Topic: Is there anyone here that can "translate" studies and medical info?

Today you all posted some great information on the CC facebook page.

Studies and trials and what not ....results etc.

I am wondering if there is anyone here who speaks "doctor" and "english
that can translate this information for those of us (me) who spend
hours googling every other word and STILL don't "get it".

(I admit it--"medical speak"...not my strong suit!)

I am sure I'm not the only one.

I know this requires time and effort--but it sure would be FABULOUS
to look at the information and say "OHHHH!! that's what they're saying!"

Cross posted this on Facebook page as well.

Thanks for considering...it's just that when we're in the fight for our lives,
it would be great to actually understand all of this information thrown at
us.

I know there are some SUPER smart people on here that can read those
studies and totally understand--would it be possible for those smarty pants
to translate for us?

I, for one, (as well as my husband) would appreciate it forever!!!
Thanks!

Dorien smile

2 (edited by marions Tue, 28 May 2013 20:55:22)

Re: Is there anyone here that can "translate" studies and medical info?

Dorien....Each study is a small piece of the research puzzle, and medical practice rarely changes because of the results of one study.  And, unless you have a science background, it is very difficult for the layperson to understand the science presented.  The majority of people do not have such a background.   
But, we feel that everything pertaining to this disease should be posted and that includes research studies. Some of our members have been printing out particular studies and discussed the content with their physicians. Don't be surprised though to have your doctors shrug it off, as to him/her it does not present a change of protocol. 
The below links are great introductions:
Understanding Cancer Research Studies, Part I
http://www.cancer.net/all-about-cancer/ … ies-part-i

And
Understanding Cancer Research Studies, Part II
http://www.cancer.net/all-about-cancer/ … es-part-ii

If there is something of particular interest please post it and I will try to decipher it with you.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Is there anyone here that can "translate" studies and medical info?

I guess what my husband and myself were hoping that someone here knew the lingo (or would be willing to help those of us that don't know it) by
maybe putting a simple explanation after the medical info you all posted.

He even said "Just a one or two line synopsis of each study, or whatever medical bit of info they are posting would be SOOOO helpful".

(So not a whole bit written up--just a one or two line summery).

For example:

Medical Study/Info:  (blah, blah, blah.....a whole buncha stuff no one but Drs understand).

The CC board translation posted after the study:  This study means to eat eggs everyday and it will help with your bodies chemo acceptance.

(OBVIOUSLY ...TOTALLY made up--but that's the just of what we would love
to see)

While we are in the midst of the midst of fighting this battle, we turn to this
board and the FB page as a resource.

I guess that it is somewhat frustrating to have so much information at our fingertips, yet do not understand much of what's being said. sad

So in turn, the information ends up not being very useful.
(because of OUR lack of understanding...)

Please know I am NOT trying to be rude (as one cannot "hear tone" via
the internet...)  --so I hope it doesn't come across that way.

And I suppose we could also take on the responsibility ourselves as well
and print the pages for OUR Dr visits too.

So he could interpret things for us....

We were just hoping someone here "got" the lingo and could help. smile

We also understand that maybe no one here "speaks" Doctor or has the time to do this...and that's great--we will move on and figure out another way to understand it. smile

Re: Is there anyone here that can "translate" studies and medical info?

Hi,
The list  of studies are not for everyone's condition; They are for the general public consumption. they are the most- up-todate information for the disease state that a patient have ;most of then are research studies.
The way I will use the studies information is as follows because I think it will provided the most benefits of such use.

1. To know what stage of the disease I am in ,  intrahepatic or extrahepatic cancer that I have; the location of the cancer ; the number of the tumor; the location  and number of metastasizes of lymph node ,lung,abdominal area or bones  etc; the side effects of the treatment,such as low blood count or electrolytes; any abdomen distention and pain  in any areas;how long I have been on  chemotherapy etc.THEN look and choose for studies that discussed the  situations that resemble what I am have .And I think this will be the BEST approach to utilize the info on this board.
You cannot possible look for all the links and studies that I put out on this board and look at that one sentence,if I put in for you, to make anything out of it, even myself to be honest; they are for different situations for different patients and caregivers.
If   looking for the articles or studies TITLE that fit your need the most ,then  read the studies' CONCLUSION for the answer.Still don't understand, then go to step2.

