You were all so kind when I had a bit of a meltdown learning about my diagnosis and then finding this forum. Thank you all from the bottom of my heart.
I took everyone’s advice. Slowing things down and doing my homework.
I just wanted to mention a couple of items. I met with a very well know radiation oncologist at NYU Langone who works in Manhattan and Long Island. He began the Cyberknife program at their facility a number of years ago. He has years of experience and I felt very comfortable with him and the facility. He mentioned that the urologist will do the markers in my prostate and the SpaceOar, and he discussed my other options of AS, Surgery, and Proton therapy. He mentioned SBRT is only five sessions, but with protons the sessions will be weeks long and more sessions, and they will need to insert a balloon in my rectum to hold the prostate in place during treatment, which has potential for radiating part of the rectum. I know SBRT allows for movement in real time. I like that.
At NY Proton Center, the facility was amazing, the staff great, and the doctor was also very informative as he went through my options. He said, they now also offer only five sessions at much higher dose every other day so done within two weeks, and they do not use the balloon at their center. He said there is no need. They target the entire prostate and allow a 3% buffer, and they use the SpaceOar. They also do a simulation before treatment with a scan as they mark the prostate so they know where to precisely go. And they relook at it before each session to allow for any changes. You are also in some type of mold that keeps you from moving. He said the session is only about a half hour, but the actual treatment is only 5 minutes. So less chance for error. He said results look just as good as more sessions with less radiation per treatment, but they have not been doing it that way for very long. He said you have a better chance insurance will pay for five sessions as opposed to the much longer approach. He said there may be more chance of burn and some immediate side effects with the five sessions. The big part he stresses is that the radiation stops at the target to protect the rest of the body and minimize the radiation elsewhere. But still, I’m concerned that it doesn’t adjust to movement in real time.
Both oncologists were great and neither pushed me to move forward. NY Proton Center also said they will send out for Genomic testing so I can feel better about my decision one way or another.
If I do this, I’m uncertain on SBRT or Proton, but both treatments seem viable, and I felt comfortable with both facilities.
Would love any thoughts if anyone cares to share.
Still investigating, and one more time, thank you again for all your kindness and advice.
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LBRV711
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Why are you pursuing treatment instead of staying on AS? Based on your profile, you seem to be a great candidate for AS.
There is no evidence that protons is any better or worse than X-ray SBRT. They have avoided having a comparative trial. In spite of the Braggs peak theoretical framework, there is toxicity in the bladder and rectum and ED:
It is expensive and insurance will usually not cover it.
I think Weill Cornell uses Viewray Meridian - you may want to talk to them as well. It requires no invasive procedures - neither SpaceOAR nor fiducials.
I think you should talk to MSK too -Sean McBride for SBRT and Behfar Ehdaie for AS.
Hi Tall Allen. I have been moving forward with NYU Langone, and I am scheduled for fiducial markers and space oar on 12/22 and treatment starting 1/22. However, I’m finally relooking at things as my head clears a bit. First, I feel the need to move forward due to 2 lesions, one abutting the wall, and 5 positive core fragments out of 12, and genomic testing coming in at a decipher score of 4.3, close to cutoff into next stage
Also, I am finally seeing your response above more clearly. An MRI guided SBRT vs CT guided SBRT seems to reduce the chance of toxicity to bladder and rectum from what I’m reading. It’s not too late for me to investigate further. I love the idea of no fiducial markers or space oar needed at Weil Cornell. Do you believe they are as good as MSK? I believe now that I owe it to myself to check one more facility before moving forward. Thank you.
I’m not sure if insurance always covers Proton. I did look into it and my insurance didn't cover it because the outcomes were the same as other radiation treatments. It appears that Proton is covered more in cases where the area is difficult to access. The way I heard it is upper body especially head. Secondly, SpaceOar may be overrated as I read more on it. That may be strong but my RO and urologists didn’t think it makes much of a difference. So I didn’t have it. Maybe others can comment on SpaceOar. My IMRT sessions, which were longer at 28 sessions, each lasted about 3 minutes from the time I layed down got treatment and got up. That also includes simulation prior to start, which includes that mold, and a scan before every session. Granted it took 5 1/2 weeks. The choice between SBRT and IMRT might just be a time factor consideration. Genomics, I did OncoDX back in 2017, did help me decide on AS when taken with the other factors as BX, MRI, and JH second opinion, PSA’s, DRE’s. I had my confirmatory bx 12 months later so I felt better about my initial choice of AS. I didn't have to really decide on intervention for 6 years.
Yes they did place (4 iirc) markers during the simulation process along with the mold to keep you legs in place. Simulation took about 15 minutes or so.
