crappy response from Umich

I heard that the GA-68 PSMA scan might be available at Umich.
I inquired and got this answer from my doctor:

>>>>>>>>>>>>>>>>>>>>>
I have been out of the office this week, thus my delay in replying. I have no specific knowledge of this scan being performed at UM. If it is being done, it is on a research protocol and the results would not be available to us to guide patient care.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Not too helpful. Apparently, he has no idea and if this is being done (you'd think he could find out), the results would not be available to him? If this just a quick brush off?

Any suggestions on how to proceed?

I am scheduled to do the C11 Scan at Mayo on 10/6-7, but this would be much simpler!

Mel

I think that the idea of you doing a little leg-work, rather than thinking/assuming your doctor is going to do it for you, is a good idea.

Contact Linda Brandt

Post Edited (JackH) : 9/9/2016 10:57:10 AM (GMT-6)

compiler - I'm a bit frustrated by the poor communication at U of M myself. The doctors must be swamped with their case load, since I never hear back from one. There's a message system, but the only call I ever get is from the office's nurse. In my recent kerfuffle, I sent a brief "message" to my doc in their system, and she confirmed that the doc saw it, but had no other response. Very disappointing. I had stated a brief background to be sure we were clear on my situation, and asked two specific questions. No response.

In contrast, unbelievably, I was discussing my small PSA rise with a friend. She's a go-getter, and actually sent an email inquiry to Dr. Mack Roach about it. He answered her email *the same day*, with three applicable bullet points and attached 3 specific studies in full that covered the questions she (I) had. Same day, and we've never had any prior contact, let alone being a patient. That's the kind of communication I'd like to have with my own doctor!

I am all having issues with U of Mich. Sent multiple emails and phone messages asking what they know about Ductal Prostate cancer. The only response has been a very genetic email outlining their prostate cancer team. about ready to give up on them.

I am all having issues with U of Mich. Sent multiple emails and phone messages asking what they know about Ductal Prostate cancer. The only response has been a very genetic email outlining their prostate cancer team. about ready to give up on them.

Agreed

I have often said that there are times when this forum should be called "Grumpy old men in diapers"

Having said that, we must all realize and try to understand that "Cancer", be it slow growing or aggressive, is a source of frustration and concern.

Healingwell has always been a safe place to vent our frustrations. To paraphrase a movie quote from Jack Nicholson "My emotional state is my emotional state. You approval is not required.

Todd1963 said...
I have often said that there are times when this forum should be called "Grumpy old men in diapers"

Having said that, we must all realize and try to understand that "Cancer", be it slow growing or aggressive, is a source of frustration and concern.

Healingwell has always been a safe place to vent our frustrations. To paraphrase a movie quote from Jack Nicholson "My emotional state is my emotional state. You approval is not required.

Amen, brother. If we can't vent here, where can we?

Here's an update, and it continues CRAPPY.
I emailed about 5 researchers last Friday.
I got no answer.

So, today I start calling. The first 3, no answer, so I left messages.
The 4th: the person answered. She was very nice and said she would find out and get back to me very soon.

Well...I'm still waiting.
Good grief!

I will keep trying this week.

Unless they are doing them and can get me in quickly, I will keep my Mayo appointment (10/6-7 for MRI, blood work, and C11 scan). I am annoyed as this has delayed flight arrangements, etc.
I will do that this weekend, barring a pleasant surprise from Umich.

Mel

mel,

I do understand the frustration part of your OP, having spent long years fighting for appointments, follow through, results, set-backs, some crappy doctors, etc.

But at the end of the day, my pragmatic ways tell me, that my problems really aren't their problems. I am finding that with the supposed doctor and specialist shortages going on as the result of all of us baby boomers hitting the "market", that many doctors are so overloaded with patients.

I only found out today, after months, that's why my doctor left Gibbs. When I first met him, he was in his own practice, and was a wonderful caring doctor. Most of my visits were well over an hour one on one. After he sold out his practice and became part of a large cancer center (least large in my area), I noticed the change in him within a couple of visits.

Towards the end, I was lucky if he stuck his head in the room and gave me 2-3 minutes of his time. I started taking it personal at first, but his NP and his nurses assured me that it wasn't me. Was told his patient load was above 400 when he left, when it use to be less than 100.

I may think I am important, but in the real world, I am just another smuck with PC, not really all that special.

On the other hand, the squeaky wheel usually, not always, gets the grease, so keep annoying them with your calls. They may give you what you want to know just to get you to go away

You mean at one of those "Center Of Excellence Bottom Line Profit Makers"? Not liking this trend of more and more private practices getting sucked up by the big boys, then even bigger boys buy those up, and so on. In my experience, patient quality continues to spiral downhill when that happens.

It's sad when make shareholder's happy is more important than what's in a patient's best interest.

I have been watching this thread with interest. I called to get an appointment with the u of m high risk prostate cancer clinic as a part of my search for newly diagnosed treatment options search. The scheduler took all of my info and said someone would get back with me regarding an appointment time within a few days. It is going on two weeks and nothing back yet. Sounds like they may be getting swamped with interest?

This is also interesting to me. DH had his Davinci at U-Mich in 2009. When Dr. Wood left, Dr. Palapattu took some of his patients, and we met with him for a followup. When his PSA started creeping up last month 7 years post-op, I not only was able to get an appointment with Dr. Palapattu, he ordered a PSA (and sent it in the mail,) and they put us in the special clinic program where the RO also goes to the appointment (back to back). They do it every Thursday. Called for the appointment on Sept 3 or so, scheduled for next Thursday the 22nd.

We are also 2 hours away, so having back to back appointments are great. We'll have our scans done here locally and bring them with us. I'll ask them about the GA-68 scan and report next week so at least you will have an accurate update and maybe even a coordinator's name.

Picc