doctors: My oncologist seems like a... - Advanced Prostate...

Advanced Prostate Cancer

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doctors

spencoid2 profile image

My oncologist seems like a good doctor but certainly not perfect. I would think that a great doctor would run down side effects and possible solutions. I had to ask about everything and did not get the answers I have on this forum. If the doctor is too busy couldn't a nurse explain things to a new patient. What to expect and how to deal with it? Maybe the doctor thought I was smart enough to figure it out myself?

Anyone have a different experience than me, hopefully better?

95 Replies

My husband’s local Dr. is exactly the same!! So frustrating.

Lulu700 profile image
Lulu700 in reply to Manohar11

Common

Welcome to the club! They care only about the status of pc . Side effects we all get and fight in different ways. After two years on prolia And out of the blue I suddenly have a fractured rib . Wtf? News to me. But why if on prolia are my bones fracturing? IMO Prolia doesn’t save the joints , tendons or ligaments from no t adt destruction .I have no signs of pc but I’m fd after over 6 yrs of adt with no t . Docs don’t face this conclusion. I feel that they know all that we go thru and it’s all due to treatments , but expect happiness if the pc goes away . Which I am . The rest we must deal with . Others here should offers good advice . You will probably get better info on side effects here than from the doc . They’re callous and some even cavalier about it. My new guy said” the prolia is working”! Because my bone density improved 10% Whoo hoo! pluck the day brother.

Fightinghard profile image
Fightinghard in reply to Lulu700

Celebrate “no signs of pc”. That makes it a good day

Lulu700 profile image
Lulu700 in reply to Fightinghard

For sure dude! I live with gratitude each day . I hate APC .. The fact that it’s not seen in me is outstanding . I ll ride it for all it’s worth . If and when it comes back for its dinner I’ll probably jump off a Cliff rather than face more poisons . It all about how much suffering a guy can take ?

lancer82801 profile image
lancer82801 in reply to Lulu700

Prolia and other bisphosphonates are poison!! The attached article is promoting the authors program, but the history she gives on the advent of these drugs is well worth your time to read. saveourbones.com/osteoporos...

We all mostly know the ADT drugs act by suppressing Testosterone (the main driver for prostate cancer) and thus, in addition to suppressing Testosterone in men, the lack of testosterone results in a deficiency of estrogen, because some testosterone is converted to estrogen in the normal physiologic state in men. Lack of Estrogen has been known for years to results in softening of the bones (osteoperosis) in Menapausal women. Estrogen replacement effectively prevented/ reversed osteoperosis in women. The product used mostly DES (diethylstilbesterol) was found to cause an unacceptable high rate of side effects including cardiovascular problems and has been actively discouraged and avoided for 40 years. The products now prescribed to address the osteoperosis are the bisphosphonates (prolia, etc). Recently researchers (last 10-15 years) have taken another look at estrogen replacements. The use of a naturally occurring estrogen (estradiol) and a different route of administration (Patch instead of oral) has shown NO cardiovascular side effects. A low dose estradiol patch will reestablish the estrogen lost by The ADT suppression of testoserone.

There are also other ways to encourage normal bone growth

saveourbones.com/osteoporos...

Lance

Take responsibility!

(1) Bring written questions with you to the next appointment.

(2) Write down answers as you get them

(3) Bring someone with you to catch what you miss - debrief afterwards

(4) follow-up with email for short clarifications

(5) Don't expect doctors to read your mind, or to know what is important to you personally. State it, even if you think it should be obvious.

(6) If the doctor gives you a handout - read it

(7) Don't believe nurses who are trying to be helpful

spencoid2 profile image
spencoid2 in reply to Tall_Allen

I do pretty much all of that now but did not initially. I did as much checking online about side effects for example but there is no way to know what is common and little about how to deal with them. My doctor did make some recommendations when I asked but this forum is much better. Also the cancer center has unbelievably horrible IT and even phones. They are in Santa Rosa where there were huge fires last year and the phone system was never the same after. Phone companies are not interested in replacing "copper". Their patient portal is a total disaster. They keep saying they are working on all this but nothing changes. Unfortunately I have few options unless I drive yet another hour (or much much more if there is traffic) to go to San Francisco. Fortunately I have this forum.

cesces profile image
cesces in reply to spencoid2

This forum is the best place I have found so far.

