PSA was elevated in October. Couldn't see for 3 weeks, biopsy Gleason 10. Appointment with surgeon took 3 weeks after having bone scan and MRI. I was diagnosed Stage IV in January, mets to 1 lymph, sacrum and T7. Took another 3 weeks to see radiation oncologist who indicates IMRT in 2-3 months and received firmagon. Seems he only does the radiation and the other partners drive the care. I seem to call a lot with very slow responses and am frustrated at how long each appointment is taking.
What's best way to find a good team to drive the care. I have an appt with MD Anderson next week and am hoping they will map my treatment for the next 6 months without me calling weekly. Any suggestions? Thanks.
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Vangogh1961
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Thanks, MD Anderson is a partner to my hospital system in AZ. I will ask them for recommendations for a MO. I have an appointment with a Urological specialist with them. I appreciate your response as I'm an RN and sometimes feel like I'm pushing and simply want to advocate for my care. I felt as soon as it wasn't a "surgical" option, I was lost in the system.
You can't do better than MD Anderson as an institution, but you partner with a doctor, not an institution. Paul Corn is certainly a leading light, if you can get him. But a lot has to do with your personality and communication style. You have to find someone you feel comfortable with.
I wouldn't be in such a rush to know what treatments are in your future. The state of knowledge is rapidly changing, and what is available 6 months from now may look very different. I recommend focussing on what you do at the present moment. You will deal with the future later.
I understand things change, but I'm the one calling my Dr's office and asking what's next. It's been three weeks since I saw the radiation oncologist and neither he, nor the surgeon who is reportedly the groups oncology specialist has said what's next.
You are your own best advocate. Do your own research. Ask questions. Be proactive. Get second opinions. Your MO is your quarterback who will provide viable options for you.
We have all experienced frustration with getting timely responses. Be aggressive and keep following up as much as necessary until you get answers.
I started at MDA, received some excellent surgical care there, but also some some rushed perhaps inaccurate decisions and opinions.
I've then moved to Mayo Clinic in MN for the continuance of my care and found different opinions and more effective treatment and a setting which is so much more peaceful than Houston.
As noted, getting yourself to a Major Cancer Center and one of Excellence is and will provide the very best results from your care! It may be difficult as noted also, but it's also well documented that the skill of your team can be directly related to repetition. No offense to local practices, but there's really no comparison in regard to the care available, and the amount of variety in regard to treatment possibilities.
We are moving soon to Ocala, Florida (64 miles from Orlando) and our doctors, RO & MO don't/won't give any recommendations! Does anyone here know of a Major Cancer Center and one of Excellence, that would be close to us there? Thanks in advance!!
sjc2, my husband and I are in Vero Beach, FL and have been dealing with PCa since 2014. Two surgeries, one in 2014 and one in 2017 plus 39RT in 2019. If you want to DM me, I will give you recs for Orlando. Mayo JAX and Moffitt Tampa are the two obvious centers, but *perhaps* not the best for PCa.
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