Hello all, I'm wondering what my next steps should be as I don't trust the standard of care treatment in Canada. I had nerve sparing (one side only) RARP in April/19. Pathology showed G9, stage3b, sv invasion, no lymph nodes involvement. The surgeon offered no followup treatment and I didn't know enough about this process to ask. 3 months post op psa undetectable, 6 Months was .02 and 9 months psa .17. The last visit was Feb 2020 and the uro has referred me to a RO and I'm waiting for the date in the mail. The uro was not overly concerned saying the numbers are still very low but,... I am concerned. I asked him for a Avodart prescription for the next 3 months as I saw a clinical trial that delayed psa doubling times for many years in some patients. Now I'm wondering if I should be on ADT immediately while waiting for radiation as I think it's the only way to stop the pc spreading right now. Or is it better to wait for 2 consecutive blood tests above .2 to confirm BCR before getting radiation? If Avodart works for me that won't happen anyway (hopefully). Recently I see evidence that high testosterone treatments are being suggested but this is completely opposite to conventional treatment, should I dismiss this immediately?
So I don't really know what to do but I know there must be some good advice here as it seems there are some very knowledgeable people who post here.
Thanks and regards Brian
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Afterglow
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I understand your concern & desire for immediate further treatment, but you have plenty of time to sit down & become familiar with the options.
You mention "high testosterone" [T]. This has been discussed in the context of BAT (Bipolar Androgen Therapy). BAT is ADT with a periodic T reset. The main reason for BAT IMO, is that it might delay ADT resistance, perhaps for a considerable amount of time. ADT is palliative. It is not a cure & resistance almost always occurs. That's not to say that it has no role as an add-on to radiation. But in my view, many men have rushed into ADT & 'used it up' too early.
Dr. Sam Denmeade has another angle on BAT. He claims that supraphysiological T (2,000 ng/dL - twice the normal high) might induce double-strand breaks in PCa cells (but not normal cells), & this might result in cell death.
Incidentally, do you know your T level? (& estradiol [E2] too?)
If you might want to consider someone with a "Thinking OUTSIDE the Box" approach you could view the first 10 minutes of this video. In 2015 myself being a 65yo but only 5+5 at the time, began with castration instead of ADT and accepted the offer to be AN EXPERIMENT with my 3 drug combo immunotherapy injection following cryo BUT that now includes TRT biweekly injections of Cypionate that has me living a Unique Eunuch Life permitting 125 mile+/day bicycle rides easily accomplished like this past Saturday. (not too bad for being 70 in July)
MODS -- if against the rules or inappropriate please remove
Very close to your case: RP May 2019, GS 4+5=9, pT3b N0 R0.
I had a nasty surprise at the usual 3 months post RP PSA = 0.11-0.13 (2 labs same blood draw).
Since then, my monthly PSA has been 0.02. I monitor PSA by monthly tests interleaving two labs for higher confidence regarding precision and erroneous measurement exclusion.
As a prophylaxis measure I take a long list of supplements plus avodart.
My best advice to you has to do with a stringent PSA confirmation before proceeding to any further treatments.
Yes we are very similar, we can keep an eye on each others progress and treatment. I think I will get another blood test through my GP at the 45 day mark to my next appointment with my URO which is at the end of May. I'm wondering if you had some benign prostate tissue remaining that gave you a false psa number?
My main supplements are French grape extract, curcumin, boswellia serrata, neem leaf extract, vitamin d and c, zinc, magnesium, melatonin, and baby aspirin.
My supplement decision came from watching many cancer videos on Dr Michael gregor's website Nutritionfacts.org. All of them are believed to fight cancer in some way.
Are you taking anything different and if you have time Why?
