Support for LateToSchool

Parent Cafe
1061

<p>LTS, so sorry to hear it’s not going as well as we all hoped and prayed. It will get better. </p>

<p>And yes, you were right in firing the Miami guys. I’m always surprised at onocologists that either are in denial themselves or refuse to tell their patients the truth. A dear friend’s husband recently died after a fairly long illness. The doctor told her there was nothing else they could do ages ago, but NEVER told him, despite his wife pleading for him to. He had a lot of time, he didn’t understand the urgency to finish things up, and left many things hanging. </p>

<p>To everyone, is there an agency where you can file complaint against these kinds of doctors?</p>

1062

<p>You can file a complaint with your state’s Board of Medical Examiners (or whatever it is called in your state) but you will probably never know of the outcome. I filed such a complaint about a doctor who had very clearly been guilty of malpractice when treating my mother (in a very different situation from those being discussed here.) Without going into the gory details, due to my ignorance and blind trust of the awful doctor who was doing nothing to address an acute medical issue while she was hospitalized, she almost died. When I finally realized something was wrong and got a new doctor to treat her, he was able to identify and resolve her obvious problem in about one day, and she quickly recovered. The scary part was, all of the nurses at the hospital knew what was going on, but did not say anything to me until after I fired that awful doctor. As soon as the new doctor was treating my mom, they started making derogatory remarks about the first doctor (the incompetent one) to me. Apparently, their professional code includes not being allowed to alert family members to obvious malpractice, even if it is a matter of life and death. </p>

<p>A month or so after I filed my complaint, I received notice back from the state Board of Medical Examiners that my concerns were being investigated and about a year or more later I received a letter saying that the investigation had been completed and some of my concerns were valid and had been noted on the doctor’s record, but that no formal action had been taken against the doctor. The whole process is very secretive.</p>

<p>Sorry if this was a little off topic… and please allow me to join the many others who are sending their best wishes to Late to School, Keymom, and UCDAlumni82 as they deal with these difficult challenges in their lives. I am thinking of all of you each and every day.</p>

1063

<p>Yes, UCDAlumni82, I want you to know that your family is on the CC list prayer list for me.</p>

<p>The above post is very disturbing.</p>

1064

<p>Mythmom - In retrospect, I can’t believe I was so stupid. It was the first time I had the responsiblity of dealing with a serious medical crisis in a family member. And I have an advanced degree in a biomedical science :eek: Another interesting sidelight of my story … I have two cousins who are brothers who are both physicians (excellent specialists) and are both highly intelligent. I am on good terms but not extremely close to both of them, but did consult them for advice during my mother’s illness. The older one (who is a little bit of a know it all) absolutely refused to acknowledge that the awful doctor was doing anything wrong, based on the facts I told him. He basically told me that he refused to judge another physician based on someone else’s story, and he would not want someone else to do that to him. The other cousin, who is a lot more “human”, was horrified at my report and used very down to earth language which I can’t print in full here (e.g. What a @*$@#$ a–h— !!!" ) when I told him what was going on!</p>

1065

<p>Human beings devise so many rules to protect themselves. And then some just come through. So glad your mom was alright in the end. And it is scary how much we have to learn and advocate for ourselves.</p>

1066

<p>keymom,
Wishing you a complete and speedy healing…my list is getting longer, but it is a privilege to be a butterfly whisperer in all of this. All of us together make a difference.</p>

1067

<p>LTS, Hope you and your new onc have devised a new treatment strategy. Any chance of moving your MSK appointment up? Perhaps even sending your file through and arrange for a telephone consultation? A second opinion will be good at this point, especially at a site like MSK. </p>

<p>As a fall back, the NIH site at Bethesda has a range of expertise. PM me if you wish me to inquire whether there is such a specialist on site with whom you can seek a second opinion. </p>

<p>Now that I have read your WH post, I will always be on the lookout for you whenever I go near there.</p>

1068

<p>I’m another poster who started reading around post 800 or so and lurking. I’m guessing you have a huge silent majority rooting for you and following your journey and it looks like more and more are coming out of the woodwork. Along with everyone else, I am sending you good thoughts. </p>

