Support for LateToSchool

Parent Cafe
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<p>I guess there are 3-4 issues.</p>

<p>The person who was referring you (even if it was a social referral from one doctor to another- ie, I am referring you someone I know who is not my patient) should have greased the way for you with a preparatory email, call, fax etc. I do this on a nearly daily basis. ‘Cold calls’ from potential patients are challenging to deal with because of hospital regulations among many other considerations. </p>

<p>The person who was referring you should not be burdening you with the outcome of their own error/confusion.</p>

<p>Bedside manner matters a lot in Oncology. The person’s ability to inspire you to hang tough matters. This is not the same thing as being polite about improperly handled referrals. If this oncologist might be an expert in your needs- it is worth pursuing. If this is just a generic ‘oh, I know a good oncologist’- then to lessen your burden right now I wouldn’t bother. </p>

<p>Over the course of a day when there are very sick patients, professional meetings, etc…etc…6 words from the doctor might have been a resolute response, not a casual or misthought reply. </p>

<p>Don’t replay, only move forward. If you still want to see this person, fax the records and forget about it-- the doctor will. If not, find the next person.</p>

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<p>LTS - I doubt there is “one” best oncologist that is available to the “connected”. Treatment protocols are somewhat standard, with some playing around of medication mixtures, etc. While oncologists can be a snarly bunch, as in all areas of life, if you are pleasant (within reason), a professional will respond professionally (within reason). If you and your Dr. have a good rapport, you will better be able to make decisions, feel in control, be psychologically stronger, which much research indicates effects the outcome. A Dr. who likes you will provide better treatment, despite your connections and the size of your portfolio.</p>

<p>As previously mentioned, litigation is at issue. If you are not a smoker, had a previous physical and was undiagnosed before the mets, M.D.s will be wary of that.</p>

<p>Malpractice in Florida is heavily slanted to favor the medical community. If that will be an issue, start exploring the legalities now.</p>

<p>If I was a Dr. concerned about litigation, I would not email. </p>

<p>Did you have a social worker assigned in your original hospital? She may be an enormous resource. </p>

<p>Hospice is not for the terminally ill only and can be a valuable resource, also.</p>

<p>While some find it valuable to have an online community for support, don’t rely on medical recommendations from strangers on the Internet.</p>

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<p>Correction - to be covered by Medicare (hence most major insurance companies), a prognosis of six months or left to live must be given by a physician. Also, the patient may not be seeking any curative treatment.</p>

<p>Justme50 - you may be referring to non-hospice palliative care, which some hospices also provide. Palliative care began in the hospice movement, but is not the same. There is a distint difference between the two, but while under hospice care, patients may not seek any curative treatment. In cases of cancer that cause unmanageable pain, radiation may be covered under hospice, but definitely not any chemotherapy.</p>

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<p>Agreed Teri. However, LTS isn’t old enough to be Medicare eligible. Hospice can provide resources (referrals, support groups) other than direct care, which is what I think you refer. Though they do have rules related to length of direct patient care, it is often arbitrary because a diagnosis can be arbitrary. However, I was recommending them only for information gathering.</p>

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<p>Catching up on this thread, my loving thoughts to LateToSchool, CountingDown and everyone else dealing with devastating and challenging medical conditions and other conditions, too.</p>

<p>May all of us be able find the appropriate help with need (no easy task) and find a way to allow the healing (and even harder job, as I personally know.)</p>

<p>Love to all,</p>

<p>And to cheers, you are always brilliant.</p>

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<p>No she isn’t, but because Medicare pretty much sets the standards for what the major insurance companies cover, that’s why it’s typically referred to. What I’ve observed in our agency is that we really don’t offer treatment resources because our care is so specific to the person who has chosen to forego any treatment. We often get referred to by support groups; our agency in particular gets many, many referrals from the large ALS clinic in the Chicago area. We definitely offer bereavement support groups, and when needed can provide early intervention for bereavement; our social workers can make lots of referrals for caregiver agencies and financial assistence (we have a foundation, so we do not turn down anyone, regardless of their ability to pay), but these take place only when a person has been given a diagnosis of six months or less. </p>

