<p>ROTFL @ Calmom. I am afraid I am still the same republican. But I am having some difficulty with this and it is unacceptable to me. And I’m going to do something about it, if I can just figure out what to do.</p>
<p>OK, well if you change your mind, you can go online and check out the various Democratic proposals for health care reform… at least I think we are in agreement that the current system is broken.</p>
<p>Calmom, it’s bigger than politics, or at least that is my sense so far. I think it has to be a combination of legislation, private industry, faith-based support, and, equally important, people taking personal responsibility. </p>
<p>As to the personal responsibility part, I was driving somewhere this week, heard on NPR bits and pieces of a program - bottom line, a woman had her medicare cancelled for some reason or another (state eligibility); the NPR interviewer asked “how many children do you have, and how old are they?” and the woman answered, “I have a 12 year old, a ten year old, a five year old, and I have a 10 month old. And the reason I have a 10 month old is because my birth control pills are no longer covered by medicare”. </p>
<p>I thought to myself, um, NO, you have a 10 month old because, unless there’s a rape claim here we haven’t heard yet, you made the decision to have sex without protection. Period. You do NOT have a 10 month old child because some government program didn’t pay for your birth control bills. Raise your voice about the broken system, fair enough, but, take responsibility for YOUR actions, too. </p>
<p>Same is true with some other expensive health care issues. You’d be amazed how many stories I had read on line about people diagnosed with lung cancer who continue to smoke cigarettes, even as their insurance companies are paying out massive claims and their oncologists are working hard to save their lives. Incredible, that. Just simply amazing. Almost impossible to imagine. </p>
<p>Then, of course, you have the majority - these cancers and other serious illnesses where the inflicted did NOTHING to contribute to their circumstances - it just strikes out of the blue. But of course there is genetic testing and this and that - and the insurance companies will not pay for any of it.</p>
<p>Unfortunately the line of personal responsibility is blurry, and constantly getting more so.</p>
<p>wolfpiper: I hate being someone to minimize the positive outcomes of cancer survivors, but it should be noted that advanced metastatic testicular cancer actually has a 60%-85% cure rate; it is one of the most successfully treated cancers today.</p>
<p>My H and I went out to eat last night, and the Rascall Flatts song “Stand” came on the car radio. It reminded me so much of LTS, I just had to post it. Here is the chorus:</p>
<p>'Cause when push comes to shove
You taste what your made of
You might bend 'til you break
'Cause it’s all you can take
On your knees you look up
Decide you’ve had enough
You get mad, you get strong
Wipe you hands, shake it off
Then you stand, then you stand</p>
<p>(Here’s the video:)
<a href=“http://www.youtube.com/watch?v=v8zWb0-pCbQ[/url]”>http://www.youtube.com/watch?v=v8zWb0-pCbQ</a></p>
<p>Binx…thanks for that, it’s a very nice song. </p>
<p>I am so amazed right now - I wonder if anyone can imagine this scenario:</p>
<p>In the process of deciding which institutions and physicians to approach for a second opinion or to at least make a comparison of treatment options, facilities, etc., I made a list of 10 places, and have been narrowing it down ever since. </p>
<p>One of those places is a competing medical facility here in Miami. I included them on my list because, well, they’re here, and, they do have a reasonably o.k. reputation, although they are not a major cancer center. </p>
<p>My daughter happens to “know” a woman who is a physician, a cancer specialist, and also a thyroid cancer survivor, whose father is a local oncologist, and, who “knows” people at this medical facility. So, she asked the woman if she knew anyone at this facility. The result is that the woman sent an email to a doctor, and the doctor send a six-word email reply: “please fax medical records to xxx-xxx-xxxx”. Then, the woman forwarded the email to my daughter, who in turn forwarded it to me. </p>
<p>So, I’m looking at this email, and thinking, hmmm. I have a fax number and no other information. Not a name, not even a way to verify that this is in fact a fax number to an actual medical facility, and not, say, for example, a typographical error resulting in a fax number to, say, the local pet shampoo parlor, or perhaps a cuban cigar club, or perhaps even the Miami zoo.</p>
