I have been diagnosed with mCSPC in May 2023 and been on Lupron for 3 months and Zytiga/ Pre since last 2 months. My PSA was initially 21.5 and as of last week is down to 0.3.
I had my PSMA scan done again today and was hoping that some lesions in regional and distant Lymph nodes would be gone but reading the report it seems all lesions that were diagnosed in May still have cancer althought SUV max in some is reduced .
My question is since PSA dropped significantly but PSMA scan results are not reflecting proportionate reduction/elimination in tumor. What conclusion shall I draw ...am I now having mCRPC or it is too early to draw any conclusion.
Any guidance is appericated.
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ST0705
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Common iliac nodes: Positive, left. Retroperitoneal (para-aortic, aortocaval, precaval) nodes: Positive. Inguinofemoral nodes: None pathologic. Supradiaphragmatic nodes: None pathologic. Bones: Tracer avid lucent lesion with a rim of sclerosis in the right iliac bone. Liver: No tracer-avid lesion. Lungs: No tracer-avid nodule or mass
Thankyou Tall_Allen for your guidance and providing curative approach. I live in Central valley, CA and am currently with Kaiser Permenante. I am however planning to move to Cigna in Jan and planning to have Radiation done at UCLA with Dr. Albert Chang. In Jan.
Should I wait till Jan for Radiation or in my situation I start early? at Kaiser? As you mentioned I need a good RO so don't want to rush doing raidation at Kaiser.
Below are some addition details from PSMA report
PROSTATE Tumor focality: Multifocal, bilateral. Uptake is less prominent when compared to prior exam Seminal vesicle involvement: None identified. Other extraprostatic extension: None identified.
You are fine for at least that time, probably a lot longer, just with Lupron and abiraterone. I would strongly recommend Amar Kishan at UCLA to do the external beam.
Does your answer suggest that neoadjuvant hormone therapy before curative intent Radiotherapy is recommended or just Ok from May 2023 to Jan. 2024, the latter STO5's intended month for starting Radiotherapy which may be as much as 7-8 months? And if so, what is the conventional wisdom for how long the longest time from start of neoadjuvant to start of RT can be?
Neoadjuvant ADT can be any duration until the cancer becomes castration resistant, which can take years. It won't help the radiation work better if used for a longer duration, but there may be other reasons for doing it; e.g., shrinking the prostate, giving cut tissues more time to heal, and changing insurance/moving.
It does not even fall into anyone's definition of "low burden." The terms "low burden" or "high burden" as used in clinical trials, refers to distant metastases (stage M1), usually bone metastases (stage M1b). Your metastatic involvement is limited to regional lymph nodes (N1 mostly). Technically, the upper ones are stage M1a, but that is just a technicality with no significance. All that is to say that docetaxel is inappropriate for you, IMO.
I agree with Tall_Allen about the timing and being aggressive with the approach. I was in a similar situation and (on his advice) got second opinions outside of Kaiser and pushed for the most aggressive treatments. Mine included Chemo.
I started with ADT and darolutamide then had chemo. When we originally met with my RO he said that being on ADT was the most important thing and it was fine to do all the radiation last. (I ended up doing radiation six months after diagnosis once Chemo was finished.). He also said that giving the ADT time to work would have benefits like shrinking the prostate. (This was a very reputable RO outside of Kaiser [UC San Diego].)
Good for you for getting out of Kaiser. You absolutely need to get expertise outside of Kaiser because they will not offer you the most aggressive approach unless you push them
Kaiser only does one PSMA Scan a day for the whole SD Kaiser region (although that may have changed since they opened the San Marcos hospital). They told me it was going to be at least a month before I got it. So, I pushed back and threatened to file a complaint with the State. They sent me to Imaging Healthcare and I was able to get it within a few days.
Hi AlvinSD , thanks for your advice. One question, did Kaiser give you Chemo (Triple therapy) or you got it done outside Kaiser? Since in my case I met Dr. Mark Scholz and he recommeded adding Taxotere to Lupron and Zytiga but my MO at Kaiser does not agree and I am fighting this battle for last one month. Her justification is that I have low burden mCSPC and there are no studies that back up adding Taxotere to Low burden case ( I have one bone Lesion). I am very much interested to go aggressive but I am not able to get support at KP and that is driving me to change insurance. Also my RO suggests to give radiation only to Prostate and not to Regional Lymph nodes due to risk of bowel toxicity.