<p>But you are absolutely right about it being arbitrary. Hospice agencies have had patients on their services for two and three years. The criteria that Medicare looks for is that the patient shows a gradual decline in health, and does not seek any curative treatment. Also, hospices have discharged patients who stabilized, or who we were no longer able to document a decline for. This tends to happen more with the non-cancer illnesses such as dementia, COPD or CHF. We’ve also had patients with liver failure due to alcohol or drug abuse, who reach a certain time period of being clean, and want to pursue the transplant route. So it’s never, ever a done deal. But to be on hospice, one must show a decline and choose no treatment. Hospice agencies have been fined for keeping patients on their service without the documentation to support a patient’s decline. Hospice agencies are required to ‘certify’ a patient for care prior to coming on, then recertify them again after three months, then again every two months. It’s what Medicare requires (and again, most insurance companies) before they approve any further services. So although it is arbitrary, and many, many factors can play into how long a person lives with a terminal prognosis, there are checks and balances along the way to make sure it’s all on the up and up. I will also say, I’ve seen situations where a person is not recertifiable (meaning they have stabilized), but the doctor still really wants them on hospice services because of the support they provide, but we have to tell the doctors we can’t keep them on because they’re not meeting the criteria for decline.</p>

<p>So according to LTS’s lengthy description of the war she’s about to battle (I think we should rename her General LTS), she would not benefit at all from hospice services. LTS has had a crash course in the flaws of our health care system, which doesn’t surprise me since she states she has been so healthy all of her life. I’m reminded of one of Michael Moore’s TV interviews regarding the movie he made, Sicko (which I haven’t seen yet). In producing the film he was so disturbed by the state of our health care that he determined the best way to avoid our health care system was to stay healthy - so this all inspired him to adopt a new, healthier lifestyle. The observations that LTS has made in such a short time are disheartening, but are reality. HIPAA, JCAHO, Medicare and Medicaid dominate our policies; people who have been relatively healthy throughout their lives (or have not had a sick loved one requiring extensive medical care) are dumbfounded when they see what their health care providers charge, then see what the contracted reimbursements are. I wonder how some of them make a living with all of the malpractice insurance they also have to carry. I wish we could all live with blinders on (it would mean that we’re all healthy, too!), but somewhere, a major rehaul of our system will need to take place.</p>

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<p>Cheers, I could not possibly disagree with you more emphatically. </p>

<p>The most critical aspect of my survival is what happens between my ears. The most brilliant oncologist in the world - heck, and entire team of the most brilliant oncologists in the world cannot and will not successfully treat a patient who does not have the will to live, a positive attitude, and the ability to work with the physicians as a member of a cooperative team. </p>

<p>Sending a fax number in email with no other associated information is not a sign of brilliant geekyness or social ineptness or even poor bedside manner, it’s a sign of stupidity, disrespect, poor professional presence, laziness and even disregard for patient privacy and dignity in a world of identity theft and other ills. If a person can type six words, they can type 12 or 20 words and provide the rest of the information. No one in their right mind would fax their medical records to an isolated fax number provided in email with no other information, and I am not about to do so. </p>

<p>And, since it’s me, and not you, I think the offending party should send me not just flowers but an entire nursery. There are many, many doctors to choose from, and there is no need for me to spend any more time on this. </p>

<p>But even having said all of that, the doctor isn’t the problem. I actually have no issue with the doctor’s response. I sort of looked at it like, oh well, next, there are many other options. Almost too many. What I had issue with was the voicemail message from the original source. </p>

<p>My daughter came home and I told her what happened; she suggested I send an email to the original person (who left the voicemail message) saying, wow, if your relationship with this doctor is so tenuous and so fragile that a very polite email wrecked it and will cause endless fallout, it must not be a very strong relationship in the first place. </p>

