This question could be generalized, to cover any concern about what treatments a doc might be willing or unwilling to pursue with a patient for ANY condition, but I was thinking more in terms of men with PC who are wondering if certain other docs might be more flexible than their current docs with off-label approaches.
Specifically, I am applying this to men who might have interest in low-dose or high-dose estrogen patches or in the use of TRT when trying to get T recovery after a period of ADT. It might also apply to men whose MOs absolutely refuse to prescribe anything like metformin or other off-label (or repurposed) meds and who then find their PCPs are also reluctant to prescribe. You might then fire one of the docs, if you were set on pursuing that treatment, but how would you screen potential new docs without hiring them first?
My diagnosing urologist has not really been involved in my treatment since my biopsy, as I moved on to an MO for bicalutamide, but my urologist probably would have been willing to prescribe it, too, even if reluctantly. However, he is unwilling to consider tE2 as a form of ADT in spite of the recent Lancet article. The only way I know this for sure is because he IS my doc and I could ask him directly.
His refusal was not surprising, as MOST docs are unwilling to consider tE2 as a form of ADT. (Or unwilling to consider any use of exogenous T, etc.) Perhaps some are even hesitant to prescribe low-dose tE2 to offset Lupron side effects, considering how few men on the forum appear to use it. But the question is, how would one confirm this without first becoming a patient of a new doc?
I realize the default answer to the specific issue of requesting tE2 as ADT is going to be "NO" or "MAYBE" (but really "no") for decades, because the value proposition you are proposing to the doc is, "How would you like to 1) go against the grain and against consensus, 2) prescribe off-label, 3) open yourself up to potential litigation or alienation in your group practice, and 4) make LESS money doing it?"
But going beyond that specific example: even if the answer is likely to be "no" I am having trouble figuring out how you might even get a chance to ask the question, or any other questions, for that matter. All practices seem to have gatekeepers, who let you know that you can learn anything you want about a doc and the potential non-standard treatment options he will or won't consider by FIRST becoming his patient. Are there any good tricks to getting answers first, and THEN becoming the patient of a doc (whose answers you like more)?
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When I was looking for an integrative medicine doc, I was using andrstenedione + chrysin. I didn't want to pay $100+ to each of the IM docs in the area & come up empty, so I emailed the guy who seemed most open-minded, explained what I was doing & asked if he was willing to work with me. He said yes & I have been with him for 15 years.
-Patrick
What I have done in the past is to ask before I confirm the appointment. Most of them will say, no the doctor needs to see you first. Then I let them know that I can't make an appointment until they answer my questions but that I understand that the answers do no guarantee me prescriptions. Usually, they still say no and I go elsewhere. Doesn't work very often but saves me sitting in a bunch of waiting rooms for no reason.
What I finally did was go to a TRT clinic and talked to the doctors there. And then I found an MO. She isn't going to write me T scripts. But the clinic does (after I showed them studies).
So, two docs. I think I pay about $500 a year for doctor services. $100 or so a month for meds. $250 a month for labs.
I have never talked to a doctor who refused to listen to real evidence presented for discussion, if the patient was willing to reciprocate. Since I believe in patient empowerment, I know that means patient takes more responsibility - the patient should be asking himself how he can do a better job of communicating his concerns and also of listening to the doctor's concerns. It's a two-way street.
One tip is to email links to articles in peer-reviewed journals in advance of the meeting with a cover note saying "I would like to discuss this at our next meeting." That gives the doctor time to review it and think about it. It is much better than putting him on the spot during an fraught encounter. Sometimes, it may come up during the meeting. In that case, I've found it best to simply say, "I'd like to email you a link about this" and leave it at that. But that works both ways. He may have seen something that you have not considered. There is no point in discussing an issue when you aren't working off of the same facts.
In a recent encounter, an MO refused to even consider a treatment that was different from an NCCN guideline. I sent him the AUA guideline, which was different. He explained that he was practicing at an NCCN hospital and was required to follow their guidelines. This seemed like a good answer to me, even though I explained why the AUA guideline was more appropriate for that particular patient. So I advised the patient to meet with a top-rate MO at a top-rate but non-NCCN hospital. The patient is much happier.
