We live in Atlanta have a mo at emory, put primary mo is at mdandersen. He and his team ignore our posts to them on the portal for days. Some they ignore. When they may finally answer, it is like they didn’t read out question
Do the rest of you have these communication issues with your mo. For us, it adds a lot of stress.
I have had some doctors that have been good at getting back to me, some that were bad, and at least one that was terrible. The terrible one had performed a knee operation on me that went bad and he ignored my calls for two weeks. I then called his office, spoke to his receptionist, and told her in a very angry voice to tell the doctor that "he better damned well get back to me ASAP". I didn't make any specific threats because I hadn't decided what I would do yet, but I was going to do something, maybe start by reporting him to my insurance company that was sending a lot of work to him. He called back within an hour, spoke ingratiatingly to me, and made an appointment for me ahead of the line.
M.D. Anderson is a world famous cancer center. Their people are among the best. But if they aren't helping, it's probably time to switch to Emory, which is also a highly regarded cancer center. That will be much better anyway from the point of view of being able to see doctors and have tests done.
Best of luck.
Alan
MD Anderson is so crowded with patients now. I don’t know how the doctors can manage so many people, and it does show in wait times and responsiveness. I too struggle with getting quick answers but you have to be persistent. We all want our doctors to be responsive but they are human too, even if they think otherwise.🤓
I shall find out Tuesday tomorrow at my newest Med Oncologist evaluate/treatment plan decision crunch time. I live in Ft. Wayne, my MO is in Indianapolis, IN. THat's only a fast 95 min drive. Sure glad they respond to my messages and phone call. Long distance Med/Onc help we shall see.
I went through a horrible time trying to get the Shingrix vaccine for Shingles...anyone who had Chickenpox as a kid should look at getting this vaccine since most of us are on meds that suppress our immune system...The PCP wouldn't do it till he got a letter from my MO...The MO said that he should know to give the vaccine...back and forth....finally, the MO sent the letter and the Pharmacy had to call the PCP to get the Rx...Ridiculous...I agree with the MO--the PCP should know about vaccinations...too lazy to "google it" and find out this is something I should have to reduce my risk. I have to do the PCP's job....Tiresome...
See......you are not the only one....the system is broken...
Best of luck....
Don Pescado
Watch out for the shingles shot. It's a live vaccine. My wife asked if it was ok for her to get it. The doctor said to wait because at the time I was on zytiga. She should not have it so she would not pass it to me with a compromised immune system.
You confuse Shingrix with Zostavax--a live vaccine--see below:
cancertodaymag.org/Pages/ca...
From this article:
“Shingrix is totally safe for cancer patients and we recommend it,” says Monika Shah, an infectious disease specialist at Memorial Sloan Kettering Cancer Center in New York City. However, she adds that investigators don’t know if it will protect cancer patients from shingles as effectively as patients without cancer.
and another article--
healio.com/hematology-oncol...
My MO wrote the letter..the PCP got off his rear, wrote the Rx and faxed it....the Pharmacy will give it later this week...
If you had Chickenpox, it is worth serious consideration...No one with APC needs "Inflammation"--one of the 4 Horsemen of APC....
All the best....
Don Pescado
Good to know, thanks.
Hi Fish,
Interesting bit you mentioned there about the FOUR HORSEMEN of APC. Inflammation is one, which are the others ?? Any link to share. Thanks much.
Cheers, Fish.
No links...these 4 things seem to drive APC... Inflammation, Cholesterol, Glycolysis, and Hormones.... I call them the 4 Horsemen of the APC Apocalypse....
Don Pescado
Thanks, Fish.
Cholesterol overall or just triglycerides ??
More LDL...thus Statins and the new drug--bempedoic acid....
Don Pescado
Thanks, Fish. I'll check this out. Cheers !!
Since you ask me so many questions, why are you interested in what I think anyway??
Don Pescado
OK, I won't you ask you any more questions.
I didn't think I asked you that many questions, but if that's the way you feel, absolutely no more questions for you, from NOW ON.
Great...don't read my responses either....why waste your time..??
