I've been researching and meeting with different doctors to get their recommendations for treatment. I'm zeroing in on a plan, but I'd like to get some feedback from you all.
I was diagnosed in 2017 and have been on AS since. Recent testing (MRI, Biopsy, PET/CT scan) shows 3+4 with about 20% G4 in two cores and overall cancer just under 50% in one core, 20% and 3% in two other cores. Some large cribriform cells were detected via biopsy and PNI is noted. MRI and PET show no metastasis and no evidence of cancer outside the capsule, although 2nd opinion biopsy pathology report (Johns Hopkins) stated extra capsular extension identified. A third report (City of Hope) contradicted that. Two doctors since then (see below) were also skeptical.
I've seen Dr. Lau at COH, Dr. Wong (HIFU) at COH, Dr. Kishan (UCLA), Dr. Reiter (UCLA) and Dr. Ahdoot (Cedars Sinai). I also spoke with radiation therapist at Riverside Medical Center in Virginia.
Surgeons Dr. Lau and Dr. Ahdoot were both skeptical of the ECE noted on biopsy.
Dr. Lau and Dr. Reiter (also a surgeon) both thought RP would have "slightly" better outcomes than SBRT. Dr. Ahdoot said he wouldn't recommend surgery for me due to the tumor being next to the nerve bundle. He said he would recommend a high-resolution ultrasound probe to look more closely at the edge of my prostate to see if there's any bulging or other clues about possible ECE. He said he would also strongly consider HIFU for me.
Dr. Kishan offered to put me into the HEATWAVE clinical trial which is MRI-guided SBRT + Apalutamide for one year. The trial also incorporates mapping prior to each session instead of just one mapping session for the whole course of treatment.
Dr. Reiter (surgeon/UCLA) told me to consider the long-term risks of radiation considering my age and life expectancy (I'm 60), but added that he is biased toward surgery. Dr. Ahdoot thought SBRT + Apalutamide would be over-treatment in my case.
My primary concerns are:
- Getting a cure done with one treatment vs needing salvage treatment
- QOL in general (all treatments have their QOL risks)
- Long-term side effects and potential new cancer (if SBRT)
My thoughts:
I've essentially ruled out RP due to the possibility of ECE and the tumor located next to the left nerve bundles. It seems that in my situation I'd be the recipient of the worst case outcomes with RP: ED and the likelihood of recurrence requiring salvage radiation if there's ECE.
I'm strongly considering the HEATWAVE trial, but have concerns about Apalutamide for a year, ED developing slowly over time, and possible new cancer(s) developing 10-30 years out considering my life expectancy. I'm in excellent physical shape and have a family history of longevity well into the 90's.
I know there's a lot of controversy regarding focal therapy, so I have mixed feelings about it. HIFU still has some side effect issues, although less than with surgery, and continued requirements for biopsies, MRIs, etc, plus the possibility of recurrence, esp in my case.
I'd like to hear anyone's experiences with any of the above treatments and any recommendations for continued due diligence prior to choosing treatment.
I will say that I'm leaning toward the HEATWAVE clinical trial as of now.
Thanks!!
Written by
PTvsPC
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Is the apalutamide monotherapy? If so the side effects are less than ADT but gynocomastia is common so you could consider prophylaxis : breast radiation or tamoxifen if permitted on the trial.
I believe it is monotherapy. When Dr. Kishan told me about the trial, he mentioned that Apaluatmide would be used instead of Lupron. He went on to discuss the differences between Lupron and Apalutamide, so I'm deducing that it's monotherapy.
I never thought about breast radiation or tamoxifen. I'll ask him if it's allowed during the trial. I'm pretty skinny, so not sure if gynocomastia would be seen in my case, but what do I know?
Since they are collecting adverse effects, tamoxifen would probably not be allowed (but you could take it i guess). I remember seeing pretty high rates of gynocomastia for similar drugs like enzalutamide monotherapy (85%) and being skinny is probably irrelevant.
