Real Nervous about Genomic Resuits, What type of Physician do I go to in NY who Specializes in Mutations w/ Advanced Prostate Cancer?

[Shorehousejam]

Had my prostate removed and had another round of Germline mainly Genomics testing done…

Gleason 8/9 Stage 4 Grade 5 : 4+5=9 ypT3a

Firmagon @28 days, Zytiga with Prednisone Daily, Taltz monthly for severe plague psoriasis

VIT D 6 weeks, once a weeks, 50k units, no prolia or Z Acid for bones, my teeth need work

Metformin 500mg daily found 1000 was too much for myself

PSA <0.06

I have been bleeding since July from rectum. MO refuses to do pet scan, although he did a CT Scan with significant Decrease in disease in all nodes. No new metastatic lesions.

Since CT dated 05/31/2023,

Results CT Scan

1. No significant change in size of mass in the left prostatectomy bed.

2. Unchanged small pelvic lymph nodes.

3. Unchanged mixed lytic/sclerotic expansile lesion in the right iliac bone.

4. Findings suggestive of acute uncomplicated sigmoid colitis/diverticulitis.

Correlation with clinical symptoms is recommended.

—-

The gastroenterologist is doing another CT scan to see if it’s diverticulitis, no bacteria found in stool test, given an antibiotic as it may of been an infection and gastroenterologist wants to hold off for now on an endoscopy and colonoscopy as the procedure could cause a perforation, cause more complications or God Forbid a bleed out.

I’m scared out of my mind, ah, but hide it well. My wife is constantly reading medical journals.

In reference to the mutations and reading about Neuroendocrine cancer, since I have been on Firmagon and Zytiga with Prednisone since 07/2022 .

I’m worried.

I also had a CHA test

Component Your Value

Chromogranin A 117 ng/mL

0 - 103 ng/mL H standard

I was flagged as H

My Carcinoembryonic Antigen <0.5 ng/mL this test was very low, good news.

<=3.0 ng/mL

Non-Smoker: <= 3.0

Smoker: <= 5.0

My LDH was Component Your Value Standard Range Flag

Lactate Dehydrogenase 168.0 U/L

The Germline was done on the pathology from my original transperineal biopsy 07/2022

Tumor genomics - Oncomine targeted panel from pre-treatment prostate biopsy with

Tier 2 variants in p53 and CDH1,

Tier 3 in DNMT3A, HRAS, WT1. TSO500

After My Davinci Radical Prostatectomy in 03/2023 with 8 lymph nodes removed all negative for PCA and I had/have 3 lytic lesions mostly resolved in pelvic area hip /lytic/sclerotic expansile lesion in the right iliac bone, according to my Medical Oncologist.

Targeted panel from post-treatment prostatectomy with

Tier 1 ATM frameshift alteration,

Tier 2 FOXP1-BRAF fusin, PTEN frameshift alteration, FOXA1 frameshift alteration,

FBXW7 missense, SETD2 frameshift alteration.

TMB high (17.4 muts/Mb),

MSI stable; multiple VUS (BLM, CUX1, EML4, EPHB1, FGFR2, FOXA1, GRIN2A, JAK1, SMARCA4).

Discussed implications.

The genomic profile was somewhat discussed but no mention how bad or good, it really is…

This why I’m nervous out over it.

I have been at NYC NYP Cornell

[Shorehousejam]

I’ll add

on Hi I’m at NYC NYP Cornell above are results from CT Scan, my wife has asked for a Pet PSMA scan but MO doesn’t think I need as He feels my disease is stable. This is a cancer care of excellence NYP Cornell both the Medical Oncologist and Gastroenterologist are there, My Primary is a Director at Montefiore Hospital annex site.

I feel so confused to all the mixed messages

[Shorehousejam in reply to Shorehousejam]

Any comments cesanon

[cesanon in reply to Shorehousejam]

If what you are hearing is not making sense to you, you need to get more second opinions.

Until your opinion changes, or their opinions change.

[Shorehousejam in reply to cesanon]

Should I be nervous about genome profile

I don’t completely understand it

Some of it seems that maybe I would respond to immunotherapy and maybe not

Sometimes ATM mutations are classified with BRCA1/2

[Shorehousejam in reply to cesanon]

Am I looking for an Immunologist or Medical Oncologist whom specializes in Immunology?

[cesanon in reply to Shorehousejam]

"bleeding from rectum for 3 months " gastroenterologistOther - Medical Oncologist

[Shorehousejam in reply to cesanon]

I was going for a second opinion on my PCA with an MO from MSK as well as a gastroenterologist from MSK. My wife thinks after rereading CT scan results and waiting on new CT scan results, we don’t need to go any where right now.

Update: AFTER appointment with my medical oncologist, we talked about the bowel issue, the fear of missing anything and about my mutations. My wife is abet overwhelmed with the radio gland treatments but thus why she choose the Medical Oncologist and NYP Weil Cornell. So much information with lots of staggering research. She is tough and tries to stay on top of things like an octopus. Lol 😁

[Seasid]

An interesting post about immunotherapy and genetic testing. I think it is great information for me.

healthunlocked.com/advanced...

[Shorehousejam]

Thank you I’ll take a look

[Seasid in reply to Shorehousejam]

Liquid biopsy should be performed when your PSA is above 5 or even better 10 otherwise you will not get meaningful results. That is the only thing what I would add to the above old post.

[Shorehousejam in reply to Seasid]

The test were performed at NYP Cornell, I did all the paperwork for Foundation One but my MO had it done right at Cornell, so it was completed there.

[Seasid in reply to Shorehousejam]

Foundation One is not a liquid biopsy? Tissue biopsy is the best first step if you can get a good quality tissue biopsy sample.

[Shorehousejam in reply to Seasid]

Yes I know, my mutation results are in my post from the pathology / actual tissue from my removed prostate. I think the liquid Biospy is from the Guardiant 360. I have not done it yet and I have not done a Colortime test that I have at home.

These results are from the NYP Cornell in-house test:

Targeted panel from post-treatment prostatectomy with

Tier 1 ATM frameshift alteration,

Tier 2 FOXP1-BRAF fusin, PTEN frameshift alteration, FOXA1 frameshift alteration,

FBXW7 missense, SETD2 frameshift alteration.

TMB high (17.4 muts/Mb),

MSI stable; multiple VUS (BLM, CUX1, EML4, EPHB1, FGFR2, FOXA1, GRIN2A, JAK1, SMARCA4).

[EdBar]

You’ll need to consult with an oncologist who is familiar with genetic mutations and what treatments are available. I see Dr. Sartor and have had 4 different genetic tests done over the last several years. They showed several mutations, not all of which are active for prostate cancer and not all respond to any available treatments. I currently have 2 that may respond to a Parp inhibitor but I’m not planning on going that route unless I run out of other options, treatments for genetic mutations come with a lot of SE’s. With a PSA of <0.06 a PSMA scan would be pretty useless, Sartor didn’t opt for one until I became resistant and my lengthy undetectable PSA became resistant and hit 0.2. BTW I’m also Gleason 9 and was dx stage 4 nearly 10 years ago.

Ed

[Shorehousejam in reply to EdBar]

10 years that’s inspiring. I think it makes sense not to use all available treatments unless one has too. Thank you

[Seasid in reply to Shorehousejam]

I totally agree with you about not using olaparib parp inhibitor early unless one has to.