skiaspen profile image
skiaspen in reply to spencoid2

We are the same distance from San Francisco, but, recently changed dr. To UCSF Prostate Cancer Center….for similar reasons as you mentioned…. like a breath of fresh air! They are very comfortable doing video consults so you won’t have to always drive to The City.

spencoid2 profile image
spencoid2 in reply to skiaspen

I am registered as a UCSF patient of Dr. Aggerwal (sp) and might consider switching. I do need shots every month so maybe I should us Santa Rosa for that and do the real doctoring at UCSF. I have only had phone appointments from Dr. Aggerwall. He sounds so relaxed and if he had all the time in the world. Never felt rushed. He can probably refer me to an MO at UCSF. So far nothing horrible has happened at SR but if I feel uncomfortable I can always switch. Thanks for making me think about this. I do have options and so far (I used to live in SF) have had only great experiences at UCSF. My husband is a former UCSF employee so we went there whenever (we were younger and only really needed dental care and a very occasional Dr visit)

skiaspen profile image
skiaspen in reply to spencoid2

From what I’ve heard, any dr. you get, in the Prostate Center there is excellent. Best of luck….

cesces profile image
cesces in reply to Tall_Allen

Good list.

You should post it permanently on your personal blog.

Tall_Allen profile image
Tall_Allen in reply to cesces

Most of it is here:

prostatecancer.news/2017/12...

cesces profile image
cesces in reply to Tall_Allen

Yes. Nice page.

Teach73 profile image
Teach73 in reply to Tall_Allen

Tall, you are spot on. Will add that check with your pharmacist, better yet the Oncology Pharmacist. The latter is the best as they work with oncology docs and most likely to be oncology doctors themselves.My other suggestion is you have to be comfortable with your doctor. Look for a DO or a female doc. They are better with people.

Tall_Allen profile image
Tall_Allen in reply to Teach73

What is a DO? I agree that comfort is important, but we all have different personalities and are most comfortable with different sorts of people. You may enjoy the section on "Personalities" here:

prostatecancer.news/2017/12...

spencoid2 profile image
spencoid2 in reply to Tall_Allen

typo RO

When i visit my MO I write down all my questions and concerns. I give her a copy and have a copy in my hand. We go over the entire sheet, question b y question. Works for me, it saves her grace and I leave with all my concerns answered.

same for me with my MO. I was spoiled by having a great primary care doctor. she is a mind reader, seriously she is very perspicacious and does not miss a thing. She asks questions, touches you and even did a DRE. She is not arrogant but is firm when she has an opinion. She is willing to say she doesn't know and is good at research. I get replies from patient portal messages at 10 PM and on weekends. She is rare. I think this is more common with women doctors.

You just described my MO. I have been with her since she completed her fellowship. She always checks my entire body for swollen lymph nodes, etc. I will be with her till the day I die.

I've never been checked for swollen lymph nodes.

That's just plain crazy.

Great. I am doing the same. The doctor wrote the answers and your concerns on the sheet. I also recorded down the whole meeting with my iphone.

Most American Doctors when young are idealistic and empathetic. The amount of work load, the constant fear of legal suits, everyday battle with health Insurance companies to get paid for services they provide...all these factors take a huge toll on Doctors and they become cold ,frustrated and uninvolved. Some totally burn out after working for only a few years.The system of Health Care is not easy to deal with. The pressures are real and excessive.

These days, lot of American Doctors are counting their days to retirement because they are so fed up.

dhccpa profile image
dhccpa in reply to LearnAll

They weren't any better in the good ole days before health insurance.

My wife recently joined me in a 4th stage cancer diagnosis…primary breast secondary lung liver and very advanced bone….she was in terrible shape. When we first met her oncologist I was blown away by his concern for her care…I always attend her appointments mostly making a nuisance of myself. We can tell he’s a busy guy as he cant always return calls etc, but when he’s on point..amazing. I take her spectacular recovery partly as a result of his incredible consciousness. Contrarily I haven’t heard from mine in over two years…granted, I’m doing well, but seriously, don’t you think I’d get one follow up ‘how ya doing’ over the years …nada. I’d love to know where he’s at, being a PC powerhouse. It tells me we’re our own keepers, a credit to our own survival and the many helpful voices on this and other similar care sharing sites.