I certainly wouldn't rule out the possibility of gynecomastia. Proactively bring it up and get satisfactory answers. Using apalutamide without ADT could lead to it, from what I understand.
They just sent documents describing the trial in more detail and they mention they offer radiation to counteract gynecomastia as needed.... further states side effects or new cancers due to the radiation are very rare.
I would avoid HIFU. Our member Brysonal had Gleason 3+3 and has HIFU and his cancer did escalate. (You could see his profile).
TA said that HIFU is not approved by FDA if I good remember. (One more reason to avoid HIFU.)
Could you contact professor Stricken in Darlinghurst, NSW Australia about a feasibility of nano knife procedure? I believe you said that your tumour is only 5 mm. (But I don't know about the position of the tumour and it's influence on the final decision.)
Could you also ask professor Stricken about the possibility not to do any procedures?
Maybe you already know enough about your tumour and could answer the above questions not doing anything.
What's about doing degarelix ADT injections plus apalutamide for some time and after that consider robotic surgery by someone experienced in robotic surgery? Maybe you could ask for recommendation from professor Stricken?
I don't understand how high resolution ultrasound would be more precise than MRI in diagnosis of your cancer?
My medical oncologist professor Joshua would say that only the pet CT scan with contrast would see what is cancer and what is not maybe combining it with MRI and if you really want high resolution ultrasound diagnosis?
I am not a doctor just my opinion. I would try to contact professor Stricken for at least a second opinion about all of this instead of this forum.
I personally would not do anything if I were Gleason 3+4 and low PSA small tumour favorable genetic score for metastasis.
All this doctors want business or a guinea pig for a clinical trial.
If you come to Darlinghurst NSW Australia you could also see our Elektra Unity MRI linac SBRT operator in Genesis care and ask him for opinion.
**Opinion on Prostate Cancer Treatment Decision:**
**1. Understanding the Clinical Scenario:**
- **Diagnosis:** Intermediate-risk prostate cancer (Gleason 3+4, 20% Grade 4 in two cores) with adverse features (cribriform morphology, perineural invasion). Conflicting reports on extra-capsular extension (ECE) from pathology reviews.
- **Imaging:** No metastasis on MRI/PET-CT, but ECE remains uncertain.
- **Age/Health:** 60 years old, excellent physical health, family longevity into 90s.
---
**2. Key Considerations:**
- **ECE Uncertainty:** Resolving ECE is critical. If present, surgery (RP) may require adjuvant radiation. Advanced imaging (e.g., multiparametric MRI, PSMA-PET) or targeted biopsies could clarify this. High-resolution ultrasound (suggested by Dr. Ahdoot) may offer additional insights but is not definitively superior to MRI.
- **Treatment Goals:** Balance curative intent, quality of life (QOL), and long-term risks. Patient priorities lean toward avoiding salvage therapy and minimizing side effects (e.g., erectile dysfunction, incontinence, secondary cancers).
---
**3. Analysis of Options:**
- **Radical Prostatectomy (RP):**
- **Pros:** Curative for localized disease; definitive pathology clarifies ECE.
- **Cons:** Risk of ED/incontinence (especially with nerve bundle proximity); potential need for salvage radiation if ECE is confirmed post-op.
- **Surgeon Variability:** Seek a high-volume surgeon experienced in nerve-sparing techniques.
- **Cons:** Long-term risks of secondary malignancies (low but non-zero); Apalutamide side effects (fatigue, rash, cardiovascular effects). Over-treatment concerns for intermediate-risk disease.
- **Focal Therapies (HIFU, Nanoknife):**
- **Pros:** Less invasive; preserves QOL.
- **Cons:** Higher recurrence rates in intermediate-risk cases; not FDA-approved for cancer cure (HIFU is approved for prostate tissue ablation). Requires rigorous surveillance (biopsies/MRIs).
- **Active Surveillance (AS):** Not advised here due to Grade 4 components and adverse features (cribriform, PNI).
---
**4. Addressing SeasidPTvsPC’s Suggestions:**
- **HIFU Avoidance:** Reasonable for intermediate-risk with Grade 4, given higher recurrence rates.
