Guest guest Posted March 19, 2005 Report Share Posted March 19, 2005 Hi , That sounds frustrating! Keep in mind that most states, if not all now, have laws in place that explain what rights patients have for getting copies of their medical records. You may have to go through MSKCC's records department - give them a ring and see what they require. Usually you just write a letter with the dates of the records you want, what kinds of records you want (I generally cover everything by stating something like copies of all lab reports, doctors' notes, imaging studies, bone marrow exams, blood work, etc.) and the purpose for which you want them. Most institutions are allowed, by state law, to charge $X amount per page they must copy. (Where I am, I get around this by stating that the records are for use by a physician at another institution, so I don't have to pay the copying fees.) I have also found that simply requesting a copy of the blood work or exams when I see my doctor also works just fine - the nurse or someone else can easily print a copy. But you must request this. If you forget to request it, take a notebook with you and write down everything you want to go over during the visit, including requests for records. Just don't forget to look over the notebook! :-) As far as requiring bone marrow exams more frequently than you desire: Talk to your doctor about this. It's your body, your decision. Also, institutions must have in place rules regarding research. In some cases, for instance, when you first become a patient somewhere, among all the paperwork you fill out you might fill out a form about consenting or not consenting to have samples of your " stuff " used in research. You should find out if you did this. You can always change your mind one way or another. They can't use your samples in research without your consent. In any case, if you don't want something done to you (eg, bone marrow), don't do it. A doctor cannot make you do something you don't want to do. Still, I highly doubt any institution, no matter whether you've given consent or not, is going to try to force you to have more frequent exams than necessary simply so they can get research samples from you. You really do need to be an advocate for yourself. If you directly ask your doctors for copies of your records and they flat-out refuse, take it up with the medical records department. They cannot, by law, refuse you. If you can't seem to get your doctor to take time to answer all of your questions for you, schedule an additional appointment simply to discuss these issues. Unfortunately, because of insurance and hospital pressures, many doctors are allotted only a few minutes with their patients, sometimes less than 15. But most will allow you to schedule an extra appointment simply for discussion. They just aren't able to take the time during their normal schedule because it would create a tremendous backlog. Hope this helps. Sorry it got so long-winded. jennifer g. ======================================= You can make a difference today in the life of a cancer patient tomorrow. Please support the Leukemia Society with your donation: http://www.cmlsupport.com/seejenrun.htm ======================================= [ ] MSKCC's qpcr Dr. and others: I have some questions regarding the disorganization of MSKCC's lab and their qpcr results. If you can give me further information about your feelings in this matter, I'd appreciate it. I was at Sloan last week. I asked for all the paperwork of my results from my Feb. bma. When I got home, I realized they failed to give me the qpcr. I have had a difficult time getting the paperwork on that in the past. I feel like they don't want to give it and barely want to discuss it. I do know the results were 0.005% (because I asked) , but why can't I have the paperwork? I know, I should have carefully looked at the papers before I left. Unfortunately, I didn't realize this until I got home. I'm also disappointed that they still want me to have bma's every three months even though I'm at zero and was diagnosed over 14 mos. ago. I wonder if they want me to go through this procedure every three months for their own research or for my own benefit. What do you think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Hi , > Date: Sat, 19 Mar 2005 11:27:03 EST > From: nchando@... > Subject: MSKCC's qpcr > > Dr. and others: I have some questions regarding the disorganization > of MSKCC's lab and their qpcr results. If you can give me further > information about your feelings in this matter, I'd appreciate it. I was at > Sloan last week. I asked for all the paperwork of my results from my Feb. > bma. When I got home, I realized they failed to give me the qpcr. I have > had a difficult time getting the paperwork on that in the past. I feel like > they don't want to give it and barely want to discuss it. I do know the > results were 0.005% (because I asked), but why can't I have the paperwork? > I know, I should have carefully looked at the papers before I left. > Unfortunately, I didn't realize this until I got home. I'm also disappointed > that they still want me to have bma's every three months even though I'm at > zero and was diagnosed over 14 mos. ago. I wonder if they want me to go > through this procedure every three months for their own research or for my > own benefit. What do you think? You raise a couple of good issues here. First, why does the MSK lab seem so disorganized? I'm afraid I've been unable to gain any special insight here; it's been that way ever since I started going there in 11/00, and has gotten neither better nor worse. Having been out of clinical practice since '96, and never having practiced in NYC, I'm also not sure whether MSK's lab is much different from other labs in NY or in New England. I do know that the state of error control, hospital record keeping and communication with patients is shockingly bad around the US in general, and my sense is that this has gotten worse over the past few years, despite