Don Pescado
1) As regards reading or not reading your responses to others on this board are concerned, that's a call I will make. I will decide what is a waste of my time or not.
2) For sure though, not a single question will be put to you from me, from NOW ON.
Ask me anything you want whatsinaname. Unfortunately, I know nuthing. Cheers!
it's OK...I am like Jon Snow in GOT.... I know nothing, too...Stopped posting...I may stop replying also.. I doubt anyone values what I put out anyway... Certainly, the science posts were greeted with apathy and the science is HUGE in my book... maybe it is time to be a lurker...
Take care,
Don Pescado
Children, Children! Others are watching! AND, I, for instance, keep a couple of lists that are of interest as we come nearer the first snowfall.
Yes, appreciated the coal last year in the stocking...
Don Pescado
Your posts and replies are hugely valued by me and almost everyone on this site. It is the science that will someday, if not defeat, at least control this crappy pca. You, and a few others bring that science to the site. We glean knowledge from the minds that can deal with the scientific complexities. We laugh at j-o-h-n's humor. Most of us are not scientists or comedians. We all have a part to play. You have played your part well sir. We would prefer you center stage, not a lurker in the shadows. And that's all I have to say about that.
I hate coming here... but not because of the arguments. Because of having this disease.
For the Fish: I read the articles in the links. I feel it's always good to have more knowledge.
j
Thanks, monte1111.
Children, Children! Others are watching! AND, I, for instance, keep a couple of lists that are of interest as we come nearer the first snowfall.
Put me on the good list. Please, please, please. Wait, there is no snowfall here. So no list? Well, I'll make my own list. And I am off to get a tri-tip to bbq this evening. Christmas in summer. Yes! Enjoy.
Tri tip....enjoy...BBQ I love...I do ribs with the wife at the favorite eatery....Ruttenbucks...good stuff....Thank you...Appreciate the comments....for now, I'll keep replying...tango65 is supplying science and pjoshea13....not interested in posting science anymore.... I guess George71 stopped doing science and puxi also... too bad...for me, the straw that broke the camel's back was the responses to a CAR-T breakthrough post that I did...it resulted in a FenBen and Vaxchora lovefest--see below:... at that time, I knew a huge science breakthrough had gone unnoticed by most, and been pooh poohed by one of the people I follow...Thus, no more science from me...
healthunlocked.com/advanced...
Thanks for making my day, monte1111...
Take care, brother
Fish
I think the pooh poohing was off handed and unintentional. Yes, the post went off into a wild tangent. But most of everyone's post's do. And I am really guilty when it comes to off subject love fests, as I do not have the knowledge that you and others have. All prophets have a cross to bear. You are bearing yours with grace and dignity and together, maybe, one day, we can all lift that cross. Until then, God bless. Monte
OK men here's an open statement to you all.
As I've posted elsewhere, decades ago, I am/was a Medical Technologist. So I'm kind of a geek.
I want to see all the references you run across. Whatever interests you. From the most respected journals to a blog post about a jungle plant that cures everything.
It's MY responsibility to believe it, use it, or laugh it off. I want to understand as much as possible about what's happening to me.
Keep the links coming. That is why I frequent this forum.
Well, and see what my mentor J-O-H-N 🤔 thinks about it all.
Ah, well. Not much snow here in South Texas where I am spending the off season... ever. Sometimes we have to just make do.
Already, my head is focused on the season. I got my first event booked last month, my first photographer's studio session last week and this morning I signed the contract for Bass Pro Shop.
Life is good! Unless, of course, the beard starts to fall out before then.
A contract with Bass Pro Shop! I am impressed! Stay away from chemo! You are right. Life is good! Enjoy.
You are absolutely correct and I am wrong...You have my sincere apologies.....Right now, I am going through some issues, but that is no excuse to behave poorly....I have always gotten along well with you and you have every right to read, ask questions, and do everything you can to advance your fight against this disease.
As a replier, I should expect questions and answer them accordingly... You have had a harder time of it than nearly anyone here with this disease...We should reach out and help each other and not ask why one has questions or is interested, but rather, supply answers in a positive manner...
