I'll be starting RT in April on pelvic area lymph nodes that are the source of my recurrent PCa that was detected by a PSMA scan in January. Since then I've been on ADT & Zitiga/prednisone in preparation for the RT. I have what I believe to be a very good local RO who is preparing the radiation plan in consultation with Dr Zietmann from Mass. General.
Meanwhile based on my research, including the experience of men on board, I decided to reach out to Dr. Dattoli in Sarasota Florida about 75 minutes from my home. He asked to review all my records and then he called me to discuss my case for over an hour. The next day he called again and spent another 45 minutes explaining his approach and why he believes it to be superior to the local option. No cost for any of his time so far and I have to admit he was very persuasive. The local treatment is literally 10 minute from my office and because it's in my health insurance network would be at no cost to me (I've hit the annual out of pocket max). With Dr. Dattoli it'll end being about a $4k cost (out of network) and have a 2.5 hour commute daily for 8 weeks. Neither the cost nor the commute would matter IF his treatment plan is superior to my current option...but how do I decide that? Among other things, he references his "DART" technology as the edge he has over other options. Dr. Dattoli is very passionate and persuasive...and in a perfect world he would be motivated by his conviction that his approach gives me the best chance to knock this out - and he says that is precisely his motivation. But as we all know, in the real world money can cloud such pure motivations. Any thoughts out there on this decision? Do any Dattoli patients want to weigh in?
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I’ve already opined on this. Dattoli is excellent but I stayed in Sarasota for treatment. Commuting 75 minutes would be stressful. DART from my memory involved a laser on the ceiling focused on a device attached to your chest which monitors your breathing so the linac only administers radiation in between breaths.
He used very low dosage on me: 1.5 grays per fraction which required 50 sessions/ fractions/ days to administer 75 grays which is more than I’ve ever heard done. Really tedious! He does this for lymph nodes for safety purposes I believe. I must say I had no complications and no recurrence since (there) after having all pelvic lymph nodes done in 4q 2015.
If I were you I’d ask the local RO how often he’s zapped lymph nodes , what daily dose you’ll have and how many total grays .
Please help me understand the implications of low cb4 t cells. I was below minimums in January while 3/4 of the way through EBRT. The EBRT was to lymph nodes and my L5 vertebrae following taxotere chemotherapy. Prior EBRT on the prostate bed and other lymph nodes in 2012. My next blood panel will be in 4 weeks. What might I expect? I am feeling great!
Thanks for explaining this so clearly. I am at 684 (Absolute lymphocytes; the normal range is 850-3900) Jan 2019. As I understand it this number represents a combo of B and T cells. So, I should not expect that number to go up with time, correct?
Thanks Bob, you have indeed opined via our private chats. Your input is always concise and valuable. 40 years as a CPA has trained me to be as analytical as possible in these situations - though it's difficult to keep emotions out of it. On the one hand you want to do everything possible for the best outcome but you have to balance the incremental benefit of going one direction or another against the cost of doing so. And by cost I don't just mean dollars...though they are easier to quantify. In our situation it's very tempting to suspend our disbelief and believe everything we are told. The challenge is separating fact from fiction. I happen to believe that the line between the two is not always clear. Tall_Allen is a tremendous resource to us all and adheres to a strict model of accepting only that which is proven scientifically - understandable and admirable. Sometimes however there are things in the pipeline that may eventually be proven, or things that are very difficult to prove because of study design issues. So in the pursuit of effective therapy and an optimistic outlook I choose to draw the line between fact and fiction a little further into the gray area than some others.
