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Posted 7/20/2016 8:24 PM (GMT 0)
He did talk about hypofractionation as one possible option and from what I recall he thought either hypofractionation or IMRT as two main options.

Good point about travel and that only my husband can answer as I would not be traveling with him every time except for the planning and calypso placement.

I actually want to talk to couple of RO just to get an opinion on final treatment regiment and I am pretty sure my husband is OK with doing that. I will reach out to the two docs you gave me names before.
Posted 7/20/2016 8:51 PM (GMT 0)
Where HDR Brachy is used as a boost, the curative potential is x3. So, in my case where I had 15 gy HDRBRT, my EBRT Dosage requirement is only 46 Gy. Add that to the "curative" value, and overall, I'm getting around 91 Gy potential.

Not bad for 23 EBRT sessions and 1 HDRBRT session.
Posted 7/20/2016 10:19 PM (GMT 0)
I don't want to weigh in over my pay grade here, but I think Alan makes a very good point. That is a lot of travel for IMRT, which can be done lots of places.
Posted 7/21/2016 12:26 PM (GMT 0)
Thank you guys, all valid points. My husband actually had the same thought about the travel time just did not voice it until I mentioned it to him.

I could use some help with following:
1. Can someone (Allen? :) ) provide me some links to different studies about RT treatment with and without HDR boost?
2. If we did decide to do HDR boost, would we want to have that done by Horwitz and than possibly have EBRT done in New Jersey?
3. How do I go about finding a RO in New Jersey?

My husband is getting antsy about having a plan in place and starting treatment. He could just start on Lupron and that is starting treatment but want to have a plan of what and where we are doing.

Thank you.
Posted 7/21/2016 12:49 PM (GMT 0)
I found "The Prostate Cancer Results Study Group" - I like the visual representation.
Posted 7/21/2016 3:11 PM (GMT 0)
FYI, there is a member here (CaliJR) that had HDR brachy at UCLA and had his IMRT at a local facility. He's also a G9. Hopefully, he will weigh in on this thread.
Posted 7/21/2016 4:42 PM (GMT 0)
Thats me... Yes I had HDR BT at UCLA for 2 days with Dr Kamrava. I stayed one night in hospital at UCLA. Was done and on my way home by 1PM on the second day. My medical oncologist (Dr Lam at Prostate Oncology Specialist), coordinated that with my local IMRT near my home. Made life easier as I could have IMRT fractions in the morning and then go to work. That was for 28 sessions or 5 weeks. My total was 71.4 gy with both. I couldn't see driving to UCLA every day as with LA traffic that could have been 2 hours one way. Good luck Margaid. Take care. -JR
Posted 7/21/2016 5:00 PM (GMT 0)
Thank you CaliJR for.
RO did not seem receptive to working with anyone, it seemed that he just wanted us to come there. Maybe because we were talking about EBRT/HT treatment and brachy boost ONLY if WE wanted to go that route?

I talked to my husband few minutes ago and he is very much opposed at the moment about going to two different RO's. If we have to find yet another doc that is willing to work with other doc it prolongs the time to treatment. But if we did decide on brachy maybe Horwitz would be OK doing that and work with someone local for EBRT.

I just called our RO and left a msg to see if we could start on HT right away and if that is something we could do in NJ (based on his specifications).

Post Edited (Margaid) : 7/21/2016 1:28:24 PM (GMT-6)

Posted 7/21/2016 5:19 PM (GMT 0)
Yes I can see why your husband wouldn't want another Dr in the mix.. for me, seems like my Med Onc, RO at UCLA and my local RO all knew each other. In the end, the local RO coordinated with UCLA so that my IMRT was on schedule, within 2 weeks, after HDR BT.

I think you guys are going down the right path with your treatment plan, especially as a G9.

Good luck on your journey. -JR
Posted 7/21/2016 9:59 PM (GMT 0)
Here's an article with plenty of citations about HDRBT+EBRT vs EBRT alone (the first half).

HDRBT monotherapy in treatment of high-risk prostate cancer

And here's one about LDRBT+EBRT vs EBRT alone:

HDRBT monotherapy in treatment of high-risk prostate cancer

While the numbers show an advantage to the combo, I can see Horwitz's point about using an EBRT monotherapy because of the small amount of GS9. There are certainly fewer SEs associated with a monotherapy. Every case should be considered on its own merits, and he certainly has the experience to do so.