<p>On the issue of reporting doctors to the medical board: last year a doctor was truly both negligent in practice and unbelievably abusive to my daughter while she was in recovery from an invasive medical procedure. I witnessed the abusive behavior and was furious that he did not do what he was supposed to do and by his behavior. I really wanted to report him. I knew that if I did, at the very least, his insurance company might order him to anger management. I called and spoke with an attorney who does advocacy for those with chronic illnesses. She advised me against it. Her reasoning was (and this had already occurred to me) that anyone with a chronic illness is going to be interfacing with the medical community for a long, long time. Doctors are people and people talk. I knew if I reported him, the word might get out within his specialty about this troublesome patient and it might be harder for her to get seen or treated fairly in our city. The attorney felt the risk was not worth it. It was not a life and death medical error – I might have made a different choice had it been out of concern for future patients, etc. – but it was an egregious one. I might also have made a different decision if it was a one-time medical need.</p>

1069

<p>I’m not upset or in a litigious mood re this doctor. I think he did a decent enough job as far as his baseline competence takes him. I think he is lacking in some very critical areas but I have no appetite for complaints, etc. </p>

<p>Interesting though, when we arrived here Wednesday evening we had dinner with a few very good friends; two of them lawyers. My daughter told them the story, and, they had some interesting, angry responses. I explained to them how I was so upset that I lost my appetite; to a person, these uber-conservative friends of mine who ordinarily won’t even jay-walk or exceed the speed limit offered to either procure or grow sufficient amounts of marijuana so that there aren’t any more appetite issues going forward.</p>

<p>Today’s doctor visit wasn’t great, in that, no magical cures arrived, not even any substantive words of encouragement or hope. I begin the second line Monday morning at 8:00 a.m. Median survival for this particular set of circumstances is five months (yes, I asked). Remission is still possible, but extremely unlikely. The best we can hope for is stable disease, and even that is a huge stretch. </p>

<p>The issue is that I have sensitive (progressive) disease, based on the radiologist’s report and comparison of the most recent scans to those immediately prior. This is never a good thing, obviously. My new doctor was very blunt, to the point and he said absolutely nothing that we welcomed hearing. </p>

<p>This is actually a good thing - for reasons I cannot explain, it almost feels better to have heard the worse possible scenario; I don’t know why, but, it’s somehow 100% worse to have had a doctor say “great news - the cancer is gone”, and then asking to see the piece of paper he’s getting the information from, and recognizing that he has reading comprehension problems, or, he’s delusional. My sense is that if my doctor of today tells me good news at some point in the future, he will be 100% believable. In my work, I have always taken an “under-promise, over-deliver” position and perhaps this will work out the same way. </p>

<p>As unvarished as this was, my daughter and I came away from the appointment agreeing that we liked him a lot. We cried afterwards, but, we still liked him. I doubt either of us can explain why. He is clearly very, very smart. You’d have to be, to have a veterinary degree on top of all the other degrees. His exams are very thorough; he appears to be all-science, all the time. And we sense on some level that if he starts to win, he’ll hang in for a full remission. </p>

<p>Some small glimmer of hope is still in play - he did say that there is almost a sort of discrepancy between the radiologist’s report, and my performance status. If you saw me today you would never imagine I am ill, and, all tests are terrific, etc. The report isn’t really logical in terms of how I appear clinically. I don’t get it and neither does he. Performance status might be the thing that allows me to win this. </p>

<p>There is also a bit of hope in that perhaps these new uptake areas on the report isn’t really cancer. There’s no comparison CT and he doesn’t have the original films because they didn’t arrive out of Miami yet; he didn’t say this to me specifically but I can imagine that it might explain how someone can have a performance status that seems conflictive with a PET scan report.</p>

1070

<p>Keymom, thank you for your kind post. I add my voice to those wishing you the best possible and fastest possible recovery. You are in my prayers.</p>

1071

<p>I’m with you; I’d much rather deal with blunt and truthful people than sugar-coaters, for exactly the reason you describe. I am glad you have found such a doctor, in whom you can have absolute faith. Full steam ahead!!</p>

1072

<p>UCDAlum82, thank you for your post, I have been thinking of you so much and wish all were better. Please let us know what your daughter decides…</p>

1073

<p>Padad, thank you for that - I will send to you a PM later. I wonder though about MSK. The standard of care for small cell extensive is pretty clear, at least in the first and second lines. It’s when it gets further along that things seem to diverge. Honestly, I have been wondering if it even makes sense to keep the MSK appointment. I could be wrong but I do not see where they have any sort of therapy or regiment exclusive to their facility. I do know that Krug has an outstanding reputation as a clinician but his tools are going to be the same as everyone else’s. And as far as access to clinical trials, his patients have to hunt down their own just like everyone else. Could I be missing something here??? - please jump in and correct me if I’m wrong. </p>