2. AS you suggested, if you do not understand even what the conclusion of the study means, PRINT IT OUT and bring it to the doctor to explain to you to see whether that study is actual for your condition.He is medically trained and I am not.I think this is you best route to understand what we put up here.
3. I am a patient who volunteer for this job of research medical information to all of the people who come across this message board to look for information.not just for one patient but for a lot of them who are  not even sign on with their names. Therefore the information that I search and put up here is very board and details. Because "some people likes it hot and some like it cold", 
4. Base on what the medical info. you put up with regard to your case. I don't think any of those studies that I put up are related to your current state of your disease because you have been on GEM/CIS for a while and the studies were largely for EUS or ERCP procedure for extrahepatic use; The genetic and cellular level of the bile acids formation and activities which at this point is of no use to your situation. But if you find one study is of interest, please let me know and I will try to explain to you. I do think the information I will put up later from ASCO 2013 may be have MORE interest for you since it will talk about chemotherapy which you are on now and targeted therapy and immunology of different cancers.

5. With regard to putting a  one sentence behind each study to explain each study by people on this board,most people can do so if they want to. this is a discussion board.  but The conclusion itself of the study is that one sentence that can provide you the best and official answer; For me to do that for all the studies seems a good idea but you have to understand I am not a doctor, and what I think about that study may not be exactly what the author wants. you have to understand I am also a patient on chemotherapy like your husband, still working part time, go to conference to gather info. for this board and I am a volunteer  and father of four also .In short ,I have to use my energy wisely so I can do more for this board before I can no longer provide my contribution .
6. Again if an study is of your interest in the future especially from the ASCO 2013 convention, the best way is to print a copy and let you oncologist explain to you since s/he is the person who is responsible for such an informed patient like you and want to know .
Please put your feet on my shoes and try to understand the function of this board.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Is there anyone here that can "translate" studies and medical info?

You are making some excellent points.     
The healthcare system has undergone changes in that patients like to be part of the decision making process, but that places a high literacy demand on the patient.   

Given the limited amount of research for this disease, we decided to offer the most up to date information to the patient community at large.  This however is a double edged sword in that the majority of people don’t understand the medical terminology.  For those (which I believe is the majority of people) the information presented on this site is meant to help you when you talk with your doctor about treatment. In no way does it replace the expertise and clinical judgment of the professional working with you.

I hope this helped.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

6 (edited by thebompie4 Thu, 30 May 2013 09:56:45)

Re: Is there anyone here that can "translate" studies and medical info?

yes thank you--
and please know my intent was not to be contentious or make things
complicated....i was only hoping that there would be an easy way
to help us understand the medical jargon.

obviously there is not--that is the answer  smile

but i will say in our journey thus far (with ME being the caregiver)--
since my husbands diagnosis almost 3 months ago, i have SCOURED
the internet...

(its what i do....)

I read and read and look and look, for ANYTHING that may give us hope
with this *($#&(*& cancer.

It's so hard to have info and not understand it (and when i say this, its
not a problem exclusively with this board--it is EVERYWHERE on the internet).

I find myself sometimes (quite literally) googling definitions of every other
word when it comes to this cancer and treatment and studies and trials, etc.

I love how much more patients are involved in their care and decision making--hopefully SOMEDAY it will translate into easier to understand
information for US to read. (caregivers and patients).

Even things like CT's and PET scans--the language is complicated.

Anyhoo--rambling now....my hope is that someday these things are
easier for us to read and understand.

Thank you for providing the info at least for us to muddle through~ smile
Maybe by the time I'm done I'll have an "honorary degree" in something like medical terminology?!  (ha ha!)

Re: Is there anyone here that can "translate" studies and medical info?

thebompie4.....by no means do we interpret your request to be contentious, rather it is a reasonable request and I wish that we could fulfill your wish to help you understand better.  But the reality is that those of us involved in research simply don't have the time to evaluate each and every piece of information posted on this site nor should we do so. 
But there also is information overload in where we try to understand information we think we need to understand and that can cause us to become anxious.
Overall though; the most important information is the knowledge and personal experience shared by our members, as it provides the most value to the individual patient with similar disease presentation.   As mentioned before, it is highly unlikely for any of these studies to change the course of treatment for this disease; it does however; add to the puzzle of research so desperately needed for this cancer.   
Having said that, dear thebompie, test results should be discussed with the physician, as he/she is the only one qualified to interpret such and is in the position to apply the results to the medical status of his/her patient.
Remember though, that this is a disease we all share in and that we stand by each other and help in the best way possible.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

8 (edited by KarenD Sat, 01 Jun 2013 17:38:34)

Re: Is there anyone here that can "translate" studies and medical info?

Thebompie4-  (cute nickname!!! smile  )

If ever you need help with a definition for something, do not hesitate to ask here.  We all know how confusing medical lingo is, even for those who work in the medical field. HA HA!!!
We will all help out as much as we can.

-Karen

Re: Is there anyone here that can "translate" studies and medical info?

Here are some links to a couple of medical dictionarys which could be useful -

http://medical-dictionary.thefreedictionary.com/

http://www.medilexicon.com/medicaldictionary.php

And as to medical lingo being confusing, yep it sure is!!!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.