Today's path led us to Lee's Summit's branch of the same Kansas City Cancer Center that we visited yesterday. Although I always felt that computerized medical records were a really good idea, I now think it's INSANE that no one has figured this out. Even within the same practice, different locations don't share your medical records. Oh, they shared the billing information! And when we first walked in and I checked in, I was pleasantly surprised that I didn't need to present my driver's license and insurance card. They actually already had that information. But when it came to my personal medical history, we had to start from the beginning. It's time consuming, it's distressing to repeat the reasons for the deaths of siblings and parents, and you get to the point where you're trying to remember if you're telling every nurse the same information. Has anyone heard of computers and databases??? They obviously have a network in place (remember they had the insurance info). How this area of medical practice can be so "behind the times" just astounds me.
OK, that's my vent for the day.
The appointment went well, we really liked the doctor a lot, and he explained things in a way that helped Rick and Allison understand better the options, the possible order of treatment, and risks/benefits of each. Now they both understand why I need certain information before I can decide about chemo. There are thinks I want to know.
I want to know if my sentinel nodes are clear. If I do chemo first, we'll never know. If the nodes are clear prior to chemo, it's less likely that microscopic cancer cells are floating around the rest of my body. I need to know this - it will reassure me.
I need to know if I am a candidate for Mammosite radiation. If we do chemo first, I am no longer eligible for Mammosite radiation. What's the difference you ask? Well, Mammasite radiation is 5 days of radiation - with 2 treatments a day. There are fewer side effects and it seems better than 33 days of external beam radiation. Here's a link for the curious among you:
http://www.mammosite.com/
I am now leaning heavily toward lumpectomy with Sentinel Node biopsy, with hopes of qualifying for Mammosite radiation. The surgeon will install the necessary
"tubing" if surgery goes well, she can get clear margins around the mass no larger than 3 cm or so, and the preliminary node biopsy looks clear. The cosmetic result will not be as "pretty" but that's a tradeoff to get key information that can provide some piece of mind or identify a definite need for additional treatment. There's always plastic surgery opions down the road... and a part of me just wants this thing out! Yesterday!
Michelle, so much information to sift through. I hope you can come up with the best plan for "you".
ReplyDeletelinda
You are doing so well right now Michelle. A woman after my own heart. Gather all the info you can, and then make the decision that seems right for you. I too have typically concerned myself first with what will work and worry about the cosmetics later. Besides, I consider my scars my "war wounds" and I wear them with pride as I've survived everything.
ReplyDeleteJust as an aside, I keep a running list/history that I print out and give to new doctors. It makes things easier and I know that I'm not missing anything. I simply add things as they happen. I also do the same with drugs. I have a series of word documents saved with each name being "Drugs yy-mm-dd" Every time a drug changes I update and save the file as a new name. I can look back and tell you exactly what I took at what point during my various treatments. It can come in handy.
Hang in there. I'm sending positive thoughts your way.
Cora
Michelle, I'm so proud of you! You are taking such great steps to researching and finding out all the information first before making your decisions. I like your plan of action, so far. Most important, you have to like it. I like that you want to know what's going on before you proceed. Did the doctor agree with your decisions?
ReplyDeleteI think each doctor/nurse likes to get their own information from their patients. Sometimes, someone forgets something. Every vist to Kaiser or my dentist, they ask me what medicines I take and mark things down. I get sick of it, but know they are trying to keep things updated. It's probably easier than reading it on the computer. I bring a sheet of paper with all my meds listed. I update that too on the computer and make a new copy.
You're doing great, Michelle! I'm thinking of you daily!
Toby
Michelle, you are one smart lady to gather ALL the pertinent information. This decision is way too important to make without all the relevant facts.
ReplyDeleteIt was a good idea that your daughter and husband participated in this discussion. Sometimes our loved ones need to hear the options first hand from the doctors.