Any experiences with Dattoli Center for metastatic PC?

I have written before about my 64 year old Dad with lymphedema as his initial presentation with PSA of 39 and positive lymph node involvement. Gleason score 8 from the lymph node biopsy. His bone scan revealed wide spread mets, which was expected. He has had one hormone shot, his 2nd round of chemo and treatment for the bone mets. The lymphedema is not improving, which is concerning, but otherwise he is handling the treatment well. The urologist wants to start him on a pill in addition to the hormone shot. Sorry I don't have the names, but it is all pretty standard I guess. I have been strongly encouraging him to get a 2nd and 3rd opinion. My choices are the doctors in Marina Del Ray and Dr. Myers. He has spoken to a friend of a friend who went to Dattoli with widespread lymph node involvement who is still alive and it has been 10 years. My parents live in FL so he was intrigued by this and called them. He was really impressed with Dr. Dattoli, who he spoke with, and loved his approach. My Dad has always been a "think outside the box" kind of guy and liked that Dattoli has done his own thing and appreciates his confidence. Dattoli believes he can treat my Dad. This would be a very aggressive approach. I am shocked really; I thought his involvement was too much for radiation. Dattoli's treatment approach would have been very different for my Dad. His choice would have been a scan in Orlando first before any hormones/chemo. Then he would have done radiation first, followed by hormones and chemo. So now he wants him to stop the hormones, continue with the chemo, get scanned in Orlando ASAP, and then start the radiation. Dattoli said he has had success treating widespread mets. He made it clear this would not be a cure, but another way to get it under control for an extended period of time hopefully. He is trying to treat the PC very aggressively so it turns into more of a chronic condition versus his current treatment approach/prognosis, which is palliative care. Dattoli also said it does not work in all patients as well as he would like, so there is risk and chance involved in this as well. I liked his honesty and confidence, but I am hesitant. First, if his approach can be so successful why are more people with wide spread mets not choosing this route? Second, stopping the hormones scares me. If hormone treatment has been proven with studies to prolong life and my Dad is not getting it for several months, then is he putting himself at risk to try this more aggressive approach? Dattoli would re-start the hormone therapy after the radiation.

I was wondering if anyone has gone to Dattoli with wide spread mets and what their experiences were like? My Dad seems to be 100% on board with this plan. I am happy that he is being more positive and has a fighting attitude. He did not before, so if nothing else I am grateful that he is showing the will to live and fight. My Mom and I have decided we will support him 100% even if it is not the treatment route we would have preferred for him. Easier said than done, but he if he chooses this route he needs our full support and positive outlook for sure. I am still strongly encouraging a visit with Dr. Myers as well. Any insight into Dattoli’s approach or from people who have seen him would be greatly appreciated. Thanks so much

Why now,

I share your reservations. If Dattoli has had success with widespread mets, he should publish it, as many would like to know about it.

"Oligometastatic cancer" is a term that's been in vogue, but there is really very little evidence that such radiation treatment cures anything or even slows it down. But that is when there are 3 or fewer mets. When there are more than that, it's a pretty safe bet that the cancer is systemic. I looked into that case recently:

SBRT for oligometastatic recurrence

As you can read there, there was a distant recurrence within 5 years in 85% of the men with just a few mets. Did that treatment slow it down? It's hard to say. How can we know what would have happened without a controlled clinical trial. Again, your father's case is different - he's had multiple known bone mets and LN mets.

One of the members here spoke of a very high radiation dose used by Dattoli for treatment of pelvic LN mets. I don't know if that's what he intends for your father. The danger is that enteric tissue (the kind lining the intestines, which abut the pelvic LN area) is very sensitive to radiation damage. Most ROs, when treating that area, keep the doses low (50 gy for IMRT, 25 Gy for SBRT) to avoid damage to the GI tract.

I acknowledge the possibility of a benefit, but is that one chance in ten? in a hundred? in a thousand? Does it slow down progression? By how much? And what is the risk of damage to other organs? Maybe Dattoli has data, but it hasn't appeared in a peer-reviewed publication.

I also share your reservations about delaying the start of chemo+hormone therapy. That's something we do have data on from two large clinical trials - CHAARTED and STAMPEDE. If he wants a clinical trial, NIH is running one where they combine chemo+ADT+ProstVac. That seems to me to be much more promising.

Docetaxel and PROSTVAC for Metastatic Castration-Sensitive Prostate Cancer

I understand his desperation and desire to go out of the box. Dr Myers is a pretty out-of-the-box kind of guy - perhaps it's worth getting his opinion first. I think he should also talk to a more in-the-box radiation oncologist to get some perspective on this. Debra Freeman in Tampa is an SBRT expert, and Constantine Mantz in Ft Myers might also be a good choice for an opinion.

- Allen

I went to Dattoli after seeing that some of the members here had used him with success. I had a couple suspicious iliac nodes after getting MRI at Sand Lake at request of Dattoli. Then I got extensive IMRT - 75 grays- which TA feels was excessive to all pelvic nodes. However I've had no SEs. I did have radiation damage from SRT but I had that locally with a team that was fairly new and did not specialize in PCa ( my bad!) I attribute the lack of SEs to the amazing care Dattoli takes in the administration of radiation. I'm still on ADT3 and will be for 13 months. I also take the meds listed below in my sig to supplement ADT and/or mitigate SEs.
All I can say is that Dattoli has two machines which are always busy and gets clients from around the world with all degrees of PCa. That's all he treats: PCa. He and his staff are highly experienced and knowledgeable many having worked with him for decades!
You can't do any better IMHO. And Sarasota is not a bad place to stay for the required period. Plenty of condos available.
Bob

Why: Fairwind brings up a really good point, as has been pointed out this is a little out of the box and your dad should be sure and contact the insurance company so there are no surprises down the road. I had a heck of a time but I was on my third go round of treatment.

