I had a video visit with Dr. Amir Kishan at UCLA yesterday . I decided to get a consultation with him based on the interview he did with our own Tall_Allen on the Malecare site. ( Thank You Allen and Darryl for what you are doing)
He is the 6th RO I have consulted with. This guy is the real deal.
Dr. Kishan is the head of the Prostate Radiation Oncology Dept., He specializes in Prostates. He does about 200 procedures / year. He uses the Meridian ViewRay machine which is MRI guided. He uses a home grown genetic test to help decide which men will respond best to SBRT.
I believe that it is one of the best combos of machine / operator in America at this time.
He has been doing SBRT (5 sessions) on Men with High risk PCa. I was hoping I would be a candidate.
He said that because I have cancer near my perineum he was reluctant to use SBRT and would recommend that I do 20 session at a lower dose. I live in Chicago and have a son that lives in L.A. Spending 10 days in their very busy house would be stretching it, a month might be more than either one of us could tolerate. As we talked he could sense my disappointment and said "lets think outside the box"
He suggested that he could do the 5 session SBRT to my prostate and the prostate bed up to the common illiac, and then do another 5 session SBRT focused on my perineum. The risk seems to be that the rectum may get more overflow from the 2 sessions.
Is the problem that the cancer has invaded the muscle wall at the perineum? That is very close to the rectal wall. Dr Kishan specializes in SBRT. If he recommends 20 treatments instead, I think you should take that seriously. He is very empathetic and may be trying very hard to accommodate you. You'll be getting radiation over a wide area, and that extra dose at the perineum may increase the risk of rectal injury. Rectal injury is the limiting factor of any prostate radiation. It can result in something that doesn't heal and can cause a lot of misery.
UCLA has a residence hotel called Tiverton House with lower rates for patients. Maybe you can spend just the weekends with your son. Your insurance may cover some or all of the cost.
Is the problem that the cancer has invaded the muscle wall at the perineum
I do not know but will ask.
I had an MRI done in the UCLA system several years ago and it was in downtown Santa Monica so I was expecting that the radiation might be done there as well.
I just googled Tiverton House and it says it is part of the Ronald McDonald kids system. As an adult patient with the means to afford more, would I still be able to get a room there?
As an aside I checked the Beverly Wilshire 4 Seasons, Waldorf Astoria and the Peninsula which are all nearby and run around $1G/night, they may be a little rich for my cancer laden blood.
I hear what you are saying about rectal injury, one of the reasons I was initially attracted to the View Ray system is it's potential for less chance of rectal and bladder side effects.
Our plan going forward is for me to take the UCLA genetic test ( I want the info anyway) , if I do not pass the test then 20 sessions are my only option. He has also ordered a 3D MRI to take a look at what my cancer looks like now. His comment was that after 7 months on Lupron there is a chance that my cancer has shrunk enough that targeting with SBRT is still possible.
Thanks Again for your Help - You are one of the reasons this forum is so valuable to all of us. You are also one of the reasons that I had the confidence to take the time to consult with 6 ROs until I found the one that I clicked with. The info and knowledge I have picked up here has helped me to take charge of my situation and figure out the best path forward.
Have you had HDR brachy prior to this? Would that be an option? I recently had a consult with Dr. Chang at UCLA regarding brachy and asked him about this SBRT as I had read about it and thought it might an option. His thought was that brachy had a better outcome than SBRT, maybe it just depends on what your specialty is as to what you recommend. He stated he did SBRT also as well as brachy and why would he spend 6 hours doing brachy when he could go with 30 mins SBRT.
I did not ask Dr. Kishan about Brachy. I have been told by several of the ROs that I spoke with that they did not think it was an option for me. Perhaps as you say they only promote what their particular specialty is.
Reading thru your profile our cases look similar.
In Mark Scholz book he emphasizes that Brachy + IMRT has the best LT survival for our conditions
If you're over at UCLA, have you talked to Dr Chang about Brachy? I had treatment by him for T3b with a mesorectal LN node and he did a great job (see profile). I had SpaceOar as well, and after three years absolutely no SE's at all. I considered SBRT, but chose Brachy because of great long-term results.