No, it was not a carry over from pre RP as my first PSA at 5 weeks post RP was also 0.02. I am also taking statins for I have familial hypercholisterine, no curcumin for I have gal bladder stones. Berberine with my 2 daily meals, European milk thistle, cayenne, MCP, DIM, HCA, ALA, nattokinase, quercetin with bromelain, CoQ10 and serraptase. Melatonine and vitamin D and K, like you, no aspirin as not compatible with one of the above. No vitamin C as I am border-high with iron and vit C helps absorbing it. Food wise, per day, an avocado with my green salad, two Brazilian nuts for their selenium content, half a glass of pomegranate juice and everything cooked here is with virgin olive oil. Hope this will be of help to you.
On a different note one of the surgeons I consulted before deciding with whom to proceed, told me that there was a chance of one nerve sparing. At surgery both were resected. I had the frozen section or quick biopsy intraoperationaly but this can not identify SVI. Was the surgeon's experience or did he play safe for resecting both of them, I can not tell. Anyway, now I am happy he did. I am 10 years older than you and ED doesn't mean anything to me.
Oh so you've had RT already, I didn't realize that, your a step or two ahead of me. I've looked at incorporating all of your supplements at one time or another but it's just prohibitive to try and take them all, and if you do, who knows what side effects or potential harm you might do to your body? I've been meaning to add some selenium and modified citrus pectin but that mcp is expensive from what I've seen. Do you have one that doesn't break the bank? I was worried about the sugar content of pomegranate and stopped eating and drinking them. I'm big on cayenne when cooking and avocados are always on the go in our kitchen. I juice alot of cruciferous veggies and try to eat as much garlic, onions, and mushrooms as possible.
My future plan is after my PSA breaches the 0.1 mark, I will first take a PSMA test before going for the RT. As for ADT, certainly not the heavy stuff. Perhaps Casodex monotherapy for 6 months.
(*) Sorry my mistake. Typo error RT instead of RP. Apologies.
Keep this in mind when you start thinking about scans, my Toronto surgeon informed me their new PET unit capable of PSMA is not as good as they hoped. I wanted a scan once I break through the .2 level but he said there's no point because they've only had success down to about .7 and by then you've kind of missed the radiation train.
It is the largest cohort study today. They give the statistical weights (coefficients) of affecting parameters for predicting detection success rates.
I have compiled an Excel spreadsheet and can calculate probabilities.
For your case, if the PSA rise from 0.02 to 0.17 within 3 months is correct, you will be around the 60% ballpark, probably more than less. For my case, I estimate it to be around 50%, which is good enough for me. Irradiating the place blindly has less than that for success rate.
The medics have also a second line of defence when one questions them on this subject like:
-What have I to loose for taking the CT test and knowing what is really happening even with a 50%, 40% or even 30% success rate?
-You will get the radiation, they will respond pompusly.
I have calculated the hazard of radiation recieved in accordance with the official Canadian guidelines, and it came equivalent to:
5 years of normal living without much air travel, or,
1 year working as a radiologist technician, or,
3 months working in a nuclear dump.
I am an engineer by profession and believe more in (any) truth coming from numbers than to the opinion of any occasional medic, especially specialists.
For sure, I'm trying to get in to see a RO asap as I'm favoring immediate ADT while waiting for SRT. Thanks for your reply I'm trying to gather as many helpful suggestions as possible.
At your PSA, you do not need any kind of hormone therapy - just salvage radiation to your prostate bed and pelvic lymph nodes. The cut-off for adjuvant ADT is about 0.5, although some ROs do go lower.
Avodart has not been shown to delay progression in recurrent men. BAT is for men with metastases- not for you.
Hi T, I started Avodart last week after reading this article, the way I understand it is that it might help people like me in my circumstances. Sometimes I don't process things correctly, maybe have a look and see what you think?
It was a small uncontrolled retrospective study in Malaysia, but if you feel better taking Avodart, and considering its side effects are mild, why not? But it would be a big mistake to replace real therapy with it, imho.
Thanks for having a look. If you were faced with my circumstances, what do you feel would be the maximum time frame and/or psa number before having the SRT done. My feeling is as soon as I can get scheduled, or am I hitting the panic button?
