Who oversees your care?

7andcounting · 10-18-2011, 08:28 PM

Is it normal for me to have to try to figure out what my treatment options are? My onc will direct me on drug options, but who looks at the big picture and guides me in seeking other options like Gammaknife or radio ablation for my lung tumors?

Sometimes it seems like a lonely road trying to figure out what my next step is. I feel so burdened down by all the decisions I am constantly making regarding my care.

Thanks for any input.

sarah · 10-19-2011, 12:08 AM

Hello 7,
sounds like you should speak to a few radiologists about that. Oncs are generally chemo, etc.
Ask your onc or GP to send you to a radiologist. you should know about all your options and feel comfortable about them.
In my case, my onc pretty much informs me about choices and we discuss them but I can also talk to my GP about it and ask her to send me to a specialist since it's easier and quicker for me to see her than him.
take care
sarah

Lauriesh · 10-19-2011, 05:51 AM

I feel the same way, that I am figuring out my treatment options, but I guess I like it that way. When I was considering rfa for my liver mets, I made the appointments on my own, then informed my onc about it.
I think we need to be proactive and be involved as possible, instead of relying on one person to make all of the decisions.

Laurie

sarah · 10-19-2011, 07:47 AM

I agree with Laurie although I totally trust my onc and have followed his advice and I'm here 6 years after a scary recurrence but I do talk to him about options, etc and he listens and considers them. Sometimes it's scary to research too much but I think we must do it because we only care about ourselves, our doctors have hundreds of patients to think about, we only have one so it's good to become an expert on our particular illness.
Health and Happiness
love sarah

ElaineM · 10-19-2011, 09:42 AM

I do. I read alot. After almost 13 years I pretty much know what kinds of things I should have done or need to do. I try to keep up to date on the latest information about my health problems. I ask alot of questions. I suggest options. The docs suggest options sometimes. I have a family member who works for one of the big drug companies. I ask her questions. I keep track of when I am supposed to have major tests on my calendar and remind the docs when it it appropriate to do those tests. I report problems to the appropriate doc and we do something about them.
Thank goodness I have been able to keep on top of things for almost 13 years. Thank goodness I am well enough to do it.

jml · 10-19-2011, 10:43 AM

In my opinion, your Onc should be the head of your team and should be the one guiding you towards all your options. However, it is our job to stay educated about the different treatment options out there so that we're able to have informed discussions with our care givers.
I rarely do random searches on the internet, but I DEFINITELY come HERE to ask!
We have the most pro-active, informed, intelligent and experienced self advocates that I've ever met!
The 1st year of my treatment with this disease I was going to a private practice onc group.
To seek the opinion of other specialists was so difficult and frustrating - having to coordinate consultations, getting my chart & treatment history sent over, lugging around copies of scans and then getting to the appointment to have the doc say, "So tell me what's going on?" drove me CRAZY!
After a MAJOR mis-step by my onc & her absolute resistance to take the lead and deferring to specialist that I'd only met once, I left.
I'm now at a comprehensive cancer center, where they take a TEAM approach to patient care, and each time we've had to seek options that may include surgical intervention or other specialists, they take my case to Tumor Board - a weekly meeting where Oncs, Surg Oncs, Rad Oncs, IR's, Paths, Neuro Oncs are all present & discuss how each can contribute their specialty to the best patient treatment plan. They then come back with a recommendation for the patient.
Also, since everything's under one roof, everyone has access to all of my records, scan reports, labs, etc.
I can't tell you how comforting it is to meet with one of my docs and have them run into the room and say "I was just downstairs looking at your scans with the Radiologist/Onc/IR (or whoever)."
Last year I had to switch to a private practice out of state in order to enroll in the TDM1 EAP and still found the maneuvering from practice to practice for annoying.
So glad to be back with my team and caregivers that really know me!

I think the most important thing is that you TRUST your Onc & all your docs, and are confident that s/he really knows you, your treatment history, what you can or can't tolerate, etc. And if you can find a practice that participates in Tumor Board so that you have access to all kinds of specialits & their opinions, I would encourage you to find one!

Good luck & Keep the Faith~

Jml

7andcounting · 10-19-2011, 11:18 AM

Thank you so much for your thoughts. It is really helpful to be able to come to this board and get input.

Does anyone know if once there are multiple lung tumors if there is a type of radiation I can get that goes after just these specific areas?

Onc seems to say no, but I am wondering. I like the idea of asking him to go to the tumor board. I would appreciate anyone with thoughts on this to weigh in as I see my onc this week and want to discuss this with him.

DeenaH · 10-21-2011, 04:24 PM

I have "numerous" tumors, and they said radiation isn't possible. There are way too many to count, but they are all tiny.

To answer your original question, I am in charge of my care. I have a team of doctors, but I do the research and they pretty much do what I want them to. I obviously get their guidance too.