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 a discussion with the 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.
looking for recommendations for top r... - Advanced Prostate...
looking for recommendations for top radiation oncologist in Calif or Mayo for second opinions.
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BeHealthi
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38 Replies
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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.
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.
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.
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.
What was his Decipher score?
0.69. Thanks Tall_Allen.
Yes, that would influence me to want to be treated sooner too.
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 mentioned that we have never requested for a second opinions on his biopsy or surgical with John Hopkins. I recall that my husband had talked to the Nurse Practitioner about getting one but it somehow dropped as she said she doesn’t know how to do it. Is it worthwhile to get a second opinions now ? Thanks so much for helping.
Or is it too late for it now?
Pathology after RP won't change very much at different places.
Kishan would be my choice.
Thanks so much for your help. I really appreciated it very much.
Hi, what do you think about Mark Buyyounouski, MD at Stanford? For Salvage treatments, is SBRT better than Brachytherapy? It appeared that most people have SBRT for Salvage treatments. Thanks.
You cannot have brachytherapy outside of the prostate. What's wrong with Amar Kishan?
Thanks. I am just asking as he is closer to home. I don’t care for Stanford that why we travel to UCSF. We are planning to contact UCLA on Monday for second opinions
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.
The AUA/ASTRO/SUO guidelines say to wait for BCR.
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
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.
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.
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.
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
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.
I've heard good things about UCLA, don't know where in California you are. TallAllen is the best source of information. I do agree about the Dr and Patient connection. We had that with Dr Mohamad. Would not have made it through that first year without him.
Truly hope you find the best place for situation. This is a life long difficult journey, need the best available to get through it. Don't settle. This forum has been a lifesaver. I never hesitated to pester the doctors with any questions or information I learned here. And always received a response and explanation. Dr Borno even took him off of the calcium supplement when I questioned the need due to info from this forum. It sucks to have to be the "aggressor" so to speak, but I decided it was necessary for my peace of mind. I'd be lost without this forum.
Maybe just request a consult Dr Julian Hong and see what you think of him since you're already in the system at UCSF. Theres also Alireza Ghiam at Stanford. Dr Ghiam was in Modesto for a short time and worked with Dr Mohamad on Jim's case. Dr Ghiam was also awesome, cared about our case, and personally phoned us several times, and always took time to just talk and explain things when we went to the office. Dr Mohamad said he would trust Dr Ghiam with his own family. web.stanford.edu/people/ghiam
Again, just FWIW
Thank you
Sorry i was off line as i did not want to deal with cancer today but my husband just received his PSA and its 0.106 now. I wish its just a nightmare that it would go away when I am waking up. I will look at the doctors you sent earlier. Thanks.
Absolutely do NOT be sorry. I try not to look at the forum daily because I need a break from thinking about cancer also. It gets to be too much. I am sorry that the PSA is rising, but I'm sure they can get things turned around. Jim's doctors also won't take action until he hits 0.20. You are early in your journey. This cancer is so insidious. Jim said his first round with cancer in 1992, as bad as he felt, he knew there was light at the end of the tunnel. This one he says, is draining as he knows he's never going to feel better than he does now and eventually worse. That being said, he lives every day, exercises in the morning, rides his horses, and keeps setting goals. Hope you find a doctor that shows you hope soon.
How old is your husband?
Can you post the entire path report with identifying info blacked out?
Any other health issues?
Greetings BeHealthi,
Would you please be kind enough to update your bio (all info is voluntary) which is helpful to you and to us. Thank You!
Good Luck, Good Health and Good Humor.
j-o-h-n
It might be worth your time to talk with Dr Albert Chang at UCLA about salvage brachytherapy.
Do they do Brachy for Salvage? I am devastated right now.
Yes....
There are many advantages to HDR brachytherapy for treating prostate cancer which include:
Safely escalating the dose to the tumor while minimizing the dose to the surrounding normal organs (ie rectum, bladder, and urethra)
Ability to shape the radiation dose to fit the tumor and avoid normal tissues
Minimize areas of radiation overdose (hot spots) or underside (cold spots) within the prostate
Ability to adequately cover tissue immediately beyond the prostate (ie extracapsular extension)
Free-hand technique allows a larger number of patients to be candidates for HDR as pubic arch interference and/or extracapsular/seminal vesicle involvement can be easily managed
The high dose per treatment takes advantage of the unique biology of prostate cancer
Accurate and precise delivery of the radiation dose before radiation treatment is given
Organ motion (target movement) is not an issue as the target moves with the implant
No radiation source (seed) migration to other organs
No radiation exposure to other people
Short course of treatment measured in days to weeks rather than months (as with permanent seeds or external beam radiation therapy)
Fewer urinary effects compared with low dose rate seeds
Shorter duration of androgen deprivation therapy (ADT) when ADT is used
Effective treatment for patients with prostate cancer recurrence (“salvage” therapy)
Yes they do in some cases. Jim had HDR Brachytherapy. Due to his prior RT and metal plate in his pelvis, they couldn't radiate his prostate bed so targeted prostate and seminal vesicles. That was nearly three years ago. Timotur is 100% correct.
Brachy is for Prostate.
BCR gets WPRT possibly with lymph node radiation via EBRT
Every case of prostate cancer is unique as is every patient who develops PCa. Treatment needs to be tailored and each context is different.
My case has similarities to your husband’s so am watching with interest.
My Decipher was .68 and I’m a GS 3+4 with extensive EPE and negative margins and negative ePLND #24. Cancer was in an unusual location- posterior midline surrounding ejaculation duct and would have been completely missed with standard 12 core biopsy
My PSA reached 0.1 twenty two months ago and has ranged from 0.1 to as high as 0.36 which was 8 months ago only to drop to 0.25 for several months until now reaching 0.31 .
I have unexplained endocrine issues including treated hypothyroidism, markedly elevated FSH and LH with normal testosterone and extremely low free testosterone .
Current status is watchful waiting . If it reaches 0.5 I’ll make decision on RT.
Interested in seeing your husband’s full path report.
I know it’s stressful but you are doing a remarkable job. Your husband is a blessed man.
Be sure to take care of yourself as well..
I just completed SBRT at Mayo in Rochester (prostate, SV, bladder neck, 2 lymph nodes in pelvis and 1 spot on pelvic bone) and would highly recommend Dr Stish, he and the entire team were amazing!! I am on a flight home now and truly had zero side effects (to the point I wondered if they actually turned the radiation on). I return in 4 months for follow up PSMA scan and visit to see how well I responded. I will continue on my quarterly Lupron and daily Nubequa and hope for the best!! Best of luck wherever you go.
Based on my experiences waiting to treat remaining prostate cancer post RP warrants worry. In hindsight, I feel I waited too long to have my salvage RT to the prostate bed, done at 0.11. Also in hindsight it seems my cancer had already spread outside of the gland and outside of the prostate bed before I had my RP; I waited too long to have my RP. I wish I could have a do-over but these are not available to us.
After my unsuccessful salvage RT I came to better understand how the medical complex sees this disease as a chronic illness, preferring to kick the can down the road, relying on ADT as the preferred treatment solution. All the best to you and your husband.
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