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You may have missed Brian's update, so I am putting a copy here. The earlier discussion is linked lower down in this post. Jim Hi folks, Finally got my pet scan results, all opinions trying to help me understand it all are welcomed. Cheers Brian Moody Original story:

Brian - I came across something else today on anti-androgens: If PSA persists after an RP, then 150 mg (cf. the usual 50 mg) of Cosudex (which is not sequentially limited by the enzalutamide PBS rules) might be worth a discussion with the medical oncologist. The study I read about found a PSA response for PSA > 0.6, and particularly PSA > 1.6. There was some good trial work done 10+ years ago with the 150 mg dose. Note that the intent with this is not simply to avoid bone tumour flare before ADT (e.g. Lucrin or Zoladex), but to gain some actual remission. Alan

Surgical castration will certainly eliminate all your testicular testosterone (T), but the adrenals also produce something like 10% of your T (and metastatic cancer cells can even make their own - or can increase the expression of androgen receptor). ADT (Lucrin) also shuts down testicular T only, so surgical castration could well be on your agenda when discussing options and comparative side effects with your medical team. Note for the future that one of the newer hormonal drugs - abiraterone (Zytiga) - which is used in conjunction with conventional ADT, also inhibits adrenal T, as well as testicular T - but the same PBS rules apply to that one as to enzalutamide. Alan

Brian - I would think that changing the anti-androgen for a 2-week anti-ADT-flare period would not achieve anything useful (remembering again that I'm not a doctor). By all means explore its possible use down the track, however. Keep in mind that some men find have problems with fatigue with Enza, and a very small number have seizures. Note also that the PBS rules at this point in time only allow enzalutamide to be ordered after unsuccessful or untolerated chemotherapy. Otherwise you're looking at around $3600 per month. Cheers, Alan

Brian - Cosudex (bicalutamide) is an 'anti-androgen', which works by blocking the androgen receptor on prostate cancer cells from taking up circulating testosterone (T) and dihydrogen testosterone (DHT), which they need for fuelling their growth. (There are now newer products that do the same job several times more effectively, e.g. enzalutamide). Using this class of drug prior to starting ADT (e.g. Lucrin, which inhibits testicular synthesis of testosterone), is often used in the context of bone mets to avoid a short term flare in tumour growth that may cause pain. Most people (including myself) don't have too much trouble with anti-androgens, even with extended use. Cosudex can cause breast enlargement and other side effects in some men, but I wouldn't expect that a couple of weeks use would bring you into that territory. Hang in there! Alan

So you're underway, Brian - that's good. If you want to have less exposure to the clinical environment in our COVID-19 world, your oncologist could graduate you to a 3-monthly version of ADT, but he will want to monitor your PSA response, ideally monthly at the beginning (which he could do via Tele-health or phone). Keep regular PSA testing going - and maintain daily home and outdoor exercise, with emphasis on weight / resistance routines. This will greatly help to combat muscle loss, bone density loss, hot flushes, your psychological health and other side effects of ADT, while also helping your your immune system to combat the prostate cancer itself. Best wishes, Alan

Hi Brian, A biopsy microscopic report of Gleason 8 / glomeruloid morphology back in 2012 with an elevated PSA means you had then and still have high risk prostate cancer. The latest PSADT doubling time of around 5 months, coupled with the positive (or at least the 'suspicious') February 2020 PSMA/PET scan says to me (an informed patient but not a doctor) that you have metastatic disease in bone and lymph nodes that has just begun to take off and which would usually require active primary treatment in the short term. Your radio-oncologist gave you sound advice back in 2012, and I would judge that he is giving you good advice now. The early Cosudex is to minimise any tumour flare and possible bone pain that might otherwise occur at the start of your ADT (Lucrin). You might ask him to elaborate on the radiotherapy (RT) that he would follow up with - conventional external beam, IMRT or stereotactic - and to outline the pros and cons. I would think that your PSA profile during the course of your treatment would dictate the timing of a follow-up PSMA/PET scan. With ADT (plus or minus RT) you would hopefully see a reduction of PSA to a very low level - but given your risk status you may eventually experience a subsequent rise. A PSA of 0.2-0.5 would give you only a 65% chance of picking up any recurring or new mets: this increases to 85% or better with a PSA of 0.5-2.0. However, not all tumours are PSMA avid, so your doctor may also order an FDG PET/CT scan if the post-treatment PSA is rising in the context of a clean PSMA scan at the original tumour sites. Since you apparently have a referral to a medical oncologist, you might want to review with him the medical alternatives to radiotherapy as you begin the ADT. Given your high risk but apparently low tumour burden - and the limitations related to the pandemic - he might discuss adding abiraterone (or one of the other newer hormonal drugs) to your ADT, or possibly graduating to one of these drugs, (and / or to chemotherapy) at a later date if your PSA and scans should move in the wrong direction. The point of these comments is that there are a number of options that may want to explore with your medical team - but you should get on with doing so. I hope this helps to resolve some of your uncertainties. Keep in touch - and best wishes, Alan

