Are scans or imaging not helpful for those with recurrent or advanced pca ?

Since my pca recurrence, I have not seen a medical oncologist until recently.
Thus I don't have any direct experience about how they work with patients in certain
ways. I had IMRT as initial treatment 6 years ago and no treatments or
medications since then. I am 70, G7(4+3) in multiple cores. PSA now 4.5.


Based on this recent interaction with a possible new oncologist, I am
concerned that my assumptions related to how doctors would or should work with recurrent pca patients in certain ways might be
incorrect, based on what I'm hearing from this particular doctor -

and thus wanted to ask for your feedback on how your
doctors or doctors of people you know, handle certain things related to a
recurrent patient, so I can get a more realistic and reasonable view.


0. I saw the doctor because my psa is now over twice as high as the
phoenix recurrence value related to IMRT of "2.0 + nadir"
(nadir was 0.1). Its my own fault for waiting so long to see a dr and I know it should have happened at time of recurrence psa value.

1. The doctor is at an academic institution and is quite experienced in GU
oncology.

2. I asked if they felt it was time (or past time), for me to have baseline
scans, since my assumption from reading articles and postings was that scans
are often done and are important, to help doctors as part of making treatment decisions.

However, this doctor told me they do not believe in giving scans to recurrent patients,
since they have seen no evidence that the data from the scans that might guide treatment decisions has any impact on how long the patient would live, and so they use
data other than scans to guide treatment.

And they mentioned that since the costs of the scans are very high, that doing
them anyway, even if the actions on data from scan results would not result in
life being extended, that having them would be a poor use of healthcare
dollars.

They also mentioned, in context of them not feeling scans were helpful, that
they are particularly not fond of newer scans, and have
said they have seen scans come and go. (I had mentioned that there was the new
Axumin scan now in my area) - but again, their overall statement applied to
all scans.

I assumed and thought that scans are important to both drs and patients
and am now confused and concerned about their statements ?

That is, perhaps their view is really common or that like many other things, their view is
on a continuum or bell curve of how doctors view scans for recurrent pca
patients. And I believe that if I have assumptions that are unreal and unreasonable,
I need to let them go. And if pca can be (or should be) treated as well without scans as with them, then I need to understand that too.

By the way, they did NOT mention, as reasons for not wanting to order scans, that some scans are not sensitive at lower psa levels or about the possibility of false negatives or
false positives. (and they knew my psa was over twice as high as recurrent value)


3. In asking the dr for what treatment they would recommend and how to proceed,
(knowing at this point that scans were out of the picture),
they mentioned medication-wise only about trials they are doing at their academic institution that involved a combination of ADT and some other medications.

They did NOT mention the standard of care if one did not want to or could not be in a trial
- I had to ask specifically about what the standard of care recommendation
would be. They became very quiet and then said in a low voice - "ADT"

I assumed and thought that doctors would or should mention the standard of care in addition to information about trials ? I do realize trials are important and that is a
large part of what is done at academic centers. And I do understand that drs will mention about trials in their patient visits.


4. I realize that it could be said that I should just find another doctor if
I'm not comfortable with their answers or if their answer about not giving
scans is not common at all or if I learn that not having scans would be not helpful for
the patient -
but its not that easy for me to do that without a lot of thought because:

a. I am not able to leave my own area to visit other drs or to get scans elsewhere.

b. There are just a few medical oncology practices in my area, and at all of them,
one cannot change doctors within that practice; if one was not satisfied with
a doctor at a given practice (including the institution I went to described
above), one would instead need to leave that institution completely.

And although I would hope that the need to change doctors would not be a common
occurance, it could happen, and thus I feel that I need to limit changing to other practices now since later on I might need to go to one of the other practices for other reasons.


thus I feel I need to be careful in how I evaluate and judge a doctor, and not let
any unrealistic assumptions affect my decisions to use that doctor or not.

I just don't know how common his responses are in the overall range/bell curve
of possible responses related to letting patients have scans or about should
drs mention the standard of care in addition to trials - but knowing
your experiences and thoughts on these topics could help me in decisions on how to proceed.

I'm just another patient with high risk PCa. But I'm surprised that (a) you let PSA rise to 4.5 without taking action (b) you sought the advice of a MO so soon and (c) you're limited to the local physicians for advice/treatment.
Not getting one of the new scans makes no sense to me and having a doctor tell you it's a waste of society's money is pathetic.
It's your life and you should do whatever you can do and want to do to live as long a life as possible.
Personally, I had scans in 2015 which found lymph node mets which I had treated and are cancer free and I believe has extended my life. The latest scan was a ctpet with axumin which discovered a single bone met which I treated with SBRT.
I intend to keep scanning and treating until it's futile.
Bob

"In asking the dr for what treatment they would recommend and how to proceed,
(knowing at this point that scans were out of the picture),
they mentioned medication-wise only about trials they are doing at their academic institution that involved a combination of ADT and some other medications."

Interesting. If you look up the details of these Clinical Trials, you might find some very specific information about how the clinical trial patients will be tracked and evaluated, ... including the types of scans that will be used to establish a baseline, and the frequency of those scans, thereafter.