<p>But, like rational people have suggested, I have already moved on. So I didn’t send any such email and I will spend no more time on this. There are more interesting, positive and productive people to talk to who are also outstanding doctors do not send silly emails or leave irrational, inappropriate voicemail messages.</p>

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<p>Good for you, LTS!</p>

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<p>I agree with you 100% LTS…ALL of my friends who have gone or are going through cancer treatment (unfortunately, the list is growing) have stated that THE most important factor in their recovery process is a good/caring relationship with their doctors. A friend in particular picked medical reputation over “fit” and had a bad experience. She is a survivor, but ended up switching doctors in the middle of a tratment. Like you said, there are many options out there, and you must find a doctor which meets all your criteria (great reputation and people skills).</p>

<p>Hang in there and don’t lower your standards!</p>

<p>The prayers are continuing…</p>

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<p>LTS:</p>

<p>Continued good wishes. It’s good to know your fighting spirits are working well!</p>

<p>And yet, I have to agree with both you and Cheers. I have had the good fortune to have surgeons and oncologists with superb bedside manners as well as top notch surgical skills. But that was once I got in face to face contact with them. The referrals, appointments, medical records were all handled by their secretaries and nurses.
What seems to have happened in this case was the short-circuiting of normal procedures for accepting a new patient. Normally, appointments and referrals are handled by the nursing/clerical staff, not the surgeon or oncologist. In this case, however, the oncologist himself was contacted by another doctor and the reply was “fax me the file” or words to that effect. This, I would take to mean “I’m willing to take on the patient or at least, to take a look at her file and determine whether it would be appropriate to take her case.”</p>

<p>You, however, reacted as a prospective client, wanting more information about the oncologist and not wanting to entrust your personal info to someone you did not know. Your concerns were entirely valid. But I suggest that the problem lies with the go-between who should have provided you with a great deal more info about the oncologist.</p>

<p>I agree with Cheers that, if faced with a brilliant oncologist with bad bedside manners and one that had great bedside manners but was only so-so, I’d go with the brilliant oncologist. I nearly got talked into having chemo by a smooth-talking oncologist who wanted me for his research. Luckily, I talked to another oncologist who told me that I did not even fit into the parameters of that experiment. Whew! That was 16 years ago. I don’t know if great oncologists are that thick on the ground that one can forgo one just because of an initial miscommunication. As for the go-between acquaintance, words fail to convey my dismay at that person’s behavior.</p>

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<p>Well said, Marite. Agreed that the go-between is the one who made the misstep by forwarding on the fax # (the # is probably to the doc) with no explanation to LTS, and is now mad because she got flack for it. Shame that LTS got caught up in this, but there are bigger fish to fry, and others to choose from if the oncologist isnt some world renouned guy (which it doesn’t sound like). Some docs will only take referrals from other docs (patients can’t self refer) so perhaps the onc ws assuming this is what was happening and asked the female doc for the records to review. Either way, it is a shame it didnt work out, and it sound like we are spending way more time on this than LTS is.</p>

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<p>Oncologist said only to not eat spicy foods. No problem there as I do not particularly LIKE spicy foods. </p>

<p>But, all my life I have been able to eat anything I want, and never worry about weight. Now, suddenly, I have had to make the decision that everything that I eat has to serve a militating purpose against cancer. In other words it either must be good for me AND bad for cancer in terms of nutritional value, or, darn it, it’s gotta be fun, happy food, shared with fun, happy people. Also, everything credible I’ve read stresses how very important it is to maintain weight, so, when I work out, I’m having to make sure to counter the anticipated caloric loss. </p>

<p>The good news is I’ve gained two pounds since diagnosis. :slight_smile: The bad news is that I’m eating really weird stuff. I discovered this morning that raw garlic can be painful if you get too much of it at one time. So I just polished off banana slices with raw garlic in between the slices. Hmmm, wondering how that might play out in cereal?</p>

