I am frustrated, I just travelled for more than 5 hours to see my MO. he saw me for 30 seconds and said 3 options:
1) we do nothing
2) we start adt
3) we wait until you get the results from the clinical trial at nih and talk then
Is this normal to spend 1 minute with your MO?
When I go with patients, I encourage them to bring questions in writing. It is up to you to manage your time with your doctor. What did you want him to say or address that he didn't?
Thanks, TA. I think it might be just me.
I think you can still follow-up with a brief email if you have specific questions
Thanks again, TA.
Chemistry is important.
When I go--I manage the visit....we talk about my labs....how I am tolerating the meds / issues I am having...my stereotactic radiation...I have written questions always--we discuss info covering a variety of topics--new developments at Cleveland Clinic and abroad that I have interest in---any trials I might qualify for....meds I might be on--He revealed to me they were looking at developing a cure program for those with oligometastatic dx/ low volume on my last visit.....15-20 minutes usually ...
Fish
Thanks fish, may be it’s time for me to have other avenues
If they rush in and act like they are doing you a favor... forget that... mine walks in---sits down-- and we begin--- I never feel rushed or like any of my questions are stupid... I do hear "not approved yet" or "not sure that would work" ... I feel comfortable in that exam room... so does he... we are in a battle together... he is on my side... if you feel differently... you may wish to move on... your choice...
Fish
I do feel rushed that is why I started this thread and now I just got home from traveling all day and got nothing from the visit. Thanks again, fish
Thanks, Nal. This is EXACTLY what I am going to do on my next visit. I will send an agenda with my questions prepared a week ahead of my appointment. Great idea. Thanks again
get another MO.
could ultimately be your last Dr.
Might as well get one your comfortable with. I shi%canned my first one for similar reasons. He basically told me to go home and die Only had one HDT drug he would give me and didn't seem to have any knowledge of any trials or new treatments and wasn't into answering questions.
Poor form from your doctor. That said I suggest you get better organised with your questions and options so that he has a patient who is clearly informed with expectations of in depth engagement. I would not tolerate such treatment but then I have high expectations from my medical team which so far the have delivered. All the best. Harry
If possible find a doctor closer then you won’t feel so cheated.
Been there. I travel from upstate to Manhattan to get treatment at MSKCC. Any Drs visit is roughly 8 hours in the car roundtrip. Flat out make it a point to tell your Dr he needs to make it worth the trip, or to do a phone consult instead. All the other suggestions about pre-visit preparation are excellent. MSKCC has a patient portal that works for questions between visits for me, maybe see if your Dr can provide an email address you can use for the same purpose. Tell him that could work to both your advantage for efficient time management and for better care. Make it clear your time is as valuable as his. If you get the impression he doesn't agree it could be worth considering a new Dr.
May I ask who is your doctor at MSK please?
My surgeon was Brett Carver in the Kimmel center. When my psa never went to zero after surgery I went t.i see an MO Dana Rothkopf booth of whom were in the Kimmel center on 68th. After imaging was done I saw a RO on the main campus Sean McBride. Dr McBride had been overseeing all aspects of my treatment besides the radiation and is managing the ADT for me as well. I like him, though he sometimes can have that "I'm very busy" demeanor, but t.i be honest it was rare and mostly at the beginning. Once treatment was underway it was even more rare.
No that's not normal. Did your MO explain to you where you're at? Why those are your options? Always try and bring someone with you. Try and connect with them on a personal level. They will fight for you.
Take it as a sign of things to come later when the proverbial s**t starts to hit the fan. Personally, I would start searching for a new M.O., especially if you are driving that far. I agree with others that to some extent it is incumbent upon us as patients to come to the visit armed with questions and issues we want to discuss. If your doctor doesn’t have time to sit down and discuss them with you he/she will likely not give you any better care when you really need help.