In short Bad news is that the PCRI March update is cancelled. Good news is that the experts will be live streamed for free. More detail The Prostate Cancer Research Institute (PCRI) holds two conferences a year for prostate cancer patients and those who care about them. There is a one day conference in March, and a few-day conference in September each year. The conferences are held in Los Angeles, USA. A number of our members have gone to these conferences, and found them very helpful. Because of corona virus concerns, the March conference is cancelled. The experts who were to speak to a live audience will instead be live streamed, world wide, for free. (Live streaming is a bit like YouTube - you can watch on phone, tablet or computer. You can submit questions in advance.) You can RSVP here: https://mailchi.mp/pcri/we-are-live-streaming-the-mid-year-update-online-for-free?e=7dc01adb3e

Hi again Brian, Your radonc appointment will no doubt focus on the PSMA-PET scan results (and your Gleason grade). If you have recurrence in the prostate / pelvic area only , then salvage radiation (IMRT= intensity modulated radiotherapy, or EBRT = external beam RT) might be considered. If you have 5 or less metastases to lymph nodes and/or bones, and if they are not too big, then a few courses of stereotactic RT could be discussed. (This is highly focused high energy radiation: let's call it spot-welding). Thirdly on the radiation front - and after an additional 'FDG'- PET/CT scan to check for any tumours that are not responsive to the PSMA-PET/CT scan - you and your radonc might look into a possible clinical trial with 177-Lutetium-PSMA-617. I mentioned before the advisability of getting a second opinion from a medical oncologist. Depending on the results, and with your Gleason grade (which potentially is high risk), you may quite possibly be recommended a treatment regime with one or a combination of systemic drugs - and there are a number of candidates that hit different tumour growth pathways which your medonc would likely discuss with you. We would be getting ahead of ourselves in exploring these options any further at this point. The next steps are your scan results and your oncologist(s) appointments. Best wishes, Alan

Jim Marshall (not a doctor) said ... Eight years ago you had a small, aggressive prostate cancer. Aggressive means: more likely to spread to other parts of your body; and more likely to eventually kill you. The PET scan will be to see if it has spread. Whether it has spread or not, your doctors will come up with a treatment plan so that the cancer does not get its own way. ... end Jim

I can see why Brian Moody can't understand a single word in the medical report about his Pca. What Brian needs to know is what his cancer status is in simple terms for his PG, and where any spread has occurred if any. In 2009 I was told "Gleason 9, 9 positive biopsy samples from PG, aggressive cells, young mans type of cancer." CT scans later could not find any spread. First spread spots were found in 2016 with PsMa Ga68 PET/CT scans that can see more than CT scans. My PG had so much Pca around it the urologist could not remove it, but he never said that was reason, cos' he is a bit useless giving any patient bad news. So I suspected I had a bad case, and I was in "1%" group of men who could not have RP. But I had ADT and EBRT and treatment continues, but I am alive, and doing OK at 72 now. So Brian needs someone to de-cypher the medico talk. I cannot. Patrick Turner.

