Medical Oncologists specializing in neuroendocrine prostate cancer (or advanced and rare prostate cancer)?

[kinnug]

Hello,

I'm new to this forum but I am seeking advice on excellent medical oncologists or urologists in Canada (or the US) who take a curative approach (such as Dr. Eugene Kwon).

My dad was diagnosed with Gleason 8 prostate cancer in early 2010 and a combination of radiation therapy and hormones kept his PSA low for 6 years. Unfortunately, the prostate cancer is back because he was recently diagnosed with high grade neuroendocrine carcinoma. It has spread to his spine and possibly lungs and liver.

My family is desperate to prolong my dad's life and therefore we are on the search for a good medical oncologist who is willing to go beyond standard care for this rare and deadly cancer. I apologize in advance if there is already a similar thread (sorry, I'm a newbie!). In that case, it would be great if you can point me to it.

Thanks so much, in advance. I'm very grateful for all your help!

Karren

[gusgold]

Kinnug,

You can't go wrong with Dr. Kwon

[kinnug in reply to gusgold]

Hi gusgold! Thank you so much for confirming that I appreciate it!

[ctarleton]

You might consider looking for specialists at some of the major locations that are participating in this Clinical Trial, specifically researching neuroendocrine tumor treatment at the forefront of current knowledge.

clinicaltrials.gov/ct2/show...

Charles

[kinnug in reply to ctarleton]

Thanks Charles, I'm grateful for your help!

[kinnug]

This is so helpful, Nalakrats. I already feel hopeful just reading your post. Thanks so much, I appreciate you telling me about Dr. Burgess.

You mentioned that you have a rare PCa. Is it neuroendocrine differentiated PCa? This is what my dad has and it's very aggressive. My family and I are so scared, but also hopeful that his life will be prolonged for at least a couple of years.

[Hidden]

Karren, welcome to the forum. Your father is blessed to have a daughter like you who is actively seeking for answers. I wish you both well.

[kinnug in reply to Hidden]

Thank you so much for the warm welcome WSOPeddie. I'm very grateful for all the advice and support, it means so much.

[kinnug]

Sorry to hear that you have this very rare cancer. I'm so inspired by your wisdom and all the advice you have given people. It's remarkable how you and so many men (and their families) are such strong fighters. You guys give me hope Thank you so much!

[petercraig2]

Karen,

not sure how things are with your dad but suggest looking into Metformin and Noscapine. Clinical literature suggests they can be effective to all cancers and already FDA approved and very cheap if you can find a clinical oncologist to prescribe. I'm on Estrogen patches Estrodial which have taken PSA down from 12 to 2 in six weeks and also Metformin and hoping to add Noscapine and avoid six weeks of radiation therapy.

Peter

[Hidden]

uihc.org/neuroendocrine-can...

not sure what they are upto lately. they were testing a treatment used in Europe.

a beta emitter.