Who ya gonna call? What docs are managing your long term follow-up, post treatment?

I'm having a little uncertainty about who my long-term follow up needs to be with. Looking for a little perspective from this august body.

Urologists are surgeons. They are usually the ones we get diagnosed by, too. So, if one has surgery, then the uro would be a natural for all the follow up. Side effects, PSA checks, all of it.

Radiation oncologists apply radiation, with or without hormone therapy. So, if one has radiation, is the RO the guy for long-term follow up care? They know about RT side effects and so on, but are eventual PSA patterns and responses to them in their shop? If one develops mets down the road, and they're big enough to be a problem, ROs would zap them. Otherwise, would they be ones to prescribe other follow up treatments? Future hormone therapy and so on? Doesn't seem likely.

Medical oncologists use hormones, chemo, and so on. So, if one is in advanced stages and such things are primary therapy, then the MO would be the follow up, clearly. Also, if one's PSA pattern indicates recurrence from some other primary treatment, the MO field would cover those types of salvage therapies it seems.

I moved to another state after my primary RT was done, so lost contact with my RO. Any future treatment would be in the MO field anyway, since there's not much likelihood of radiation or surgery in my future (except maybe for specific mets, heaven forbid). Moving to this state, I decided to see a high-profile MO for my follow up care, which up till now seemed to work great. She left the state, so now I have a new MO that I don't yet trust.

It was suggested, and I'm considering strongly, seeing an RO just for their perspective on PSA patterns after the treatments I had. It seems they and the MOs would be looking at a lot of the same studies, and would likely have very similar views on such things, but maybe not.

So, though a bit long winded as most of my posts seem to be, I was curious who you guys see for your follow up care. (There aren't many here who had radiation and HT as primary treatments, I realize.)

Thanks, Carl. I grew up in Omaha, and my dad still lives there. A bit too far for doctor visits though! We're in Michigan now.

If I read your signature right, you're either just finishing or will soon finish your 24 month sentence on Lupron. Will the MO, or the RO, take lead on monitoring your post-treatment PSA? That's rather the crux of my question at this point.

RO/MO team I was referred to by Urologist. Won't see them again until secondary treatment is warranted. I check PSA regularly through PCP. He does annual DRE also. See Urologist once a year for another DRE, update his charts and have another opportunity to say thank you.

Wilderness -

Hi Redwing.

As you can see from my signature, my treatment was a combo Dart, Brachy and ADT. Dr Dattoli stressed the value of his follow ups and so I have seen him every 6 months with the likelihood that I will go annual beginning Feb 2017. My intent is to follow up annually with his office until I get tired of leaving Michigan mid winter to spend some time enjoying Florida

We met at GFMPH in 2014. What is your new home state?

Don

My current urologist identifies himself as a medical oncologist. He is also a davinci surgeon ( not mine). He has followed me for the past few years and gave me the referral to my radiation oncologist. I have no complaints with his decisions so far.

I am part of a medical HMO and if I want to be covered by insurance I must go to the plan's doctors. My urologist is one of only a few designated as medical oncologists.

If my current IMRT radiation is not successful, I will need to begin advanced treatment starting with HT. However unless I can afford a rockstar doctor ( I can't) I must remain in the system.

The way I read it is they are saying that if you have a consistent pattern of increase and it's getting close to nadir+2, you can start meeting with an RO for advanced imaging. I think it's important to rule out other causes of increasing PSA as well.

I think MOs have a tendency to overdiagnose and overtreat. It's the hammer/nail POV problem. They are used to dealing with more advanced cases and tend to see things that way. For example, I've seen MOs who prescribe bone scans for low risk patients, and who give them second-line or triple ADT for adjuvant therapy with radiation.

It is only the ROs who have the experience with salvage radiation after primary radiation. That's what you want to tap into.

- Allen

Hi Redwing:

As you know, I am fellow Michigander.

Dr. Lam is my QB.

It is worth going to Marine del Rey. I see him about once a year and also do a few phone consultations a year.

Mel

As a G9, I feel more comfortable having an MO manage my current PCa remission.

Since I am in FL and he in Marina del Rey CA, we manage it with periodic PSA tests and phone consults not covered by insurance @ $100 every 4-6 months.

I did maintain a relationship with my other MO at Univ of FL & Shands but he is now seeing me more for my melanoma than for PCa. It too is in remission.

I agree a local urologist could administer PSA exams if results continue to be <0.01, but then when it eventually exceeds our pre-determined bogey of >=1.0, I would have to re-establish a relationship with my MO.

The RO did his job, and I have had no adverse SE since the SBRT in Oct 2014. I was kind of surprised this excellent progress has not been tracked but I was treated outside his clinical trial. A few months ago I sent him a note indicated all is still well, but that was merely acknowledged, no regular feedback requested.

Redwing,

My MO does the blood work every visit. He has a lab right in the office. They then send results to the RO.
So MO is the main.

Good to talk to you.

I live about 75 miles out in Iowa.