I did the long phone call with Dattoli about three years ago. There have been some success stories from his treatments but I presume that all RO have success stories to tell. I drove over to his office one day when I was heading past his town. When his receptionist introduced me to him, his response was curt and cold. Maybe he was busy. Something to think about is that he owns his own clinic and always needs new revenues. The ROs at big hospitals dont need customers to stay afloat. Additionally, I got a call from Dattoli about 1-2 years ago and he asked if I had sent him a bunch of flowers with a thank you card on it? He said he had several people with my last name in his rolodex and he wasn't sure which of us sent him the flowers. I'll never know but my gut wondered if this was a sales trick trying to make contact again with "unsold" potential patients without having to cold call them. He also told me when we spoke that he could go up and down my lymphatic system shooting all the accessible lymph nodes in an attempt to reduce spreading or possibly destroy the cancer. I'm not an expert but this just seemed like their was greater risk than reward. Thus, I didn't get treatments from him. Another adv PCx patient I know told me that he got his lymph nodes targeted by Dattoli and he felt confident that the treatments were effective and maybe the PSA would stay at zero for years. I asked, how do you know if it is due to the radiation or the Lupron. He said he'd know for sure when he took a Lupron break. Unfortunately, after a few months on the break, the PSA rose again. Lastly, if you look at published studies about the success of Radiation as first line treatment, Dattoli's the primary name on one of the studies showing huge successes. I bought into this study and a few others that influenced my decision to get radiation as a first line primary treatment, which failed. I now believe that many of the radiation studies are achieving results by cherry-picking the "right" patients in order to achieve great results and subsequently drum up more business for their clinics. I'll never have any evidence of any of this. Dattoli might be the best RO in America and may care deeply about patients but I have significant doubt based on what I've said above. Plus, that other RO is probably up on all the latest machines and procedures. As long as you trust him then that might be the right choice.
Is he attempting to be so called "curative" or just slow things for a while?
George - Both RO's are talking possible, but not likely, cure...and from what I've been able to learn that seems true. The most likely scenario is that it puts the beast at bay and buys more time, hopefully years. If that's the case then this course of action is worthwhile. My guess is that the odds of success (cure or long remission) is determined more by the biology (where it is and how bad is it) than the skill of Dattoli vs. my local RO. But there may be % difference that can be gained by skill/experience and technology (as Dattoli claims). Like you however, I get very skeptical when someone sells too hard and makes claims that are hard to prove (or disprove). So, in the end I'll make a cost benefit decision based on my best assessment of the potential benefit compared to the additional dollar cost and logistical complications that would come with a Dattoli decision.
OMG OMG I got the same spiel and my last name is Pappastamatopoulos and it's so common. I told him if it were me I wouldn't have sent him flowers I would have sent him some baklava. LOL
wow, that says a lot. I'm glad you told me this. It makes me feel better about my decision not to use him. He probably called Clark Griswold too lol. And what guy sends flowers anyway? That raised a flag for me instantly.
I used Dattoli. He is very very aggressive. If that is what you are looking for, you won't find better. He tends to use a lot more radiation than others. And then he uses seeds.
I am not so certain if he has kept up with the latest equipment, but apparently so.
Dr. Myers shared a lot of patients with him. It seems like a whole lot of them, including myself were ending up with low CD4-Tcell counts. Myers and Dattoli were at odds over the cause. My CD4-Tcell counts are like that of an AIDS patient, and you get a set number of them by the end of your adolescence and they never grow back. Ever.
My experience was back in 2011 so things may have changed since then.
In retrospect, I am not certain that using radiation on my lymph nodes was such a good idea. I am thinking that maybe using fewer treatments of SBRT on my lymph nodes instead of Dattoli's IBRT would have left me with more CD4-Tcells. But who knows.
I think you have to choose first whether you want IBRT or SBRT. And then whether you want to supplement it with seeding. If you decide on IBRt and/or seeding, Dattoli is probably the guy to go to. If SBRT... I don't know if he ever went that direction.
All the docs want money, he is no better or worse. He needs to pay for a lot of expensive equipment that he needs to keep fully utilized.
SBRT from someone else and seeding by Datolli is probably what I would want today. And each will sort of keep an eye on the other. LOL
Dattoli is a cold fish. So what. I always assumed he was on the Aspergers spectrum... and I thought that was good. He is real real focused and very mission oriented.