Hi EJC61. So what was the deciding factor for you moving out of AS and forward with treatment? I saw your bio. Did you still have Gleason 6 but more core fragments positive? Just wondering what pushed you forward after 6 years, if you don’t mind me asking. Thank you.
No IMRT. total radiation was 70 Gy's divided by 28 sessions so something like 2.5 Gy's per session. My RO does CyberKnife/SBRT and Proton but thought IMRT was best suited for me. I did have infection concerns so that may have something to do with the decision. I can't complain honestly. I'm not sure if the data shows that one method of radiology is significantly better than another. I think you're going to an excellent facility NYU/Langone which is an NCI Comprehensive Cancer Center.
Well it’s kind of interesting. I had my bx’s in 2017 and 2018 with combined 7 cores none over 20%. Both sides. My PSA was stable for close to 7 years. My first 4 MRI’s were stable with the last 3 showing no lesions. Then my MRI in April 2022 showed a PiRad 4 in the L apex. Normally I would have had another mri type bx but I have a propensity for SIRS with the 2 previous bx. Back then Trus bx were the norm. So the next step was an PET MR PSMA Gallium scan in January 2024. Same result PiRad 4 same location abutting the wall but not penetrating. So the location concerned me. I could have tried a transperineal bx but which is supposed to be less risky but I’ve already shown to be 2 for 2 with issues. So I decided why have the biopsy and then need treatment anyway? So I was undecided on treatment until talking with my medical team. My urologist is the Chairman and Chief of Urology at Emory University and Director of the Prostate Cancer program at Winship Cancer Institute. He said that if I wanted treatment, my propensity for infection would make me a better candidate for radiation. I think if my PiRad 4 was in the center, I may have reconsidered. But I still would have needed a bx to make sure.
That is all starting to make sense to me as I am learning so much. My mri showed two lesions. One on each side abutting the wall but not penetrating. One was a PiRad 2 and the other a PiRad 3. They found five out of 12 core fragments from biopsy to have cancer. Three were 5%, one was 10%, and one was 20%. This all seemed like enough for me to to something. But as I’m learning, maybe not yet. Not sure yet. Thank you for giving me some insight.
I think 5 cores under 20% would be considered ok by a urologist. Did the MRI report specifically say abuts? Just curious. My 2022 MRI PiRad 4 did not mention abutting while the 2023 did mention it. Same lesion. Radiologists don’t seem to be wordsmiths from my experience. Curious if they do a targeting bx with a PiRad 3.
On one lesion it says it’s abutting the capsule wall. The other is not. It also says the prostate capsule is grossly intact and the seminal vesicles are unremarkable. So much information. He did use the mri as a guide for the biopsy. Not sure if they would do more.
Five core fragments out of 12 had cancer. Three were 5%, one was 10%, one was 20%. Present on both sides of prostate. All are Gleason 6. Contained in prostate. MRI showed two small lesions. Was told low risk but five core samples, multi centric, family hx, probably good idea to do now, but can do AS. Not sure what to do, but definitely slowing things down.
I would google these three docs. They have tons of presentations on AS (Layman and clinicians...if you want a little more technical) online, as well research articles.
I would be on AS for sure if it were me. If doing the treatment homework helps your piece of mind, I understand, but you can always watch it and act if it starts to move significantly. There’s a good chance it never will, and acting preemptively is unlikely to give you the advantage you seek. Great luck to you!
You’re not the first on this forum to suggest that. I am considering waiting. My thought was that it’s contained and “easily” treatable now, but if something changes later, my treatment options may change too. Seems unlikely from comments on this forum, but after watching both my parents die from metastatic cancer, it makes me want to rip this shit out of me now. Thank you for your help. And best of everything to you as well.
I am guessing that the reason why they are using the balloon with Proton is because they have the older technology.I was treated at Mayo and at that time they had the newest technology (pencil beam)
I did not have to have the balloon inserted.
They did use the spaceor gel pad and now they are doing proton with just five sessions.
Thank you. I was also interested in protons because the radiation does stop at the target, but it doesn’t adjust in real time like SBRT. So I’m thinking it’s a wash. At least the RO with Cyberknife gave me a long list of patients that had the procedure done and are all doing great. Helps a little, but this amazing support group helps a lot.
Agree with TA. Active Surveillance is preferable considering your Gleason 6. Why go through the side effects of definitive treatment if you don't have to? As long as an expert doc is following you closely with regular PSA tests, and periodic MRI/biopsies you should be fine to pursue that path. This will also give you more time to learn and plan in case you need definitive treatment. Typically, you would have a follow-up biopsy in about six months after your first to confirm DX. If that shows no progression, you would not have another biopsy for about 18 months. Make sure you have a transpireneal biopsy when that time comes. Far less risk of infection. I also recommend anesthesia. Trust me, you don't want to be awake. My understanding is that proton therapy is no more effective than standard radiation despite claims to the contrary. SBRT has excellent outcomes with far fewer treatments (5 vs. ~40) and usually smaller margins with better side effect profile compared with standard EBRT. However, I personally would go with Active Surveillance for now. Did you get a second opinion on your biopsy? Jonathan Epstein's lab at John's Hopkins is world class. It's worth it. pathology.jhu.edu/patient-c...
