So here is what the UCSF doctors decided. Trying to figure out how to feel.
PSA is now down to 0.3 from 51.3 in December
Quote:
We had a long discussion Friday. Everyone said no brachytherapy. All the evidence we have point out that external beam is the way to go when a patient has disease in the bone. While we are not 100% certain but the radiologist thinks it is most likely cancer.
The metal in your pelvis and the prior radiation complicates the case but either way, the only thing that the guidelines endorse is the radiation to the prostate and the bone lesion. We will not be able to treat the nodes but again the guidelines do not suggest we should treat the nodes.
For 2 reasons:
1- He has disease in the bone. When patients have disease in the bone, we do not treat the bones. (I think he meant nodes as they plan to zap the suspicious spot)
2- He had prior radiation for his testicular cancer. Retreatment will cause a lot of toxicity. Initially we were hoping that we could treat only one side, but the new PET scan showed disease on both sides
There will be no spread of the cancer for a long time as long as the cancer is responding to hormone therapy. The evidence for this is that your PSA keeps dropping and is 0.3 from today.
After some time (in the order of years), the cancer "may" become hormone resistant at which time we will change the kind of hormone therapy.
Dr. Ghiam said that he will treat the bone lesion. (He will also do 20 EBRT to the prostate)
And I will continue to work with you and with Dr Ghiam.
End Quote.
I'm feeling quite blue to say the least.
Thank you all
Paula
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Extremely pleased with that.but sounds like throwing in the towel other wise. Hoped UCSF would have more options. Maybe when the time comes they will. Our Medical Oncologist is there, Dr Hala Borno. Won't be changing that.
one more question. I saw on other threads where you mentioned there was advantage to adding chemo pill to eligard + abiraterone early on for metastases. Should I ask Jim's MO? And isn't there some new Lu177 (can't remember what it's called) treatment or something like that ? Or why wouldn't they remove the LN surgically?
In fact, the PEACE1 RCT explored exactly that - the combination of debulking the prostate, adding abiraterone and adding docetaxel. It's definitely worth talking to his MO about.
Lu177-PSMA-617 hasn't yet been approved, and when it does it will only be for castration-resistant patients who have already had chemo and at least one advanced hormone therapy. There will be a clinical trial that he may qualify for:
There is no point in removing the single LN surgically and it can create problems like lymphocele and lymphedema. Lymph is a fluid that carries cancer cells throughout the drainage area. The only thing that is sometimes done is to treat the entire pelvic lymph node area, but because of his previous radiation, they can't safely do that. It is also in his bones. There is much more cancer than just what you can see on imaging.
I cannot thank you enough!Your explanation makes more sense than anything I've heard yet.
He actually has two lymphnodes in pelvic area, right and left side. Also has a couple in the Abdominal area, they are not enlarged but showed the PSMA uptake or however you say it.
I had thought that with the precision of SBRT they could get them without harming surrounding tissue.
Really appreciate your insight!
Also, Jim is on Lupron & Abiraterone...so Docetaxel would be added as the third is that correct?
Once it's in the abdominal area, it's outside of the pelvic lymph node drainage area, so even treatment of the entire area would be futile. Picking off individual lymph nodes (surgery or SBRT) is not a good idea.
Such a relief on my mind you have given me. So little makes sense, but if I can wrap my mind around some logic behind the decisions I don't feel as angry and stressed even with unwelcome news.I will message Dr Borno and reference that study. I've asked her about other new treatments in the past and she has been very nice about my inquiries.
We communicate so much better face-to-face. I usually go in with written questions but often veer from the script. It helps to have two people listening and writing down answers. Still, doctors speak Medicalese and it's going to mislead a layman when the terms are used differently in plain English. I always debrief with patients afterwards to make sure we heard the same thing. I also try to write a very short email afterwards thanking the doctor, summarizing what was discussed, and re-capping agreed next steps. I guess it's a habit from years of running business meetings.
Excellent. I've taken notes on the zoom & phone calls, but your protocol is excellent. Even with all my notes I've gotten things incorrect, so great advice. It is much better face to face.
Thank you for the tips.