<p>BTW, Marite, I do agree with you. As an aside, on pubmed.com, there are something like 17,000+ articles on my type of cancer, and I’ve slogged my way through about half of the abstracts. Some of them to my amazement (why should this amaze me though) describe situations where they just want people for studies, with no other interest in cure/improvement etc. I am glad your matter worked out well, and I am leary of those sorts of situations.</p>

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<p>Bananas and raw garlic.</p>

<p>Now that takes a fighting spirit:).</p>

<p>You go girl.</p>

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<p>Sometimes the studies with no interest in cure/improvement are rather painless studies to the patients, but of great interest to the researchers. For instance, someone on this thread earlier mentioned the miracle like qualities of Rituxon for lymphoma patients. Though early in my husbands treatment, it looked like the Rituxon worked great, and the prognosis was wonderful, in the end the lymphoma returned more virulent. So one study he was asked to sign for was a study that took slides from his original lymphoma cells, taken almost 2 years ago, to check for markers that might point out why the normal RICE treatment would not work. The tissue was taken ages ago, and all they needed was a signature. (Note to current lymphoma patients, the RICE treatments work the vast majority of the time. Don’t read into this post that Rituxon won’t work for you. It very likely will.)</p>

<p>The second study his is in is to test a non-chemo drug that is hoped to freeze or reduce the lymphoma masses enough to buy time to get to the bone marrow transplants. This drug obviously can only be tested on people who have exhausted all other avenues, and on whom chemo does not work. This is one of those times where having the onocologist who is actually keyed into these studies is the only answer. This drug is phase two. They are only taking 10 patients. For us it was pretty much the only option, and we are glad there was an option.</p>

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<p>UCDalum:</p>

<p>I agree with all you said. But oncologist 2 not only told me that 1. I did not need chemo. 2. I did not fit into the parameters of oncologist 1’s study but 3. he threatened to report oncologist 1. Sometimes, researchers are over-eager to acquire the required number of patients on whom to conduct their research that they stretch things a bit.
Chemo would not have been painless.</p>

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<p>LateToSchool: I know you have moved on, but I do have to say that your “friend” who dumped that fallout on you was totally inappropriate. She should have been able to easily absorb that without involving you or upsetting you.</p>

<p>You do have a right to expect people have more sensitivity than that.</p>

<p>Do garlic capsules work or does it have to be raw garlic?</p>

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<p>Maybe we should gather healthy Thanksgiving recipes for LTS. If you or D will be cooking of course that is. It’s fall. There’s beta carotene and bitter green vegetables everywhere:). Do you like brussels sprouts? I have a good recipe - the secret is to roast them and not boil them.</p>

<p>I know I’m nattering on here, but imagine we are a village, and there’s always someone who responds to emergencies with food and chatter. That’s me.</p>

<p>I love the idea that you are eating to treat yourself.</p>

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<p>One of my friends went to a totally anti cancer diet as a part of fighting prostate cancer. Evidently broccoli sprouts have great cancer-figting properties.</p>

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<p>Marite, absolutely, you did the right thing. We had several other doctors tell us they knew of no studies, but if we could find one with this type of drug, go for it. So when it was presented we jumped. I agree, always check with at least one other doctor for anything major.</p>

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<p>UCDAAlum82, I am very sorry that you and your husband have to go through this. I am glad that you have the trial option. </p>

<p>What to eat? Everything as close to its natural, uncooked state as possible. For some reason I was craving bananas in the hospital, and I ate like ten a day. Now I am down to five or six a day. No clue why. </p>

<p>On a far happier note, here is a little something guaranteed to make everyone’s day a bit brighter (Chinese Ballet Circus pas de deux troupe du Guangdong) - stunningly beautiful: </p>

<p><a href=“http://www.youtube.com/watch?v=N5lN96dgt_Y[/url]”>http://www.youtube.com/watch?v=N5lN96dgt_Y&lt;/a&gt;&lt;/p&gt;