[johanna]

Re: Doctor patient communication

by johanna on Mon Mar 18, 2013 5:43 am

Hi , Terry and Diana , thank you for your reply.
that is a very good ideea , we never acutally thought of that .(medical records department)
yes we are in the UK. Ian is a NHS patient. we are gonna try again this wednesday to get all that they tested for so far. we just have to be careful with them , don`t wanna piss them off . we`re gonna ask the doc to send an email if it doesn`t work we`ll try the medical record department. not even thinking of asking a print-out again , they won`t do it. since the main man is always away , the other consultants don`t wanna step on the main man`s head and make any mistakes. suppose they`re afraid of jeopardizing their own positions , but we still have the right to know ...the excuses they come with are just childish... "don`t have any time" for my own patient.
i absolutelly agree Terry , treatment is very standardised here. so much so ,
that they don`t even have a long term plan . i think they treat all the same.
we asked about collecting stem cells , and freeze some for a possible second transplant , they won`t do it. we asked about long term plan , when disease will relapse , nothing has been said and so on. their plan is to deal with it now . don`t think about later on. i think it may be a question of budget as well and after first round of treatment , they might as well send you home and wash their hands... it`s all about gradual disclosure of information , and keep it as short as possible. Diana i am glad you managed to get your own records, there is a great deal on information on line + this wonderful forum, that is full of useful info. If i may recommend , you can go as well on IMF myeloma (if you haven`t already) there are loads of free PDF publications , very easy to read and understand. i print all the time on paper and make notes.
easiest way to do it.

thank you again guys , appreciate it , we hope to have a productive way as well on wednesday and don`t come home again empty handed

take care.
johanna

[Nancy Shamanna]

Re: Doctor patient communication

by Nancy Shamanna on Mon Mar 18, 2013 8:42 am

Hi Johanna, I would think that usually a doctor would welcome a patient who took an interest in their own health! I know that my doctor and the oncology nurses take the time to chat about my lab results and any other concerns. I started asking for copies of my lab results quite early on. Not all patients are interested in that, but now they always give me a copy at appointments. Sometimes it is just more for 'peace of mind' but reviewing them has helped me to think and learn about myeloma. I do not know the situation in the UK, as to whether you can find another doctor if you cannot communicate well with the one you have.

[Twi]

Re: Doctor patient communication

by Twi on Thu Mar 21, 2013 4:35 pm

My experience (related to my Mom's multiple myeloma) is that she also has something called "My Chart" as well as another similarly named computer based chart - the multiple myeloma markers do take longer to process in the labs, but for some reason, they NEVER show up no matter how much time has passed. With one of them (at a university), they DID show up. What we have always done, going on 3 years now, is at every single appointment/lab draw to ask what labs are being drawn, make note of it, ask for a copy right then. Usually the CBC they can give us immediately. The chem panel sometimes too. But the multiple myeloma markers, even if I ask them nicely to mail it, I 9 times out of 10 have to call (I usually give it a full 4 business days before calling them to ask so that the multiple myeloma marker labs will be in by then).

You definitely have the right to the results of every lab you had and in no way should a doctor belittle you for focusing on one lab test!

[Eric Hofacket]

Re: Doctor patient communication

by Eric Hofacket on Thu Mar 21, 2013 9:03 pm

Dianaiad,
I also have Kaiser and use the KP.org site frequently to my lab test results. What I have found is some of the lab test results do not post online because the results are a narrative or description, such as a bone marrow biopsy where a lab technician writes a statement as a result. Most test results that have simple numbers will be posted on line, but not all. CBC without differential will post online automatically but a CBC with differential will not post automatically. I was told the reason for this was that the numbers for the differential part of the CBC can vary quite a bit and often will fall outside what is considered the normal range as a result of medications, infections, and other reasons and do not necessarily represent serious or abnormal condition. Kaiser used to post CBC with differential but when patients saw the frequent deviations outside the stated normal low and high values, patients were unnecessarily panicking and getting overly concerned and the doctors were getting flooded with calls and email about test results that were really normal for the circumstance. It is possible for a Kaiser Physician or nurse to bring up the CBC with differential test results on their system in the office and set a flag that makes the CBC with differential results visible so I can see them on KP.org. My primary care physician seems to be the only person who knows how to do this though. My oncologist does not. When I take a CBC with differential I email my primary care physician and he sets the flag for my CBC test so I can see them on KP.org. He has done this many times for me. One thing I wish KP.org had and I emailed the webmaster about was making possible for a patient to see what pending lab orders they have. I have had lot of lab orders in the last two years and many are placed well in advance for specific time windows to be taken. If I lose track of them I have no way to know what my pending orders are without calling or going into the lab and asking.