Carl

My urologist is my main follow up and I see him quarterly and have a PSA test. At some point we will go longer between meetings but he keeps a short leash on his high risk patients. I now see my RO annually and it is up to me whether I continue. He gains more from the meeting than I do as he can continue to directly document long term results. I like him and the staff and also do some volunteer work with them helping new patients from my experience. I did check in with a medical oncologist (my wife's mo), but sadly he passed away last December. My wife's new mo is exclusively breast cancer. My urologist has a partner that is a urologic oncologist and if I need to, I would see him. Although, I have often said if I face a recurrence, I would consult with Oliver Sartor at Tulane.

Thanks, Tall one; I really appreciate your involvement in these discussions and the links you share. That's pretty interesting. I see the scans were after nadir+2 recurrence definition, which may be the most useful aspect of this item.

The Paris study is a relatively small group, with no information about their selection for "high risk" cases. The 51% local recurrence group is undefined as to risk category. Kind of fuzzy for me, as those could have been all low and intermediate types. Still I get the point that there was a lot of local recurrence in that broadly defined group.

The abstract for the much larger Zumsteg study, also referenced, did not define the high risk group either. In most studies, that is normally a rather heterogeneous group (e.g. "any T3/T4, or PSA>20, or G>7"). I know that my G9, dominant type 5, case is not the same animal as a G7 with a 20 PSA for example, though they get lumped together in these studies. Do you by any chance have access to the actual study? I'd sure like to see the details of the study cohort, an item usually left out of the abstracts.

That study used very old radiation techniques by today's standards (cases treated between 1991 and 2008, antediluvian by today's methods), so the effectiveness of even a dose-escalated treatment would be questionable vs that applied today. Local recurrence in the treated area seems like it would be strongly correlated with the quality of the applied treatment field.

The math gets a bit narrow too. By radiation dose in my category, 79.2 Gy, there were 14.6% with recurrence (undefined as to risk group). Further, assume that dose applies to the "high risk" types, for which 45% of recurrence was local. So, 45% of 14.6% is 6.6%. The devil's always in the details, but assuming the percentages are not somehow interacting badly, there's over a 93% likelihood that recurrence for a case like mine (79.2 Gy and "high risk") is not local. This seems to yield rather the opposite conclusion. (I'm sorry, I'm not trying to be difficult. It's just that the details always intrigue me and they're so hard to get.)

[Edit: Maybe I should have just grouped all the radiation types together. Rethinking the utility of this, multiplying those factors actually calculates the overall risk of a local recurrence. That's a different question than to say if a recurrence happens, where is it? So ok, let's just say a recurrence has happened. Then the full 45% local for high risk kicks in no matter what. Different question, and probably more in line with the intent of the link that was shared. So, ok, I see that....]

In my case we irradiated the pelvic lymph nodes since the nomograms suggested as high as a 40% chance of undetectable involvement at the time. So it seems a localized lymph node recurrence is indeed very small, in line with the study indicates. That's cool.

If there is an identifiable, local only recurrence, would they actually radiate with SBRT or focal brachy in tissue already treated to 79.2 Gy? Salvage radiation after primary radiation is a new one one me; that's been off the table in most anything I've seen. If it's in bone, then radiation makes sense of course.

Surgery, cryo, and HIFU all are mentioned as possible local treatments, but I'd have to do a lot of study before considering them even in the event of a local recurrence. I'd have to be totally convinced that not only did I only have a local recurrence, but that no other recurrence was ever likely before I'd take on the risks of those treatments. They're scary in a post-RT setting.

This does all seem to support my RO's contention that in Vanderbilt's experience a recurrence for a case like mine is very rarely local.

By the way, as long as I'm on this, how do the authors draw their first conclusion:1) The prostate is the most common initial site of recurrence in patients in all risk groups with an increasing absolute incidence that correlates with increasing NCCN risk group., when the data summary says the opposite? Is it a blurring between "absolute incidence" and the percentages?

Their bullet list summary says just the opposite. Local recurrence decreases with risk category, not increases?:
Local recurrence in 55%
o 74% in low-risk recurrent patients
o 68% in intermediate-risk recurrent patients
o 45% in high-risk recurrent patients

I'm probably missing something obvious there. But as I'm really a "very high risk" case, it's likely to be even lower than the 45% shown, by that trend.

Thanks again, Allen. Thanks for all the effort to respond so thoroughly.

I may still quibble on a few of the points, but I do see what you're saying. It's too tedious to argue and clarify some of these things, and I get the overall consideration that there may actually be merit to looking for local recurrence. I won't just dismiss the possibility, so that's quite helpful (and hopeful?).

Halbert - my GP said he'd be happy to track my PSA vs. going repeatedly to oncology. If something develops, then see the specialist. But I'm pretty sure your new PCP would happily write a scrip for your PSA checks.

Once I get past this kerfuffle with my new MO, that's what I plan to do too. If my PSA doesn't change, hovering at some low-ish value, there's no point to paying the higher "specialist" office charge for my MO