As for transdermal estrogen... It's important for the patient to acknowledge the doctor's concerns. If the doctor says that the early data looks promising but we need long-term data on safety and efficacy before we can be comfortable replacing it totally. He is absolutely right, and if the patient isn't a blockhead, he will acknowledge the truth of that. Acknowledging that may help the doctor understand that the patient does understand the risks. With mutual understanding, he may be more willing to prescribe it, at least as a supplemental therapy at first.
As for metformin, the current weight of the best evidence is that it is ineffective and it does have GI side effects. However, the STAMPEDE trial of it may change that in the future.
I've found very few doctors at teaching hospitals who are completely unwilling to try "outside-the-box" approaches, especially for the most advanced patients. But it does require careful attention to egos (both the patient's and the doctor's), and good listening skills.
Some good points, thank you. But regarding your first paragraph, that give-and-take sort of implies that you are able to HAVE a conversation. And my point is, is there any possible way to approximate that without FIRST becoming that doctor's patient? (With specific questions, I can only email the docs I already have, not the ones I am considering.)
It's sort of like getting married, THEN going on your first date. Or being bald and arriving for a blind date only to discover she never dates bald men. How can I find out IN ADVANCE that my doc doesn't date bald men?
Regarding tE2, let's compare PATCH to the trail that led to the approval of Relugolix. As far as I know, that took only a few years because once safety was established, "efficacy" of relugolix was simply assessed by the percentage of participants who achieved and maintained low testosterone level equal to castration. It was not a matter of needing to wait 10 or 20 years to compare long-term outcomes.
Am I missing something? Why are long term results needed for something used in different form for nearly a century (estrogen) but not needed for newer drugs that produce a castrate state? Why was Lupron allowed not just equal access but allowed to virtually replace surgical castration as the "gold standard" well short of the same sort of elapsed time that is being required for the study of tE2 efficacy?
I don't see how anyone could "know" so early on that Lupron would have long-term efficacy, as good as either DES or surgical castration, so far as PC progresssion and survival. It seems that it was assumed, based on the efficacy of achieving a castrate state. And I think that was a reasonable assumption, as it would seem now for tE2.
Like the rest of us, doctors expect to be paid for the work they do, even if it is for a second opinion. Also, a doctor should assess the patient before even consenting to prescribe anything. Any doctor who responds to such a mail-out is not the kind of doctor anyone should be interested in using. A proper response would be to schedule a paid in-person or televisit.
Relugolix is just an LHRH antagonist, just like Firmagon. It is just a new delivery method for an already approved class of medication. The primary endpoint of the trial was sustained testosterone suppression to castrate levels through 48 weeks. However, I do agree that follow-up was too brief to fully understand its long-term safety. The FDA is decidedly more lenient now than it has been in the past.
The LHRH agonist and anti-androgen class was approved because they were the only alternatives for a fatal disease, given that estrogen was causing deaths from blood clots.
Transdermal estrogen is a different sort of medication. Not only does it suppress testosterone, but it also activates the estrogen receptor. Because previous use of estrogen resulted in deaths from blood clots, there was concern about using such a medication. That's why this first toxicity report was so encouraging. The next hurdle is comparative oncological effectiveness. The primary endpoints of the trial are Progression-Free Survival and Overall Survival compared to LHRH agonists with at least 3 years of f/u. We're supposed to have results by August, so it won't be much longer. I am hopeful that results will be excellent, and FDA fast-track approval will follow.
I agree with your points, but this is not about getting a free consultation, a second opinion, or finding out if a doctor will be prescribe anything to a specific person, in advance of seeing him. It's about about whether a doc would BE LIKELY to even consider certain novel treatment options for ANYONE in general, not you specifically.
Obviously no doctor is going to say "you need to be castrate" to a specific man without first seeing him and his records, but it seems reasonable for a doctor to say as a general rule, "if I agree that a man needs to be castrate, these are the options that we do and do not have." How flexible and willing to change those options might that doctor be, if and when the science changes (and researchers deem the novel approach safe and reasonable)?
When the doc says "no, never that" then you know it is not an option. If he says "maybe that, it depends on the patient" then you may have some chance. This is all I'm wondering: how could one discover in advance if a given individual or group practice EVER considers certain options, or NEVER considers them? If you are intent on pursuing a certain treatment, it seems silly to become a patient of a doc just so you can hear the words "never that" and then say goodbye.
I doubt that any doctor at a top institution would give a generic answer to a non-patient. Why would they? But you may be able to find doctors in community practice who might.