HDRBT is highly specialized and I think you will have a hard time finding an expert practitioner locally. The RO who does the BT is often a different one from the one who does the EBRT, anyway. So they have to coordinate their plan with another doctor whether it is all done in one institution, or whether it's done in separate institutions. BT and EBRT are two very different specialties.

If he is convinced that radiation of any sort is the way to go, I think every RO would want to start him on HT. There is no risk to his cancer prognosis in starting it now whatever kind of RT he decides upon later. They usually start HT 2 months or more before RT.

- Allen
Posted 7/22/2016 3:32 AM (GMT 0)
Call Datolli Cancer center in Sarasota Florida for a free consult. I was treated there 3 years ago. They only treat prostate cancer. One doctor, one first class facility.
Posted 7/23/2016 2:13 PM (GMT 0)
To Allen's point, I had both my HDR brachy and IMRT at UCLA and there were different ROs handling each part.

It's bad enough getting a PC diagnosis, but then it's so difficult to absorb all this info and make a decision about how to treat it. I think you're in the most difficult part of the journey right now.
Posted 9/13/2016 12:19 AM (GMT 0)
It's been a while since I posted and wanted to give an update on DH status and of course get some opinions.

My husband chose to go the combination of Brachy+EBRT+ADT. He has started on Casodex and Lupron but still trying to decide on exact type of each radiation. We want to and need to make a final decision in couple of weeks.

We went to see Dr. Zalefsky at MSK and we will be going to him for Brachy, the decision we have to make is LDRT or HDRT. Dr. Z initially recommended LDRT - his reason was that my DH seemed to him like a guy who would want a less involved procedure but said if DH wants to do HDRT he can, he would do one fraction for HDRT. How do we decide which one.

The bigger choice is of what kind of EBRT to do. We have an option of (in no particular order):
- SBRT (already approved by insurance) would be done at MSK in NYC
- IMRT - Dr. Z is advocating to have it done in NYC MSK saying that they are using MRI instead of CT scan but we probably could do it in NJ MSK location using CT scan as going to NYC is too inconvenient
- Proton - in our neighborhood in NJ, out of network but they would cap our out of packet to a reasonable amount. Dr. Z would be OK with us doing it in NJ and we even talked to MSK doc that works with Dr. Z that has experience with Proton and used to work in NJ facility.

At first we were really leaning towards Proton for convenience and on paper it could have possibly less future effects since it is more precise delivery and delivers less radiation to other organs. SBRT has an advantage of being only 5 sessions although it would be in NYC but it's manageable .
Posted 9/13/2016 1:20 AM (GMT 0)
I'm not smart enough to give you an informed opinion on SBRT vs IMRT for this. (Although I'm not sure if there's an actual benefit to Proton from what I understand--at least as a monotherapy.) But as a fellow Triple Play guy, I will be keenly interested in what others have to say.

Regarding LDR versus HDR brachy...the recommendation is based on what the doctor thinks your husband would like? Personal preference is certainly important, but your husband should be the one driving that. Does that mean that Dr Z considers the two to be a toss-up in regard to efficacy and SEs?

Glad you're making progress and hope the HT is going well...
Posted 9/13/2016 4:15 AM (GMT 0)
Look at the table in this article that shows the best proton has to offer at UF Jacksonville, compared to 5-yr outcomes of SBRT, IMRT, HDRBT, & LDRBT:

Proton therapy at University of Florida Jacksonville – 5-year outcomes

As you can see, none are worth paying extra for. Of the external beam radiations SBRT is the cheapest and the least ordeal. I can't think why anyone would pay extra for IMRT or protons or go through that many treatments. I'd also recommend Alan Katz in Flushing who has done more SBRT than anyone, and does high risk cases.