By the way there is a wide range of skill sets out there. If you are getting something locally, and convenient, it is statistically likely you aren't getting the best. You get one shot at this. You want the best.
You don't get any do overs with any of these treatments. The next treatment will be called "salvage treatment" and will come with all kinds of compromises.
If you want the best, but conservative, go to a major medical center with a highly rated world renown Radiation Oncology department with the latest equipment. You are unlikely to find that 10 minute from your office.
If you want the best, but aggressive, you need to find practitioners like Dattoli.
Good input...things I'm weighing in my mind. I'm fortunate that Naples FL. seems to attract good docs in search of a better lifestyle after paying their dues at the more prestigious cetnters elsewhere. The "local guy" has great academic credentials and was previously chief RO resident at Mass. General. He maintains those relationship he built at MGH and Dana Farber and collaborates regularly with Dr. Zietman at MGH on challenging cases such as mine. Given Dattoli's sole focus on PCa I'm thinking they have the experience edge. But...how much does that matter in my specific case. Most things in life involve a cost benefit analysis. I can pretty accurately compute the cost - in dollars and time (long commute to his facility) but it's difficult determining the benefit. If it's cure, or longer survival, then it's no contest...but it's not clear. And its an incremental decision. Giving him the benefit of the doubt, lets say Dattoli is excellent. How much better is excellent vs. what appears to be a very good option? Tough, if not impossible to determine.
My experience was very similar to yours. Dr. Myers sent me to Sand Lake Imaging for a MRI with Fereheme. Not covered by Medicare $1500. Scan showed 4 LN clusters that were most likely prostate mets. Dr. Myers then sent me to Dattoli for 8 weeks radiation. Total failure. PSA started to rise one month after completing treatment. I too had a low CD4 count and Dr. Meyers was upset with Dattoli and amount of radiation. Too late! Although all treatment at Dattoli was covered by Medicare it was very expensive to spend 2 months in Sarasota. Upon my return to NJ I was told that my work schedule was cut in half. The reduced work schedule on top of the expenses and treatment failure were very depressing.
If you are doing any sort of seeds, Dattoli apparently is one of the best around. Myers certainly thought so. Some of Dattoli's practice to my understanding was fixing botched seedings by other Docs. I guess he was just talented at it. And very very thorough as well.
I think you would have to look far and wide to find someone as good as him. And it is sort of hard to tell who is good at that, unless you are another Doc who shares patients with them.
I do see evidence of an expertise in the area you noted. Seeds are not applicable in my case however so he focused his discussion with me on his technological advantage over the machines used locally. The demographics in Naples FL however are conducive to a lot of PCa business so it makes sense to me that 21st Century Oncology has machinery caple of getting the job done. Is it the best? I don't know, but I also don't know if something better (if it exists) makes a difference in my situation. If it does...how much of a difference? All reasonable questions in my mind, but difficult, if not impossible to answer.
Years ago I contacted Dattoli about treatment. I was impressed that he called me back and spent a good deal of time on the phone. He sent scrips for meds and monthly bloodwork until i could go there.
I nrver did take the perscrptions but I did get the monthly psa bloodwork. After about 3 -4 months I drove over to meet with him about treatment. All very impressive but instead of Dattoli I met a different doc. at Dattoli Vancer Center.
It was about then that I began to have doubts. Why a monthly psa? Why the scrips before the consultation? At that piont I realized it was done to keep me focused on his place of business.
I backed away and choose another route. In retrospect, it was the right decision for me.
There are several places in Sarasota, and elsewhere, that have the name of the practioner followed by "cancer center" as their name. They are very good at selling themselves. Sarasota is a gold mine of retirees with money. They may be good or even great at treatment as well. The thing with me is that it puts me off. A truly "great" doctor does not need the ego edifice.
