Frustrated and looking for a 2nd opinion

Posted by rclev1 @rclev1, Jun 4 4:24pm

After a consultation with my urologist, I told him that I would like to potentially do cyberknife. He said he would refer me and that it would take about 2 weeks for them to call and schedule a consultation. The next day I received a call to schedule a 6month lupron shot. (I told them that I was not doing a lupron shot until I met with the radiation oncologist and maybe not at all). It has now been just past 2 weeks, so I call the radiation oncologist facility to check, only to find out that I have not been referred. (I should have called earlier but still frustrating) I am venting a little bit. I am looking for a place to get a consultation/ second opinion. Do cancer centers require a referral for a second opinion? Or a consultation?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Jeff Marchi | @jeffmarc | Jun 4 9:47pm

In reply to @rclev1 "@jeffmarc im near charleston wv" + (show)

@rclev1
That’s a tough one. NCCN has no centers of excellence In your state.

The National Cancer Institute has no Centers of excellent either.

This is the closest I could get

The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute
Columbus, OH

I might be able to recommend a place to get more information, but you’ve said nothing about your cases. Gleason score PSA Results of biopsy. How aggressive your cancer is can lead you to better places for answers.

Some really excellent doctors that may be possible to get to. If you have metastasis, then they are the place to go.

Duke North Carolina Durham
Dr Daniel James George GU Oncologist great doctor
Dr. Andrew Armstrong genetic issues

Bethesda Maryland
Sibley memorial hospital
Johns Hopkins, school of medicine
GU Oncologist
Dr. Channing Paller GU Oncologist great doctor
Dr. Mark C. Markowski GU Oncology
Dr Deville RO

chippydoo | @chippydoo | Jun 5 7:08am

In reply to @rclev1 "@xahnegrey40 Im in West Virginia. Im willing to travel a little bit for the right situation." + (show)

@rclev1 I would highly recommend getting a second out of state. Hopkins, Cleveland, Duke, VCU Richmond or UVA in C'ville. My brother lives in Charleston and they told him they ran out of biopsy needles lol. Run, don't walk!

TurtBean | @turtbean | Jun 5 7:57am

West Virginia…not sure where exactly you are, but I’d think Baltimore wouldn’t be too far - Johns-Hopkins is there and the University of Maryland as well.

Pittsburgh should be relatively close, and UPMC’s Hillman cancer center is there, I think. Even Columbus, OH might be doable, with OSU’s James cancer center - that’s where I had my surgery and where I go for follow-ups. Even the Cleveland Clinic might work for you.

ebraeden41 | @ebraeden41 | Jun 5 7:57am

In reply to @jeffmarc "If you mention where you live and what your diagnosis is, I may be able to..." + (show)

@jeffmarc can you recommend a place in Dallas? My husband has advanced prostate cancer.

guybe | @guybe | Jun 5 8:28am

In reply to @carlsbadguy "PPO plans do not require a referral, as long as the Dr or Hospital system accepts..." + (show)

@carlsbadguy It's a side topic, but important, about Advantage plans. They do tend to expose you more directly to the profit motive behind your care, and to restrictions that may derive from that. Not to your "advantage". It's a key reason why we went with straight Medicare and supplemental plans.

mjp0512 | @mjp0512 | Jun 5 9:29am

Charleston to Ohio State is about 2 1/2 hours. (depending on exactly where you're leaving from of course) Made that drive many times. (Young love puts many miles on a car. 😁)

Jeff Marchi | @jeffmarc | Jun 5 11:35am

In reply to @ebraeden41 "@jeffmarc can you recommend a place in Dallas? My husband has advanced prostate cancer." + (show)

@ebraeden41
The NCCN and NCI both recommend the following institution as a center of excellence

Harold C. Simmons Comprehensive Cancer Center
University of Texas southwestern Medical Center
Dallas. TX

carlsbadguy | @carlsbadguy | Jun 5 3:45pm

In reply to @guybe "@carlsbadguy It's a side topic, but important, about Advantage plans. They do tend to expose you..." + (show)

@guybe You and I certainly agree here. We always had a good PPO plan while we were working, and saw no reason to change when we retired and became eligible for Medicare. Advantage plans are wonderful for seniors who don't have the means to pay for a good Supplemental plan and good Part D RX coverage. I feel very fortunate that I can receive care at any facility/hospital/doctor in the country that accepts Medicare, basically everyone/everywhere.

keithl56 | @keithl56 | Jun 6 6:30am

I have been frustrated by my urology practice. They cancelled my fusion biopsy this week the day before the procedure because they couldn't read the MRI for the fusion biopsy and said the next available would be sometime in August!.. This despite a very serious Pi-Rads 4 MRI with ill defined margins and angio genesis indicating an aggressive cancer.

Yesterday I decided to give up on them and called Johns Hopkins and received an appointment for Monday for them to triage me and schedule a Biopsy! The moral of the story is not to bother messing around and go straight to a center of excellence if feasible to get the best care. possible.