I received the following private message asking about the Dattoli Clinic. I thought I would post it here and answer it. Perhaps others may contribute as well.
"I saw a post from you mentioning that you were treated by Dr Dattoli. My husband and I are exploring treatment options, stage iv Mets to lymph nodes. Would you see Dr Dattoli again if you had a do over? Thank you for all your awesome posts!"
Written by
cesanon
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1. He certainly cleaned me up. I haven't had any new metastasis or recurrence since he treated me in 2011.
2. He is very very very aggressive. He used way high levels of radiation. Though it seems like others are now doing that. But at that time it was a little outside the standard of care.
3. If you like aggressive treatment, that is what he does.
If you are seeking aggressive treatment that pushes the limits of current standard of care, it is not always easy to find. You can't get it from major medical centers. They are just institutional incapable of doing that.
4. Dr. Dattoli came from a major medical center, my recollection is it was John Hopkins.
5. I would check to make sure he still has the latest equipment. I would like to make sure the equipment is not more than 3 years old or so. (You should do this for anyone who is going to give you radiation treatment) The last few years there has been a new generation of linear accelerators that you really want your doc to use. This equipment is not cheap. It has to be painful to replace perfectly working old equipment with new generation equipment.
5. He does IMRT radiation treatment. I think now adays you need to look at SBRT (also known as "Cyberknife"). SBRT uses higher, more targeted doses and much fewer treatments (5 vs 40). You need to check, it may be that he now does both types. I believe each has its own uses.
6. A lot of Myers patients, who used Dattoli, ended up with depleted levels of CD4 t-cells. Levels like AIDs patients. There was controversy between Myers and Dattoli over the cause. My uninformed hypothesis is that treating the lymph nodes with so much radiation over so many doses is what may have done it. Now I have to say he did clean me up. It's been 8 years and no-recurrence. But... but you may want to investigate SBRT for the lymph nodes (fewer doses to the lymph nodes might mean a larger portion of your T-cells may stay out of the line of fire). You might also consider surgical treatment of the lymph nodes as opposed to radiation.
Please, if anyone else has anything to say, please chime in.
Dr. Meyers sent me to Sand Lake Imaging in Orlando for the off label use of Fereheme to detect PCA mets. They supposedly found four LN clusters. Meyers then sent me to Dattoli for treatment of the LN's. Eight weeks of daily treatments. Total failure! PSA started to rise after one month. Both my local MO and Uro warned me not to do this treatment. Meyers then had blood work done on my immune system. Everything was shot in the ass just like your CE-4 levels. The added expense ($4,000) of living in Sarasota for 2 months was adding insult to injury.
You have to test for it. When Dr. Myers tested for it, my other docs were impressed that he had the insight to think to test for it. It is not a common test to run.
If you have depleted CD4 T-cells, it's something you want to know. Unlike other T-cells, they do not regenerate. You get a finite number of them for life.
I used Dr Dattoli in 2015 for lymph nodes. IMRT 75 grays in 50 sessions which was considered radical treatment. He treats really tough cases. No recurrence there but in bones later . I asked him about SBRT to oligomets but was told he hadn’t adapted it. So I went to Dr Pablo near me who used same TruBeam machine to administer 10 grays of sbrt in three sessions to bone met. Way more convenient and cheaper although Medicare pays . Dattoli is very good. Started practice at MSKCC . One thing that bothers me is that he hadn’t adapted SBRT last time I checked. He is aggressive but overly conservative in terms of adopting new technology. Wonderful staff ! Patients worldwide. Sarasota is nice place to spend off time!
I’ll have to go back and look at the lab work Dattoli did . I can’t believe he’d do something dangerous. I don’t recall any side effects but I was on so many drugs who knows? If it was a problem what would be or would have been my symptoms? I don’t worry about stuff unless I have to these days. Life is pretty good. I feel blessed.
1. Dattoli and Myers had some major differences over this and its cause and effect.
2. "If it was a problem what would be or would have been my symptoms?"
Susceptibility to certain types of infections. One in particular that Myers mentioned was a fungal type of lung infection that is common to the desert and farm areas of California called Valley fever. And apparently diseases common to warm southern areas of the US as well as tropic areas in general.
He also warned me away from any vaccines that use live but weakened innoculants as opposed to dead innoculants.
It's not an expensive test. Why not just get the test and see what's happening.