If you want to find them yourself, try the institution's website, or do some searching at:
https://clinicaltrials.gov/

Charles

Redwing-

Your calculations are incorrect. In the Mayo study, 46% of those who were PET-positive had cancer only in the prostate and seminal vesicles. In the MSKCC study, it was 55%. In addition, there were 16% and 8%, respectively, who had potentially curable recurrences in the pelvic lymph nodes only.

The patient can decide for himself whether he wants to go through what it might take to cure him. As you know, your prostate was not as nearly "well cooked" as some others on this site, and recurrence-free survival is significantly better with higher doses. The side effects of salvage after radiation depend on the treatment - focal salvage treatments have a better side effect profile.

deleted comment in reaction to what Redwing deleted

RobLee said...

Redwing57 said...
I'm a little confused by the numbers...

The site-of-recurrence study says 39 out of 85 had local recurrence after primary radiotherapy. That's actually 35%, not half...

Beg pardon, perhaps it is a typo or I just missed something entirely, but my calculator shows that 39 out of 85 is more like 45%, not 35... which is indeed closer to half rather than one third.

Yeah, my bad. It's 35 out of 89, sorry. 35/89=0.3932584, or about 39%. (the 51% there is of those whose location of recurrence could be identified. Actually all 89 recurred. It's just some subtlety in statistics, methods like that are used to make a case look stronger one way or another. Commonly seen in many studies. The devil's in the details, and details don't make headlines or win grants.) Anyway, it doesn't matter. It's all dismissed anyway. Carry on.

https://pcnrv.blogspot.com/2016/08/site-of-recurrence-after-primary.html said...
Hannequin et al. posted the results of their study (abstract 23) at last week’s Genitourinary Conference. The authors retrospectively looked at 89 patients treated in Paris, France between 2010 and 2014 with either brachytherapy (23 patients) or EBRT (66 patients) and who had a biochemical recurrence detected as a rising PSA of at least 2.0 ng/ml over its lowest level. The patients were classified at diagnosis as favorable risk (28%), intermediate risk (39%) or unfavorable risk (33%). They all had an 18-FCH-PET scan and may have had a multiparametric MRI as well. In 20 patients (22.5%), no target lesion could be clinically identified. Among the 69 patients in whom a clinically detected recurrence was identified, the recurrence site was as follows:
· Local recurrence in 35 patients (51%)
· Lymph node recurrence in 22 patients (32%)
· Distant metastases in 12 patients (17%)

Post Edited (Redwing57) : 6/16/2017 1:22:00 PM (GMT-6)

Redwing - some comments to your reply
[Edit: Deleted poorly received and ultimately fruitless post. Never mind. Carry on. Be aware, as with anything posted by the group of well-intentioned amateurs on this site, caveat emptor.]

I'm unclear if these are just comments about your own reply that you
deleted, or relates to my original post in this thread.

And am confused about comment about well intentioned amateurs ?
I do realize that people who post here are not doctors as a rule, but certainly
to me hearing feedback from patients can be valuable - of course one needs
to keep in mind that responses will vary and one needs to do ones own
research as well - but I find this forum very helpful and supportive.

After all, don't doctors and studies often disagree in many ways as well ?
Thats also a challenge for the patient or for practicing doctors out there.

Redwing-

While in the Hannequin study, 89 men had a biochemical recurrence (nadir +2), it was a clinical recurrence in only 69 of them. You are incorrect when you state "Actually all 89 recurred." I assumed most people reading that would understand the difference, but apparently it bears explanation: A biochemical recurrence means that PSA has reached a trigger point that is suspicious for an actual, that is, clinical recurrence. Biochemical recurrences after radiation are often greater than the actual clinical recurrence. Because radiation-treated men still have a prostate, PSA can go up for reasons other than prostate cancer, usually prostatitis. When they investigated with a choline PET scan, they found that 69 men had a clinical recurrence. Of the 69 men, 35 men, or 51% had a local recurrence.

As you can now appreciative, there was no deception and there is nothing misleading about the way it was reported. This was reported exactly as it should be.

tomhw,
I also faced some of the same decisions as you but my MO went along with my wish to have one of the latest PSMA scans at the National Instatutes of Health, in fact he helped by contacting one of his friends there to get things started. The scan showed one hot pelvic lymph node. I had it treated with SBRT and my PSA is dropping drastically. Will I live any longer? Who can say for sure?
You must be your own advocate all the way through this journey since there are several possible courses of action at each stage of this disease. Even the best MO will not list all the possible treatments at each fork in the road as that would only confuse most of us greatly. There are very few Tall Allens here that seem to grasp the many in's and out's of prostate cancer.
You are making your own decisions here and that is good. We have to place our trust where it belongs and sometimes a doctor proves he or she is not deserving. (I personally learned this the hard way)
Wishing you the best.
Woody

tomhw-

Where are you located?

tomhw-

Where are you located?

The only reason to start with casodex is to prevent a temporary testosterone flare that might make bone mets more painful. Since you don't have bone mets, it's not an issue. Some start with Firmagon and transition to Lupron for much the same reason.