Muffin2019 profile image
Muffin2019 in reply to Jbooml

We have to be our own advocate, my oncologist is pretty much on point and I go with notes to get questions answered. I recently went over the physicians notes and found some errors that I brought up and they were changed. The oncologist encourages research and the last time he said we are all set and i said not yet, he apologized and went over my questions. My general doctor that I have been with for years is not pro active, I had to send him readings of my increase blood pressure to get medicine and he had it in his notes that my BP was high. He also did not do a DRE when my PSA started to increase before I had symptoms which my oncologist just shook his head since in his notes he had indicated that I refused treatments. I said he never offered or did a DRE until I had symptoms, he is more of a family doctor so I do the research and get other tests from the home visitations once a year from my health insurance. He watches the cholesterol readings, blood work and immunizations like the flu and shingle shots are up to date. The nurse who gave me the xgeva shot at the oncologist office noticed that the calcium was low so she suggested I get tums and take them every day and it worked, they are cheaper than the stuff in the vitamin section and increase calcium rich foods.

I have the same experience with my latest oncologist & I call it the human condition of not having experiencing it themselves.They know the side effects & the nurse who gave me the Firmagon injection the other week gave me a list of side effects the Oncologist would not have told me about like possible breathing problems, tiredness, etc.

You can’t go wrong with Tall Allen’s list. Item 7 - “Don't believe nurses who are trying to be helpful” - may sound cynical, but he’s right. Most nurses are caring, compassionate people who don’t get paid enough to do what they have to do. But some well meaning nurses think they are doctors. They don’t know what they don’t know, but they give advise anyway.

Our MO’s nurse insisted that the MO would not prescribe Zytiga and that insurance wouldn’t pay for it. Wrong on both counts. But we didn’t find that out until our next appointment with the MO (who does not respond to emails) several months later. Very frustrating.

spencoid2 profile image
spencoid2 in reply to Dett

PAs can be arrogant assholes, who think they are doctors. I have met really good ones and really bad ones. The worst was actually a woman. The worst doctor I encountered is also a woman. In spite of that I still have a preference for women doctors.

LearnAll profile image
LearnAll in reply to spencoid2

I had a totally opposite experience. The best Doctors I have met are all Women...More kind and more caring.

cesces profile image
cesces in reply to spencoid2

Statistically women Docs have better outcomes than male docs.

The speculation was because they are better listeners, on average.

spencoid2 profile image
spencoid2 in reply to cesces

i agree but that is statistically. i have a truly caring compassionate primary care woman doctor. I consider myself luck to have such a great doctor in a rural location. She is not just compassionate and caring but also very smart and well educated.

However at the same hospital (she is affiliated with the hospital) i was assaulted by a totally arrogant bitch who forced a Foley creating a false passage and insisted on inflating the balloon event though there was no urine flow. I was literally screaming. I said a catheter should not hurt like this, something is wrong. STOP STOP STOP. She didn't, just a little more inflation. My insurance paid virtually everything including the emergency TURP at another hospital but I took her to small claims court. The judge did not even hear the case because I did not have an expert whiteness. I just had the hospital report in which the surgeon condemned the action of the "outside hospital" Never got to show it. Judge was also a bitch and likely (small town) a friend of the doctor. I am not a misogynist. I am gay so I do not see women as sexual targets. Most of my good friends are women and I like them smart. When the bailiff announced, "this is the case of Spencer Chase vs Michaela Shepphard" the bitch stood tall on her high heels (she is quite attractive) and said "that would be Dr Shepphard"

The lesson is that even if you are in the ER but not likely to die immediately, get the fuck out of there if you think you are being treated badly. Fortunately I have had only good doctor experiences since then so I have not had an opportunity to put that plan into action.

dhccpa profile image
dhccpa in reply to Dett

So don't believe the personnel who buffer the doc from your pesky questions?? Ahhh, I'm beginning to understand. Yesss

in reply to dhccpa

My biggest frustration thus far is the staff who plainly have been trained to shield the doctors and nurses and anyone with real information from patients. It often takes a week to get a return phone call and sometimes no call ever calls back; often if a call comes, it is not from a provider but rather from a desk or call center person with no medical training. The doctor is scheduled in 20 minute increments which leaves little time for questions and discussion after physical exam. It’s also obvious to me that doc is reading my chart for the first time while I sit in the appointment with him- taking up more time he could be spending with me, and he has more than once initially confused me with another patient. I have had this experience with two doctors already and while the “get a new doctor” is good advice, it is easier said than done and comes with no guarantees of improvement. My wife agrees with the comments on here about women doctors who take more time to communicate with patients. I have no experience with that.

dhccpa profile image
dhccpa in reply to

Yes very cumbersome to gather records and change doctors.