I don't either. The side effect of depleted CD4 T-cells will occur with a gradually declining immune system (it naturally declines with age) that is currently filling in the breaches for the missing CD4 cells.
You get a minor infection that shouldn't be much and it turns into a life threatening disease. Think a cold that turns into 4 weeks in the hospital fighting for your breath against pneumonia. Dying gasping for breath isn't one of the better ways to go.
If you already know you have depleted CD4 T-cells, you will get yourself to the emergency room a few days earlier, and you can inform your docs about this particularly immune system deficiency in order to better inform their treatment of your pneumonia.
my cancer was discovered she I was 59 years old . I opted for the Dattoli therapy. I had 5 weeks of the imrt radiation therapy , rested for a month or so and had 71 brachytherapy seeds implanted in the prostrate. That was on Thursday at Sarasota hospital. On Friday I visited the clinic to be sure the seeds were in place and none had migrated out of the gland.on Saturday I drive 17 hours straight thru to my home in Pa. After. 22 years I have had nobreacurrance or no serious issues as a result of Dattolis therapy. I would highly recommend at least exploring this therapy. Ima long term survivor and certainly an advocate of the Dattoli therapy.
It’s not different . It’s DART which he used on me in ‘15. It’s a method to monitor your breathing so he knows when the object (tumor) is moving in order to hit it more precisely and avoid collateral damage. It’s still IMRT but more precise.
He should’ve adapted SBRT by now as it’s just as precise , cheaper and with a fraction of the number of sessions due to higher dose. Like 5x higher.
I had all pelvic lymph nodes done by him at only 1.5 grays per session , 50 sessions, 75 grays. IMRT is normally I believe 1.8-2.0 grays per session whereas SBRT can be up to 10 grays per session depending on location. BUT I do not know if it’s safe to do those lymph nodes with SBRT due to sensitive location near other organs. I would ask about that .
He and his staff are caring and extremely experienced but he’s not doing patients any favors by inconveniencing them.
Here’s another thing: He charges like $1500 per session but Medicare paid only like $500 at 80% ( medigap pays the other 20%). For some reason , Medicare paid 100% for SBRT ( at 80% ) . So he wouldn’t lose much switching to SBRT because he’d get paid more per session from Medicare and would be able to treat more patients.
Thank you for clarifying the DART for me. We are going to consult with an SBRT center in Miami and a radiation oncologist in Tampa at Moffitt who has authored several papers on SBRT for oligomets.
Sounds like a plan. If you care to ask him I’d like to hear what Dattoli says about SBRT and what the other ROs you see say about when it should be used. I’ve had it twice here in Hilton Head for bone mets as you can see in my profile. Huge convenience in terms of location, number of trips and living expenses ( lodging meals travel) .
I really liked Dattoli and his outstanding staff . Too bad he hasn’t adapted. But I believe that at the time and given the extensive radiation required to do all pelvic lymph nodes correctly ( I’ve had no recurrence) it was worth it. But it wasn’t with it for a couple bone mets!!
My general feel is that the SBRT is appropriate for smaller, very targeted areas: Bone, lung lesions <5cm, single lymph nodes etc, and that in bone it has the advantage of being curative rather than palliative to the lesion (IMRT is palliative).
I think IMRT is used for the pelvic radiation because it is used over a broader area than the focused SBRT. Docs are trying to radiate, not just the active identified lymph nodes, but any additional residual cancer and micromets that are assumed to be there but did not show on a scan. If IMRT is indicated for for prostate bed/pelvic radiation over SBRT, I am thinking Dattoli's DART IMRT method allows him to radiate a broader area than SBRT, yet the increased percision will spare bladder, intestines, aorta etc, so he can deliver a higher dose. That is my current understanding, but I could be off somewhere. I will certainly post more after our RO visits in a month or so.
I agree. When you see the large area and the number of lymph nodes in the pelvic region and see the adjacent organs it makes sense that small targeted doses per session are necessary to avoid collateral damage. Dattoli’s has his dosimetrist show you his radiation plan on a computer model of your body so you can see what will be done. I had only two suspicious iliac nodes but we hit all of the pelvic nodes because it’s easy for cancer you can’t see to travel through the lymphatic system.
hmmm that could explain how the CD4 tcells got killed off.
My understanding is that it is the same lymph nodes that tend to show up up with prostate cancer over and over again. Maybe there is something to be said for using SBRT on the lymph nodes.