- **Nanoknife (Irreversible Electroporation):** Limited data in intermediate-risk; consult experts like Prof. Stricker (Australia) for feasibility.
- **ADT + Apalutamide + Surgery:** Neoadjuvant hormonal therapy isn’t standard for intermediate-risk but could be explored in trials.
- **Resolve ECE Uncertainty:** Pursue advanced imaging (PSMA-PET) or targeted biopsy. This will guide surgical candidacy.
- **Multidisciplinary Consultation:** Engage a tumor board or international expert (e.g., Prof. Stricker) to reconcile conflicting ECE opinions.
- **HEATWAVE Trial:** Weigh the benefits of precision SBRT against Apalutamide’s side effects. Ask about trial endpoints (e.g., biochemical recurrence vs. survival) and hormonal therapy duration.
- **QOL Focus:** Prioritize treatments with robust data on long-term functional outcomes. For example, SBRT has comparable cure rates to surgery in intermediate-risk with lower acute morbidity.
- **Consider Tertiary Referral:** Centers like MSKCC, Mayo Clinic, or international hubs (e.g., Genesis Care in Australia) offer cutting-edge diagnostics/trials.
---
**6. Final Thoughts:**
The HEATWAVE trial is a reasonable consideration given its innovative approach, but ensure informed consent about Apalutamide’s risks. If ECE is excluded, surgery by an experienced robotic surgeon could offer a definitive solution. Focal therapies remain a middle ground but require acceptance of higher surveillance burden. **Shared decision-making** with a trusted oncologist, integrating your values and risk tolerance, is paramount.
Yeah, I'm not too keen on focal therapy at this point. You get some of the disadvantages of more definitive treatment without much more advantage. Plus, there's the continued monitoring/worrying afterwards.
Thank you for all your input - it's super helpful!
My tumor is about 10mm and runs along the left edge. It's difficult to see on imaging where the capsule boundary is. Dr. Ahdoot suggested inserting an ultrasound probe as close as possible at that boundary to see where it really is and what's going on - any bulging, for example. He suggested doing this IF I wanted to pursue HIFU. The reason being that since my tumor runs right along the edge, he'd be concerned about heat damage to the nerves (halo effect) which would defeat the purpose of HIFU in my case - QOL for now and possible cure.
I don't know of professor Strickland, but I will check into him for sure. All of the specialists I've seen so far have indicated that I should pursue treatment at this point. I have been on AS since mid 2017.
I do have a low PSA score, but it's because I have a tiny prostate (14cc) due to finasteride 1mg use for nearly 30 years. My prostate never grew. My last several PSA scores were around 1.9. It was 0.9 two years ago, so it appears to be progressing.
My Decipher score is .67 which is just entering the high-risk category, which is .66, I believe.
I'm not against a clinical trial on principle. I think the care could potentially be better than SOC from what I understand.
If you come to Sydney Darlinghurst NSW Australia you could talk to professor Stricker he would definitely want to biopsy you and he only believes in his biopsy results plus you could maybe see my oncologist professor Anthony Joshua and Genesis cancer care high precision MRI Linac Elekta Unity machine operator. They would even do 25 times a radiation each 45 minutes sitting with the high precision MRI Linac machine if it would be better for you. (I am not a doctor). But maybe you could have less side effects? The name of the MRI Linac machine is Ace.
My understanding is that it is challenging to diagnose you properly in order to go further. Professor Stricker could probably do the biopsy again and that is his speciality.
I definitely would not do HIFU. See Brysonal profile. They bullied him into HIFU.
Initially, RALP in Germany with "frozen sections" and mildly extended lymph nodes disection (20/0). This is standard practice for central Europe, but as I hear, difficult to source in the US scene. Success would had been 3-5 years treatment free post operation. Yielded only 2.5 years, hence, failed expectations. It was COVID time and had to find an interim treatment to block progression.. I got lucky with my self-directed Bicalutamide Minimum Effective Dosing scheme for 40 months now and counting, when my initial target was for 1-2 years. It is a gamble. in some you loose while in others you unexpectedly succeed.