Accurate imaging is crucial for radiation. You need to know where to aim as well as what to aim with. Keep that in mind when you choose.
Thanks for the reply. I feel the same way when I get the full court press from anyone trying to sell me something. But I also understand that doctor who goes the route that he did and opens his own cancer center put himself in a position where sales is natural extension of his responsibilities. You'd hope that responsibility doesn't effect his ethics and cause him to state mistruths in order to get business...but it's a definite risk. He certainly conveys his passion when he talks to you, but is that a passion for the patient care or the revenue generation - truth is, probably both. Separating fact from fiction in his sales pitch is not easy for a layman.
Hi. An input on driving. Should you decide on him, see if there is a “ Hope Lodge” in the area. It is lodging run by the American Cancer that one can stay at if more than 40 miles from home and having treatment 3 or more times a week. It is at no cost, just provide your food. Ours had five kitchens and food was never a problem... A “ caregiver” can stay with you too. The doc needs to make a referral.
Dattoli is a cold fish no doubt. He just cuts to the chase . It’s my understanding that SBRT is NOT used for pelvic lymph nodes: it’s too dangerous to use in this large area surrounded by other organs.
In terms of quaranteeing a cure no one can do that. In my case I’ve had no recurrence in pelvic lymph nodes but have had it elsewhere. He may kill the PCa in the nodes but PCa travels as we all know.
If you’re just hitting a few nodes I guess sbrt would be ok. But I believe it’s recommended to hit all pelvic lymph nodes even if only a couple are involved with PCa since the entire pelvic region is likely to have microscopic mets. That’s what my RO told me and it made sense. I had sbrt to bone mets but only one or two had PCa. See profile
Strange. Dattoli did my nodes with IMRT. To this day he hasn’t adopted sbrt. Being cynical , it might be because he makes more money with IMRT due to more sessions. I hope not.
As I explained earlier dart is a way to monitor breathing so the linear accelerator ( linac) only administers radiation in between breaths when you’re chest and organs are not moving. It’s a laser pointed at a target like receptor taped on your chest. If you want to learn how a linac works I suggest you google it. It’s complicated but remarkable. Just look up how IMRT is administered .
Nalakrats you didn't say much about DarT alpha wave by that Jewish company .. I called them they are supposedly starting Trials in a couple of months for neck and skin cancer at The moral Sloan kittering. Then in 3 to 6 months prostate cancer..do u know anything about this hopefully you do
I went for treatment at Dattoli Cancer Center, finishing in January of last year. My RO there is Dr. Joe Kaminski. He and Dr. Dattoli can be cool in interactions, at times, but I've experienced both in warmer interactions too. The DART technique there includes something they refer to as 4D, (ie, time dimension) where a white target is taped on your navel area, and the beam tracks and responds to your abdominal breathing motion to keep the RT dosage tightly aimed. I went there on the recommendation of a friend, who had Stage 3, G7, and has been cancer free for about 10 years, as have 2 others whom he knows and still sees personally. My PSA continues to be undetectable at this point, and my testosterone and energy level are gradually returning .....I'm not sure what the new normal will be. I was quite anemic from shortly after starting triple blockade ADT, and it worsened after RT. That too is improving. I would recommend Dattoili, based on my own experience. I'm sure other centers can claim a decent percentage of "successful" or "curative" treatments....I won't make any assumptions about my status for some time.
I drove up and back daily from Sanibel by myself in 2011 for about 45 days to Dattoli for treatment of Pelvic nodes. I was dxed in 2006 with PSA 12 and G 7 3+4. Had aborted DaVinci at University of Chicago in 10/06 because of lymph node involvement . Started ADT in 10/06 and had radiation to pelvic and prostate. Had biochemical breakthrough in 2010. The story gets long from this point. Have not had time to post completed history as my wife is ill. Was satisfied with radiation treatment to lymph nodes at Dattoli. Would be happy to share all details by phone if you would like.
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