Whatever your dad decides I wish him the best of luck.

David

Bob:
It's good to hear you are doing well after your treatment. When I was in Sarasota it seemed that everyone on Medicare had no issues with insurance but being a young guy (lol) I had to fight like heck to get covered, I believe it was because I had already had salvage radiation, full pelvic, and the insurance company thought that was enough.

Dattoli has been doing his thing for 32 years and we both saw first hand where his patients come from, all over the country and some from out of it. I'm from the Seattle area so I get the farthest traveled in the lower 48 award. He told me he started at Sloan-Kettering but felt it was too confining so he went private and opened up in Sarasota. Dr. Meyers recommended Dr. Dattoli to his patients he sent for the ferahemme scans in Orlando who needed follow up radiation. My Dr. up here was blown away by the attention to detail of the feraheme, I'm sorry to hear that it was stopped.

Good luck when you come off of the "juice". He really throws the kitchen sink at this sh%#.

David

Bob-

So he started radiation on you while you were already experiencing bleeding from your intestines?

I think those trying novel and risky approaches should do it only under the auspices of a clinical trial approved by an IRB. Patients should be giving informed consent that they are not receiving the standard-of-care and there may be serious adverse outcomes.

I'm glad he is very careful, but it doesn't really matter how careful an RO is when dealing with radiation doses that high - there will be significant doses absorbed by surrounding tissue. I hope he reviewed with you the dose/volume histogram and the bowel dose constraints before he got started.

Let me help you understand the relative doses involved here... We define a quantity called the "biologically effective dose" (BED) to compare treatment schedules, and we'll use an alpha/beta ratio of 3 for enteric tissue, and 1.5 for cancer tissue. So the doses delivered for pelvic LN treatment are as follows:
• "normal" IMRT dose of 50.4 Gy at 1.8 Gy/fx has a BED of 81Gy for enteric tissue and 111 Gy for the cancer
• a "normal" SBRT dose of 25 Gy at 5 Gy/fx has a BED of 67 Gy for enteric tissue and 108 Gy for the cancer
• the Dattoli dose of 75 Gy at 1.5 Gy/fx has a BED of 113 Gy for enteric tissue and 150 Gy for the cancer

So you can readily see why many ROs that do this use SBRT for this purpose rather than IMRT - it spares the enteric tissue much better while delivering a cancer-killing dose that is approximately equivalent. Dattoli's dose, while 50% higher in cancer-killing power, is also significantly higher in enteric tissue-killing power -- he's delivering a higher killing dose to enteric tissue than the other treatments are to kill the cancer. This is unconventional to say the least, and I think it requires proof of safety. Perhaps he has the justification, but he has not published it -- and he should.

As for Feraheme - Sand Lake apparently dropped its use, and did not replace it with Combidex, which is now in use in Nijmegen. If they found it to be ineffective or no better than other readily available scans with longer follow-up, they ought to publish the results so we can all benefit from that learning.

I'm not saying that any of the treatments or diagnostics are bad, I'm just saying that they are outside of customary practice, and require publication and the scrutiny of peer review.

- Allen

TA

I had mild bleeding in the lower 8cm. of my rectum, not in my intestines. This was confirmed by colonoscopy in July 2015, three months before DART at Dattoli. The bleeding started back in 2014 during SRT.
Dattoli reviewed the SRT program I had to determine exactly how much radiation I had and the precise location of each fraction as well as the exact location of each remaining pelvic lymph node in order to develop my DART program in order to not duplicate any radiation done during SRT. All the various scans done at Sand Lake and by Dattoli determined that no PCa existed in the prostate bed, organs, soft tissue, etc elsewhere in my body. The use of 1.5 gray per fraction was intended to slowly build up the dose so as to be careful not to radiate excessively.

Dattoli has been doing brachytherapy and IMRT for decades on thousands of patients. His chief dosemitrist walks each patient through an amazing slide show illustrating the precise program she and Dattoli have developed showing via an animation of your body exactly where and how the radiation is to be applied. Each session is preceded by a brief scan to ensure the truebeam is precisely lined up and radiation is applied only during the exhalation phase of each breath (as verified by using a laser and camera) to minimize organ movement. I really believe the degree of precision is without peer.

I appreciate your concern for my well- being but I'm doing fine notwithstanding the SEs from ADT ( mostly weight gain and joint pain). Dattoli does not believe in Long term ADT either. In my case it will be 13 months. Hooray!


If I find out more about his track record I'll let you know.

Bob

Thank you everyone. I am amazed with the knowledge and support on this site. Tall Allen, thank you for your thoughtful guidance and wealth of knowledge. I am encouraging my Dad to join healing well, but this is all so overwhelming right now, maybe with some time he will be ready.

I know this approach is controversial so I imagine not many people have had experiences going this route with such advanced stage cancer as my Dad's. He has decided to definitely get the scan in Orlando and then see exactly what Dr. Datolli intends to do. Interestingly enough his doctors are not as against this as I thought they would be. They all would like more information on what Dr. Datolli actually intends to do after the scan before they can offer more guidance and opinions. I am still strongly encouraging him to have a consult with Dr. Myers as well.

The advice on insurance is great as well. Datolli's office has been very helpful and he is very lucky to be starting Medicare in less than a month so that is great news everyone has said. Thanks again everyone, I will be updating again after the scan.