How do we engage a team to individualize treatment? I'm scared.

Dear Susan,

I too can only try to understand what you are dealing with at the moment.

You have explained your wishes very well in your post and I agree with Karen when she says put it exactly as you have mentioned.

I know it is easier said than done though once in cosultation with your oncologist. Please have all your wishes with you on paper when you have your appointment just incase you forget anything as I am sure you would have anyhow.

You have the right to have the best treatment available and you have convinced me many times of your courage and strength in searching out the best treatment path.

I feel your strategies and tactics as a warrior have served you well and being afraid is certainly no weakness but human nature when faced with adversity.

The immense power of self preservation for your fight and right to life inspires me and many others here at this forum.

As always...wishing you all the very best.

Kind Wishes
Leigh

Susan,

I have been reading and re-reading your post...I wanted so much to respond immediately, but I don't have the answers you are looking for.

I think when you meet with your new Dr. you should put it exactly as you have in this post and tell them what you are looking for, and what you want and expect of them... You are a warrior...and there is no reason why a plan can't be tailored to fit your needs

You are in my thoughts and prayers,

Karen

Susan,
I have no answer to your question, but just wanted to say that I'm thinking about you. It touched me when you said you are scared. I can only imagine. You have been a wonderful support to me and I am not even close to being in your shoes. I hope you find the answer you are seeking and I pray that God will give you peace in your heart and mind over this. Hang in there.

As many of you know, my bladder cancer is of a rare variety (sarcomatoid)
known to be resistant to systemic therapies (e.g. chemotherapy).
None of the 6 chemotherapy drugs we've tried have shrunk the cancer
or stopped new mets. There appear (on scans) to be a large number
of mets (lesions, nodules) in my lungs and liver.

Still, I feel well and am teaching college full time and I have one son
getting married and another already married with a grandbaby (my first!)
on the way. I also have a husband and we’ve been married for 39 years.
Like all of us, I want to survive.

Here's the thing. I have been referred to a major cancer center and a
metastatic cancer specialist who has been involved in individualized and
unusual treatment plans. In one case I read about a person with a similar
prognosis to mine (a year or less) is alive and well 4 years later.

Here's my question: What can I do to convince the doctor that I want to
survive and want to be given that kind of personalized and innovative
treatment plan. (I hope it isn't a matter of convincing the dr. that I
am "worth it.")

I am so afraid as I feel as if I have limited time/chances to engage a
team in really trying to help me with “anything it takes.” I know that
a number of you, unfortunately, can identify.

Survivors, how did you engage your doctors in your survival against odds?
Any strategies and tactics to share with a warrior determined (but if you
look closely shaking in her battle boots). -- Susan (mssmr)

PS This is a version of a question I asked on the listserv.



Survivors, how did you engage your doctors in your survival against odds?



Thanks -- Susan Ross