All of this is very new to me. As I was diagnosed only on 1/3, it seems I need to fasttrack myself on the language and vocabulary of cancer. See, I've been lucky as nobody in my family or close circle of friends has never been diagnosed, so I never had to understand tumors, mets, nodes etc.

Obviously, I need to fast track myself on what I need to know. Does anyone have a suggestion for me on how to understand some of this lingo? It would be nice if I had Cliff notes. My husband and I discussed this last night, as I keep trying to recall the series of events that have been mentioned for the future. We were talking and realize the Cancer Center staff deals with cancer every day, years and years, and they probably just assume we have the knowledge they have. Know what I mean? They could probably mumble in their sleep what a creatin test is, but just don't think to tell us. Half the time when they take a blood test, I don't know what it's for. The only one I recall is getting a pregnancy test in the Rad dept. Some nurse mentioned a "creatin" test and said "oh yeah, you've had that" It makes my head spin.

Eventually, I will become an old hand at this right? It's not that I'm scared, it's just that I'm curious and desire to know what's going on and why. This seems the best forum for getting answers.

I would love to be full member of this club, with a little tag line before my sig that says "Stage IV, T1, N3, Mx" Prior to going in for the PEG, I asked my surgeon if they were going to sit down with us and give us a full diagnosis of the staging of this cancer. He waved at me and said "Numbers should not concern you." ::::sigh::::

So, what I'm trying to say here, is that I DESIRE to be educated. In a previous post, I did want to know what questions to ask. I'm clueless even when it comes to medications. Never had a prescription for birth control after I had my tubes tied 11 years ago, so I was never accustomed to being "medicated" Now my bathroom looks like a pharmacy exploded.

I'm now familiar with nodes and mets, but there's just so damn much to learn. I study the little booklets they pass out. "Use Dove soap on radiated skin" (useful tip, but I'm sure there's more complicated information I can absorb)

You all have been a fountain of fast learning for the uneducated with little tips and foresight for possible problems like constipation.

I want to be a good patient and not be "difficult" And I realize that because the staff deals with cancer patients, it's probably better for them to not get attached to us emotionally. I can deal with that. Anyone have any suggestions on what I can read to bring myself up to speed with tests, medications and treatments?

A nurse friend of mine asked me if I had a "case worker" yet, when I explained that I get confused over what department I need to be in on a certain day and juggling all these different appointments. Never heard of one, but did ask the surgeon about it. Don't have one, the lady in charge of my Iressa study would be the closest thing to it, but really with having to coincide different treatments on the same day, someone to help me figure out scheduling would be nice. There doesn't seem to be ONE point person to call to pull me up in the computer to see what I got on the schedule.

Again, all these terms... case worker, tests, procedures, medications, personel, who does what? I need a quick study plan to get the vocab down. Site links anyone?

Jen

Jen

First Jen, You shouldn't be concerned about statistics. If you saw them it would either scare you or give you hope (depending on if you are a glass half full or half empty kind of person) The fact is you have cancer. The fact is you may survive. The fact is you may not. Doctors live in the world of statistics because it is how they determine how to treat you. Beyond that they cannot know the final outcome of your illness. For me this was not always a comfortable realization.

You will be a good patient, ask all the questions you want of your doctors, nurses and other medical staff. They often speak in the trade terms and acronyms but if you ask they should take all the time to explain that you need. If they won't do it then complain loudly (they hate that) Generally a polite question will get the answer you need. Beyond that you sure can ask here for medical term to be translated. Usually there is someone that will be able to help. I don't know of a Cliff's notes (but it's a good idea). In addition the search function here at the OCF will yield a great deal of information. You are able to search the forum here or go to the OCF home page and search from there.

Besides that searching the web with any of the various search engines (Google etc) will usually come up with something.

I agree, the number of bottles and containers of medications was a sight.

Hi Jen
I understand the difficultly with the medical terms, may I offer you a web-site, it is uk based but fantastic, here it offers freephone advise, but it may be worth a visit for you.. www.cancerbacup.org.uk
Sunshine... love and hugs
Helen

Jen,

Another link that I've found helpful is on this site: from the homepage, click on "Other Resources", go to the National Cancer Institute link, and look in their dictionary, which contains many of the technical terms your doctors and nurses are likely to use. It may not cover all the bases, but I think it's very useful.

Cathy

Hi Jen,

I think your question is an excellent one and you've received some good advice above. About a year ago, I stumbled across a little utility program that I've loaded onto my computer. When I come across a term that I don't know the meaning of, I hold down the ALT key and click on the word. The little utility then opens a window with the definition. There is a free version of this program and registered version. I have no connection with the company nor any financial interest in it.

I know we're not supposed to provide links to commercial sites on this board. If you do a Google search for 'gurunet', you will find the web site where you can download the free version of this program. I find it very valuable for exactly the type of situation you've described. I find a word or term I don't understand and want a quick definition.

I hope this is of some use. Best wishes and good luck with your treatments - Sheldon

Hi Jen,

Here is a good summary of the TNM staging.
http://www.mdanderson.org/Care_Cent...5-11D4-AEC300508BDCCE3A&PrintPage= 1

I think your desire to be educated is great. Good luck with everything.

Lawrence

Jen, It is a year and a half since my husband was diagnosed with cancer and it is mind-boggling what you have to learn. I only found this site after Stephen

For cancer terms in general here's a couple of sources:

http://www.nci.nih.gov/templates/db_alpha.aspx?expand=C

http://www.cancersource.com/resources/glossary/index.cfm?DiseaseID=1

Jen, my college statistics teacher started his course with the statement "There are Lies, there area D**n Lies, and there are statistics". If you follow the stats then I, along with others on this board should have been worm food long ago.

The links others have given you are good ones for finding info about your care, and that's the main thing to worry about, the here and now and how to put one foot in front of the other. Concentrate on learning all you can to make sure you get the best care you can and how to take care of yourself the best you can, and the journey will hopefully be that much easier.
Bob

That was the one thing I absolutely hated was having 2