<p>So I did what I believe any rational person who has a serious disease might do: I forwarded the email thread back to the doctor, and, after a very brief introduction explaining that I am the person with cancer, thanked her for providing the fax number, and explained that I have called the correct office of the medical facility twice in the past week but have not yet received a returned telephone call, and that I have searched the institution’s web site extensively and could not locate any additional information, I asked two questions: could she point me to a resource that will provide some information on the facility’s treatment and professional expertise specific to my particular diagnosis, since I am trying to evaluate options, and, could she please tell me the name of the office and/or person within the facility, as well as the primary telephone number that relates to the fax number she provided? </p>
<p>I closed my email - which contained fewer than 100 words - by thanking her in advance for any assistance she could offer. </p>
<p>I received a brief reply this morning: she does not have the information I am looking for. If I want to be considered as a patient I need to fax my records. That’s it - that’s all she said. So I thought, o.k., so, you’re busy, you’re the wrong person, I’m not taking it personally, this is dead on arrival, pardon the pun. </p>
<p>But that’s not the astonishing part. The astonishing part is that the woman who originally emailed the doctor on my behalf left a voicemail for me this morning. I did a very, very bad thing, her voicemail said. The doctor is very, very upset that she received an email from me. She is going to endure the “fallout” from that for a very long. The email to the doctor was never, ever intended for me to be sending direct emails. My sending an email really hurt her relationship with this person. I need to understand that doctors do not like to receive emails, especially unsolicited emails from complete strangers. This is really going to cost her, professionally, as she will have to pay the price for this now…</p>
<p>Amazing. Just simply amazing.</p>
<p>Good grief. As far as I’m concerned, you have MUCH more important things to worry about now that this doctor having a hissy fit, and the woman who left you the voicemail should know that, too. I agree that just sending all your medical records to some unknown fax number was a bit too much to ask. Just turn the page, and move on. There’s not enough time in anyone’s life to deal with this silliness, IMO.</p>
<p>Shaking my head, speechless…</p>
<p>gads, I just hate that attitude that “oh, my time is so much more valuable than yours, so please don’t bother me.”<br>
Sheesh.
Well, I guess that’s a good way to eliminate that jerk.</p>
<p>Actually, I’m not as appalled at the doctor as I am at the “friend of a friend”. I can make many excuses for the doctor:
a) Many excellent specialists have lousy bed-side manners.
b) Insurance doesn’t cover time spent convincing someone to “pick me, pick me.” If the doctor felt he/she was doing a favor being willing to even look at the records, then being asked to prove oneself may have not been part of the bargain.
c) We have only the other lady’s report of how the doctor felt. (After all, the doctor did answer the email. If he/she was all that mad, why answer at all?)</p>
<p>Not that those excuses justify, but they might mitigate.</p>
<p>It is the other lady’s response that shocks me. Life is too short to get involved in pettiness. Otherwise, I’d be inclined to report back to the doctor that you understood from this lady that you have committed a grievous sin in the course of trying to live, and humbly apologize. And I would call the lady back and tell her that you released your phone number for support calls only, and that her call did not qualify, and you would appreciate her not using your number for that purpose.</p>
<p>But as I said, life is too short to waste energy on idiots. So hopefully venting here has felt as good to you as this just did for me.</p>
<p>LTS,
I’m with astrophysics mom on this one. Turn the page, move on, and don’t waste another brain cell on it. If the doctor was truly “upset” about receiving the email directly from a prospective patient, the doc’s computer probably has a “delete” button on it. Give me a break!</p>
<p>It’s the other lady’s response - her voicemail message - that shocks me as well. Especially considering that she is a thyroid cancer survivor, a doctor herself, and her father is an oncologist. Surely she must realize that someone would have to be barking mad to fax medical records off to a fax number provided via email - with no ability to even repeat the number or confirm it - and there is no other accompanying information. Every where else my records have been sent, I have the full name of a person, their title, their telephone number (so I have the ability to follow up to verify my records were received), their institutional name and department, and their full mailing address, for radiology CDs, which this doctor did not even request. </p>