much increased attention to the problem by the major medical societies and by the media. Medical practices now give greater lip service to " patient empowerment, " but as far as I can tell, little is really done about it. Basically, in centers where the culture has not swung decisively toward shared decision making by patients and doctors, the most effective way of getting your information is by making a nuisance of yourself - making your desire for complete information clear whenever you see your doctor, and calling your doc's office before and after each visit to reinforce this. This even holds true in my case, and I'm a doc myself. Of course, this just addresses the matter of communication of results. The unreliability of MSK in even running the right tests in the first place is another pet peeve of mine. Mostly I blame the lab, but there are times when I sense that my doc and of his office staff may also be at fault. Much as I like them personally, I'm thinking I may try a different center, as I wrote previouslyh. It's true that New York City medicine is rather famous for dysfunctional tensions between the professional and non-professional hospital staff, which make hospital stays unpleasant as well as potentially dangerous to patients. I thought it might be different in the MSK outpatient departments, but I'm not so sure. I'm hoping that, say, DFC in Boston, might be a bit better. The other issue from your post is frequency of BMA's. I believe it's still pretty standard to do BMA's on each visit for the first 12-18 months, and this is probably the protocol your doc is following, but it's not at all clear to me why they need to stick with that in your case, where you reached PCRU so quickly. Again, this is something I'd ask your doc, and if he can't give you a clearly reasoned explanation of the advantages to you, then you might just ask them to stop. This is your right, after all - you can always refuse any medical procedure. I hope this longwinded answer is of some help to you. Yours, R PS - I see that also addressed your questions - with some great insights, as always. Hi - nice to see you here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Hello , and , I'd like to chime in on this topic as I also go to MSKCC and have PCR's. It is quite a concern to me to read what is going on at MSKCC. I pay pretty much " top Dollar " to go there as I do not have insurance coverage in the states - I am a self payor. This means that a QPCR that costs you about $500 on your insurance costs me about $1200.00 Canadian. It is disappointing to hear their techniques are so questionable. My experience is differnt that yours . I usually receive a fax or e-mail of my results in less than two weeks after the test is done. The weird thing is that much like , who likes the staff, people and his doctor at MSKCC, I am in the same boat here in Montreal. I like the staff, they know my name we chat and they do seem to give me preferential treatment (which isn't necessary at all, but it is a nice touch - I do bring them lots of gifts and stuff;- ) )! But, I cannot always realy on getting the results as quickly as I'd like and I only get the printed results when I am collecting the information to take with me to Sloan. According to results I have received from both MSKCC and the RVH, I am PCRU. But now I wonder what that means. On the other hand I have been selected to participate in a clinical trial for patients who are stuck between CCCR and MMR (major molecular response - new term that some of the experts are starting to use) but not PCRU. It is called the GLEEM trial, I am not sure what the acronym stands for. Some patients will be randomized to higher dose IM to see if they achieve PCRU quicker, if at all, than those staying on 400 mg. Apparently I am in a control group of patients who are PCRU and will be monitored closely during one year. The end of the study should yield interesting results in all groups. I am excited to see if within the context of a trial, when one expects that the PCR tehnique will be strictly adhered to, if we will see any fluctuations in my test results. It might provide more insight into the variability we see among the centres. We all tend to get long winded when we communicate about PCR's as this is a area of such importance to us. To R. I think s goes to Dana Farber, I wonder if she has joined this list. There is also a doctor from there who spoke at ASH, I'll try to dig out his coordinates, maybe you can get in touch with him and ask him about there PCR testing. In the meantime my last results from Sloan are at my office, I'll post them here maybe all fellow MSKCC'ers can discuss the resulst? , As far as the BMA's go, it looks as if with your results of 0.005% falls into the new category of MMR - not quite PCR. I wonder if this is what is making them want to do a BMA every three months with you. Maybe they are just watching very closely to see if you are developing any resistance which can be cleared up with a higher dose, that might be stopping you from getting to PCRU. Just a thought. There seemed to be quite a discussion about this at ASH Anyway, just thought I'd post this perspective from someone who travels a good distance to go to MSKCC. Cheers, Cheryl-Anne In , nchando@a... wrote: I feel like they don't > want to give it and barely want to discuss it. I do know the results were > 0.005% (because I asked) , but why can't I have the paperwork? I know, I should > have carefully looked at the papers before I left. Unfortunately, I didn't > realize this until I got home. I'm also disappointed that they still want me > to have bma's every three months even though I'm at zero and was diagnosed > over 14 mos. ago. I wonder if they want me to go through this procedure every > three months for their own research or for my own benefit. What do you > think? > > Thanks, > in NY > > > Quote Link to comment Share on other sites More sharing options...
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