Unusual Case

[antisocialsocialwrkr]

My dad has been called “an anomaly” and today, his doctor said he is shocked regarding my dad’s progression. His doc is reaching out to a friend at Duke but I wanted to know if anyone knows doctors who are familiar with small cell cancer of the prostate. Apparently my dad is one of 10 cases now and it is rare. Basically his cancer went from the prostate, to the bones, and now to his liver.

[witantric]

There are certain experts who specialize in this variant of cancer. You need a consult with them asap. I will try to search for them. Tall_Allen might now. Getting to the right expert for these rare variants is a must

[tango65]

Consult with

Dr Aparicio at MD Anderson Cancer Center

faculty.mdanderson.org/prof...

Dr, Beltran at Dana Farber in Boston

dana-farber.org/find-a-doct...

[Luv2fish in reply to tango65]

and Dr Rahul Aggarwal at UCSF

[witantric]

Also check out the annual prostate cancer conference. Sometimes there are presentations on rare variants

[Tall_Allen]

Try Misha Beltram at Dana Farber or Rahul Aggarwal at UCSF.

Read this:

prostatecancer.news/2016/12...

[spencoid2 in reply to Tall_Allen]

I second the recommendation of Dr Aggarwal. A great caring guy and super smart. No BS from him

[antisocialsocialwrkr in reply to Tall_Allen]

My parents are on the phone with the office of Dr. Andrew Armstrong at Duke right now. You mentioned him to me before, I believe. Still a good candidate for my parents to meet with, you think? I saw some of his research on this topic and passed his name on before I made this post.

[Tall_Allen in reply to antisocialsocialwrkr]

Yes, he's a good choice too- I should have mentioned him. They are doing a really good trial at Duke and have a great diagnostic lab.

[Shams_Vjean in reply to antisocialsocialwrkr]

A nation-wide study program which might offer an investigative treatment option is TAPUR (TAPUR.ORG). The participating treatment center nearest to Duke is:

Lineberger Comprehensive Cancer Center

450 West DriveChapel Hill, NC 27599

Research Network University of North Carolina at Chapel Hill

Principal Investigator: Shetal Patel, MD

In the Charlotte area the following Cancer Center also participates in TAPUR:

Levine Cancer Institute - Ballantyne

15830 Ballantyne Medical Place

Charlotte, NC 28277

Research Network:Atrium Health

Principal Investigator: Kathryn Mileham, MD

[warrior22 in reply to antisocialsocialwrkr]

We drove 6 hours to see Andrew Armstrong. Well worth the visit. Amazing.

[cesces]

small cell cancer is very very aggressive.

It grows and travels much quicker than other types.

[antisocialsocialwrkr in reply to cesces]

yeah we’re living it right now

[Luv2fish]

it is not as rare as his doctor states unless his was diagnosed de novo. I’m in several PC support groups for women and hear about it on a regular basis. My husband had both adenocarcinoma and neuroendocrine/small cell PC. It’s a bear. You need to get to one of the experts. Dr Misha Beltran at Dana Farber or Dr Rahul Aggarwal at UCSF.

[Hidden]

Try to contact MSKCC, maybe a clinical trial is around the corner for neuroendocrine prostate cancer.

It’s more than a year since MSKCC tried out lu177-DTPA-SC16 against DLL-3 preclinical.

Fortis Memorial in New Dehli can offer lu177-FAPi against NEPC.

academic.oup.com/oncolo/art...

[MichaelDD]

I am with Dr Aggarwal. My prostate cancer was hard to detect with the low PSA. Found through trial scan that I was part of with the PSMAGA68 trial. My cancer went only to my lungs. Very rare that happens. Usually it's lymph node, bones and then a soft tissue organ. Very rare you will find what happened with me going just to lungs only.

[Carlosbach in reply to MichaelDD]

Michael, I was intrigued by your reply and your bio. At diagnosis I too had a low PSA (less than 6), and mets in my lungs. I'm at 30 months since diagnosis, and considered in remission due to ADT. Are you still on Zytiga, Lupron and Pred? Thanks, Ron

[MichaelDD]

Ron good to meet you. Very rare indeed that I've been able to talk to anybody that has just lung metastasis. I too was on the three Lupron, Zytiga and Prednisone. I have been on vacation from those three for about 2 years. I had incredible fatigue, bone ache,muscle ache and neuropathy. Not sure if it was the fault of those three? Also me being a breast cancer survivor and fighting that the doctors were not sure if that is a contributor to what I have now? Pains that's are getting worse. Cough and breathing are more intense. Laying flat on my back has become difficult. Looking at the history of my PSA I've always been told that my scans are what tell my story. I've seen small differences over the last 2 years with the PSA.. Now kicking in a upward move if that makes sense? For me the spots remain the same and have not gone into remission. Have not disappeared.I have my next PSMA scan in June. I don't type so well. My hands are painful. So I do speak to type. Neuropathy pretty rough . You'd like to talk on the phone private message me your number and we can do that. Michael

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

I've posted this before.... but my melanoma that metastases to my lungs was treated with Keytruda and it worked. Mention it to the M.O. unless he/she has already ruled it out.

May you beat all of your maladies.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/09/2023 8:17 PM DST

[Boywonder56]

Why this site is a must for pc sufferers......great help to those that need and ask.......thanks guys/ gals

[antisocialsocialwrkr]

Thank you so much to everyone. Each response means so much that you took the time to respond.

[RMontana]

Has your Dad had Germline testing...this podcast at Min 46:25 talk about the need for both Genomic and Germline testing for men with 'unusual histology,' meaning rare conditions. Germline testing may reveal genetic makeup best suited for specific treatments. Genomic testing is also recommended before ANY treatment from Min 44:32 thru 46:52...your Dad should have both done if they are not already...dont know from your post. Check this out;

healthunlocked.com/active-s...

Also, look at this Mapping of testing that is available. Its the best I have ever seen...it may help with the above or to at least know what is out there...

healthunlocked.com/active-s...

Good luck and let us know how things progress. Rick

[antisocialsocialwrkr in reply to RMontana]

Appreciate your help. He did not receive that testing. Looking back, we realize that just getting your PSA checked is false hope.