequate. Standard of care is to treat the whole pelvis with 45 Gy-55 Gy with a boost to the visible lymph nodes. and a boost to the prostate, so that the prostate gets over 80 Gy. The prostate boost can be given with brachytherapy. Experimentally, giving the prostate a boost with SBRT also seems to work well.
That all makes sense to me.
Thanks TA and thanks for the list of questions on your website.I have been told by both the ROs I have consulted ( one at Univ. of Chicago) that Brachy T is not appropriate because of the location (left and right side of prostate and external nodule) of the Tumors.
I did not say brachy monotherapy.I said brachy BOOST therapy. That means external beam radiation is used for the whole pelvic area and some extra is given to the prostate alone. Do you understand that this is different?
I do now , thanks
I miss spoke about their proposed treatment, it is 70 gray to the prostate and 45 gray to the lymph nodes, right and left of prostate and all LNs in between. When I asked about expanding the target he said it is a trade off between toxicity and resultant side effect vs. radiating lymphs that may or may not be cancerous. He seems conservative.only in hind site will I know the answer
NRG Oncology/RTOG recently expanded the treatment area to go as high as the aortic bifurcation. By consensus, this is now the standard of care. The ROs I talk to are not seeing any increase in toxicity as a result of this expansion, if the RO is careful. Suggest you talk to a better RO.
redjournal.org/article/S036...
As you know the radiology side effect take years to manifest
No - that's a myth. The truth is that radiation side effects occur early and get better over time. It would be very rare for a man to get late term side effects for the first time after more than a year. Those that get late-term side effects almost always have acute side effects as well. You can see that in patients who were followed for 6 years, toxicity was seldom higher than in the first year:
prostatecancer.news/2020/02...
After about 6 years of follow-up, patients treated with whole pelvic radiation did not evaluate their urinary, bowel or sexual adverse effects as significantly different from patients who only had radiation to just the prostate:
prostatecancer.news/2021/08...
Good morning T AThanks for supplying this
I read this but don't understand what I am reading or how this justifies expanding the radiation target. I discussed this with my RO this morning and he said he is open to expanding target if there are clinical trials that support this. To me( uninformed and clueless) it looks like this was just data mining. There may be some validity to it but I think I will need more supporting evidence to get him to change.
Do you know of any top rated Hospitals or practices where this is now the SOC?
I truly appreciate your knowledge base and willingness to share it with us.
Scout
Results
Eighteen radiation oncologists’ contours (54 CTVs) were included. Two urologists’ volumes were examined in a separate analysis. The mean CTV for the postoperative case was 302 cm3, intact node positive case was 409 cm3, and intact node negative case was 342 cm3. Compared with the original RTOG consensus, the mean Sorensen-Dice similarity coefficient for the postoperative case was 0.63 (standard deviation [SD] 0.13), the intact node positive case was 0.68 (SD 0.13), and the intact node negative case was 0.66 (SD 0.18). The mean Hausdorff distance (in cm) for the postoperative case was 0.24 (SD 0.13), the intact node positive case was 0.23 (SD 0.09), and intact node negative case was 0.33 (SD 0.24). Four regions of CTV controversy were identified, and consensus for each of these areas was reached.
Conclusions
Discordance with the 2009 RTOG consensus atlas was seen in a group of experienced NRG Oncology and international genitourinary radiation oncologists. To address areas of variability and account for new data, an updated NRG Oncology consensus contour atlas was developed.
It is now NCCN standard of care. It is based on all the trials of the new PET indicators. That was an expert consensus statement, which is how such things become SOC. I don’t know of any top RO who isn’t using it.
Went to NCCN site but could not find SOC recommended radiation target info.Could you link me to it.
TIA
BTW great info there…
Apologies. NCCN doesn't go into that kind of detail. They follow NRG Oncology guidelines. More to the point, why are you being treated by an RO who doesn't know this?
why are you being treated by an RO who doesn't know this?
Please do not change the topic.
This RO has said he is open to new info., and will consider expanding the target area, if it has been clinically tested and found to be valid. Can't ask for much more than that.
You tell me this is the new standard of care, please direct me to a study that shows this.
I went to NRG and that is a closed site for me at the patient level
.
I can't go back to RO and say " A guy named Tall_Allen on a web site I found on the internet says this is the new SOC so I want you do expand the rad. target."