<p>But beyond that how petty do you have to be to come unglued over the status of your professional relationship, considering the person who supposedly “caused” it is fighting such a monstrous disease. In my experience most rational people will try to be proactive in helping themselves and so how can my email have possibly caused so much grief…</p>
<p>O.K., moving on now…</p>
<p>Good points, binx. And there does sound like there may have been some miscommunication issues as well. I fully agree, and have to wonder what the friend might have said when she first contacted the oncologist (sounds like it was a friend of her father, if I follow you correctly, LTS). Perhaps she only said she was calling for, or referring, the mother of an associate. Sometimes a stronger “I really need your help for a personal friend, whose mom has been recently diagnosed with an aggressive cancer, and I would greatly appreciate calling in a favor” gets a better response. </p>
<p>I am NOT making excuses for boorish behavior of some doctors, but there are times where patients, or potential patients want to discuss their issues on the phone (or via email), then, after time is spent with them, they say they cant come in for any of a variety of reasons, and ask for referrals. Then, after they are provided with referrals, they call back, say those drs are either not on their insurance plan or don’t have an appointment soon enough, so can you give them more referral names. And it goes on. This can be quite time consuming for well-meaning doctors, and maybe the oncologist has had a bad experience with this. Maybe the oncologist wanted to see if he/she was the right specialist for the case, and was willing to review the records, and maybe assumed that because he was responding back (I assume) to the doctor friend of LTS’s dau to forward the records, he assumed that the fax # would have been familiar to the Dr (though perhaps not explained when the msg was forwarded on to LTS). I hope I am making my thinking clear. My guess is that the friend of the dau’s forwarded on the email she received from the doc on to LTS’s dau who forwarded it to LTS, and she didnt explain anything further in her email to LTS’s dau., so this left LTS with questions. LTS went directly to the source of the original email, and maybe the oncologist was not happy with the lady for forwarding his information on directly to LTS without permission. So, maybe the snafoo has left a bad taste in LTS’s mouth such that it is time to move on, but the flip side of that is that maybe this oncologist is decent and certainly convenient , being in Miami. I would go ahead and forward the records and see if he/she can be of help. Don’t let the boo boo by the friend of your daus stop your potentially getting good care close to home. Hope this helps.</p>
<p>LTS, That is ridiculous. When we had a relative undergoing diagnosis and treatment for cancer, 2 family members emailed his doctor. In fact it was through an email, such as one you described, that this doctor was found. The doctor was not angry, but very helpful. Afterall, this is life’s work. He wants to help cancer patients. He emailed our family many times throughout treatment. He could not have been more helpful or kinder. Not all doctors are like the one you came across. I would not worry about it. You are only trying to get in touch with the people who are most likely to help you. Frankly, you don’t need to deal with personality conflicts. The woman who left that message for you is a selfish moron, docotor or not. Who cares? She has no compassion. Forget about her and move on. You should not need to waste another second trying to educate this lady about caring for others, her self centered concerns, etc. She should know better, but some people never learn.</p>
<p>Unfortunately I have seen over and over again some of the best Dr’s in a field who have horrible patient communication skills. Also many of them are so confident in themselves that they do not welcome patients who question them. I have a good friend whose spouse is a top Dr in his field. He is the least friendly person I know. If the time came when I needed his skill I would have to be willing to work with someone who is difficult but know the medical care would be top notch.
What we have also experienced is that a referral from either another Dr or someone who knows a Dr can go a long way in making things happen much sooner. We have had cases where the wait time for an app goes from 6 months to I can fit you in tomorrow after a well place phone call.
It looks like in your case the person who phoned you also has some poor personal communication skills.