Yes... but realize, I do not expect ANY doctor himself to answer specific or general questions about the nature of the practice, or his potential willingness to consider this, that or the other type of treatment. I am talking about calling the practice and having a lower-rung person on the administrative or medical staff engage in the slightest conversation beyond, "so, would you like to book an appointment?"
Perhaps I still think the business of medicine should be at least a little bit like other businesses that serve POTENTIAL customers, as well as existing ones. Imagine going into an auto dealership to ask about different models and being told, "we don't work for free... first buy a car, and THEN you can ask the service department all the questions you like."
No lower rung person can or should answer any for the doctor. You shouldn't trust what they say, anyway. I always tell patients to not ask nurses questions that the doctor should answer - it's an almost sure way to get misinformed. When a pharmaceutical company wishes to survey doctors on a subject, they pay for them to answer questions. When a company wants my opinion for a focus group, for example, they pay for me to answer their questions. Why would any professional with limited and valuable time, answer your questions without reimbursement?
Unlike a car, what you are paying for when you see a doctor is his expertise. When I was a high-paid consultant, they paid me $400/hr and could ask all the questions they wanted for that. I did not answer questions for free. My CV and reputation is why they came to me for answers. I didn't give away freebees. It is unreasonable for you to expect a doctor to do that either.
"When I was a high-paid consultant, they paid me $400/hr and could ask all the questions they wanted for that. "
And so if you were an expert consultant on wine and did some of your work for a wine shop, and if I called to see if the shop could secure a hard-to-find wine I desired, would you apply your consulting fee to that conversation? Would conveying the answer, "no, we can't get that for you" be an application of your expertise?
Not sure why you want to keep misrepresenting what I am looking for. I am NOT looking for the doctor's advice or expertise, specific to me. I am looking for a "yes' or "no" or "maybe" on some product or service I desire. (That answer is NOT the product or service itself.) And I am not looking for the answer on the spot, but only for a call back within a few days. Why would you think this so unreasonabkle?
If I call a great restaurant with a "yes' or "no" question about the menu, I do not expect to get the renowned head chef on the phone, or to get a tour of the kitchen or a free meal. I am NOT looking for the chef's time, produce, or expertise.
And when I say "lower-rung" all I mean is someone who is not the doctor, not necessarily the "lowest"and least knowledgeable person on staff. Sure, the dishwasher can answer the phone and may know nothing about the menu, but there are others falling between him and the head chef that might be of help. (A return call from one of them is two minutes of NON-expert's time.)
The supporting medical staff of doctors are just as inaccessible as the doctors themselves to prospective patients. Conversations are limited to the dishwashers until you pay for your meal. (Pay for the meal first, THEN see the menu or find out if you can order off-menu?)
Once again, you are trying to relate it to selling a product. Their expertise is not a physical product like cars or wine or a meal, it is a service. And you are asking for that service without the doctor being paid for it and without a full patient analysis. I don't think any doctor worth his salt would reply to you. I wouldn't if I were a doctor.
It is also a mistake to think that anyone on the doctor's staff could speak for him, and a very bad idea to even ask them to. Who do you think might know? A nurse practitioner? A resident? They may be able to handle very routine questions like, "should I take this pill with meals?" but they would only be guessing about non-SOC matters, and in my experience, they guess wrong.
I have found that looking at publications by a doctor, one can gauge personality and style to some extent. Find out from other people who have seen the doctor you are considering what their experience has been - but be aware that in order to be political people may not be totally honest about their experience. Sometimes you can get more direct and honest information through a PM instead of through posts on a forum. The internet really is a good place to start in trying to weed through potential doctors - the key is finding reliable sources with opinions you can trust. It is kind of an art form, which it takes awhile to develop, which is unfortunate given the time factor in wanting the right treatment NOW, but one has to start somewhere at some point in time sorting through the information that is out there. Usually you won't get an answer up front from a doctor or his office about a certain treatment unless you meet with that doctor first, but some doctors will have a set of patients who have been treated a certain way, and that information may be on Facebook or a blog or......research is your friend in this situation.
If only most docs were easy to email. In big centers they are, but many outside of those are not. The process of seeking other options can be very cumbersome.
Once you are his patient, there is usually a way to email short questions. But most doctors will ask you to schedule an appointment for an involved discussion.
