Retroperitoneal Lymph nodes

[boc13]

Trying to get some confusions cleared up. My husband diagnosed 11 years ago with psa of 70 and gleason 9/10. Had RRP and then radiation/Lupron about 8 months later. Seemed in remission until 2014 when it was found in clavicle. His onco left. We've been to two newer oncs at the hospital. Not particularly please with either one, but gave each one a shot. Between 2015 and current his psa goes up and down fluctuating between 2-5 but has slowly been spreading...spots in ribs, one on spine but not confirmed, two or three in hips. Pelvic lymph nodes up and down in size. And a retroperitoneal lymph node now showing 1.4 x 1.1. This has doubled in size since 2015. slowly increasing in size in the past 9 months. As well as a larger pelvic node. Latest scan shows multipe small foci in L2 and lower back area and hips. His doctors have consistently said he is stable?? He's lost 55 lbs and can barely eat over the past 9 months, constantly faituged, too weak to drive most of the time. I've pressed his doctors after a recent stomach scan...He called and said he needed to start treatement in the next two weeks. "Do you want to see me or switch doctors" which I thought was an odd question at that moment. Said he should be it on during a phone a quick call....cassodex, zytiga and a steroid...no discussion no conversation. I'm thinking they waited too long to take action and are now trying to cover themselves by ordering these prescriptions without any indication if there are other treatments..surgical removal of nodes? My husband has refused them and said he will go for his last pet/mri scan this week. Then we are taking records to a new doctor....any thougths? Was he not treated with the protocol for his stage? His latest oncologist, after his being on SSD and long term for 7 months and was approved as compassionate care case for SSD, would not fill out his pension disability stating he was "stable" and his pain was not connected to cancer. We both feel like we are losing our minds as everything they've told us this past year is in direct conflict to what is happening before our eyes. Not sure what I'm looking for...reassurance its not too late for treatment? Any and all thoughts are welcome. Thank you.

[JamesAtlanta]

Given the story you have shared, seems advisable to consider finding a new oncologist asap who specializes in prostate cancer. Unless your husband’s doctor is considered good and just has a bad bedside manor.

If you let us know what part of the world you live in, someone here might be able to recommend a doctor or hospital to visit.

We are pulling for you both!

James

[boc13 in reply to JamesAtlanta]

Thank you James. We are near Manhattan. I've made an appt with a Dr William Oh at Mt. Sinai and also heard of someone at Cornell Weill. But welcome any other recommendations. Very disheartening to feel we've trusted this group and have been there for 11 years. I wanted my husband to follow his old onc to NJ when she left, but he felt it was too far. I know that he wishes he had followed her now. Thanks for you well wishes and advice.

[j-o-h-n in reply to boc13]

If you can see Dr. Michael Morris at Memorial Sloan Kettering Cancer Center in Manhattan (Kimmel center at 68th Street between 1st and 2nd avenues /closer to 1st). He's an Oncologist who specializes in PCa. Phone: [phone]. (I don't know if he's taking on new patients). Here's a dated video of him:

mskcc.org/videos/hormone-th...

Good Luck and Good Health.

j-o-h-n Sunday 04/15*/2018 11:21 Am EDT

*Uncle Sam's Birthday.

[boc13 in reply to j-o-h-n]

Thank you John. Do you see him?

[j-o-h-n in reply to boc13]

Yes I do. Very Competent and friendly.

As I said above "I don't know if he's taking on new patients".

Good Luck and Good Health.

j-o-h-n Sunday 04/15/2018 1:16 PM EDT