I really do appreciate you sharing your experience and knowledge. Truly
Here is Dr Mohamad's reply when I asked about surgery to the nodes (which you already confirmed was not a good idea but I had already asked)Quote:
Regarding the lymph nodes, there is not benefit for surgical removal at this moment. The lymph nodes will not cause any problems as long as the disease is responding to hormone therapy.
I know it is difficult to cope with this new reality of the diagnosis but we are here to help. If you would like to have a second opinion, I am happy to facilitate. I know that you trust me but it is not about trust here. I want you to be confident about the decisions we are making. I can either facilitate a second opinion in UCSF or any where (stanford, MD anderson, etc).
Dr Borno said the data doesn't support adding chemo to Jim's case at this time. She did not say why. I'll probably ask for more detail after his RT which will start in a few weeks.Thank you for pointing out the study.
If he has previously been consulting with the "beginning" Urology/Surgery/Radiology type folks at UCSF, such as Dr. Carrol, and getting local tests and treatments closer to home, with confirmed disease metastatic to bone, he may now want to transfer his UCSF Consultations to the UCSF Genitourinary Medical Oncology folks, at the UCSF Mission Bay site.
I understand the feeling blue, and several other types of emotions, so soon after getting a confirmed diagnosis of worsening disease. I was first diagnosed with Very metatstatic, incurable (but treatable) Stage IV prostate cancer at age 65, back in Nov 2013. You two are in this for the long haul. Live well and love one another each day at a time.
Thank you so much!Yes we started with Dr Carroll. We have now been consulting with Dr Mohamad UCSF for Radiation planning and Dr Roach has been involved in the Radiation treatment discussions. Dr Hala Borno at UCSF is his Medical Oncologist. All tests, biopsies, scans etc have been done at UCSF. So now they are handing us off to our local RO for the actual Radiation treatment since brachytherapy has been taken off the board.
That's why I feel blue. And I was hoping for some input as to the conclusions they drew at UCSF...
Anyway, good to hear a long term survival story thank you
Hi again, Paula. I did not really "start at the beginning" and have a usual prostate biopsy and an associated Gleason Score and then some kind of initial localized prostate treatment. I was heavily metastatic at original diagnosis, with a bone scan that lighted up like a Christmas Trees and a ridiculous PSA of 5,006 and lots or enlarged lymph nodes. They did sample one large abdomenal lymph node just to confirm the diagnosis, and it showed characteristics of a Gleason 8. I went straight to systemic treatment(s) for Stage IV prostate cancer, which have evolved somewhat during the past 7+ years. Tall Allen has already mentioned some more recent ideas to explore with your Oncologist.
Thank you for the links!Hard for me to understand.
Am I correct in that it's suggesting if they don't treat all the metastases it doesn't help PFS, for example, if they zap the bone met but not the LN, is there no benefit?
You should try to treat to treat all metastases. Treating only half of them will not reduce the PSA value very much. I would try to radiate all the mets with SBRT / SABR which can be done in about three radiation sessions. Just as described in the study. SBRT can target mets at almost any location in the body and limit the radiation field to the mets only.
You have every right to show the study to your husband's Doc and ask why iif/why it does/doesn't apply to your husband's case? You can learn much more by using Google and treatment for oligometastic disease and SBRT for meatastasis
They keep saying because of all the metal in the region, and his previous RT, but it was 29 years ago.Then they say "guidelines endorse", well at UCSF they SET the guidelines so I don't see where they would be bound by them.
yes they say one single. There are 2 pelvic nodes and they didn't indicate number but said a couple of Abdominal nodes that were not enlarged but showed the PSMA uptake or whatever you call it.They say they are not 100% sure the bone spot is cancer but the radiologist feels strongly that it is.
Also- I just read the study you refer to in the first link and I believe it states exactly the opposite. "Radiotherapy to the prostate did NOT improve overall survival".Am I missing something?
I should have pointed out that I refer to the "low metastatic burden" subgroup analysis in this study. See figure 4 A and 4 C for the results of this subgroup. Here is a press release which points this out:
Tall Allen’s advice looks to be the most on-target. The PEACE1 protocol of adding up front docetaxel provided substantial and surprising amount of benefit. Targeting individual mets only if there are very few. The one bone lesion being targeted to protect his skeleton. Good that there is only one visible. Systemic treatment needed now as has been said. Here is link to T_A’s article on PEACE1 with references:prostatecancer.news/2021/05...