Always be your own advocate, my popular saying goes, nobody will care about you like you.

Self talk is an important factor . If youre from 61 like I am? Happy 60th! Now I am officially too old to die young .

doc1947g profile image
doc1947g in reply to Lulu700

Me too at 74 y.o.

🙉🙊🙈

Lulu700 profile image
Lulu700 in reply to doc1947g

Anyone who handles the severe pain for many decades like you have gets my appreciation. Your one tuff guy doc . Hang in there baby.

spencoid2 profile image
spencoid2 in reply to Lulu700

gee i never thought about that. i don't have to worry about my friends saying "what a shame, he died so young" that's one load off my mind :)

Lulu700 profile image
Lulu700 in reply to spencoid2

I’m 60 not young anymore. My heart goes to newbies in their 40’s . God have mercy !

monte1111 profile image
monte1111 in reply to Lulu700

Only the good die young.

spencoid2 profile image
spencoid2 in reply to monte1111

no problem for me

doc1947g profile image
doc1947g in reply to monte1111

At 74, I guess I am very BAD.

Lulu700 profile image
Lulu700 in reply to doc1947g

You’re good doc ..

Cheers, 6 decades not long enough.

Doctors should understand that if no patient doctors disappearDoctors all over this planet are trapped ...protocols, no time, greed for money, lack of caring,...

Rare are docs who r competent and behave like human being

In my journey, what I got from my personal research is far better than any doc...RO URO ONCO

I use them for treatment and prescriptions...

I am a firm believer of digital medicine and AI doctors

Then all 5000 years knowledge can be updated in the AI doctors

and they can be programmed to have human emotions...

Patient can take all his time in consulting AI docs without any waiting and 15 min rushing out

Most of times when I see a doc

all he/she do is look at their screen and enter infos...

What TA says works only for doctors who are still human beings...otherwise they are deaf

....

Let us take our patient situation in our own hands and sharing

our experience....sure we will need these robotized docs till replaced by digital docs .....

Each of us has his own journey with docs and I fully respect the opinion of each friend in this cancer ward.....

diversity doubt and not accepting if it seems not correct

Enjoy the life journey on this tiny planet...keep it human..

Lulu700 profile image
Lulu700 in reply to Karmaji

🌎🌎🌎👏🏼👏🏼👏🏼👏🏼

Lulu700 profile image
Lulu700 in reply to Karmaji

My pc specialist Pariminder Singh talked to us and saved my life. He’s a Sikh and told me” now you have me . A Sikh warrior fighting for you” We felt such

Love and confidence in this man. He saved my life . My uro wanted to take a different path. Thank you Dr Singh ! ❤️👏🏼

LearnAll profile image
LearnAll in reply to Lulu700

Lulu, Do you know Sikhs of India are historically Warriers who were created to fight cruel, barbaric muslim invaders. Sikhs have bravery and love for justice in them and they are well respected in India. Glad to know you got a Sikh Warrior on your side.

WSOPeddie profile image
WSOPeddie in reply to LearnAll

Very interesting. There's a Sikh temple down the street from me.

The fiercest Sikhs are the Gurkha. They are such historically brave soldiers that when the British Gurkha regiment advanced on the Argentinian trenches in the Falklands war the Argentinian soldiers dropped their weapons and ran. They had noticed that the Gurkhas had drawn their ceremonial knives. A Gurkha who draws his blade cannot return it to the scabbard until it has drawn blood. The Argentinians were terrified.

That is true. Gorkhas are great warriors and extremely loyal . There is a saying in India..." If you are not afraid to die...either you are lying or you are a Gorkha." They are known for their loyalty and fearlessness.

Lulu700 profile image
Lulu700 in reply to TottenhamMan

Thanks TottenhamMan! 👏👏

Lulu700 profile image
Lulu700 in reply to LearnAll

The ignorant see them as Muslims due to the turban . They are not .. They attacked a sihk shrine in Tennessee .. Dr Singh told me they are warriors . But they can’t fight for themselves . He fought for me . Changed things . The uro was miffed . Thanks dr Singh ! He moved up to Mayo .