AlvinSD: For you and others who are being frustrated with not being able to get the care you need when limited to one system/provider, if you're in Medicare, it is open season next month until December to switch to traditional Medicare, where you can go to any doctor/facility that accepts Medicare, including the several "centers of excellence" for cancer treatment around the country.
Agree! If you have cancer, straight Medicare and supplement allows you to go anywhere in the United States that accepts Medicare. I don’t get why anyone would want to limit their choices!
Is it the location? Bakersfield, Fresno? Have you checked your MO or ROs training/med school? Its available at Kaiser website.
Im with Kaiser in Los Angeles, and Taxotere was brought up by my MO, I chose to pass for the time being. MY call!
My RO not only suggested, but recommended Prostate bed, and ALL lymph nodes all the way up to the commons, even though I only have one Iliac glowing in my PSMA. (Prostate gone via RP 5 years ago)
Bowel toxicity? Temporary SEs, yes. Im 100% fully functional under 2 months post. The lack of side effects is reflective of my ROs talent.
Ive been on Lupron/Zytiga/Prednisone for a year. Lymph node size and SUV greatly shrunk, but has not disappeared. Next PSMA next month to reveal if RT did the trick.
You can go to UCLA. Great people.
Another option is to ask to be treated in Los Angeles (Sunset Hospital). It's considered a Center of Excellence in Hematology/Oncology, and Radiation Oncology. You can get an RO for the radiation you need, see an MO if you want chemo. Also Kaiser will put you up in one of their apartments 1/2 block walk from the building during RT and chemo, if you qualify.
If you are going to the cure as per TA recommendation than it is better not to poison yourself with chemotherapy.
If you are incurable than chemo would have some benefit. Just know that our fight will end once we accumulated too much toxicity and there are no more treatment available for that reason like low platelet count etc.
Therefore the best option for you now to try to get a cure and don't miss that window of opportunity.
I am really not a doctor only thinking with my head therefore try to find a good doctors like Tanya Dorff, Sartor etc.
Originally Kaiser only wanted to give me Eligard and Zytega and to “consider radiation at some point after speaking with the RO.” We were not comfortable with that (as well as the ‘care’ we initially received from Urology) so we told the MO we were getting second opinions outside Kaiser from Scripps Clinic. He was very supportive of it
Dr Mike Kosty (Medical Oncology) at Scripps Clinic and an outside, private Urologist both independently had the exact same recommendations: continue Eligard, change from Zytega to darolutamide then start Docetaxel. We went back to my MO and told him about the recommendations, how we wanted to be as aggressive as safely possible and he agreed. I also have (had?) only one small bone met but also more extensive LN spread.
For radiation, originally the RO only wanted to irradiate the prostate and bone met. But, after we discussed being as aggressive as safely possible, he added the pelvic LN region as well. (I think the radiation field went as high as my L4 vertebrae.). He was concerned about too many side effects from irradiating the LNs higher up around my aorta. So, he felt it was better to leave those alone and let the Chemo/ADT/darolutamide take care of them.
I did have pretty significant nausea from the wider radiation field which affected my GI tract but it was very manageable with low dose THC.
I am super happy with my decision and very glad I got second opinions and pushed back. I’d definitely do it again.
Thank you Tall_Allen! Would you recommend radiation in addition to Zytiga and Eligarde for an almost 80 year old man ,with other health conditions, as well? My husband seems to be doing well on the Zytiga/Eligarde (PSA has gone from 51 to .16 since February, and his psma scan looks much better, if not perfect) , but his doctor is reluctant to try anything curative, like radiation.
I double agree, as I would say to girls my age when I was 10 years old (hey computer Wizard would you please put a smiley face "HERE"..... thanks).....
I had what TA is telling you to do and was and am with Kaiser. So not sure why you would need to necessarily "go outside of Kaiser" unless of course they don't agree wheras you could appeal based on a qualified second opinion. This is what I did that got me on zytiga, my first ADT round, as it was not SOC yet. Unfortunately, this decision bumped me out of the first clinical trial I went for on recurrence. So decisions made now have consequences down the line. But none of that matters if your cured. Which I hope very much you are. Good luck.