As far as brachy goes, Zelefsky is among the tops at LDR brachy. It would be silly not to use him for that, imho. The IMRT part of the combo therapy can probably be done in your local neighborhood. The CT or MRI isn't as critical with IMRT as it is with SBRT where margins are tight.
Posted 9/15/2016 5:28 AM (GMT 0)
Just chiming in here. My hubby recently completed SBRT under the care of Dr. Zelefsky at the NYC facility. While my hubby's situation is different from your husbands, I just thought I would tell you a little bit about the SBRT experience if you are interested. Before the SBRT treatments started there was some pre-procedure issues that had to be taken care of. Hubby was started on Casodex and then Lupron shots for 2 months time. We were able to set them up locally. We did have to come to NYC for the surgical (anesthesia) fiducial placement and hubby opted for the SpaceOAR gel insertion too because of his chronic GI issues. That took about a day of time including recovery etc. and then we stayed overnight to be sure all went well; it did. 1 week later we had to come back for 1/2 a day for an MRI and Simulation where a mold is also fitted and tiny tattoos are placed on thighs and abdomen. Tall Allen can go into detail I am sure about what this is exactly and technically about. about 2 weeks later we were set up with the SBRT sessions at the Haupt Pavilion on East 67th St. in NYC on the 2nd floor. You probably saw Dr. Zelefsky in that same building? We rented a place for 12 days because we were very far away from our home. Anyway, the sessions went very smoothly and we met with Dr. Zelefsky midway through treatment. Remember sessions are M, W, and Fri. only. You get 5 sessions. My hubby was so very pleased with the process, the techs, the clerks, everything. We are now finished; last session was 8/26/16 and my hubby still has NO side affects. He is cautiously optimistic life will continue this way. We have to return for blood work and DRE in 3 months, then in 3 months again then every 6 months. There will be repeat biopsies for him in 2 yrs time. We are both very happy. You would be in very safe hands if you chose Dr. Zelefsky.
Posted 9/30/2016 9:34 PM (GMT 0)
Margaid-
I have gone through the "I want it out"so traveled to a larger more reputable hospital and met with Dr. Corman Uro and Dr Badiozanomi RO at Virginia Mason in Seattle . The recommendation I received was that I do "triple play" So went ahead and set that all up and was very relieved that I had made my decision then they did a urine volume test on me and burst my bubble again. Short story I ended up having IMRT 80gy 5 days a week 8 weeks.Also started HT 2 months prior to IMRT.

I'm a G9 with all my 9's on on side also. We didn't have a choice to travel out of town for 40 day's so we ended up back here at home. The machine they use here is As good or better than V.M. and I really have come to trust my RO.

I've been following your story a bit and it sounds much like mine so I thought I'd let you know how things went with me.

I'm half way through IMRT yesterday so pushing through. Also have to travel to Seattle to have a tumor removed in my duodenum later this month so I also have added complications to go with my PC

I hope you find the right choice for your husband

The Artistic One - Mark
Posted 10/14/2016 3:17 PM (GMT 0)
I did not post in a long time partially because I did not receive (or I missed it?) email notifications that there were posts on my thread - I am sorry for not acknowledging your responses.

TallAllen - as always, your input is extremely valuable. Any time my DH questions something I bring up your comments as counter-argument. :) My DH did decide to go with Zalefsky and do LDR. We had to wait a little longer than we first wanted for an appointment but now we have an appointment on Nov 1st for pre-surgical testing and LDR Brachy and on Nov 9th. Based again on your input and links you provided we decided against Proton but my husband is still not sure of is if he should do IMRT or SBRT. We did not find a lot of information about using SBRT with Brachy. The definite advantage of SBRT is the short duration of it even with the inconvenience of going to NY city for it.

ArtistMark - yup, my husband was definitely in "just get it out" camp and I am so glad I found this forum and that my husband started to consider other options. We/he is very comfortable now with choosing the Triple Play - although not too happy with the hot flashes. Sorry to hear about your additional complication - it is taxing enough to deal with one problem. Hope all goes well with your surgery. (I had to look up what duodenum is - learning something every day.)

InquisitiveOne - glad to hear all went well with your husband and that you had a great experience with MSK in general. We went to Zalefsky on Tall Allen's recommendations. My husband did not want to even go to him at first because he did not think he wanted to wait that long since Zalefsky required MRI 6-8 weeks after biopsy. We are not that far from NYC so traveling there is not a problem. I will go with my husband for pre-surgical testing just for moral support and obviously I will drive him to/from on the day of LDR Brachy. They will also do the gel implant same day as brachy and I think fiducial markers implants as well. Afterwards, if he decides to go to MSK for SBRT we think he probably could just take public transportation by himself.

It was soooo overwhelming and soooo confusing at first with all the information and making the decision for the type of treatment and who to go with. I am glad that part is behind us although DH is still flip-flopping on SBRT vs IMRT.
Posted 10/14/2016 6:22 PM (GMT 0)
Margaid,

In my earlier post, I was showing the evidence for SBRT, proton, and IMRT as monotherapies for high-risk patients. SBRT and protons are not used in conjunction with a brachy boost to the prostate. They can be used as a boost to the prostate instead of a brachy boost. I'm sorry - I should have made that clearer.