"??! All pelvic lymph nodes are always done for the reason I stated... to get all the cancer in that lymphatic system!"
yes, that is where all my CD4 Tcells were. Or at least a larger portion of them were. And with enough fractions it seems that might be enough to kill most of them as they keep recirculating through the same radiated lymph nodes.
All the other types of Tcells grow back if killed. CD4 Tcells are different.
CD4 Tcells, once killed, never return. They are produced only during a period of adolescence, in the thymus, after which your thymus changes and it becomes impossible for your body to produce more of them. They are the cells that direct all the other t-cells and lymphocytes in immune responses. They are the cells that AIDS attacks and kills.
Perhaps IMRT may not be the best treatment for lymph nodes. There are many other alternatives you know.
Just because you have a hammer, doesn't mean that everything is a nail. LOL
As opposed to blanket IMRT for lymph nodes, you have:
(a) Surgery, and/or
(b) Targeted SBRT, and/or
(c) Androgen deprivation therapy, and/or
(d) Chemo / Taxotere therapy, and/or
(e) PMSA lu177 / ACT 225 therapy
With all these options why would blanketing a large area of your human tissue in your body with IMRT ever be the considered to be the preferred treatment. Why would it even be considered as anything other than a treatment of last resort?
I am afraid I am venturing into territory in which I am not well versed, but traditionally, radiation therapy was used only for pain control of bone mets for prostate cancer. Only in recent years has the concept of ablative therapy using SBRT for bone mets in oligometasasis been put in to practice. I actually don't know if IMRT or other external beam radiation modalities could also be used for ablation of bone mets, but SBRT does appear to be the prefered radiation modality when trying to 'knock-out a met' as opposed to just using radiaion for pain. Is it used because it is more effective or because it is just more convenient to have fewer treatments?
hmmmm Dattoli used radiation for my bone mets. I had no pain. I thought it was for ablative purposes.
He used high levels of radiation. He was certainly able to target it with some precision. Maybe he was doing the equivalent of SBRT bone met treatment back in 2011.
It seems Dattoli went, and still goes where other ROs won't in terms of agressive treatment, and in 2011 there wasn't much talk of ablative therapy for bone mets, as the thought was that, once in the bone, local therapy would not extend life and only systemic treatment had value. The fact that your bone mets were ablated with non-SBRT radiation shows it can be done, but it seems to me that SBRT would be more appropriate for bone nowadays (to Break60/Bob's earlier point). DART is probably still a good choice for pelvic radiation.... from my limited understanding.
"SBRT for select low- and intermediate-risk prostate cancer patients. SBRT grew from the notion that high doses of radiation typical of brachytherapy could be delivered noninvasively using modern external-beam radiation therapy planning and delivery methods."
Interesting as Dattoli uses brachytherapy and IMRT.
If the Cyberknife is a substitute for brachytherapy, it would seem that in essence Dattoli was allready doing the equivalent of SBRT plus IMRT.
2. "Dynamic Adaptive Radiotherapy" This sounds pretty much like what Dattoli has been doing all along.
You need to independently investigate SBRT Cyberknife. It is much less profitable to the provider. Dattoli has a financial conflict of interest in using SBRT over IMRT.
5 SBRT treatments are going to be a whole lost less revenue than 40 IMRT treatments.
By the way, as I found out, Cyberknife is not the only way to administer SBRT. TruBeam Linac which is used for IMRT is also used for SBRT and was used on me although the RO has access to CyberKnife which takes longer because it’s slower. He uses it on more sensitive areas like lungs, brain etc . Not needed on bones . At least that’s my rudimentary understanding. I’m no doc!
As a patient I don’t disagree with you but the statistics apparently conclude the cost/ benefit ratio is against broad testing. I guess You and I are more concerned about the poor guy who fails to get diagnosed ( either not at all or too late) than the poor guy who gets an unnecessary biopsy.
That the second highest compensated medical specialty has consciously chosen to ignore non-invasive types of of post PSA testing, and has refused to develop protocols and standards of care that would materially reduce its compensation, is not an excuse to refrain from PSA testing.
Fix the protocols and standards of care instead. Shame Shame Shame on them.
I just ask a lot of questions about what’s being done to me (lol) and do a lot of research. This is very complex stuff but I like the way the technology is advancing to make it more convenient and less costly while still safe.
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