In Canada, it is difficult to get a doctor's email. Our GP is really good although we email through the office (not directly) but GPs don't prescribe anything that we are interested in. The specialists do not tend to be available on email and if they are, it takes a long time to get any reply from anyone, if at all.
I think others have given excellent responses to your question. In line with Tall_Allen's suggestion about gathering articles that look promising to you for forwarding to a doctor, here's one on transdermal estrogen:
I had the same sort of question. I found out that my T was very low and was in for blood work to start TRT when that work turned up the rising PSA. So I had IGRT at a teaching hospital soon thereafter. The doctors at that teaching/research institution even told me that they would have had me on the TRT even during my PCa treatment. I had been on TRT for something like 7 years after my PCa treatments when unfortunately I had to leave that practice and find a new urologist to continue the TRT. It was pretty clear that no one in the Oncology or Urology departments of our community hospital had ever considered (or heard of) the revisionist work of Dr. Morgenthaler at Harvard. My approach to finding a doc willing to continue my TRT was to work through the Nurse Navigation staff at the hospital's cancer center. The nurses know the doctors well and have the access to go ask the question for you. Within two weeks the nurse navigator found me an urologist who has been supporting my TRT for an additional 8 years and has been willing to discuss and consider other research I have brought to him. Without that nurse's intercession I would have run out of insurance, cash, patience and energy before tracking down the right doc.
Excellent post. This gets to the heart of the matter. Prostate Cancer patients have so many treatment options. How indeed, do you find a practitioner who isn't afraid to go outside the box and really work with the patient? I don't know of any other cancer / disease that presents this same challenge.
Good question. I've never found that easy way. I've always had to get copies of records sent in, made an appointment, etc. I think the profession is designed that way to discourage switching doctors.
One of the FIRST things my DR. asked me was "Why did you have an Orchiectomy instead of ADT?" and then said that he would GET ME ON TESTOSTERONE right after his treatment procedure was done. Wife and I just anteed up for consult, listened and decided.
This is a great questions and most of the answers I've found helpful. Yes, you need to learn to use the internet like a New Yorker magazine fact checker. Yes, finding a source within an institution where the physician you want to talk with is working such a willing nurse can be invaluable. This has aided me getting to the doc I wanted to see. I've found that writing an old form letter to a physician with whom I want to consult has worked better than sending an email. Physicians seldom receive letters from anyone. Most communication is digital. Yes, expect to pay a consulting fee even to ask questions. Physicians do not consider themselves to be normal service personnel, and they've developed fragile egos. I've found that physicians dislike being questioned, and often take offense easily. Most physicians, like too many well educated professionals believe that they know - well everything even outside of their field of expertise - so be forewarned.
When you run out of patience with the chase, that's why some gents on this forum - some consider these men to be "blockheads" choose to do it themselves.
Many good perspectives here noahware. So you need to be both proactive and creative. Avoid a “corporate “ medical culture that limits Dr’s to following only one set of guidelines like NCCN. I once had to tell one early MO “assigned “ to me: “I can and have read the guidelines, that is not what I need from you.” We ended up working together but he knew he needed to consider emerging research and non toxic alternatives. And I was selective in what I told him. That approach would not work for everyone. When that doc retired I asked among the more experienced nursing staff “Which physician is the most up to date and progressive in how they treat prostate cancer?” They know.
Consider requesting something from a separate primary care physician. I do this for metformin. I told her that I had family history of type II DM and was worried that my ADT would make me at risk. Showing her the extensive safety data, she was fine with it.
You could even at a Naturopath to your team if you can find one who is responsible and willing to consider research relating to PC. Just avoid the crazies with cash-flow practices of quack procedures such as ozone, etc. Buyer beware. But they may be open to judicious hormone treatment such as estradiol cream or patches.
In order to get my current trial of high-dose intermittent TRT I had to go through hoops with my MO for six months. Many research articles and reviews sent and discussed. Finally he said I would have to 1) Get a urologist familiar with it to give a favorable 2nd opinion. I went to 4 and finally got a conditional Ok from one of the BAT research physicians in Seattle. And 2) Write and sign a consent statement for my chart including acknowledgment of all risks, known and unknown, including accelerating cancer and death.
So that is what I mean by being persistent and creative. But I wanted my MO to be on board with me. Otherwise I could have just purchased testosterone over the counter at any pharmacy in Mexico. Good luck.
I think Tall_Allen (as usual) has the definitive answer to your question.