That's about the way it works. In a few years the docs will probably avoid ever even seeing the patient.

spencoid2 profile image
spencoid2 in reply to dhccpa

hopefully once the machines take over there will be a new occupation for providing what was lost. PAs supposedly do some of this now. And the great primary care doctors still manage to spend quality time with their patients. I have been lucky that both (moved) of my primary care doctors for the duration of my PC have been excellent. I met my current primary in the ER or I probably would never have known about her. When she treated me she was wonderful and I thought I wanted her as my doctor. She sat on the bed (in the hall) next to me and it was clear that she really cared about me or at least about helping me. She is so good that a first visit takes about 4 months to get.

Lulu700 profile image
Lulu700 in reply to dhccpa

All virtual

My experience has been exactly the same. What I am seeing is that the doctors are rushing to the next patient because the are in a big health care system not private practice. Its not like sitting down with your primary care doctor going over how you have been felling etc.

Lulu700 profile image
Lulu700 in reply to rozr

They schedule a tight agenda .. no time to talk .

You need to know what to ask and sometimes we do not know as we have yet to experience something. For the recent SBRT to the prostate, the RO ran down a list of side effects before the treatment and so did the nurse. Neither mentioned that after the treatment was over, he could get really acute radiation proctitis. My husband was in pain and suffered a lot for a couple of days when they eventually got around to prescribing pain medicine, internal and a topical relief. When we contacted the RO with the symptoms, he said it was common to see that side effect. Why had he not mentioned it before or during the treatment and better still, prescribed the medicines in case needed so that in the middle of the night we would not have to start looking for something from a 24 hour pharmacy (they did not have the medicine in stock for a couple of days)? Perhaps not everyone gets the side effects but being prepared is better than suffering unnecessarily.

Docs aren't good at this.

You have to ask.

Then also ask the pharmacist.

Wikipedia is good too

But you just can't rely on your doc

Lulu700 profile image
Lulu700 in reply to cesces

That s a fact KoJack!😳

There are several reasons doctors don't spend a lot of time of ADT SEs:

It's time consuming, because there are so many.

SEs vary greatly from one patient to the next.

One SE may give rise to a second one, and so on. E.g., ED and loss of libido may (or may not) ruin your marriage.

Doctors don't want to talk you out of a treatment that could save your life.

Also, some of them defy accurate description in the English language. Where the idea of a hot flash is easy to communicate, and the experience is the same for everyone, the same can't be said about fatigue or depression. It's not precisely fatigue, i.e., the lack of energy we get from sleep deprivation or exhaustion from prolonged periods of exercise. For me, it was this plus a kind of malaise that may come with a flu.

In any case, Richard Wassersug et al have written a great book on the subject, which you can find with Google.

WSOPeddie profile image
WSOPeddie in reply to Horse12888

What is it about gynecomastia that a urologist prescribing ADT doesn't understand or bother to mention to the patient? Yeah it doesn't affect every patient, so what. Why the failure to mention that tamoxifen is a remedy for gynecomastia? File under patient not knowing the right question to ask? Who is the doctor here? Treat the disease and not the side effects.

Horse12888 profile image
Horse12888 in reply to WSOPeddie

Excellent point. As I've said elsewhere, there should be a video that summarizes the various PCa treatment options, and provides the pros and cons of each. Anyone who performs a treatment without strongly suggesting that the patient and his wife watch the video should lose his license.

They seem not to care or cant be bothered had to change my uroligest to another in the same office because of insurance had just finished salvage because of recurrence, first meeting you would think he would have a copy of my pathology report,> No > first urologist didn't even tell me that I had a positive margin >just said I was cured >no radiation needed >6 years later recurrent >poor communication.. radiation oncologist said this was curable I just laughed.

Lulu700 profile image
Lulu700 in reply to Channelhomec

I’m too started out with a big ego urologist .

spencoid2 profile image
spencoid2 in reply to Lulu700

both my urologist and radiation oncologist were great. RO died and we moved from the area. new uro is very qualified but he sees surgery as the solution to everything :) on the edge of arrogant but he knows this and tries to control himself. i am also careful about what i say when i disagree. he also gives me leeway. i could see another doctor with his skills being a total arrogant asshole. Top in his class best education etc etc.

monte1111 profile image
monte1111 in reply to Lulu700

Fired mine the first day and changed insurance.