Tiverton can be booked if you have a procedure scheduled. It's a short walk over to the Med Center-- main thing is you don't have to drive to make a 7am procedure. I booked a second night after the procedure.
Thanks for reply looking at your profile looks like you had 15 mos of ADT. Did you stop only because oh high BP or other issues.I will ask about brachytherapy but other ROs have said I am not a candidate because of location of cancers
I would talk to Chang anyway, and get his opinion. I was a tough case with a mesorectal node and he treated it with zero toxicity. I did triple-blockade at first (Lupron, Casodex, Zytiga), but dropped the last two due to high BP after six months, and stayed on Lupron for 18 months total, which seemed to do the job anyway.
Good luck with whatever direction you go. I am just starting on this journey and still finding my way with the helpful hints from this forum. My Pca is pressing against the urethra so I am pretty concerned about long term urinary issues. Was heartened to see timotur's post regarding Chang, I had heard good things about him from others so hoping all will be a success. This is your first radiation session is that correct after 8 years? Amazing.
I stayed at the Wyndham across from the Santa Monica Pier. It’s ok, it’s not the Four Seasons! That’s when I had an SBRT zap of my T9 vertebrae from Dr. Chris King( great guy as well, unfortunately no longer with UCLA) the facility was on 16th. Street in S.M.
Is there an American Cancer Society Hope Lodge close to there? If so, you can stay there free while in treatment. But it stays full so apply as soon as you can. Best of luck.
Thanks,Art, for the kind words. Tiverton House is not restricted to families with children. I know several men getting radiation who stayed there. Kishan's Viewray linac is on the Westwood campus - a short walk from Tiverton House (they have a shuttle if one can't walk).
My RO talked about a colostomy bag if it didn't work out right. That got my attention. And that was for the 20 visits. I took 44 to be on the safe side.
Colostomy bag? When and why would that potentially be needed and how do you reduce the chances of it? Geeze, colostomy bag. Just the thought sends shivers down my spine.
• in reply to
i couldn't have the space oar due to previously trying Tulsa Pro ultrasound. the radiation doctors like the space oar for the more intense radiation because it protects the rectum. It's probably not as big an issue with View Ray. But still...
• in reply to
Bleh, colostomy bag. Wow, those are...
I'll have to look into the stats if and when I ever need RT.
I had 44 sessions, to 79.2 Gy, including 54 Gy whole pelvic, and have had no rectal side effects from it. That was nine years ago, and I know they've been working on reducing the number of fractions when treating prostate cancer. I'm sure Tall Allen is up on the latest strategies.
Two key factors, no matter how many sessions you have, a properly full bladder and empty rectum, every time, at the CT planning session and at every treatment.
It takes a bit of practice, and pooping on schedule can be difficult for people (my wife to this day marvels that I did do that). Usually you have a couple months notice, and can spend that time practicing to have those conditions on schedule, on demand.
This keeps all of the important tissues, important internal structures, in the expected locations so the radiation plan hits the intended tissues with the intended doses.
Scout, I received a very similar response from Sean McBride at MSKCC. He said “let’s do the 5 days of SBRT on Prostate Only targeting the primary tumor, with your pelvic lymph nodes shrunk down from ADT, May be addressed with 3-5 days of SBRT in the future if they enlarge or cause pain.” I was told that with PCa close to the rectum, I was NOT a candidate for Space Oar so they used a 3mm margin with their MSK Precise (SBRT). Now at 100 days with no symptoms or issues. 1st PSA and scans week 1 of May.
and another alternative to look at after we see the MRI.
As an aside I have been telling my body that it is cancer free for the last 6 months. Just testing the mind over matter magic thinking, hey, it costs nothing.
Coco has been meditating on a scenario where they look at my MRI and say "sorry we can not find any cancer to radiate." A whole lot of positive thinking going on around here by a couple of very rational beings.