Thank you. I’ve been so overwhelmed with this lately that it has taken over my world. Slowly finding my way back to the rest of life. I felt 5 core fragments with cancer that are present on bith sides with a lesion on each side makes me feel like I’m putting off the inevitable. I worry about the contained cancer becoming metastatic, which obviously changes things. I know, I’m told it’s very slow growing. That is a good point that I am now considering. So maybe AS. For now I am sending to Anthony Hopkins and genomic testing.
Any chance you saw Dr. Evans? That was my radiation oncologist and one of the most caring physicians I ever had the pleasure to meet…My team included Drs. Lepor, Wysock and Wise. I felt I was in excellent hands there…
I can only share my experience and opinion. I had to have SBRT for a lesion on my left femur in 2018. It was a single high dose treatment. They marked my leg to be sure they treated the correct location. It worked, but it also damaged my peroneal nerve (which only revealed itself two years later) in that leg, leading to foot-drop and having to wear a molded full calf brace.
This happens because, as much as they tell us it is very accurate. there is both the aperature or cone of the terated area, but also the depth of penetration of radiation. I don't say this to scare you, just to let you know that there are risks in any treatment and you need to educate yourself and maybe read Tall Allen's article link.
The benefit has to be worth the risk of the worst side effect. In my case, I had no idea that this was a possibility because I was not well informed by my RO but I should have done more research beforehand. I was in too much of a rush to get the lesion treated.
I am not sorry I did because I have not had any additional lesions to date. It is a great impediment to have to walk with a brace but it is better than the alternative. I think we always need to consider the pros and cons of any treatment, but also know that we can adapt to almost anything. This is a totally new world from when we were healthy and decisions about treatment and side effects must be considered within the context of this new reality.
It sounds like you have options and Tall Aleln's suggestion for a second opinion at another cancer center is not a bad one. It will let you know that you made the best decision you could. Good luck.
Thank you for sharing your story. I agree that we can learn to adapt to most things, and we can only hope that the pros far outweigh the cons. I will take everything your wrote to heart. Thx again and best of everything to you.
Late coming to this conversation, but I just wanted to add a couple of comments regarding proton therapy -- not advocating for or against, just from my experience at Johns Hopkins/Sibley. I had no problem getting Medicare and United Healthcare (AARP plan) to cover. I had the balloon for each treatment, in lieu of SpaceOar, I was told because of the nature of my PCa spread to pelvic lymph nodes, there would be concern that SpaceOar could accidentally "protect" some of the cancer from the beam. As explained to me, the balloon wasn't so much to stabilize the prostate, but to move the rectum away from the prostate. (The balloon is filled with liquid, and you're lying on your back, so gravity pulls it down and away.) Whatever the explanation, I have had no rectal or urinary side effects -- can't really say about potency, though I have had nocturnal erections.
However, I'll throw this out there, and it may apply to both proton and photon radiation. I started having low back pain this summer (proton ended 4/7/23), which eventually became terrible sciatica all the way down both legs. MRI showed sacral insufficiency fractures, as well as a fracture in the S2 (if I recall correctly) vertebra. After consultations with both orthopedist and my MO, the general consensus is that the bones were weakened by a combination of radiation damage and osteopenia (from ADT), then my workouts and physical therapy (for the low back pain) caused the fractures. I'm now awaiting my MO's recommendation re possibly putting me on bisphosphonates and/or ending my ADT early (I'm currently 14 months in). We shall see where this goes.
You’re a Gleason 6 and you’re pursuing radiation treatments? You could live the rest of your life without that cancer harming you!
Active surveillance would be a good choice for you in my opinion, but I’m not a doctor.
I totally understand the urgent feeling that you have to do something because you have that frightening thing called a cancer growing in your body, but you have plenty of time to deal with this. Don’t rush into anything that could scar you, burn you, or cost you lots of money.
My brother-in-law has lived 20 years with a Gleason 6 tumor and is still going strong into his 90s.
I understand what you are saying. I look at the Gleason 6 on five core fragments, two lesions on MRI on opposite sides, Dr saying the left wall with DRE is a little hard, two grandfathers had prostate cancer(both lived till 96 after radiation seeds), and Dad had cancer all over his body by the time he went for help and was dead in three weeks. So, yes, I want it out, but am understanding now through this amazing group, that I may still do AS. Sending now tomJohn Hopkins and for genomic testing. I appreciate your feedback, and I am certainly finding some calmness now that I grasping the whole journey.
