looking for recommendations for top radiation oncologist in Calif or Mayo for second opinions.

[BeHealthi]

My husband had RP in June of 2022 and his PSA started creeping up since September of 2023. His last PSA was .08. He had discussion with a radiation oncologist at UCSF and was told to do nothing until PSA is reaching .2. We are worried about waiting until then as he has EPE, cribriform and high risk for Decipher. I have read an article that BCR is less if Salvage treatments started earlier than 0.2 and we wanted to make sure so we can have him treated soon. TIA.

[Tall_Allen]

The best, most current data is that there is no risk in waiting for a BCR:

prostatecancer.news/2019/09...

There are exceptions, but there is no data in your profile from his post-prostatectomy pathology report to assess that.

UCSF has a great RO department. In California, UCLA has Amar Kishan. Mayo focuses on RP.

[BeHealthi in reply to Tall_Allen]

Hi,

My husband’s biopsy was 3+4 but it was upgraded to PTA3aNx (4+3, 60% pattern 4, 0 pattern 5) after his surgery. His surgical report indicated that he has cribriform (fused poorly formed , simple and expansile formed ) perineurial, lymphovascular invasion, HGPIN and possible focal margin. Urinary Bladder neck and Seminal Vesicle are not identified as the surgeon did not test or removed any of his Lymph nodes. He had RP in 6/22 and his subsequent PSAs were undetectable until 9/23-0.02; 12/23-0.04; 2/24-0.08 and it has been staying at 0.07, 0.08 for the last monthly tests. He will have another test this coming week I believe.

[Tall_Allen in reply to BeHealthi]

He doesn't have the risk factors that would drive immediate salvage:

prostatecancer.news/2021/10...

Maybe if he had a high Decipher score. And his long history of low and non-detectable PSA suggests indolence. Good idea to follow PSA for now.

[BeHealthi in reply to Tall_Allen]

He does have high Decipher risk and i dont know why his RO still says to wait until 0.2. Therefore we are seeking for second opinions now.

[Tall_Allen in reply to BeHealthi]

What was his Decipher score?

[BeHealthi in reply to Tall_Allen]

0.69. Thanks Tall_Allen.

[Tall_Allen in reply to BeHealthi]

Yes, that would influence me to want to be treated sooner too.

[BeHealthi in reply to Tall_Allen]

Thanks. I wanted to find the best RO as the experiences and precisions of treatments are very important at this point. Do you know any other top RO beside dr. Kishan? Or do you know Anyone in particular at UCSF or Stanford? We are willing to travel for treatments as my husband’s health is more important than anything else.

I would like to mention that we have never get a second opinions on his biopsy or surgical with John Hopkins. I recalled my husband talked to the Nurse Practitioner but it somehow dropped as she said she doesnt know how to do it. Is it worthwhile to get a second opinions now ? Thanks so much for helping.

[BeHealthi in reply to BeHealthi]

Or is it too late for it now?

[Tall_Allen in reply to BeHealthi]

Pathology after RP won't change very much at different places.

Kishan would be my choice.

[BeHealthi in reply to Tall_Allen]

Thanks so much for your help. I really appreciated it very much.

[BeHealthi in reply to BeHealthi]

Thanks for responding. We have read the attached article and it is our concern about waiting.

auajournals.org/doi/epdf/10...

I have talked to one person whose husband was treated at MSK, she told me that MSK started Salvage treatments at 0.1 and he is undetectable now.

[Tall_Allen in reply to BeHealthi]

The AUA/ASTRO/SUO guidelines say to wait for BCR.

[JWPMP]

My husband was treated by Dr Osama Mohamad at UCSF. He was incredible. He has since moved to MD Anderson Houston. Before he left, he recommended Dr Julian Hong at UCSF if Jim needed RO in the future. We haven't had need of him yet, so haven't met him.FWIW

Thank you

[BeHealthi in reply to JWPMP]

thanks so much for your reply. I recalled seeing his profile on UCSF website but didn’t know that he has moved to MD Anderson.

[JWPMP in reply to BeHealthi]

Dr Mohamad was absolutely wonderful. And I don't know how you can do this in that profession, but he genuinely cared. He would call occasionally to check in. He practically held our hand each step the first couple years. He also gave us his contact information if we needed anything after he left. Was truly sad he moved. I have great confidence in his recommendations.

All the best to you and your husband.

[BeHealthi in reply to JWPMP]

Thanks so much for your message and it means a lot to me at this difficult time.

Wowed…thats is rare. My husband saw his surgeon twice when he was first diagnosed, and the day of surgery before he was knocked out. That was it. All the subsequent visits were with the NP. I am not very happy with UCSF.

[JWPMP in reply to BeHealthi]

I totally get it. We have only talked with his MO Dr Borno a handful of times. We see the NP's the rest of the time, 4 different ones so far. All is via Zoom because we live 2+ hours away. We made 5 trips to UCSF 2020 & 2021. Nothing since. But to be fair, since Dr Mohamad left, Jim has been undetectable with no issues. So not much for them to do right now. The first year and a half was very busy. Dr Carrol was first contact. Once mri and biopsy took surgery off the table, he was sent to Dr Mohamad and Dr Borno. Dr Mohamad took the lead and thank God for that. Jim's case was complicated due to a prior cancer and metal implants in his pelvic region. Anyway, if Jim had been treated locally, I believe he would be in bad shape now. A friend of his wouldn't go-to UCSF and was treated here. Diagnosed same time as my husband. The doctor's here recently told him there was nothing left to do. Now he's going to UCSF and they said he's been on the wrong track the whole time. So as much as I'm terribly sorry to lose Dr Mohamad, and I'm not as happy as I was, UCSF was the best choice for our area. They have been great via messaging, responding quickly and great follow up. Sorry I was so long winded. Hope you are able to find a provider that gives you confidence. That is so important .

Take care

[BeHealthi in reply to JWPMP]

Thank you. I am so glad to hear that your husband is doing well, I wish it is the same with my husband 😥. It has been tough for me so I can’t imagined how my husband feels. We live closer to Stanford but we have picked USCF because of its reputations but we are not very happy with the care. Even the day after the surgery, his surgeon didn’t even make the visit, just the interns. I am from the old school, doctor and patients relationships are very important otherwise it will be just a business transaction, cut and pay! Now with my husband’s PSA are creeping up and if we have to move his care to some places out of town/state to get the care he needed, we will have to do it. My mistake was I didn’t suggested my husband to go straight to UCSF for biopsy and MRI, so his biopsy and MRI were done at a non NCI center. The biopsy results were cT1c, way too low…but I am glad that my husband insisted to get treated instead of AS then. Thanks so much for your message and I am very appreciative for your caring.

[LowT]

How old is your husband?

Can you post the entire path report with identifying info blacked out?

Any other health issues?

[BeHealthi in reply to LowT]

My husband was diagnosed with cancer at 62, right before his 63 birthday. He is 65 now and he has excellent health before this PC diagnoses, other than a cold here and there. I will find his surgical and post it later. Thanks.