I hope you can forgive my bad behavior...Wishing the best for you.... Please feel free to ask questions anytime...my own struggles with this disease and why I am here should not impact our interactions...
Don Pescado
Now, that is the Fish, I thought I knew 
Apology happily accepted, Fish.
Matter is closed. Will never be brought up by me again.
Thank you, Fish. It takes courage to do what you did.
Cheers and all the very best to you, Fish.
Thanks for accepting my apology....
Cheers to you....Hope things are going better......Keep fighting, brother....
Fish
You are a fantastic guy, Fish. I really mean it.
Things, as you know, are not going too well with me, but I will fight it out.
Cheers and all the very best to you, Fish.
And you are a fantastic guy....you always remain positive, and that is not easy with this disease...You have been through so much already...I try and see the glass half full always, but sometimes, it is a real struggle... how you do it is beyond me...Enjoy each day....Because that is all we really have....No guarantees....Take care....
Fish
Thank you very much, Fish.
I wish you the very best. ONLY the BEST.
Cheers !!
Hi, I'm guessing that it might just be the luck of the draw. When I had my 1st consult with my MSK MO, I asked him for his email and he was more than happy to provide it. He wants a CMP blood draw every 2 weeks. I asked him if I could email him the results(from another portal) and if he could provide a brief comment, sure. That was 5 months ago and every 2 weeks we exchange emails.
2 weeks ago he ordered a CBC w/ad and I noticed 6 "L"s. With a little research i figured anemia. Sent him an email SUNDAY 8/11, 1pm, thinking he would get back during the week.
SURPRISE! 4 hours later I got a response.
"Yes agree very slight anemia
and treatment is culprit
Not much we can do"
Great Doc (man of few words).
If you have a good rapport with your MO, ask him.
My MO and RO are very good about returning messages electronically. They read their posts at the start and end of each workday, so response times are quick. My PCP, on the other hand, let's his nursing staff read his posts, and they are terrible about responding. Most of the time they don't respond. When they do, it's usually along the lines of make an appointment. I think it's luck of the draw.
All of the portals I have are a joke. Appts are wrong , labs incomplete etc. Each think they have all records on me like the others don't exist. I now keep hard copies of all done to me in chronological order. Helps a lot.
I go to MDA and my experience with the portal messaging has been good. Someone on the team usually replies by the next day. Not every time, but usually. I've never (in 3 years) had a message/question ignored. That's terrible if your messages are ignored and if the answers you receive don't track to your questions.
Take Care, Monty
My experiences in Australia, involving Assoc Prof as a urologist and a Professor as RO has generally been that these professionals all deeply care about the professionalism of what they deliver in their individual fields of expertise. As a specialist lawyer I understand how they work. Ultimately they actually do not care deeply about their patients (although there are exceptions) as to care deeply, involves just too much daily hurt. So you experience poor email response and so on. That is their way(s) of coping.
The demands of a professional life, including massive time on the job and CPD, not to mention say a marriage/extra partner and children & mortgages & leases and holiday homes and tax problems and boats and you name it, the lifestyles that most highly paid specialist doctors would have other than their patient time, you can imagine where we all sit.
Unless you have a saint as an MO or URO or RO, you would be very lucky to even have them actually think about you as a real person and not just a file in their computer. As I have found, I have seen my (Professor and youngish late 40s for that recognition, well researched, deeply knowledgeable) RO for about 3 years now, told him I am a Superannuation Lawyer and he tells me most usually at every visit that I am an accountant or something aren't I? I tell him no and what I am and he says every time 'same difference'. This is a good man, highly skilled, who has delivered RADs to me and known me through loss of my wife of 34 years in 2017. I like him, but it is what it is. Superannuation Lawyers in Australia do not contact numbers at all, we deal with legislation, Trust law and Equity but not taxation really at all. Jobs are very dissimilar to accountants, as a really smart man, if he thought about it (cared), he would know and wouldn't ask again.