Did my meditation this morning, “the mind can heal the body, wake up my beautiful mind and heal this body, wake up the white blood cells to kill the cancer cells”, is my Mantra. Then I send out blessings to loved ones present and past. Power of the mind! “Placebo effect” is proof it works.Mike
Omg, he’s my guy. I’ve done SBRT with him. He’s brilliant, kind, responsive and doing studies so he’s on the cutting edge. Amazing guy. You are in great hands. As busy as he is, he always responds to my email (on the UCLA SITE) within a day. I try not to take Advantage of that largess but it’s nice to be able to ask the question or two that pops up after your appointment. I’d follow that guy to the moon and back.
I can’t comment on your radiation choice but I can say that avoiding recital and bladder damage should be high on you priority list. A hotel room is just for a night. Radiation damage is a life long gift to be avoided.
My husband was treated by Dr Kishan. He was not a candidate for SBRT either. We consulted with several experts. Kishan’s translational research background is clearly what guides his practice approach. What he’s recommending is the best path based on his miles deep understanding of how people respond based on anatomical considerations. He’s kind an brilliant. A rare bird.
It is great that you are getting such excellent consultants and state-of-the-art options. For SBRT the MRI guided Viewray is certainly the best for precise targeting. My own RO here in Bend OR, who does not have that, was having trouble crafting an IMRT treatment plan for my two small new PSMA positive LNs, pelvic and celiac. Went through a few rounds of simulation CATs and cone CTs on the Linac in different positions (Fused to PSMA PET and MRI scans). Finally yesterday found a combo that works, allowing 32 Gy to the nodes and limiting to 25 Gy at the very proximate small bowel and stomach, which is acceptable. So next week M-F I will have the 5 treatments.However, as you said “My understanding is that it is the micro-mets and the re emergence of the cancerous stem cells that are the problem longer term”
Just so. SBRT for oligomet LNs, such as you have, is not expected to be curative due to micromets already in the lymphatics. This is why IMRT of the entire pelvic LN fields is now the standard with the adjunctive ADT.
(In my case I am going for the Lu-PSMA-J591 in Australia after 4 weeks.)
I am just suggesting pelvic LN field RT needs to be part of your consideration and consultations.
It is my understanding that Dr. Kishan has potential SBRT candidates take a swab test to determine the patients sensity to the potential toxicity of SBRT treatments.
have you asked about having the SpaceOar spaceoar.com/ done to protect rectum? my hubby had that for Proton therapy but it is used for other types radiation. Also, have you discussed proton treatments as that has less 'splatter" and may be more precise than other radiation--depends on who's talking. Good luck
I spoke with an RO that specializes in Proton, he offered to use Space oar, his margins are 10 mm, with View Ray they are 3mm and they do not need to use space oar. Proton guy could not show me any studies that showed it's superiority to IMRT.
Protons advantage is that they can stop the beam at the target and it does not proceed thru ones body and in theory should have fewer side effects.
A lot of this is "marketing/advertising" so it is hard to know which system is truly more beneficial to the patient.
When I needed imrt to all pelvic lymph nodes which of course are close to many organs in the abdomen I chose Dr Dattoli in Sarasota. He treats nothing but prostate cancer! I had very low dose (1.5 grays) per session and 50 sessions. I rented a condo which back in 2015 was pretty inexpensive. He gives a free one hour phone consultation upon viewing your imaging and other pertinent documentation. There is no way I would take a chance with SBRT in a sensitive location . It’s 10 grays per session ! When I had 1.8 grays of Imrt in 38 sessions to prostate bed back in 2014 by another RO after failed RP in 2013 I had severe rectal bleeding . I ended up getting radio frequency ablation after having a colonoscopy and seeing the mess radiation had made to my rectum. I’ve had SBRT to bone Mets with no problem. It’s definitely great due to the reduction in number of sessions. But choose wisely as you appear to have been doing. Good luck.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Looks like just one bone met. Radiation or not?
Unreliable Radiation Machine