There are a couple of clinical trials for combining SBRT and brachytherapy, but they are both for intermediate risk patients only. Frankly, I don't see the point, since SBRT alone has very high cure rates in intermediate risk men.
/clinicaltrials.gov/ct2/show/NCT02280356
/clinicaltrials.gov/ct2/show/NCT01655836

I think Zelefsky is a great choice. It's usually about 4 weeks of IMRT treatment, which I suppose can be done anywhere if Zelefsky is amenable. Is the plan to have the IMRT part of the therapy done locally or at MSK?
Posted 10/14/2016 11:23 PM (GMT 0)
haven't decided on where to do IMRT
Zelefsky did offered bracky + SBRT, so I am surprised he offered it given the criteria is intermediate on the link you supplied. gleason 9 is not intermediate. I see sloan is running the trial, Zelefsky is a co-investigator...
was tempted on SBRT given its only 5 days but was suspicious since I couldn't find any literature on it, now I know why.
IMRT at sloan would be a lot of travel, but sounds like they have more advanced equipment- uses MRI and a spacer between prostate and intestine
we did contact a doc at the local cancer center, or can go to a satellite sloan that is only a few towns over. I would guess IMRT is now pretty standard, does it make a difference where it is done?
Posted 10/15/2016 12:24 AM (GMT 0)
That trial never made sense to me, unless you understand where Zelefsky is coming from. He started as a brachy doc and later became convinced that SBRT works as well (for monotherapy). So his first inclination is usually brachy, and he considers SBRT an add-on. Some SBRT docs (like Alan Katz) would argue that it provides as good or better dose to the prostate as any brachy dose could, so there is no need to add anything to it. Still others are giving IMRT with an SBRT boost to the prostate. I don't know that any are better than any of the others. SBRT monotherapy is certainly the most convenient of the alternatives, but there is very little data behind it so far.

To my knowledge, many ROs use MRIs in planning for external beam radiation. They actually fuse the images of a CT scan and an MRI together. There is nothing unique either about the equipment they use at MSK. There are 3 major manufacturers - Varian, Accuray & Elekta - and they all make excellent linacs. I think VMAT (arc) or Tomotherapy (spiral) gives excellent dosimetry for IMRT. The image guidance system they use is also important. More important than the machine is the experience and care taken by the RO in putting together the best plan possible. If you have someone local who has experience on some top-of-the-line equipment, it may be a lot more convenient than 20 trips into the city. Urinary urgency can be a problem on a long ride.

As for the spacer, I'm not really a fan. It "solves" a problem that isn't there. It does nothing to improve acute rectal toxicity, and late term rectal toxicity with modern IGRT/IMRT is very low anyway. It doesn't seem to be worth the cost, based on what I've seen so far.

https://pcnrv.blogspot.com/2016/08/spaceoar-hydrogel-decreases-rectal.html
Posted 10/15/2016 12:48 PM (GMT 0)
thanks for the article
I found many articles on bracky that show good results so that seems like a keeper
now that we understand where Zelesky is coming from with SBRT- IMRT seems like a safer move. will see if he will work with local docs
the leukemia doc told an amusing joke that circulates in their center- if a man came in with chest pains- a heart specialist will find a heart problem, a neurologist will find a nerve problem and a psychologist will find a mental problem. so it's not just radiation oncologist's that have a narrow view of patient care
Posted 10/18/2016 8:24 PM (GMT 0)
Husband called Zalefsky to talk about SBRT vs IMRT and he still said that SBRT is a good option for him. It is so frustrating. We were lucky enough to have found this forum and we have a healthy dose of skepticism of anything we are told but don't always have enough knowledge and understanding.

Want to find a good and skilled RO for IMRT in NJ. What is the best and most efficient way to find one? I feel while we are at it I would want to find a new Urologist and Medical Oncologist - the Robert Wood Johnson (Rutgers) is just too cumbersome to deal with.
Posted 10/18/2016 9:28 PM (GMT 0)
Did you try googling "IMRT prostate New Jersey"?
Posted 10/19/2016 9:30 PM (GMT 0)
Yes I did. But the issue I had was to try to figure out what is a good place to go to. Some that the search came up with we already know we don't like.
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