If you do not like your current Kaiser doctor because his patient interaction is poor, ask if you can be switched to another. They are all individuals, I have found that not all doctors are the same in this regard. When I have one that works well for me I keep them.

My feeling is that while all medical records should be available on request to a patient, I am OK with the idea that some test results should not be made available on line to a patient without first being explained face to face with a doctor who can explain what the results mean for the individual patient. Some of these test results can be complicated. Also, imagine a scenario where a patient can get the result of a test they had from the internet, look up the test on the internet and learn the result means they almost certainly have a terminal disease like multiple myeloma, then do a Google search on multiple myeloma and get outdated information that says it is a terminal disease and their 5 year life expectancy was less that 30%. Does this sound like a good thing for someone to be at home alone with no support to learn they were going to die soon, maybe in less than a year? This is kind of what happened in my case. It was a lot better when I went to my appointment to see my doctor about the results I looked at on KP.org over the weekend and he explained the results and what they meant for me in my case, and gave me the current information about life exptency and treatment options. Kaiser also had consolers who immediately met with me to offer information about support groups, the different cancer societies, asked about financial impact of this diagnosis on me, asked about my family and friends who be able to help me through this, and evaluate my mental state of mind with this devastating news. I am pretty sure they were evaluating my reaction to the news to see if I was expressing thoughts of suicide and severe depression.

[Nipon Ginko]

Re: Doctor patient communication

by Nipon Ginko on Thu Mar 21, 2013 9:15 pm

Hi after reading all the great comments posted here thought I would respond to a couple of questions posed - I have belonged to Kaiser since 1968 and have found their care to be generally ok I'm not ready to chuck them just yet even though I do see some deficiency in some of their methods . I am near to Portland Oregon and do know where OHSU is located to my knowledge Kaiser and OHSU do not have the sort of working relationship which would allow me to be treated there other than a major catastrophy ie Interstate building leveled etc. As far as changing Oncologists I have done that twice my first Oncologist died of Multiple Myeloma about a year into my treatment -great guy & good Dr. - I was transferred to either Dr. Jeckel or his alter ego
M r. Hyde not sure which it was real hard to tell -I fired him on the third appointment - maybe one of you ended up with him -hope not- I then went to my third Oncologist who I feel is very knowledgeable if maybe a little absent minded in scheduling lab tests . (we had a long talk about this recently)

I know this is not part of the conversation but my sisters son has Parkinson and they have been treating him with stem cells ( billions of them) derived from his stomach Fat , it seems to be helping him -I was wondering if any one had heard of trials like this being done for multiple myeloma patients ?
N.G.

[jojeda]

Re: Doctor patient communication

by jojeda on Thu Mar 28, 2013 8:32 am

Boy do I ever know what you are going through. My 83 year old mother has had Multiple Myeloma for two years and my father had prostate cancer for many years of which he died from last year. They are Kaiser patients. I have beenthe advocate for them in dealing with the doctors. It has been a terrible experience. We switched from one doctor because of her terrible bedside manner. It is a long story but she said and did terrible things. I tried complaining but it went nowhere. The doctor we are now using has been better but now he is getting to be the same way she was (not quite as bad as her but close to it). It is extremely upsetting when it is already hard enough dealing with cancer but then to have to deal with these issues on top of it. The unfortunate thing is that the center my mother uses that is in her area, there is only 2 doctors to choose from. I'm not comfortable that they are giving her the best care she deserves.

[Stan W.]

Re: Doctor patient communication

by Stan W. on Thu Mar 28, 2013 5:18 pm

Find another doctor.
I go to Mt. Sinai in NYC. They provide us with a personal web page with all the test results. It takes a couple of days to post and, makes it easy to track results over the course of treatment. But, the nurse will print out what's available right after they draw blood when I'm there for weekly
Velcade injection.