Advanced Prostate Cancer
4,513 members4,357 posts

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

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

12 Replies
oldestnewest

Kinnug,

You can't go wrong with Dr. Kwon

1 like
Reply

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

Reply

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

1 like
Reply

Thanks Charles, I'm grateful for your help!

Reply

I can Point you to the Levine Cancer Institute, in Charlotte N.C. Dr Earle Burgess, clinical expertise is just Prostate Cancer. He also heads clinical trials, and interesting to note, his father has a rare form of Pca, and he treats his father, who is in remission now. Upon Gene Mutation analysis of his fathers' cancer, it was determined that Dr. Burgess himself, has a 50% chance of getting the same cancer his father has. So he is really invested. He works with research labs, and gets experimental drugs before they go to Phase Testing.

This is who I use as a Gleason 9, with a rare Pca that only 0.4% of men get, and it is agressive. At this point it is under control--for how long no one is taking bets. But I have married my self to the Institute, if needed.

Nalakrats

5 likes
Reply

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.

Reply

No I have Ductal Cribriform, a rare pathology as I said only 0.4% of men get---so there are not enough men that researchers can grab on to, as they cannot find enough in one spot to study. That is the problem with the rare cancers---as the Doctors basically are told when consulting with their drug companies to treat like any Prostate Cancer, as no one knows what else to offer.

Nalakrats

Reply

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!

Reply

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.

1 like
Reply

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

Reply

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

Reply

uihc.org/neuroendocrine-can...

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

a beta emitter.

Reply

You may also like...