I had my prostate and several nodes debulked back in 2014 after being dx stage 4, G9 with mets throughout my skeleton. I recall Snuffy Myers saying it was one of the best things I could have done (eliminate the mothership). I went on to have other treatments (you can read profile). I had a long run, about 6 years of undetectable PSA. It recently became barely detectable again and that’s my plan going forward per Dr. Sartor, get a PSMA when they become available here in ATL and let’s see what we’re dealing with and use SBRT. Seems like your plan is similar.
I have a question for our group. If I understood you correctly, part of the plan is to radiate your prostate- is that correct? If radiating the prostate is helpful, wouldn't removing it also be helpful-potentially more even helpful than radiating it.?
Or, is it being radiated simply to shrink it so that the size of it doesn't interfere with other "parts" of your body located nearby?
I am NOT advocating removal, (even though mine was "experimentally" removed 9 years ago. It 's my understanding that removal is NOT helpful and is NOT the standard of care. But- IF radiating could help, wouldn't removing it be better?
The tumor was too large and it had bumped up against the rectal wall. Also left side seminal vesicle. Dr Carroll at UCSF said not a candidate for surgery. They decided to shrink it for 3 to 6 months before RT. They also can't radiate the entire pelvic region due to prior RT for testicular cancer in 1992 AND he also has a titanium plate and screws in his pelvis due to a horse wreck in 2005 where he broke his pelvis. He also has a metal hip replacement and the single bone spot is right where the hardware is. So several complications interfering with what they originally wanted to do. But surgery was off the table back in September. I have read that Radiating the prostate can be as effective as removal, but different complications and limited options down the road for each procedure. Don't know how accurate, but that's what I've read. I think its a subject of much debate.
My doc at the time was world-renowned Howard Scher at MSKCC in NYC. I was 54 years old. He told me the SOC was to NOT remove the prostate but that he had done so on 12 "young" patients like myself, who were otherwise healthy and could tolerate the surgery well. He explained that it might not be helpful but there was a Theory he had for why it might be. I remember him saying that in breast or lung cancer the breast, lung or the tumor is removed. I wanted to be aggressive and do whatever might help. I assessed the risks and went for it. Honestly- I don't recall a discussion about lymph node removal prior to surgery, but I assume my memory just fails me. But- yes- along with the prostate they removed 30+ lymph nodes, of which one ended up testing"dirty". It seems as though removal of the prostate in metPC has been shown NOT to help, but I di have it done, along with the lymph nodes.
In 2019 I was diagnosed with prostate cancer and my PSA was 10.98 and I had mets galore - on my Pet scan I lit up like a Christmas tree. My spine scan was shown to an orthopedic surgeon as it had so much metastasis that my oncologist thought I might need structural repair. I went to Bangkok and had three rounds of Radioligand therapy (Lute-177) in 2020 and one round this spring. my last pet scan showed no mets and my spine had completely regenerated. Unfortunately, aggressive cancer in my prostate was still problematic so my Thai oncologist called up 20 rounds of IMRT. My final scan showed that I can now come home and manage my condition with an Enantone shot every three months. It was expensive but hey - what's the going rate on a life these days? I get a whack back in income tax because these treatments are not available to me in Canada because it is in clinical trials (they have been available in many countries for over a decade).
that is incredible! and I agree wholeheartedly, no price on a life !!! My husband however, worries constantly about money and says he's not going to bankrupt us and die anyway. So getting him to get put up the dollars would be a challenge. Our property is paid off and I would sell the whole thing, cows, horses, all to get him the best treatment possible. But not Jim. So I'll have to "patiently" wait a bit longer. Thanks for sharing that info, it may come in handy down the road.
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Good news from visit at Mayo
18F-DCFPyL PSMA PET/CT Scan Result
Importance of ADT
Does my MO’s plan with UCLA’s PSMA scan make sense?
Crossroads - ADT or wait for psma pet/LU 177? Meeting with oncologist to discuss tomorrow 