I was G10 and patient #1 on Dr. Kishan’s MIRAGE trial for MRI guided SBRT. Treatment at 50, 26 months of Lupron+apalutimide. I figured I needed to deal with the cancer I had rather than one I might get. 4.75 years after treatment and almost 3 after ADT and I have no significant side effects. I made it 26 months of ADT still having sex the entire time and not gaining weight. No gynocomastia.
Not like normal, I’ll say that for certain but certainly well enough. After recovery it’s much higher than before. My T is much higher as well. All I can encourage is work out as much as you can. My T was back to normal pretty quickly after stopping ADT.
I figured it would be ZERO for me, so what you're saying to me is very encouraging! Also, apparently I would only be on Apalutamide, so it remains to be seen how that would go.
You were on ADT as well so the risk is much lower. Gynocomastia rates are much higher for monotherapy where testosterone remains high and testosterone is converted to estrogen via aramotisation.
Gynecomastia and/or breast pain can be observed in up to 85% of patients after therapy with high-dose nonsteroidal antiandrogens, negatively impacting patients’ quality of live (QoL) and treatment compliance.
I doubt you’ll find many with confidence in HIFU, but if you want to explore that option then look into a specific type of HIFU called TULSA-PRO. It differs in that the ultrasound energy is delivered from within the prostate via a trans-urethral probe and then specific amount of US energy delivered is continually adjusted based on the actual heating of the cells by the US energy delivered. That temperature monitoring is accomplished by performing the procedure while the patient is within an MRI that can track the temperature of the cells in real time and adjust the US energy delivered so sufficient heating of cells for adequate destruction can be provided. The patient is under general anesthesia and paralyzed to prevent any motion during the entire procedure. Ablation of the entire prostate with or without nurse sparing can be performed or just portions of prostate tissue treated. A randomized clinical trial is underway at several centers to assess the outcomes directly compared to RP.
This is not meant as an endorsement or recommendation, but it is a much more advanced form of HIFU that may be appropriate for some and may prove to be a significant advancement it treatment options. It is Medicare reimbursable.
I had Gleason 9 localised PC. I nearly went for RP as the surgeon was recommending that. Fortunately I asked to see an oncologist, and got a very different story. Oncologists view was much more scientifically based, with scores for possible local spread which the urologist had discounted. Also risk of BCR and SE's are lower compared with RP.
It seems like there's an awfully high chance of recurrence with RP. I've lost a few friends who went the surgery route. I have less friends that were cured, but those that were, had little to no side effects with RP. It seems like it really boils down to being the right candidate for any of these treatments.
With your cribriform, PNI and possible ECE (you didn't explain how the pathologists at JH diagnosed that), I can understand why you might be considered an unfavorable risk patient, necessitating at least some hormone therapy.
IDK if 1 year of apalutamide is necessary, why does Kishan believe that anything beyond 4-6 months of Lupron is necessary? A year of apalutamide carries almost certainty of gynecomastia.
The risk of a second cancer from the radiation is minuscule, and is a red herring (i was treated at 57).
I think it's not 100% clear if I would do 6 months or a year of Apalutamide. Kishan's worried about under treating in my situation. However, he said that BEFORE my PET scan results which appear to show no ECE. Of course, PET scans can miss cells.
As far as how JHs diagnosed the ECE - I don't know. Their comment was just "ECE identified". Dr. Lau at COH thought it was "mislabeled" (his word) and Dr. Reiter at UCLA didn't think much of it either.
I've got a follow-up scheduled with Kishan to discuss the finer details, which is why I wanted to get some responses here before I sign up. It does seem to be the best option for me so far, although I'm not excited about 1 year of Apalutamide.
Glad to hear your thoughts that the risk of secondary cancer is minimal.
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UCLA/UCSF Doctors for initial treatment – SBRT or Surgery
Newly diagnosed - Gleason 4+3
My treatment decisions
Decision Time
Treatment: Unfavorable Intermediate Risk PCA