I travel 140 miles/2-3 hours from my home to the Mayo Clinic in Jax, FL. My M.O. there is always receptive to answering my questions and discussing issues with me. He never acts hurried or too busy to spend time with me. My visits usually last no less than 15 minutes, and up to 30 minutes. We go over my labs, scans, whatever and almost always include a cursory physical exam. The Mayo also has a great patient portal where I can send in questions in advance (usually answered by him or his P.A. Within a day or two). The portal includes a summary of all of my office visits and issues discussed, all procedures they have performed, as well as all lab reports, scan reports and images, and other pertinent information. Best wishes to you. 😎
Bed side manner does lack in many doctors. Plus a high patient load. These are not excuses and if you ask questions and you still feel you leave under stress because doctor patient relationship you can always change doctors. Just remember if you do this do not go in complaining of your prior experience..car salesmen like this physicians do not.
My first thought is why would you keep him or her . Do some research with that five hours and find someone closer you just might be happier and less stressed. I guess I'm very lucky my MO is five minutes from my home and he is the best Doctor I could have found if you read some of my posts you'll see how I praise him and his staff.. He was recommend by my family doctor that might be a good place to start ask your primary care Doctor. I wish you the best Brother. Never give up never surrender. Leo
If you have prepared questions, set the expectation for that and you can stretch it to 20 minutes or so.
Ahk1,
Sorry you had a frustrating experience with your MO. Looks like you have received some excellent advice for your next visit.
What direction have you landed on regarding your treatment?
Jim
Hi Jim
That was the reason I went to my mo yesterday to discuss and never had the chance. I take YOUR case as a guide and thought silly me that I might have time to discuss options and possibilities, etc. I told his assistance that I am going to have the NIH pet scan in 2 weeks. He said ok, nothing to say then, either we do nothing or start adt or wait for the scan results, send me the cd image results and good bye. I am so angry, I can’t even begin to tell you
Thanks, Jim
Once you have the PSMA scan results in hand you will have a much longer and fruitful discussion with your M.O. If you like, please share those results here and ask for a list of questions and different treatment paths that you might want to consider.
I think you are on the right path to learn what is going on inside of you and where the cancer is located. My hope is it will be local and you will have easy decisions to make.
Look forward to communicating further after your PSMA scan at NIH.
Jim
Thanks, Jim. I will definitely keep you posted when I get the results. I can see you started the adt and radiation next month so I wish you lots of luck.
Had my first Lupron shot today; 3-4 weeks until side effects start. Moved radiation back to April 16 in order to give Lupron time to effectively sensitize the area. Let me know if you want to get lunch when you are at NIH, I am 25 minutes from the campus.
Jim
Sounds great, I will check the timing and let you know. It’s basically on 3/14 and 3/15. I will be traveling to nih on 3/13. I will send you my contact info.
Just curious, how long is the duration of the shot? Is it a quick thing like when they draw blood or is it a slow release? Does it have to be done at the mo office or somewhere else?
Nurse administered it at the doctor's office. It was a shot to my stomach and took about 5 seconds. Slight burn and bump under the skin that will dissipate over 3 days. I had the 6 month, 45 mg shot. My co-pay was $16.66.
Glad to hear it. Never thought of it before. Sounds good. My brother in law when they give him infusion for a different disease, it takes 5 hours for the shot and I was concern about it. 5 seconds is very good. I can tolerate that. You seem to have things under control. Looking forward to meeting you next month, Jim
My early appointments with my MO or his NP would last up to an hour. I always come with a list of questions and concerns. I once asked if I was taking too much of his time and he specifically said if I have more questions he has time, even though at times his body language shows he's eager to get onto the next patient.
Also, I'm a runner who has done a number of half marathons in the past, he's a biker who does the Pan Mass challenge each year. We spend some amount of the visit talking about endurance sports, and there's usually some amount of joking to lighten the mood when talking about the more serious stuff.
My visits during chemo have gotten much quicker, but still are usually 15 minutes. I go over what chemo side effects I am experiencing (which for me is usually whining about the same things every week), ask a couple questions, and they listen to my heart and breathing, check for swelling in the ankles, and go over my blood counts.