I don't know... Maybe I'm different...

But, any doctor who gives me the bums rush, isn't my doctor thereafter. Subsequently, I have only had doctors who take the time to treat me like I'm their only patient that day. Doctors who answer my questions. Doctors who make themselves available if I have an issue or question after the fact. Doctors who engage my concerns and also interact with my wallowing in the weeds of this disease, for my own benefit and understanding.

Like TA says, you MUST take responsibility! It isn't my doctors fault if I don't measure their capability by challenging them, even for simple answers! I should never feel I didn't ask a question I should have when our consultation is over. And if I do, I must know, and be sure, that I will get an answer to my inquiry.

I've recorded (audio) every single session I've had with a doctor. In NY, it's a single party consent State, so I don't need to even inform anyone that I am, as long as I'm part of the conversation. Be aware of your State laws if you try this. But that said, it has been invaluable because when I get home from doctor visit, I review our discussion and ensure I understood everything we discussed. It's amazing that even when taking written notes, what you'll miss during these visits. My wife has also been part of many and the same effect occurs, where she has a different recollection of what was discussed, etc.

So yes, YOU must take action. YOU must take responsibility for your care! YOU must ask the questions. YOU must ask for what you want! There should be no expectation that your intentions are known and in the absence of such, you provide the space for the doctor to assume you DON'T care and are allowing them to make the decision for you. You need to help yourself, champion your cause and be the first to the top of the hill to plant your flag, make your intentions known, and make it easy for all to see!

Prepare yourself before your visit. Do your research, have your questions ready. There's no excuse today not to be prepared as the internet is loaded with examples in this regard. Especially helpful sites like the NCCN website that will walk you through this. So as noted ask those questions, if you don't understand something, ask again. Ask until you DO understand, even if it means making another appointment. Make your intention clear, even if it means you tell the doctor you cannot make a decision until you understand. Especially if they don't have time for you or seem to be watching the clock. You'd be surprised how attentive they become when informed you'd like another appointment to review what you just went over. Ask for literature, or study results that prescribes the modalities being discussed or presented. Ask specifically about side effects, recovery and alternates to what is being proposed and their associated ups/downs... They may feel it's not their job to educate you, but it actually is their job to make you aware. And if that's just too much a burden for them, well, then maybe your time is too value to waste there.

I hope the message is clear, we are our own advocate, and cannot blame others for any shortfall we allow to exist and the subsequent after effects if we did not do our diligence in caring for ourself, well, like it's for ourself! Be selfish, be conceited, be as if you are the only one that matters! Because you do!

Best Regards

Thankfully, our experience is better than many. DH’s oncologist is compassionate, open to discussions, well informed and always make us feel better. Before beginning a new treatment, an education appointment is scheduled so that patients know what to expect and what to look out for. I just assumed most practices did this. My biggest complaint is the difficulty in talking to a nurse or the doctor who are shielded by staff who basically know little about the concern. It’s very frustrating.

After my RP, my urologist, whom I chose for his reputation was doom and gloom when telling me my post-op pathology. Made me so depressed. He told me he would start me on Casodex and Lupron. I asked about Firmagon. He said he never heard of it. I asked a few more questions on things I had learned from this forum.He didn't have any answers.He told me I should stay off the internet. I would just drive myself crazy.

I walked out if his office and never saw him again.

spencoid2 profile image
spencoid2 in reply to keepinon

i finally learned the same. there are (except in my rural location) plenty of doctors. if you have a bad feeling about one, run !!!

My uro that dxed me hated to be asked questions. He happily handed me off to a pc specialist that made the correct moves for me.

IMHO, your oncologist may be a good _oncologist_ but she or he lacks the qualities that make a good _physician_. Also skirting some liability issues if not giving you honest and complete information about side effects and resources on how to handle them. There is nothing wrong (and a lot right) with writing out a list of your expectations as his/her patient and then asking him/her to read the list and discuss it at your next visit. THAT may help guide you about whether there will be future appointments. You have the right to express your needs and wants. Not only may you get them but also you will show your oncologist how to be better for your fellow patients.

I do make lists and ask questions and he is good about answers. They schedule appointments at 15 minutes intervals so if he goes beyond that everyone after has to wait.

