Use of local oncologists (non pca experts) has an impact on quality of treatment?

For those people like myself, who are not able to go to the places
where the pca experts are - and thus must use community oncologists -
can that mean that we will not get the best advice as to treatment
and sequencing and so on, in context of recurrent and advanced pca treatment ?

and that this in itself can have an impact on our lives ?
(in that we might not be offered the best or most appropriate treatments,
esp sequencing of treatments re advanced pca)

And have found that even if one is able to go one time to a pca expert -
that not all of these experts are willing to communicate ongoing with
one's local oncologist. And of course one can't know in advance what the
pca expert (or their institution/practice) policy is on that.

Since if not, it would mean going to these experts is just a one time
visit with their advice based just on the facts as they are that moment, which might not be the same
that day as they could be a month later.
(I have had this experience seeing pca experts at a well known place)


Or is it that with things like nccn and other guidelines and protocols,
that even community oncologists have data to advise on the best treatment
and sequencing ?

I wonder about this since nccn is more of a summary with lots of possibilities
but without the real complexity related to sequencing and so on of treatments.

Am not able to go to other places due to needing to be a caregiver for spouse
and not set up or can afford, people to come in to care for her
and no friends or relatives around either.


I realize I may not like the answers I might hear to this question,
and maybe its obvious that seeing an expert is better, but would
hope in my heart that seeing local oncologist would not have such
a negative impact on my treatment as I am imagining. (compared with seeing
pca expert)

(added a subject for you, but it can't be as long as you wanted - 142)

Post Edited By Moderator (142) : 4/8/2018 4:22:49 PM (GMT-6)

You can edit your original post and add a title. Use the edit icon in the upper right corner of that original post.


You probably know there is no firm yes or no answer to your question. All oncologists have access to the NCCN guidelines (so do you!), and many people get excellent care from community practitioners. What you can get at the larger comprehensive cancer centers compared to community practices is a higher degree of (and more narrow) specialization. For what one might refer to as a "standard" case, this specialization—having "seen it all"—probably doesn't necessarily bring much benefit to patients...but in the small-ish number of unique cases, the big centers are often what the community practices will refer patients to.

I think community MO are fine as long as you do your research and advocate for yourself. Last summer, husband's MO hadn't heard about the new Zytiga protocol that had just been announced. He said that it was just rumors and that there was no proof. The next evening he called the house to apologize. He said the afternoon after our visit, a video meeting was held with all the offices in Tennessee with an update on the Zytiga protocol that was just waiting for FDA approval.

What we established (if he remembers) is that we do our homework and hopefully the next time we suggest a new protocol he'll be quicker to be open to it rather than dismiss it out of hand. It also gave us more trust in the doctor that he can be flexible with treatment options but as he's not a PCa expert, we're going to have to stay on top of things ourselves.

To all,

Thanks for your replies, and they are giving me a good perspective on this.

Advocating for oneself, and staying on top of pca developments,
since community MO might not be aware - good points,

and I guess it depends on that drs openness to hear these things,
as Union98 ran into a dr who at first did not.

Don't want to sound like a broken record as per my comments in other posts
on my situation, but advocating for myself is not working out with the drs here,
in context of being allowed to take labs to track some adt side effects that might
be measured by labs -- none of the MO practices here allow patients to do those labs
and some do not like to order imaging, and realize thats one disadvantage of not being
able to go somewhere else. The pcp does not understand why they wont since they
are prescribing it, but the MOs in all practices just don't recognize ADT side effects thus
in that context to them - why order labs ?

So I'm left to beg pcp for some labs once in a while.

Skypilot,thanks for your questions - a bit on my situation

3 yrs ago psa started going up from 0.2, after imrt in 2011 was down to 0.1 for a long time.
got to 2.0 in 2016 and then 4.3 in 2017, then lupron started about 9 mos ago.

Axumin scan was in 2017, the number of places doing it has grown a lot.

Found and reconfirmed by 2 re-reads, that it had spread to pelvic lymph nodes
and nodes higher up - in the para-aortic region

Now just hoping I have some time on adt, or perhaps should do the adt+zytiga - not excited about the prednisone

nor about the bone rx -- but realize my head is in the sand and am not accepting the severity
of what is happening.

Again, thanks to all for their replies.

Thnx Tomhw for the update, It sounds like you have done a pretty good job of being an advocate for yourself dealing with your cancer and then on top of that being a caregiver for your wife my hat is off to you Sir! As you know there are lots of guys on the forum here that have lived with advanced metastasized diagnosis for many years maybe some of them will weigh in with their experiences and some of the knowledgeable guys will have some suggestions for you.

Larry