I like the idea others have suggested about using e-mail or a patient portal to send in questions prior to the visit. I think I'll try that next time.
At the very least, I would expect him/her to discuss whether you should begin the ADT treatment and why. This professional is trained to advise you rather than having you determine what your treatment should be.
I generally get 5 to 10 minutes unless I have questions 😜😜😜
I had a radiologist tell me that they couldn't get me done on schedule because they were "backed up", treatment was expensive, and maybe next time I should remember this when I went to the voting booth. It wasn't enough that I had cancer, I also had to deal with a racist doctor. I eventually did receive treatment though. On a follow-up visit, they kept me waiting in the exam room for an hour. I just walked out and haven't been back since. Bottom line...if you're not happy with the service you receive, go someplace else for treatment. You have that right.
Tru enough. I just posted in another thread that I left the Joslin Diabetes Clinic in Boston (aren't I lucky? Two cancers AND Diabetes!) fir the same reasons. I now give ANY doctor I see exactly 30 minutes PAST my scheduled appt time, the leave at 31. Having cancer, my time is more important than his!
If they are perpetually late, then they should be running an urgent care center, or fire the schedulers who purposefully overbook shortened appt times. I tell them I do not expect to be billed for the visit, and have also asked for, and received reimbursement for my parking fees if I have not received medical services. Enough is enough! If we accept these practices, we deserve them.
I arrive 30 minutes before my appt time. I know that on occassion there could be an emergency, but not every-single-time! And to be put in an exam room to wait for yet another 30 - 45 minutes before seeing the doctor is ridiculous!
They get 30 mins past my scheduled time, whether I am in the waiting room, or an exam room, period. I walk at 31, and let them know. And after multiple times of this nonsense I finally just never went back to Joslin.
Good luck to all you guys that have to put up wuth that crap. I just don't.
Totally agree with you, Cancer2x. I have walked out a couple of times myself, when the quacks didn't show up more than an hour after my scheduled appointment. Their excuse is always the same : Caught in an emergency 
I actually found out that one of the quacks (a woman) was at home preparing her young daughter for her exams, while several others including myself were kept waiting for hours. To add insult to injury, we were repeatedly told by the receptionist that the doctor would arrive shortly. I found out later that she turned up at 16.30 for a 14.00 hours appointment.
DO NOT SETTLE.
I do so much research that I know more than my doc. That keeps us busy talking . Lol
AHK1,
It's important you are comfortable with your Dr.s knowledge and time within reason.
When my husband was DX. 8 years ago we saw different Dr.s until we were comfortable.
Some said "you can't keep interviewing Dr.s until they tell you the answer you want to hear". Not true and you will know when you feel confident with your Dr.
Where are you located? Perhaps someone here can help you with finding a Dr. who is closer to your location.
Good luck and don't stay with a Dr. who you feel rushed with!
BOOGEE
Thanks, boogee
I live on east Long Island ny.
Have you considered Sloan? I know it's not an easy commute but the quality of care, knowledge and expertise is hard to beat. I saw in another reply you're a software engineer. Same here. I worked it out with my employer to work remotely while i did 8 weeks of radiation. I brought my laptop, stayed at hope lodge and took the MSK provided shuttle back and forth for treatment and went home to Binghamton on the weekends. It was def worth the extra effort to get my treatment there. Feel free to send a direct message if you want to know more or just have any other questions.
Mark
Forewarned is certainly forearmed, Ahk, but PLEASE do not ever say "I think it might just be me." It is most certainly not. The system utilizes very smart people called doctors, many of whom - particularly specialists - exhibit behaviors that are on the Asperger's/autism spectrum. Id est, these folks are not particularly adept at social interaction or, more importantly, reading cues from patients that they need or would like more information.
Add on a high patient load and an educated patient (such as yourself, obviously!), and the consult is awkward and brief. My opinion - not as a doctor but as an educated person with some medical understanding - is that I really don't go to see an oncologist, specifically. I go to access a system that provides me oncology-related services.