If the Dr in the Miami area is known as a great Dr I would go ahead and send the records. It is also possible the fax number you were given is a direct fax to the dr versus to the office or medical center.</p>
<p>Knowing many academic physicians and the absolute gravity of your situation, I have a different take.</p>
<p>lts…take ten deep breaths. Fact: High end academic oncology is not a particularily social environment.</p>
<p>The absolutely CRITICAL aspect to your survival–your survival!– is the sheer mental brilliance of some oncologist somewhere. Your survival does not depend on that oncologist’s ability to read social cues and respond with grace. You may hate to hear this, but from an former patient advocate who has lots of friends in the world of high end academic medicine, you are applying the wrong set of judgement critieria. That could be a deadly mistake.</p>
<p>Think.</p>
<p>Who are these academic oncologists out on the frontier of curing cancer? They are former CC kids who lived and breathed SCIENCE and math. Geeks. Geniuses. Borderline Aspies. Where have they lived for the last coupla decades? Inside the health care system, the one that you have discovered is a nightmare. </p>
<p>Think what that must be like. To live there–for decades. To cure us. </p>
<p>You can continue to insist that these science geniuses demonstrate sufficient ability to read social cues as the prerequisite to treating you. However, you could miss out on the anti-social genius who will save your life. REPEAT: SAVE YOUR LIFE.</p>
<p>The best neurologist I ever met? Zed in the social department. Less than zed. The best cardiologist? The one who takes the call and runs for his car keys? Refuses to do chit chat. Hates it. The nurse who worked at Sloan Kettering? Wasted after ten years of absorbing the grief of major cancer cases. Beyond wasted. </p>
<p>So…if it were me and I inadvertently insulted an oncologist I don’t understand, at all, I would fax my records and send an apology–probably flowers with my records. I’d much rather have her possibly brilliant analysis than an intact sense of social propriety.</p>
<p>Going forward? I would vent my frustrations to my friends while trying to cope with the decidedly anti-social aspects of high-end academic oncology–on the off chance that my ability to cope could very well be the 10% ticket I need to save my life.</p>
<p>That would be me.</p>
<p>cheers, you are right, but there are excellent docs out there are that do have okay to very good social skills too. The one that worked with our family is an expert in his field and works at Sloan. He does take emails, and writes them too. He even take phone calls and time with a family. Can you imagine that!</p>
<p>cheers-
Your post is SPOT ON! Great job!! Sure, its nice if a doctor has both the permission and the time to communicate via emails. (Sometimes this communication is actually handled by a PA or a nurse, not the Doc). In this day and age of HIPAA guidelines for protected healthcare information (PHI) and litiginous clients all over the place, many Drs have just had to be overly cautious when it comes to communicating with patients or potential patients. There have been law suits when there was a perceived “implied doctor-patient relationship” simply because the doctor spoke to the person on the phone, even though the person never set foot in their office. Sorry to look at it from a CYA standpoint, but this stuff really happens. </p>
<p>In LTS’s case, I think the communication snafoo was more likely a miscommunication, with emails being forwarded from people who knew each other (the 2 Drs), and hence needed little info to be communicated, to people who didnt know the docs (her dau and LTS). It is certainly fixable, if desired. </p>
<p>I TOTALLY agree with Cheers. When I was in grad school , my then bf’s mother needed neurosurgery. It helped that I was at a U medical center and had a relationship with the neurology and neurosurgery dept. The doc we chose, who was the best doc for the job, was a nerdy guy who spent hours practicing his microsurgery under a microscope rather than come out to the bar and have a drink with his residents. THAT was the best choice. Would it have helped if he had a better bedside manner? Sure. Was it essential. No. I know plenty of docs with great bedside manner who arent the best docs. After all, the old joke is --“what do you call the person who graduates last in his medical school class” Answer:“Doctor”.</p>
<p>Dealing with a potentially life-threatening illness requires emotional and physical energy, and having a good relationship with the treatment team is helpful. Facing a serious , potentially fatal illness sets off a grief response, and the first part, after shock/disbelief, is anger. This is normal. It might be helpful to read some of Elizabeth Kubler Ross’s books on the stages of grief. It can be very helpful. </p>
<p>LTS, we all hope you know that we are hoping for the best for you. Thanks for allowing us to share in your journey, and to provide support and caring. Hopefully some of what we say is helpful for you.</p>
<p>jym, thanks for brining up the HIPAA concerns. My husband is on a clinical trial. All emails are through the PA of the onocologist or the clinical trial coordinator. The clinical trial doctor is young and enthusiatic and has mentioned he is annoyed by the forwarding that is required to go on between himself and his patients, but it is required by the hospital/medical center/labs. Perhaps, in LTS’s case, the doctor was not at all annoyed, but the PA or nurse that did not do his or her gatekeeping duties was annoyed, and insisted the breach of protocol on the dau friend be put in her records.</p>