G'day Brian, Your status seems to be that you have a slowly rising PSA, 15% involvement (based on only 8 biopsy cores 8 years ago), with hopefully negative margins, and a Gleason grade of more than 5-10% of Grade 4. The '4+4' score in your case indicates that the relatively aggressive Grade 4 is dominant - at least 50% in Core B. The reference to 'glomeruloid morphology' is describing one of the aggressive sub-sets of Grade 4 disease. Ongoing and regular PSA monitoring following an adverse biopsy - especially a result 6-12 months prior to your last one - would have been informative. You haven't indicated in this post what (if any) primary treatment you had following the adverse biopsy, but the reference to an upcoming visit to your radiation oncologist suggests that you may have had a form of radiation therapy back then. The missing link in your information is imaging (anything from the past?), but the picture will be filled out by your upcoming PET imaging - hopefully the highly sensitive 68-gallium-PSMA-11 PET/CT scan. Based on your recent PSA of 4, this scan should detect any significant residual cancer in the prostate bed, as well as possible metastases to bone, lymph nodes or organs like the liver and lungs. Something -either localised or metastatic prostate cancer cells - are slowly edging your PSA upward, and it's important to find out where these tumours are and how limited or otherwise in extent they may be. The result will then indicate how aggressive your treatment may need to be. When you have the report, you might want to consult a medical oncologist who has a particular interest in prostate cancer, since there are a number of newer treatment options that will need to be discussed with you. Keep us in the loop - and good luck! Alan

Brian, welcome to our Support Group. I was diagnosed in 2009 with a Gleason Score of 4+4 and a PSA of 5.8 My urologist told me I didn't have to make a decision the day I was diagnosed. From my personal, non medical position, you have a bit of time to talk to other medical professionals before you decide on which treatment you prefer. That is not permission to do nothing. My cancer returned a couple of months after my prostate was removed. 10 years after diagnosis and with ADT my PSA is still undetectable.

G'day Zac, Things have certainly moved along since 2012. Let's try to summarise. An important treatment criterion is whether PSA is recurring after primary treatment, i.e. surgery (RP) or radiation (RT). Another is whether recurrent PSA is increasing in the context of low testosterone induced by primary androgen deprivation or ADT medications (i.e. castrate resistant). A third is whether there is positive evidence of metastasis (e.g. from a CT scan, a bone scan, an MRI scan or a PET/CT scan - including the new one based on 68-gallium). These three progressively higher risk criteria confirm unsuccessful primary treatment, i.e. locally recurring disease or distant metastasis (to bone, lymph nodes or organs) , although only the last of these strictly defines 'Stage 4' disease. A number of clinical trials are leading to chemotherapy (docetaxel/Taxotere) accompanying initial ADT when primary treatment is unsuccessful, i.e. when PSA rises rapidly after treatment or when a patient initially presents with metastatic disease. This treatment is usually well tolerated, and often leads to long periods of PSA-indicated cancer control. This adds to the case for combination therapies rather than strictly sequential treatments. which seems to be strengthening with newer treatments of more aggressive disease. Second generation ADT drugs (as distinct from the 'secondary ADT' options that Jim mentioned) are important breakthroughs since 2012. These are abiraterone (Zytiga), which has effectively replaced ketoconizole, and enzalutamide (Zytiga), a potent anti-androgen: either (but not both) of these are available on the PBS after unsuccessful chemotherapy, or when docetaxel therapy cannot be tolerated: both give extended control of metastatic PCa. An upcoming possibility in this category is apalutamide (Erleada) for earlier use, but this has not yet received a PBS listing. Cabazitaxel (Jevtana) is a newer chemotherapy treatment available on the PBS when docetaxel fails. It has a different side effect profile to docetaxel, and is often well tolerated. In a different category is 223-radium (Xofigo), a radiopharmaceutical that effectively targets bone-only metastases. This drug is finally in the process of being made available under Medicare. To protect bone strength (sometimes declining bone density is a problem side effect with ADT), we now have denosumab sitting alongside Zometa. Trials with 177-lutetium-PSMA are progressing here and overseas, and are showing considerable promise. There are indications that immunotherapy may eventually be useful for prostate cancer, with trials with pembrolizumab (Keytruda) helping in 10-15% of cases. This is a 'watch this space' treatment. Finally, there is exciting progress being made in the area of genomics, with particular genes (e.g. BRCA2) being linked to aggressive disease that so-called PARP inhibitors like olaparib can be used to target. We are fortunate that the explosion of new and emerging treatments during this decade is offering new hope to so many men with advanced prostate cancer. May it continue! Cheers, Alan

Given the current situation regarding COVID-19 (coronavirus disease), I have discussed our meeting with a couple of regulars and regrettably we have decided that it would be prudent to postpone our meeting scheduled for 21 March. This takes into account general advice about social distancing and in particular the health status of our members. We will reschedule at a future date when the risk of COVID-19 has subsided significantly. I am disappointed but I think it's the right decision in the circumstances. Steve