A recent trial proved that treatment when the PSA≤0.1 or 3 consecutive rises gives the same outcome as immediate treatment. After that point, risk increases.
Three consecutive rise's can be 3 consecutive months right?
My appointments are 3 months apart so that's probably a better indicator.
The problem is now I'm getting into a more critical timeframe where you really want to stay on top of things so, I've taken the initiative today to get another blood test on Wednesday to see what's happened in the last 30 days. It may or may not help discern what's going on but its better than waiting 3 months for the "big news".
a) The 0.02 -> 0.17 rise in 3 months was, unfortunately, valid.
One month later, at the same rate and accounting for rounding and timing errors, 0.31 - 0.39.
b) The 0.17 count comes as a result from some human error.
Assuming a typical doubling time of 18 months for our risk class and ignoring the 0.17, (3+1) months later from 0.02, somewhere lower to 0.06.
c) The 0.17 count was real and originating from a temporal PSA flare that ceased firing afterwards.
The PSA half life (decay) is 3 days +/- half a day. So, after 2 weeks it must have washed out (below 0.02) bringing you back to the functional precision of the PSA test, i.e. 0.02 +/- 20%.
I am an optimist by nature, so I stand by the last option for you.
Hi T, is there an advantage of some sort, or a reason to do SRT without starting hormone therapy?
The only thing I can think of is that you know sooner when your cancer re -occurs after radiation treatments stop.
The idea is to slow psa doubling time and prolong chemo or equivalent treatments going forward.
Others have suggested a real urgency to start ADT asap. Why might I be getting these contradictory recommendations?
You said most doctors recommend ADT starting at .5 and as of March 6th I am at .2 but that is up from .02 in Oct/19. That is a super fast doubling time slope.
Won't ADT weaken the cancer cells and help radiation kill them off, especially the cells that are off to the side of the target areas?
The reason to avoid adjuvant ADT is to avoid the side effects associated with it. Why put yourself through that if there is no benefit?
"The idea is to slow psa doubling time and prolong chemo or equivalent treatments going forward." No. The idea is to give you a potentially curative salvage therapy.
"Others have suggested a real urgency to start ADT asap. Why might I be getting these contradictory recommendations?" For a couple of reasons: (1) the responder did not really understand your situation, possibly because you are posting on a site for advanced prostate cancer and you do not, as far as you know, have advanced prostate cancer, or (2) they are misinformed about current best practices. I don't read replies from others because I don't have the time to go through and explain every misunderstanding. My concern is you. I am only relating to you what the best practice is based on medical evidence. You may want to read Dan Spratt's analysis:
"That is a super fast doubling time slope." PSADT is not defined for PSA values below 0.1, and there must be 3 readings above 0.1.
"Won't ADT weaken the cancer cells and help radiation kill them off, especially the cells that are off to the side of the target areas?" Clinical trials have proven that there is no advantage to adjuvant ADT at your PSA. But, you seem to be panicked, and if it lowers your anxiety to do 6 months of adjuvant ADT and you are willing to put up with the side effects, then why not?
Thanks for attaching that article. Yes it does seem based on evidence that ADT doesn't seem to help patients with my parameters.
There was one little paragraph at the bottom of a chart that stated
"For patients with minimal comorbidities, ≥12-year life-expectancy, and multiple high-risk features (eg, pT3b/4 and Grade group 4-5), a discussion of the harms and potential benefits of hormone therapy is warranted. "
So I will definitely talk to the RT about what he thinks and recommends.
I'm not anxious or panicking about my predicament, but I'm looking at it as a second chance to cure the cancer and a one time best shot opportunity so if adding a drug to the radiation can possibly help I will do it.
I had been on Zoladex for 6 Months leading up to my RP and it wasn't really bad but bad enough to want to get off it.
Guess I won't decide until the last minute at my appointment.