Our mo at mdanderson has a nurse practitioner who is generally good about responding to questions. However she was on leave and we did wait 5 days which fortunately we had already gone to the local dr without waiting. We have sometimes had difficulty getting information and because we are far away rescheduling is a problem for us. Eg what we were told would go with the docetaxal was not what he actually got and we were told to call our doctor if we weren’t sure if it was right. Not given information on what to watch out for with regard to chemo side effects etc. when we asked we were told “we normally have a booklet but we’re out.” I will say if you get chemo at mda get it done in the uro building because you will have a more comfortable space than if you do it at their chemo center. Mda May be world famous but not perfect.
We do feel the mo at mda is knowledgeable and up to date with regard to what is coming down the pike and so we will continue to go. However if we had more advanced facilities nearby like you do with Emory, we might not bother.
Wishing you well on this journey.
I have various portals, a common theme among all is the nursing staff answers any emails I send. In a way I understand, a doctor may have a lot of patients and if he or she answers each and every email, well, that could involve a fair amount of time, unpaid too!
Some questions may be best left for the face to face consult, when I wanted to talk about doing 18 versus 24 months of Lupron based on emerging studies and my response to treatment I saved that for my next appointment though I did send a message saying I wanted to discuss it...
For routine things, I send an update to Mayo on my treatment results here in Kansas City, let my urologist’s nurse know that I had my labs done today and could she post the results after he’s seen them. The nursing staff responds.
I think we are early in the portal development and over time they will get better. The only one on my medical team I can talk with directly is my radiologist who gave me her cell phone number and truly encouraged me to text or call.
Kevin
I have been going to Emory for over 3 years and found it to be a fire drill atmosphere.My Urol...the head of the PC group has never personally communicated with me except during in person visits. I finally fired him and now have a young man Urol who is very good and prompt at responding to my messages via the Emory Patient Portal but doesnt really have the experience i feel i need in a Urol for my case. Add to that driving into Atlanta to a zoo like complex...I havent found Emory to be worth it. Im thinking about trying Piedmont as an alternative ...cant be any worse.
I haven’t found Piedmont any better. The guy we tried there was definitely standard of care and was a urologic MO. When he said he didn’t believe in Lutetium treatments saying they tried that before and it didn’t work it made me wonder. We were referred from this website.
We have struggled to find quality care in GA. We are staying in MN now and I see things changing here as well (becoming more GA like). My feeling is most of the docs are overwhelmed and overworked.
Thanks for the feedback even though discouraging. I guess all i can do is keep trying to find an organization and/or Urol i can work with while i remain on AS but continue to investigate/sort out which type of Rad Ther i would choose if i finally opted for treatment. I wasnt so much enamored with Piedmont as i was the reputation of a couple of Rad Oncs there who specialized in SBRT. Guess i will be better off riding up to Chattanooga to see Dr.Joe Busch.
My M.O., Dr. Winston Tan, is at the Mayo Clinic in Jacksonville, FL, where I have been going as my primary PCa treatment source since 06/2015. The Mayo has a fantastic patient portal including the interactive section that allows me to post questions and concerns, and for them to respond. I have never had an issue with them. Usually, the response comes from Dr. Tan’s PA. She always responds within 3 business days, and sometimes sends me an interim response if she expects a delay (to research an issue and/or discuss it with Dr. Tan. Sorry to hear you are having so many problems with your M.O.
I am sorry that you MO is ignoring you or late in responding.
1. Talk to him/her directly by phone and express your sense of abandonment. Use that word. Abandonment is forbidden in the Canon of Medical Ethics.
2. Every hospital has a consumer relations staff and/or ombudsman. Contact them. Tell them calmly and clearly what has happened and use the "A" word again.
3. If those do not work, write him/her a letter asking for another MO to help you, remind your MO of your ignored requests and send a copy to the Chief of that Department (check the website) and to the consumer relations department.
Like everyone, physicians (I am one) fear censure by their peers. Let us know how this works for you 😊
My husband goes to Mskcc and has an amazing doctor Dr. Michael Morris but I speak or message his receptionist or nurses with questions,they consult with him and get back to me. I'm sure if I needed him he would personally answer but I feel confident enough that we are getting almost the same reply he would have given. It's at the actual appointments that Dr Morris takes the time to answer any and all concerns. It's a matter of what you feel comfortable with.