Hi treedown , I had few experiences at Kaiser that are not expected of a reputable institution as Kaiser. They did not give me Casodex along with Lupron and made a mistake which KP admits. Also they gave me wrong report for PSMA scan and when I challanged, they rectified the report. They are not in favour of aggressive treatment even after showing external advice from Dr. Mark Scholz. My urologist initially read my MRI report wrong and then apologized. I had too many bad instances..cant trust them any more
I completely understand. Had that happened to me I would have felt the same way. Sounds like you a great advocate for yourself so thats great. Unfortunately where I live Kaiser is one of 2 insurance companies available and would be at the same cancer center (not a Kaiser facility) regardless. I have checked my care against others on this forum and I don't feel that I have missed out on anything had I chosen to go out of pocket to a centernof excellence. Frankly I would have bankrupted my family if I had even tried. Hope you find a place that suits you and I hope a cure is in your future. Take care.
My diagnosis was bungled and delayed by Kaiser Urology from the very beginning, with many mis-steps and poor communication from multiple doctors and staff in the entire department, so I totally understand not being able to trust them. (I’ve had multiple, different people seen by KPSD Urology who have shared very similar experiences. So, unfortunately, it’s far from uncommon.)
Even the uro-oncology “expert” Kaiser Urology had me see after my initial complaint gave me questionable advice:
1. “If you are getting radiation, there is no way they will do it unless you get a TURP first.” (He even put that in his notes.). Both the ROs at Scripps and UCSD completely disagreed based on my AUA symptom score index. (Kaiser has never had me do the AUA LUTS symptom survey.).
2. “PSMA PET Scan has no value. No need to do it.” (Kaiser Oncology, Scripps and UCSD all disagreed. They said it was essential to determine the true extent of spread. It was the first scan that both Scripps and UCSD wanted to see.).
3. “There are no clinical trials for you. You only have mCSPC. Just stay with our standard of care. You can get more medicines later if you need it.” Had he even looked on clinicaltrials.gov, he would have seen several including one at Scripps and one at St John’s in Santa Monica. Also, this same Urologist had no awareness of the ARASENS trial.
4. “If you really need it, you can get Cialis. Ask your Primary Care. It’s really ‘mind over matter’ when it comes to dealing with the side effects of ADT. Mind over matter…”. Nothing proactive about sexual health related issues. I had to push them to get Cialis and discuss using a pump. Had I not brought it up, it would have never been addressed.
Kaiser absolutely does not care about men with prostate cancer and providing optimal care or any support as they deal with the many impacts from treatment. Factory medicine at its ‘finest’.
I've had very good care from Kaiser So Cal since my original "suspicious" PSA in 2018, through the "watch and wait" phase to biopsy (12/2019). I was offered participation in several trials and had SBRT in 4/2020 when their entire hospital system was swamped with COVID. Was able to get PET-PSMA when PSA started up 18 mos after initial treatment. Triple therapy was not offered because the STAMPEDE protocol showed insignificant difference when added to the Lupron/Zytiga for my situ. I was offered (and took) RT at 7 mos and worked through the side-effects. I'm a pretty fickle, self-centered guy so that if it starts escalating at some point, I'll probably pile on Kaiser for not offering the docataxel but honestly, it seems like I've gotten the very best treatment at a time when I knew nothing about any of this. I did shop for doctors within the system by looking up bios and getting meet/consult appointments till I was comfortable with an RO.
The problem with Kaiser is Urology Care is extremely variable from Service Area to Service Area (Areas within the Southern California region). I’ve heard multiple significant complaints from different men treated in San Diego where I’ve also heard of people really happy with their Urology care out of Woodland Hills. It’s not the consistent care that they like to brag about when they say how “great” their integrated care model is.
Yeah, good point. I'm at Kaiser Orange County which has quite a mix of doctors. But from what I read on this board, there is a wide variety of MO's and ideas everywhere about the best way to treat this crap. It was actually a brilliant RO within Kaiser that got me SBRT before it was SOC at Kaiser and recommended for me an MO that pushed the STAMPEDE protocol. I'm sold on the value of clinical studies for treatment options and oncologists who keep up with those studies. Whether they are at Kaiser or UCLA or ? may not be the only critical factor.