Cooolone profile image
Cooolone in reply to spencoid2

This is why I always prefer first of the day appointments, lol... It works, you get the doctor fresh and I've never felt rushed in the a.m.

My wife and I always have a list of questions for my research doctor, and I think he is a great doctor. Doctors deal with this every day. They don't always remember to tell you everything.

Write your questions down and go in armed.

I've been reading the various answers. Based on them, I'd say that generally we're in a hell of a mess. What next? Buy and run our own scan machines? Mix our own chemo cocktails?

Cooolone profile image
Cooolone in reply to dhccpa

Might not be a bad idea!

🤣

I have never felt rushed with any of my doctor appointments. I keep a running list on my phone of questions to ask the doctor the next time I see him / her. Doctors usually won't give out their email addresses but I do have the work email address for the office assistant. A few days before my appointment, I send the assistant my list of questions and ask her to pass it on to the doctor. My doctors really appreciate it. It gives them time to think about their answer and to go back to check some previous test results.

Almost hate to wade into this topic, but it hits a nerve. My 1st MO wasn't too bad, but the outfit he worked for was terrible. He left to go do research. Got a referral to another MO. Asked them for lab request before 1st appointment and he said it could wait until next time. Next appt, he didn't go over the labs, saying everything was ok. Had areas too high or too low. Then he gave me advise that didn't ring true and would have been bad for me. This site had the right information and a couple of you said to fire him which I did.

Have an initial appt at Mayo Clinic in PHX , Dr. Moore, in 10 days, hope the third time will be the charm--means 200 more miles to drive per visit.

Was just going through old medical records and found that 6/18 when I saw a PA who was new in town and thought she knew everything, didn't bother to tell me that the lab work showed I had a PSA of 8.8. I knew I had BPH problems, had no clue what the high PSA was telling me. Next PCP did refer me to a UO and finally a Dx 4/20. Statute of Limitations for medical here is 2 yrs, so I can't sue the bitch. Can only wonder where I would be now if action had been taken much earlier?

are you a Spencer like me? In California and several other states it is impossible to sue for medical malpractice. There is a very low limit to non re-compensable expenses like pain and suffering. And they limit how much a lawyer can get so only a really crappy desperate lawyer would take on a case. That is why I tried small claims and got screwed there too by a judge who did not know the law or chose to ignore it for her doctor friend.

A Bill, not a Spencer. Spencer is our rescued Maltese who runs our lives. He makes me take walks when I don't want to, but he is getting lazy, too.

My first name which I dropped is William so I am also a Bill. My dog Saffron a Standard Poodle goes for bike rides with me so I can not skip them as much as I feel like doing. We are getting a new Poodle soon so when Saffie is too old to take long walks Paprika will be ready.

Get a new Doctor! You should not feel this way! We have questions answered and if he has to he will get back to us with an answer. Prayers

Are you replying to spencoid (Spencer) or someone else. My MO is not terrible and my needs are not great, just getting injections. He does seem knowledgeable and basically a good doctor. I trust his advise in terms of treatments. It would be great if there were a better support staff especially for new patients. I will switch to UCSF if necessary. I think I have a follow up with Dr, Aggerwal in a month or so and will ask him about switching. Insurance seems to pay for as many doctors as I go to so I could get injections more locally and hopefully do phone visits.

Yes, my oncologist told me about side effects of ADT except - shrinkage of my junk. After six months of this I was embarrassed but I asked about my testicles and penis and I received "oh yes they will be PERMANANTLY smaller". That would have been great info in the beginning of treatment.

doc1947g profile image
doc1947g in reply to VCinTx

It was my RO who ordered my ADT (Eligard screwup by the nurse then Lupron Depot 45mg/24weeks) and my VMAT-RT 3Gy X 20 fx.He just mentionned about Heath Flushes.

Boob size A, penile and testicular shrinkage and Mood Swings were not mentionned.

Big surprise but HU gave me a lot of informations.

I have a fantastic Familly Doctor, a good urologist who transefered me to the Radio-Oncologist.

Lulu700 profile image
Lulu700 in reply to doc1947g

“Not mentioned” very true doc !👍

My doctor is inscrutable. But I'm still here.

Lulu700 profile image
Lulu700 in reply to monte1111

And I’m

Glad that you are! ❤️

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