It sounds dismissive, but - to me - oncologists are tools (no pun intended): I need their sign off for labs, imaging, and meds. I very much need and appreciate the people administering those services to help me understand them and answer my questions....not the oncologist. If I have more specific questions - say, on my imaging - I seek out multiple sources of information... if I can consult with the radiologist that reviewed my imaging, more the better.
Reading the vast amount of information on PCa made available in common language on this very site by folks like Tall_Allen (on the traditional medicine side), Nalakrats (on the homeopathic side)...and other sites like Prostatepedia.... empowers us to understand the general course and options available to us at any given point in our disease process.
Now, with the huge, wandering disclaimer of sorts above - I vote for finding another doc. Despite all the chatter about how great one doctor is over another, I believe that the statistical difference in "authority" and "experience" doesn't matter unless we face a unique treatment or surgery.
And you are unique: You reference a NIH trial that you are on. The fact that this doctor didn't have an opinion on putting you on ADT versus this trial (are you free to pursue other treatments during the trial?) indicates that they potentially don't have a full understanding of your case. It sounds contradictory, but maybe a more local doc with less experience but a willingness to learn would be a better partner in all of this.
By the way: Did I mention that it is not you? All the best. - Joe M.
Thanks a lot , Joe. I feel the same way as you described. I never learned anything from a doctor. I learned Some much from this site. I probably one of the very early software engineers who developed web sites in the early 1990, I didn’t know that one day I am going to count on a web site to try to save mylife. I was just very upset and disappointed that I didn’t get a chance to discuss anything about my case, just abrupt VERY short answers. Thanks again
Spoken like a true engineering brother...! In honor of our tradition and in the style of j-o-h-n.....
During the French Revolution, three professionals were arrested and convicted of having bourgeois values. They were a doctor, a lawyer, and an engineer.
They were to be led to the guillotine one by one. The crowd was roaring with anticipated pleasure.
First up was the doctor. How dare he enrich himself through other people's illnesses? Access to basic health care is a right, right?
The doctor was placed in the guillotine, and the lanyard was yanked. The blade started on its massive, implacable way down. And lurched to a stop.
The official in charge declared that it would be inhumane to make the doctor suffer this way more than once, so he was setting the doctor free. The crowd howled.
The executioner checked his equipment. All was in order. He put a small tree branch in, and successfully lopped it in half. He re-sharpened the blade.
Next up was the lawyer. Who needs an excuse to wish such a lying, cheating scoundrel dead? The crowd was thunderous in its applause.
The lawyer was placed in the guillotine, and the lanyard was yanked. Again, the blade stopped part-way down! The presiding official once again said that he would set this prisoner free because of the unusual circumstances. The crowd screamed in frustration.
Now came the engineer, a man whose innovations and devices were costing jobs. The crowd fell silent. The executioner checked and re-checked his equipment.
As the engineer was marched up to the guillotine, he looked carefully at it, and said, "Wait. I see your problem...."
Very interesting story. Put a smile on my face. Thanks for sharing , I truly appreciate it 
Yup' thats all I could get out of my Dr at UF Shands so I went to went to Dana Farber where I spend 15-20 minutes with my MO every 3 months.
THANK YOU all for your kind words and your past experiences. I truly appreciate your response
First visit with MO, 1 + 1/2 hours. Second visit 45 minutes. First visit with second MO for second opinion, 45 minutes.
Bethpage, your name seems like a name of a town on Long Island. Do you live on LI? You go to a doctor locally?
Ahk1, my husband is from LI. I wanted to choose a name that he would recognize. We now live in Vero Beach, FL. The MOs that have given us so much time are in Orlando and in Fort Pierce, FL, both respected in their professions. I should have said more, but I didn't want to just "add words" when so many others have already given you terrific advice. I only wanted to add that there are MOs that are more generous with their time. You deserve one of them.
