FRustration Rampant... no response re... - Advanced Prostate...

Advanced Prostate Cancer

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FRustration Rampant... no response re: CT Abd/pelvis & NM bone scan.

depotdoug profile image
15 Replies

> CT Abd/pelvis & bone scan request.

? Will my 1st CT ABD/Pelvis & NM bone scan since Advanced Cancer pelvic abdomen Lymph nodes be beneficial? Yes or No? Or unnecessary at this point?

Phone msg to my MO RN 7 days ago. No response!

> Electronic message my MO & his RN last Thursday same request. No response!

> called Monday staff relayed msg. No response.

Am I being too, way too persistent of a Cancer Patient?

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depotdoug profile image
depotdoug
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15 Replies
Tall_Allen profile image
Tall_Allen

I've found that online messaging is more likely to get a response than phone calls. Most major hospitals have email messaging set up. At your next meeting with your MO, ask him how he prefers communication.

depotdoug profile image
depotdoug in reply toTall_Allen

I’ve done that Tall_Allen, already active. I’ve used it with my 3 IU Health urologists, now my Med ONC since Aug. The IU Health msg directing Triage I.e. Oncology or Urology responds with. “Thank you for your message. It has been successfully sent to the appropriate care team.” And then usually the words “Reviewed” appears.

What else can I do? Asking for a Yes or No, not yet answer..

Doug

Tall_Allen profile image
Tall_Allen in reply todepotdoug

Talk about communication at your next appointment.

depotdoug profile image
depotdoug in reply toTall_Allen

Tall_Allen, Yes I do have an appointment Dec10th with my MO in Indianapolis.

Its for new PSA Testosterone and CBC and complete blood labs. Mainly it's for my 2nd Lupron Depot injection mid AM 12/10.

My concern is: 1] Why can I not have a CT scan of my abdomen/pelvis and NM total body bone scan to check progression of my "now advanced cancer" Pelvic Lymph nodes and upper abdomen Lymph nodes? Why can I not do these scans 12/9- 12/10-12/11?

I am just asking for a Yes or No. Or I'm not at that progression point yet. Too early.

Is this asking too much?

Doug

Tall_Allen profile image
Tall_Allen in reply todepotdoug

Whether you get scans done on Dec 10 or a few weeks later won't make one bit of difference. What is your rush to get that imaging done?

depotdoug profile image
depotdoug in reply toTall_Allen

1st response is the best right.

Tall_Allen,

Reasoning #1. I’m anxious avid about tracking my pelvic/abdomen lymph node cancer progression or regression. But I’m not a Med Oncologist.

Reasoning #2. I’m only 57 days post 1st Lupron inject. So there should be positive progress or regression. Same response I’m not an MO.

It may be snowing, sleeting, severe winter weather 12/09-12/10 too. Not conducive driving FW to Indianapolis.

I can’t control that meteorological environment either.

Fact: my next 68Ga-PSMA-11 PET/CT will be late Feb early March 2020.

I will adhere to your advice, though, express my Med Test/ progress communications Dec10th.

It’s best I let my engineering technical analytical mind rest.

Thxs.

Doug

AlanMeyer profile image
AlanMeyer in reply todepotdoug

Doug,

If you have no appointment scheduled in the immediate future, you might call and politely say that you need to talk to someone about about the tests that were done. Tell them that it's been over a week since you've inquired and since then you've emailed and called again and never gotten any response. Tell them that you want copies of the test results emailed to you and say that if you don't get the test results or any response in the next (whatever time period seems appropriate to you) you're going to call again, and again and that you don't like wasting your time and their time, but you do need a response. If that isn't working then it seems to me that you are justified in sharpening your attitude.

Asking for the test results is valuable for several reasons. It can give you more information than a simple voice report, it can give you data that can be conveyed to other doctors, and it gives you the full results, not just the "Everything was clear" evasion that sometimes gets relayed back.

Best of luck.

depotdoug profile image
depotdoug in reply toAlanMeyer

AlanMeyer, Yes I do have an appointment Dec10th with my MO in Indianapolis.

Its for new PSA Testosterone and CBC and complete blood labs. Mainly it's for my 2nd Lupron Depot injection mid AM 12/10.

My concern is: 1] Why can I not have a CT scan of my abdomen/pelvis and NM total body bone scan to check progression of my "now advanced cancer" Pelvic Lymph nodes and upper abdomen Lymph nodes? Why can I not do these scans 12/9- 12/10-12/11?

I am just asking for a Yes or No. Or I'm not at that progression point yet. Too early.

Is this asking too much?

Doug

j-o-h-n profile image
j-o-h-n in reply todepotdoug

No, you're not asking too much... I would call the Head of that medical facility and read the riot act to him/her. If you're paying out of pocket for your "treatment" then you should tell them if the don't respond sooner to your requests that you'll find holes in your pockets. It pisses me off when a medical facility treats their patients they way they're treating you. GIVE THEM HELL!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/07/2019 11:09 PM EST

depotdoug profile image
depotdoug in reply toj-o-h-n

Control of medical folks(staff, RN’s, Med assistant, lab techs, doctors) that’s impossible, I think.

Is my reasoning correct that those guys are way to busy, overloaded?

Well Friday is almost here, 36 min to go. I should call my MO’s RN Friday @07:45 and maybe wake her up as her 1st persistent patient impatiently tired of going into anxiety attack mode. I function best after I exercise profusely when my endorphins are maximum level stage 10. Maybe I jog over to my local hospital and back home then call my MO RN, huh what do you think?

j-o-h-n profile image
j-o-h-n in reply todepotdoug

Not a bad Idea..... When I used to jog and my endorphins kicked in, I was a mean mf machine.... Hope things worked out for you this morning...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/08/2019 5:27 PM EST

depotdoug profile image
depotdoug in reply toj-o-h-n

J-o-h-n: The news is not in. I sent a 2 bullet point message this AM(9:20). No no phone call I just messaged. Darn it. Just looked at my 'sent' message "thank you for your message. It has been successfully sent to the appropriate care team."

That means it went to a care team.

No phone call, no message response.

I just need to take the ATTITUDE position that "no news is good news".

60 hours till Monday AM. I've got no reason to be frustrated but frustrated I am.

Monday I've scheduled an attitude change: Calling the Oncology head RN whoever that is.

Time for some extra strength exercising stress relieving attitude adjustments.

Doug E.E.C. aka excessive exercising compulsion doug

j-o-h-n profile image
j-o-h-n in reply todepotdoug

Reminder: Monday is Veterans day.... True No news is good news... Keep working out and forget about everything except sweating.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/08/2019 7:36 PM EST

depotdoug profile image
depotdoug in reply toj-o-h-n

Well I’m not, definitely not gonna do Richard Simmons exercising. Sweating to the oldies.

youtu.be/yE1s3s0E4wo

j-o-h-n profile image
j-o-h-n in reply todepotdoug

youtube.com/watch?v=deKHYCs...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/08/2019 7:54 PM EST

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