Hi LBR711, I am new to this group, though a fairly regular contributor to others, and have had a very similar path as yours. I chose to treat, but before I get into any of that, since it has been 4 months since the last post here, I was wondering how you are doing and if you have reached any decisions. Post an update if you can? Thanks very much!
Hey SportsFanx - I appreciate the followup. I was going to do a followup post, but now that I’m convinced about my choice, I didn’t feel comfortable getting more replies questioning my decision. Although I believe everyone’s participation is to be helpful and supportive. Based on my five positive cores and in multiple zones throughout my prostate, family history, my cousin who I recently found out had done AS with similar results as mine, but two years later it had just breached the prostate wall, along with a second opinion from MSK leaning toward treatment, I decided to move forward with five sessions of SBRT at NYU Langone with Dr. Jonathan Haas. I had my fiducial markers and hydrogel procedure done about ten days ago and this past Friday I had the simulation Ct Scan and confirming MRI done. The MRI confirmed all unremarkable in seminal vesicles, pelvic region, bones etc. so all looks good to go. My treatment begins on 1/22 - 1/31 done every other day. I am at peace with my decision, and would really love to hear your story.
Congratulations! I would first like to start with the typical disclaimer that I am not a doctor and not qualified to dispense medical advice. My comments are based on my personal history and what I believe I have gleaned from those experiences. IMHO, you have done so many things “right”! First, you realized that you actually have time to make an informed decision regarding treatment. As soon as one hears the word “cancer”, so often that causes a “things are spinning out of control” response which can lead to “snap” decisions about treatment. It’s human nature to want control back, and “doing something rather than nothing” can feel like one is regaining control, but you can’t shortcut this. “My doctor knows more than me, so I will just do what he says” is a typical shortcut that can lead to future regret. But you didn’t fall into that trap! Next, instead of taking a shortcut, you used that time advantageously by learning as much as possible about as many treatment options as possible. This might be the most important step for a variety of reasons, but one of the biggest reasons is that it leads to a critical key to overall success — it helps you to make a full commitment to your treatment decision. IMHO this can’t be understated. I made a full commitment to my treatment plan, I even looked forward to it, and I am quite convinced, based on your reply, that you have made a similar full commitment to yours! As such, you will begin your treatment from a position of strength and I truly commend you for that! It is much easier to talk about doing this in retrospect than it is to actually do it the first time! Now, with all of that said, I would be happy to share my experiences with you, and in a sense, I already have. I have chronicled my journey in a series of articles at another site — if you would like to real them, reply back here and I will post a link to the articles. I started this reply with Congratulations, and I really mean that. I think your hard work has ALREADY paid off!
Thank you so much for your kind words. Unfortunately, I did spiral down quite a bit. I went crazy with diet issues and started googling everything I was about to put in my mouth. Lost too much weight, and yes, I was feeling the need to control this! So at least I kept moving forward and made the decision after exploring my options.
Please send me the link. I would love to read your articles.
You bet, here is a link to my bio. At the end of the bio is a link to the articles. Just a quick couple of comments, I joined healthunlocked only a few days ago, and searched on proton therapy. That's how I found your post. I treated my cancer with proton, and now it is a particular interest. Had I joined this conversation earlier, I might have had a few comments, but that ship has sailed :-). The important thing right now is for you to give yourself a huge pat on the back for doing everything that you did, so that you enter your treatment phase with the best possible outlook and in a position of strength! Back to the articles, there is a 3 part series on my journey, followed by a 2 parter that explains the day to day process of proton. Then there are several other articles with various ideas that I had along the way. The articles specific to proton might be interesting from the perspective that our journeys have much in common and it is always cool to know that you are not alone. Otherwise, they might be the ones to skip. Please let me know if you have any comments, I am always interested in knowing how the articles are received Sending you much strength and all best wishes for the days ahead! prostatecancer.net/communit...
Hi again. Hope all is well. I read your bio and articles. Very good reading material, and very happy to see how well you’re doing. I have had 3 of my 5 Cyberknife treatment sessions completed so far with no side effects as of yet. It’s been a very positive experience at NYU Langone. I can’t say enough great things about my RO and the entire staff. Watching the robotic arm move around tracking the gold markers in my prostate in realtime is impressive to say the least. Thank you for sharing your story as it helps so many like me feel better about my decision to move forward with treatment at this time.
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Imaging Guidelines - Salvage IMRT Planning
Questions on Radiation Therapy
Urethral Strictures...TURP/PCa/Proton 
Use hormone therapy or not with Proton therapy
Biochemical Recurrence: Radiation 