<p>On the other hand, NIH could be very interesting. I spoke to them last week or the week before- cannot remember - they’re supposed to have a vaccine trial available in another month. </p>

<p>It’s sort of frustrating because with a cancer this aggressive there isn’t a lot of time to do research and make decisions.</p>

1074

<p>lts</p>

<p>I’m so glad to hear that you’ve found a Dr whose candor you can trust.</p>

<p>One of the participants on the radio show I mentioned in an earlier post had been given, I believe, a 5 or 6 month prognosis for advanced liver cancer and was still alive and doing well 6 or 8 years later. Some people do beat the odds and we’re all here praying you’ll be one of them.</p>

1075

<p>LTS, I don’t often post but am glad you’ve found an oncologist in DC whom you trust. DH is an oncologist and is very involved with his patients (and their families) medically and emotionally. Even though he trained in DC, we knew few people who were treated at NIH. Recently the DH of a very close friend went to NIH for liver cancer; they raved about the doctors and level of care they received. Thinking of you and your daughter.</p>

1076

<p>Correction to post #1076–I believe it was advanced lung cancer, though another participant also had advanced liver cancer and was far outliving the prognosis.</p>

1077

<p>On another topic, I do have a question for those in the medical field. In my line of work, I am very, very exacting. When a client buys something, the specifications and the reporting information is very exacting and it is spelled out the exact same way for all clients. Example, if I write a contract for a widget, the color, size, shape, duration, etc., everything about the widget is very clear, and, the record keeping and documenting is 100% the same for all clients at all times. </p>

<p>Comparatively, why are PET and CT reports written out like creative writing exercises? I have two written by the same radiologist mere weeks apart, and he addresses some things on one but not on the other and vice versa… </p>

<p>For example, the first report says things like “the patient’s second head, seventh leg, ninth foot, eighth hand, and fourth arm are all clear and unremarkable”, but, the second report issued weeks later by the same radiologist does not mention these other parts at all. Does that mean those parts remain clear and unremarkable? Or did he look at them at all? Or are they suddenly cancerous too, and he forgot to document the new cancer in the report? Or did the body parts themselves disappear into thin air? </p>

<p>There are several examples of this between the two reports. Another example is a small non-threatening cyst - he mentions it in one, but not the other. Yet another example is the first report says “no pleural effusion” but the second one does not address this at all. Does this mean I do in fact now have a pleural effusion, but he didn’t wish to say so? Perhaps too much bad news in one day??? What I don’t understand is if a radiologist reports on certain areas of physiology, especially if the remarks are that the areas are clear and unremarkable, why aren’t these areas addressed consistent in ALL reports? It seems like a radiologist can just sort of free-form write whatever s/he sees, and then also leave certain things out, at will, or depending on the mood they’re in on that day? Why isn’t there a situation like a flowchart, so that the radiologist addresses all relevant body parts in a logical sequence? </p>

<p>(In my business, if we were to address things like pleural effusion [thanking every diety named we do not do this], we would address it in every report, for every client, at all times.) </p>

<p>Thanks in advance for any responses; I would very much like to know if this sort of writing is normal…</p>

1078

<p>Bethievt, thank you, that helps more than you can imagine…</p>

1079

<p>[The</a> Cancer Monologue Project - Testimonials](<a href=“http://www.lifemonologue.org/id4.html]The”>http://www.lifemonologue.org/id4.html)</p>

<p>[Amazon.com:</a> The Cancer Monologue Project: Books: Tanya Taylor](<a href=“http://www.amazon.com/Cancer-Monologue-Project-Tanya-Taylor/dp/1931561222]Amazon.com:”>http://www.amazon.com/Cancer-Monologue-Project-Tanya-Taylor/dp/1931561222)</p>

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<p>An on-line review:</p>

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1080

<p>It is likely a transcript from an oral dictation. Pleural effusion, whether present or absent, will be noted in the first report since it is a classification of subtype. If its absent in a second scan, it is not mentioned again. Presumably, something was also said on the brain in the first report but will not be there if there hasn’t been a change in status. Scan reading is still much of an art than an exact science. Nonetheless, they will not deliberately leave out anything that would be improtant</p>