My credibility will be sorely challenged.
I sincerely want to get the best care and the best result. Knowledge is power. I want it on my side.
I gave you the NRG publication. Here it is again:
redjournal.org/article/S036...
redjournal.org/article/S036...
This dictates the standard of care.
They changed the standard of care because of the failures of the previous RTOG atlas:
prostatecancer.news/2017/02...
If your RO doesn't know about this, he likely does not know about much else. It's not your job to teach him. There are enough competent ROs out there.
Go in with an open mind. Hopefully you have been diligent on their portal with all info, scans, Dr contacts,etc.. Let them know you have a lot to live for, and “if you were their Brother what makes makes the most sense, with everything they know, to extend life. Let them know if you are willing to step outside the box, and whether or not you are willing to travel internationally for proven medical practces. Best,
Mike
My advice is for after you decide how to proceed. Don't 2nd quess yourself. That won't get you anywhere IMO. Best of luck on great a response whatever you choose to do.
Hey Scout ! You can always ask many Questions? But a good doc should explain it all to you .. To me it sounds like you’ve charted the path forward. Now get er done! I also had two lymph nodes lit on scans . But my pc specialist decided to radiate the pelvis and prostate floor full of tumors but he skipped the nodes .. I did almost exactly what you are to do . Except that I’m on tak-700 instead of zytiga . But I Think that they act similar on stopping the adrenal production of T . The plan is first to strip your t away. Then the imrt will blast the bad cells . I did “ fast & live” video on YouTube . Dr Uzick put me on two treatment days per week a 500 calorie veggie juice only fast . . I went from 233 muscular down to 165 and gaunt .The theory is that the already weakened pc cells are more readily knocked off by the RT .. I went into a five year remission so far . I gained back up to 195 now . I also did a full 60 gram round of high thc canabis oil RSO during and another round after RT . I continued a small twice daily dose of this to date . It’s good that your handling the adt so far . Stay as active as you can . Pc hates oxygen .. so feed it daily ..Every day after IMRT I d imagine my pc cup diminishing .. I would envision it emptying and leaving the cup . At some point the cup was empty . You must believe it yourself that you can beat this . Then do so! Prayers and faith got me through and the love of my wife . We can endure a lot if we have love . It Looks like you’ve got that . 🙏. I’m only a patient , not a doctor . Neither is anyone else on this cite . Follow the pros , if they have your trust . Good luck tomorrow !
I wish I’d been to this site first. You have so you have all the tools to understand and ask the right questions.
As usual, TA has nailed the priorities. Follow them! If the RO did not advise treating the entire pelvis PLN fields up to the aortic bifrucation with boost to the identified nodes and high dose SBRT to the prostate gland and bed, or the addition of high dose-rate brachytherapy to the prostate, then I would go somewhere else for the most up to date treatment. How old is their LINAC equipment and targeting systems? What are the dosing constraints near to “organs at risk”?There is still some uncertainty over the bone lesion on the femur and possibly other sites that have not been identified on previous scans outside of the pelvis. This could change the whole plan. So I would try to get a PSMA PET scan such as with Pylarify or Ga68 ASAP. You will likely need to travel for that at this time. Are you a veteran perhaps? If so you can still get it for free at the Los Angeles VA.
Ga68-PSMA is on of the isotopes for the scan, Pylarify is another, FDA approved. ASAP means promptly, as per usual.
As a physician who trained in the days when patients were actually examined and who has continued to practice physical examination in my personal practice throughout my career, one of the most anger inducing experiences of my prostate cancer treatment has been the constant barrage of fake notes placed in my chart describing level 4 and 5 exams that never happened. With that run-on sentence completed I would say my experience with the two radiation oncologists I have dealt with has been nothing but positive in the sense of them actually doing an examination and presenting a rational and justified plan for care. In fact despite being seen by several urologists the only thing they ever placed up my butt was an ultrasound probe or tru-cut biopsy needle in contrast to the RO.s who actually did a DRE. In particular my initial radiation oncologist (who just by luck of the draw was/is a rather famous individual who has subsequently retired) was one of the most thorough physicians I have ever met. My second one while not of his caliber still completed more of an exam than any MO or Urologist I have met during this process. What really angers me in addition to the compromise in care that "dry labing" the exam does, is the tremendous waste/theft of healthcare dollars by upcoding via fabricated notes. I have tried to point this out to my insurance company to no avail and have met over the course of time many patients who have made a similar observation of the disconnect between their medical record and what really happened in the exam room. Bottom line IMO is if the radiation oncologist only wants to look at images I would walk out and find a doctor.