I have two MOs, both of whom have seen my reaction to ADT: a completely miserable existence, crying uncontrollably and so violently that I can barely speak in their presence, and hoping for an immediate and painless death. One is totally doctrinaire. He refused to prescribe bicaludimide monotherapy and would refuse to prescribe anything other than the SoC (more Eligard when PSADT hits 10 months). The other would prescribe anything that makes any sense at all. We've discussed tE2, and she's fully on board.
I agree with Allen that it's a two-way street, but I would say that, after both doctor and patient truly listen to one another, it's the patient's call. In my case, the conversation goes, Doc: "tE2 isn't the SoC." Me: "I couldn't care less."
Granted, you have already proven that you tolerate standard ADT poorly. But you are exactly illustrating my dilemma, because even with that experience that you had, what do you think the odds are of anyone finding that sort of MO, or urologist? I am pretty sure they are not 50-50!
If I thought that making two appointments with two different MOs would yield a likely outcome of one of them being fully on board, I never would have written this post. Even with a prior bad experience, I suspect YOUR general odds would be closer to 10:1 and mine, with no prior ADT, maybe towards 100:1. (I am 0 for 5 over two years, so far, with a "maybe/probably" that is dragging out such that I have put it in the "zero" column.)
Do I know that I, too, will become depressed and suicidal if I go on Lupron? No, but with a history of depression I am not keen to find out. (I already know that I do not want the bone loss, weight gain, lipid changes, hot flashes and other things that I KNOW are in the SOC cards.)
At core, my question is: how might you know the potential disposition of either of your MOs before becoming a patient of theirs? Did you just get lucky in finding the flexible one, or were there clues beforehand? Is that WHY you chose her, or was the flexibility a result of your bad ADT experiences?
You have given me one idea to increase my odds, I think: female docs may be more likely to be flexible, compassionate and open-minded than male docs when they see a treatment is causing great suffering.
And of course, I am now wondering... who and where ARE these two MOs?
You raise a good question, but I have no way of knowing what the odds are. I asked the woman who would prescribe tE2 what the rules are, she said she could prescribe anything that has any valid chance of being effective. I'm sure she's right about that, but that doesn't mean all doctors WOULD do that, as we already know. She, btw, is Juliet Penn at Samsun in Santa Barbara.
I chose her essentially at random from the 3 people at the local clinic. When I first saw her, we were talking about bicaludimide monotherapy; I don't think I was aware of tE2 at the time.
Tall_Allen's right: you can contact prospective MOs in advance and feel them out on this. It's not like you're asking for voodoo; tE2 is very well-known at this point. I have a feeling that finding someone willing to prescribe it isn't as hard as you think. Just a hunch.
Finding the right kind of doctor is our concern right now. My husband would like to try and treat the primary but we will need a surgeon or radiologist to consult with as we do not know whether one or the other or both options might be suitable. Someone suggested a surgeon's name but when I looked him up, he has restrictions against his practice incl. performance of open RP. There is no way to find a specialist of each discipline who will look into the case as an individual one and give advice based on their expertise fairly and with an open mind after doing every reasonable test that takes into consideration all relevant data for that individual. I would very much like to know before my husband becomes a patient of a doctor where they stand on the issue of local treatment for metastatic patients as a general question.
Ask here for any references or info regarding doctors. I have noticed that many members are afraid to mention their doctor's name(s) and whether or not their doctor's meet their expectations. Some of us treat them like Gods... We are their customers (clients) and therefore we should have the balls to ask them questions before we employ them. Think of them like plumbers for your body.... Remember, sometimes they bury their mistakes....
I am taken aback by all the trouble you all are having getting info except maybe the work in institutions that have layers of staff tucking him away somewhere. I would have no qualms about asking a nurse a question to relay a question and I would probably get a response if I call someone and ask a question I would expect to get a reasonable answer from staff who would check with the doc or the hospital rules. If I asked whether the prescribe eligard I would expect an answer. You are not out of line to ask something like that. If you want to discuss whether he would prescibe it for you or discuss a paper that would be another matter. If I asked a gp if he did brain surgery I would expect to get response even if it is huh you've gotta be joking. Or I might have not understood what you are looking for.Mike
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Don’t know where I go from here.
Anyone know where to find organic sweet potato leaves or leaf extract?
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How long can medication be interrupted without serious effects?