If you are already going to UCLA, which is a very good change from Kaiser, and adding to TA's comment, I recomment that you visit with Dr. John K. Lee who is a brilliant MO that just went back to UCLA after being a professor and PCa researcher at Fred Hutch. I have three bone sites and several pelvic LNs that lit up my first Psma scan. After Hoag started me on Firmagon (only) onJuly 3 as part of their "plan" of ADT for two months followed by Radiation, I sought a second opinion at UCLA. I was fortunate to get in guickly and met Dr. Lee. I had had extensive pathology cellar testing done, and when I got to UCLA, Dr. Lee had already studied all reports from the Hoag system; he explained that my approach needed to be more aggressive than just ADT and radiation. I just finished my 3rd cycle of chemo. I am on Firmagon, Docetaxel, Fulphila, Prednisone, and Nubeqa. Some people might call this the "kitchen sink" approach, but I don't care what they call it!
3 more cycles to go and PSMA scan again in December. Then the radiation. You owe it to yourself to not only talk to the top RO, as TA suggests, but also a top MO. Good Luck!
Hi Carnivore45 , thanks for your advice and providing Dr. Lee's reference. One question, Is your mPC classified as low burden or high burden because I am being told at KP that I cannot get Taxotere since I have low burden mPC. I see you received triple therapy at UCLA so curious how did they agree to triple therapy while as KP does not. I met 3 MO's at KP and every one said triple therapy not required
That is exactly right. Kaiser doctors will generally be in lock-step with each other when it comes to treatment recommendations. I’ve experienced it and others have as well. A true second opinion is going outside Kaiser. I also will say “I don’t feel comfortable with the information I’m getting from you and your department so I’m going outside Kaiser for additional opinions.” They really hate that and I think their response is telling.
Hello ST0705. TA may have a better reponse about how a hospital system might make their decsions. This PCa stuff is very new to me. The various categories become quite confusing. I am classidied as "mHSPC with low metastatic burden". There may be other criteria at play that requires a deeper dive into the indvidual patient. I appear to have a heterogeneity of androgen resceptors, meaning cancer cells could escape the ADT therapy, and that may trump the burden criteria, if the latter is even consiered at UCLA. I really don't know. I have read articles recently about other UC sytem cancer centers (San Diego for one) making triple theraply the standard. To be clear, UCLA did not agree to triple therapy, they recmmended it. That is why I am there.
Sounds like you are doing great and on top of things.
I haven’t been on the site for a couple years. I needed a break after my husbands 4 year battle.
Every man is different. Just wanted to share my husbands experience. His PC was very aggressive. He had prostate removal then needed radiation to the prostate bed, on hormones which the hormones worked well. Other treatments did not. He was taken off hormones after positive lymph nodes removed and shortly after he developed lesions on his spine. SBRT was done twice a year apart and had little to no effect. Our doctor recommended Lutecium. Things were getting very out of control.
Thanks to a gentleman on this site (that I give full credit to for saving my husbands life) we traveled to India and my husband was treated by Dr Sen at Fortis Memorial. He had an unbelievable response to LU177. He has been off hormones for 2 years now and is undetectable and feels great thank god still. The last 2 years has been so peaceful and we are blessed.
He’s never had chemo which I’m certainly not against but I’m pretty happy with the last treatment he had and the outcome. He’s probably one of the only airline pilots in the world to come back from stage 4. Life is good.
Just something to put in your back pocket. All the best.
Hi ST0705, you’re in good hands with Chang at UCLA, that’s a good first step along with EBRT pelvic radiation. Over four years ago he treated me for Stg 3bN1M0+SV, and to date I’m still undetectable. The only difference in your case is you may be oligometastatic with that uptake on the iliac bone. You may consider carefully doing chemo for that reason. If your Gleason was higher that 7, I think I would do chemo. Note, Scholz also recommended chemo for me, but I turned it down based on studies that showed it didn’t make any difference for < GL-7 and HS-PCa. [I was GL(3+4), see profile]
I see, ok, I agree on chemo with 4+4 and a possible iliac met. Chang is a very important first step. Talk to him/Scholz about the timing of chemo with HDR-BT and EBRT. I really wish you the best.
mCSPC = metastatic castration-sensitive prostate cancer. Metastatic castration sensitive and castration resistant prostate cancer (mCSPC and mCRPC) are prostate cancers that have spread to other parts of the body. Use of the drug docetaxel with androgen deprivation therapy can improve survival for men with mCSPC.
PSMA = prostate-specific membrane antigen. Prostate-specific membrane antigen (PSMA)-targeted therapy is a type of normal cancer therapy. It uses a radioactive tracer (radiotracer) to target and destroy PSMA, which is a protein on the outside of prostate cancer cells.Feb 2
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