I’m far from an expert but I’ve received a lot of radiation after failed RP , both low dose for prostate bed and lymph nodes and high dose (SBRT) for bone mets in later years. My experience is that if you have two problematic lymph nodes, you have a lot more which are not yet visible so all pelvic lymph nodes should be radiated. I’d ask about that . I’ve also learned that rectal bleeding is not abnormal and years later expect incontinence . Good luck.
Bob
Thanks Bobyour perspective helps
I’ve also learned that rectal bleeding is not abnormal and years later expect incontinence.
Dirty little secret that they don't tell you upfront unless you probe for it.
RO yesterday was surprisingly candid about my risks for probable side effects .
Good to hear. For my lymph nodes I went down to Sarasota in 2015 to Dr Dattoli , in my view one of the best ROs . Very conservative and applied very low dose (1.5 grays per session for 50 sessions = 75 total grays ) to all my pelvic lymph nodes. Nowadays I hear that SBRT is used which I find amazing but what do I know? I didn’t mention that I have total ED and my penis actually disappears like a turtle, but I’m sure that’s due to so much RT plus ADT and RP. Sex is a long distant fond memory!
The only thing good about Pca compared to most other types of cancer is I’m still alive after 8 1/2 years with Gleason 9!
Bob
Very conservative and applied very low dose (1.5 grays per session for 50 sessions = 75 total grays ) to all my pelvic lymph nodes.
Interesting... thanks
The be helpful big thing I did not ask until half way through was what kind of diet would be helpful to counter the diarrhea. I had a standup conversation with a dietician that helped tremendously. She gave me a list of soluble fibers that would help, avocados was one.
Most cancer centers have a resident nutritionist/dietician on staff. Still eludes me why the MOs and ROs do not make it mandatory or at least highly recommend an appt with that person.
It surprised me what she advised...almost opposite of a Mediterranean diet, as in meat and potatoes, fewer greens and very small amounts of crucifers, i.e. cauliflower and broccoli.
Thanks for your reply Carp
It surprised me what she advised...almost opposite of a Mediterranean diet, as in meat and potatoes, fewer greens and very small amounts of crucifers, i.e. cauliflower and broccoli.
Two months into this quest for knowledge I have found that very few "experts" agree on any thing. It can be bewildering...
I wouldn't go in with a laundry list of questions-- most docs will not give you the time to ask more than a few questions. Think of 2-3 questions that you really want to know, and follow up from there. I would ask 1) do you see any unique challenges in treating my pathology, 2) what is your treatment plan for my situation, and 3) what are my risks? Focus on his plan for you.
Thanks TimoturThat is pretty much how it went.
The challenge will be my enlarged prostate…150grams est.
We talked about doing TRUP prior to radiation as he said if we had to stop in the middle of the therapy it would complicate the process and be painfull as well.
Scout, good deal. IMO, I would look into HDR-Brachy + 25xIMRT + ADT-18mos, as I did for Stg 3b + SV + LN. Since you're seeing Dr Scholtz, you might mention that since you are considered oligometastatic with < 5 mets, there's still a chance for a cure as opinionated by some. I would seek out Dr Chang, UCLA, for a consult on Brachy-- he did an excellent treatment for me (see profile).
I'm sorry if I'm repeating this for you, but I forgot if I posted it for you before.
Radiation - I've posted this before so to those people who have already seen this please forgive me.
I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 10/27/2021 9:47 PM DST
My MO was against Spaceoar, never confirmed if he was against it in general or just for me. He did a low grade CT before each of my 44 treatments to confirm alignment, bladder and bowel volume.
Thanks J-o-h-nHelpful to hear your perspective.
My husband had his 36 days of radiation 4 years after RP. He became incontinent at least 10 years after having radiation followed by brachytherapy. His ED after surgery happened immediately like TA said. The incontinence came years later!
Biopsy results review tomorrow - suggestions on questions to ask?
Having Eligard injections. Should I ask for radiation to prevent gynecomastia?
Chemo what should I expect? 
What should I expect at the end?
What should I expect from treatment 