Well, at least your MO didn't start by saying "You need to decide how you want to spend the rest of your life." the way the head oncologist at Kaiser Permanente did to me. Nice to know you've been written off. That was over a year ago and we've switched health care providers since then.
I couldn't agree with paulfreda more!!! You are so right! Why I should have to spend a couple hours driving and then another 45 minutes twiddling my thumbs in the exam room when Skype is so readily available is beyond my comprehension.
The problem of patient load is a real one and it's going to get worse. I maintain - and I haven't heard any argument to the contrary - that the finest health insurance in the world is worthless if you can't find a doctor. And where are the incentives for someone to become a doctor? Remember the demand for health services will only increase as more baby boomers age.
Consider: graduate from college @ age 22. Four years of medical school, internship and residency - you're 29 and a quarter of a million in debt before you're making a dime. I've run those numbers by the CEO of Samaritan Health Services and he agreed with them. He said one of his biggest problems is helping the younger physicians in the Samaritan system with their debt.
Has anyone seen a medical proposal that would increase physician compensation? It's all about cutting costs. And of course malpractice insurance - tens of thousands a year.
It's going to get worse.
You might be true in all of that but to the contrary I was sitting there waiting and thinking, there were at least 30 people waiting in the room. I get charged $1100 for the visit, so you do the math, it can’t be that bad. More power to any doctor, they deserve it but definitely not suffering.
Hi Ahk1 My last visit to the urology department at Cairns took about an 11/2 hours. I had a MO the head Urologist and the Pca nurse and my Partner in the room with me. After the Doc's finished their discussions with us the Pca nurse took us to another room and filled out paperwork associated with travel etc for my PSMA scan. T_A had sent a link to me of questions I should ask, which I had printed out and handed to them. Each question was answered and they even wrote down the response to each question so that I have it for a ready reference. On another note I have just moved to another location in Far North Queensland and had my medical records transferred to my new GP. She gave me a copy of my Pca history and another surprise to me, there it is in black and white. : PSA in mar 2013- 26 / PSA in November 2013-29 / PSA in September 2017- 110 /PSA in December 2017-180. I'd like to know why my Dr in 2013 didn't explain any of this shit to me, as with most people we are ignorant of this until we are told or know somebody with this scum disease. This GP has been my Doctor since I left school. So my point in this rant my friend maybe time to seek another doctor if you are not happy. Nothing worse than stress and worry to keep that scum growing inside of you.
Cheers Glenn aka Pizzle123
Thanks Glen,
This is why I am frustrated, no one cares to do their job and follow up with you. My MO sent me for a whole body mri that found suspicious cancer lesion 6 mm and when he tried to explained to me without having my records with him or in front of him, he took a pen and said it’s like a pin point and when I said no, it’s not , it’s big. It’s 6 mm, he got confused and then he sent me for another mri to verify and untill now , more than 4 months he never called or said or discussed anything about the results and I had to go and research everything myself and try to get educated so again, no one gives a damn.
It sucks when they don't seem to want to care, but I have to admit the crew I'm dealing with are brilliant particularly the Pca nurse. She is absolutely wonderful and I can ring her at any time to discuss any issues I have. Study up and heed advice from our friends here we are all part of this scum disease and losing one of our members is like losing a family member. live long my friend
Glenn
The emory dr has his pa see us
In 10 months we have seen him maybe 3 times.the first time; the week my husband was diagnosed he made it sound so bad. One of the times it was after we went to Mdanderson the first time. The pa went to get him to come hear about it.i think the chemistry has to right with a mo.
I hear you.
I think that is outrageous. Did you at least have a nurse practitioner or physician’s assistant give you some attention? My husband’s last visit at MSK they were surprised that he even wanted to see the MO. Turns out he was at a conference but never bothered to let us know before making the appt.
Does anyone know if Dr. Kantoff or Dr. Morris actually see their patients or do they just make a token appearance at the initial visit? Thanks!
Best of luck to you!
