Update, small cell

[Fdccs]

Hi everyone,

It's been a while since I posted but check in time to time. I'm not really sure of the purpose of this update is except we don't have a lot of family so I'm hoping writing it down will help. Please be sensitive as I'm struggling. I really can't hear about should of dones.

My husband was diagnosed with PC October 2018. Gleason 9, PSA 167. Spread to pelvic lymph nodes. Not shown any where else but oncologist was sure it had given high PSA.

He had chemotherapy, 37 radiotherapies and Lupron for 3 years. He came off HT December 2021 but testosterone hasn't really recovered (last reading was 2.4 as a UK measurement should be 10 I believe)

PSA has been undetectable from early on.

He's recently had a lung screening scan where which detected a small lung tumour which will be treated by SBRT. Whilst checking this they did a pet/ct scan which has detected activity in his prostate

There has been talk about another subtype due to PSA being undetectable

So more tests, starting with cystoscopy. Feeling very frightened and in new territory as this isn't a type I know or understand. All of my previous research was based on his original diagnosis although I now know it can transform.

I know he won't be able to have chemotherapy due to other health conditions

Thanks

[Tall_Allen]

Thanks for the update. Keep us in the loop.

[Hotrod65]

Further testing will warrant another diagnosis for small cell or Neuroendocrine?, of which I'm dealing with, here is a discussion I saved back when I was diagnosed 10.5 yrs ago.Small Cell Prostate Cancer (SCPC), and more generally Neuroendocrine Prostate Cancer (NEPC), are thankfully rare types of prostate cancers. They are not responsive to hormone therapy, to taxanes (Taxotere or Jevtana), or to radiation. They are difficult to detect and monitor with the kinds of imaging used to detect prostate adenocarcinoma (mpMRI, bone scans, PSMA PET scans), but may show up with FDG PET . They do not put out PSA, PAP or bone alkaline phosphatase. Special biochemical tests or if. It often appears at a "mixed type " or Differentiation at Diagnosis., can be Treatment Emergent or when a patient becomes Castration resistant CR, advancing disease with no notable rise in PSA...I wish you the Best...God Bless.

.

[Ahk1 in reply to Hotrod65]

You were diagnosed with NEPC over 10 years ago? Or it morphed to small cell over the years?

[Hotrod65]

Yes, I'm a Medical Miracle and my case is known worldwide..diagnosed with stage 4 Neuroendocrine small cell and told I only had 3-6 months in 2014..hit it with everything conventional, no response, surgery, Genetic and Genomic Sequencing led my doctors to immunotherapy PD1 Checkpoint inhibitors, long term Durable Clinical Remission NED current...only on maintenance drugs to keep my side effects in check for 6 yrs of PD1 and 58 infusions, im considered an Exceptional Responder due to my rare POLE mutation that carried a Hypermutated Tumor Burden.

[RoseDoc]

Have they discussed doing a biopsy on the lung lesions? This would help differentiate it and, ultimately, help direct therapy.

[j-o-h-n]

"He's recently had a lung screening scan where which detected a small lung tumour which will be treated by SBRT. "

Make sure you ask the doctor(s) if you Dear Husband is a candidate for Keytruda immunotherapy before they put him under treatment. It truly is a miracle for treating Lung cancer. Do your research on Keytruda. It works!!!

Good Luck, Good Health and Good Humor.

j-o-h-n