Ditto....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/20/2019 5:42 PM DST
Do you usually talk with Stephanie at Dr Morris ? She makes our appointments
I talk to many of them.... They don't like to talk to me so when they hear my voice they switch me over to someone else....😢😢😢 They hate my humor....(so does dr. Morris)...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/20/2019 6:08 PM DST
I thought you were being serious and thought this was hilarious. But when I found out you weren't being serious, I thought, Geeze, another j-o-h-n groaner, I need to hang up.
Me serious? are you serious? I'm used to hang ups.... I have many of them...BTW The other night my wife told me that "I'm her second favorite person in the whole world". So of course I asked her "who's first?" she said "everybody else"...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 08/21/2019 1:39 PM DST
To be serious for a moment (which is hard for me to be) my appointments are usually pre-scheduled every time I see Dr. Morris. I really don't recall ever having to call for an appointment, only if the Doctor changes the appointment date .
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/20/2019 6:19 PM DST
Stephanie picks up the calls and she is leaving Fri hope it is not because of your sense of humor or mine for that matter!!!! she was great!
I guess it's because one day I asked her to pick a number from 1 to 10.
She picked 4, so I told "you lose, take your clothes off".
I am now in the "'ME2" database.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/20/2019 6:47 PM DST
Let me get this right. The phone people are switching you back and forth and the employees are apparently quitting. And I suppose one day the good Dr. Morris will scream "I can't take this anymore" and jump out of a third floor window. And you'll say "Chocolate chip ice cream. Two scoops please."
Geez You got my number....... The thing I like most is when someone beats me to the punch......I love when someone breaks my balls.... Makes me laugh.... and you make me laugh... Thanks....
BTW It's the second floor.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 08/21/2019 1:44 PM DST
I spent 30 years in health care, hospital management and medical software. This is simply not acceptable. As Alan suggests move on to Emory or Michael Morris at MSKCC. Write a letter to MD Anderson CEO explaining you situation. The input can lead to improvement - but maybe not. Symptom of organizational decline.
A frank face to face is in order. Sometimes the doctor needs a little help to realize their shortcomings in this area. I remember two occasions in my forty years of practice when patients pointed out my shortcomings and I found it very helpful although not flattering.
Send the doctor(s) a certified letter/return receipt (snail mail) and give them HELL...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/20/2019 5:51 PM DST
My MO at MDA replies or the PA replies to my e-mails either the same day or next day.
Each MO has a direct phone line to their nurse. Get that number and talk to the nurse. They will communicate to your MO and call you back. That's how I communicate with my doctors.
I have been going to Emory for my PC for over 3 years. I use the Emory Blue POrtal for communications and have always found them to respond to my messages, usually the same or next day. The Urol himself doesnt respond but the answers i get make me know that he was consulted and told the NP or PA what to tell me. Recently i found a Urol there who actually replies to messages personally and substantively ...aka A MIRACLE! i am meeting with him on 9-13-19 to discuss my 7-2-19 biopsy report. This guy only has 4 years practicing as a Urol and has been doing targeted fusion biopsies all day every day 4 days a week during that time. Im wondering if I should just stay with him going forward to monitor my AS instead of trying to find someone more experienced. Not sure what is best way to go.
Personally I felt more confident in Emory then anywhere else in GA so far.
Plus they have most of the clinical trials in GA.
im happy for you. I think my attitude has been shaped more by the individual Urol i had than other factors. I wont bore you with details. I know Emory has some excellent doctors,but for what i need I plan to look closer to home to see what i can find.
Where do you live? We found excellent urologist in the Cumming area.
Gainesville...go to Cumming all the time. Who is it?
We live near spaghetti junction. We don’t see a urologist, a mo.
I live in Gainesville. about 60 miles from Emory...the expressway is brutal most of the time. Yuk!
PARP inhibitor Olaparib, phase 3 study findings (PROpel)
MRI prior to HDR Brachy and HDR intensity.
PSA holding low!!