Thanks vitaminlover,
Token appearance?
If they are not going to see patients then why bother go there in the first place?
We would see the pa at emory. We would say she is the one handling my husband cancer.
We have been to mdandersen 4 times. See the doctor and he is not in a rush. He has also called my husband when stuff going on. On top of that, he gave us his cellphone number and if we need him can call him.
Hi Ahk1, We are left wondering why the doctor spoke to you for only 30 seconds. It is hard to believe it was only 30 seconds. Anyway, for any of us to give a meaningful opinion you might care to describe all your details about your Pca, Psa history, scan results if any, previous medical examinations.
From what you say, we are left to guess that you may have a low Psa < 5.0, maybe you have been diagnosed, maybe not, so hence the option of maybe ADT or watch & wait. Are you in a nih trial already? for just what?
Some of my talks to my local general doctor ( GP ) can last 20minutes+ depending on what the subject is and whether scan reports have to be read or scans viewed, scripts to written, injections given. Last Tuesday I had a sub cutaneous cyst about the size of a grape removed surgically plus some other suspicious thing removed from skin of my back, and that involved the GP, a nurse, watching intern, and it was from 4:30pm to 6:20pm and Medicare paid most of it but there was a $50 direct charge. It would have been expensive but was good value, and the time and it made no difference how long I had travelled to see the GP. Pathology tests will be done I will not be surprised if the "suspicious thing" is cancer and I may have skin cancer to fight as well as Pca.
But on Wednesday I travelled 300km to get No 3 infusion of Lu177 on Thursday, during 5 hours at a new hospital that has set up to do chemo and theranostic treatments. Cost of each Lu177 is about usd$7,300, no Medicare rebate, but I got to be treated by a leading Sydney cancer specialist who I had not seen before, but who had many questions for me to answer about my history and my advanced Pca condition. My opinion is that this specialist was worth every cent, she is a zealous lady doctor of about 45, and who has been conducting and who is connected to others who may include me in trials which I could never know about if I don't stay in contact with her. She was giving me some hope for what happens when the Psa rises say 6mths after I finish this course of 4 infusions of Lu177, there other things. Lu177 is a good thing to get after ADT fails, but it can only attack Pca which has the right chemistry to allow it to work. So I may need other things to attack my Pca which has mutated and which will go on to kill me if I ignore this.
Anyway, at 71, and nearly 10 years and having stayed extremely fit for last 13 years, and after diagnosis at 62 with Gleason 9, Psa 6.0, I still have a major battle to stay alive for a few more years and this will cost me a pile, but there will never be a 30 second consultation, I am sure of that; it has not happened yet.
So, do not give up. But the best doctors give you possible positive outcome scenarios and do not write you off, and they take every patient seriously, which means a fair amount of their time, and that might cost 20 times the minimum hourly wage. Very few men get remission from Pca if they do not have a successful RP early enough. IMHO, watchful waiting is bullshit; a man should be fully examined at Psa less than 3.0, and if there's any hint of Psa present, get biopsy, and if there is one positive sample, get RP asap, BEFORE any Pca spread has occurred. I was diagnosed way too late; my large tumour at PG was only examined when Psa went over 5.0, and by the time a biopsy was done in 2010 it was 6.3, and 8.8 at time of attempted RP some 4 months later. RP was not done after docs opened me because too much cancer was outside the capsule. It had spread to many places, and ADT held Psa < 6.0 until 2016 when a pile more treatment was necessary, and the first mets appeared in PsMa scans.
I've had 5 such scans, usd $500 each, no Medicare rebate.
Patrick Turner.
If I had taken someone to my first visit with my first urologist after my biopsy I would not be where I am now. No cancer he said. Yepee. Smart person would have said is there any chance you are wrong. He was.
#3 Cabazitaxel - liver panel normal again💙
Is having chest burning sensation normal?
Castration resistant in just a year? Normal or not? Provenge in my future.
is this the new normal?
A Return To Normal?