Hello, I am another one new to recurance after RP. RARP done five years ago. PSA was 20 with a few positive cores from last biopsy. Post op clinical, no extracapsular extentions, no perinural invasin, no lymph node involvment. Removed most nerve bundles, seminal vesicles and nearby lymph nodes. Had follow up PSA testing for two years, always .0. Now at 66 years old went in for routine wellness check and saw PSA was at .47, retested again at .44. So under the recommendation of my RP sugeon he wants me to start with a six month shot of Luepron followed by 40 sessions of radiation. Just did a Axumin PETCT scan and nothing scarry showed up. (I know at lower psa levels they are not 100%) But my original urologist didn't seem as excited about starting anything yet and could possible live an average of 13 years. I am scared of the probable side effects of either SRT or ADT and prefer good QOL vs a 50/50% chance of getting rid of the cancer and risking permanent damage from radiation and that ADT is by some considered palletive, it is not a cure and resistance amost always occurs. An extra opinion from others in this field would be greatly appreciated.
Well that's just the issue isn't it, what now? what to do?
We're in the same boat and there are no easy answers.
Don't be afraid of ADT for a period of 6-12 months. So many people here are on it, dealing with it for much longer time frames and apparently living fairly normal lives. It doesn't bother me one bit to deal with the side effects temporarily to try to get things in check.
There's no magic bullet, we have to accept our fate, cope the best we can, and try to live life to the fullest while we can. I wish I could provide guidance but I can't, that's why I'm here asking questions.
With radiation you do have a chance of permanent remission. Secondly, don't fear ADT. I have received many years of quality life with the drugs available now.
Since I am based on Canada (Vancouver), I was surprised to see you say that you don't trust PCa care up here. Admittedly it is uneven across the country, but certainly good in Toronto and Vancouver. Where are you based?
Also, since you in Canada, if you end up going on ADT, check out the free education resource at LIFEonADT.com and the link posted there to the article showing the efficiency of that resource.
I'm in Winnipeg but went to Toronto for RaRP because they don't have robotic equipment here.
I initially wanted RT and had a meeting with our cancer clinic counselor who is a doctor and she told me at my age (58 at the time) they don't do radiation except for rare circumstances, and that I was too young for that treatment plan. She made radiation sound like it was the worst way to go, and that RP was the gold standard and really the best way for a long term cancer free outcome. At that time I was still in a bit of shock with my diagnosis, knew almost nothing about what I was up against, and basically followed her advice. She was the main person at the clinic to counsel patients in distress,and in retrospect was useless to me in ever following an unbiased best treatment path.
Now, I'm not saying the radiation triple play would have been better for me and may of had a superior outcome, but in my naivete I wasn't getting the proper guidance in selecting a treatment plan. At that point it was all about surgery.
A friend of mine told me about his brother in law who had Davinci robotic done by the"top" surgeon at Princess Margaret hospital in Toronto and was cured, and his continence and sexlife were normal and to get Dr "F" to do it. I thought why not, told my Winnipeg urologist/surgeon my intention and he fully endorsed it setting up an appointment that was a 4 month wait. 3 months and 3 weeks pass by and I get a call from Dr "F's" administration team saying he's too busy and can't do your operation unless you wait another 6 Months. Well can you believe that? They waited 1 week before I was ready to go to Toronto, had all my travel plans in place, and then pull that? I was pissed.
So they tell me they can pass me over to another doctor and I really had no choice but to accept whoever had an open schedule, so I kind of got the "junior man". Anyways he was a nice guy and made me feel good about what was happening and here I am. Told me to call him anytime for anything, but he never answers my calls and you can't get past his secretary so it's a vain pursuit.
This website and forum is proving far more valuable than anybody I've talked to yet so I'm okay with that. I wish I knew about it before I started my cancer journey.
As far as standard of care in Canada, my bias is not even to do with my cancer journey, it's the multitude of experiences over my lifetime I have had as well as everyone in my family who have all had terrible experiences over the years and I could write 10 pages of errors, mishandlings, wrong diagnoses, poor treatments, long waiting times, no followup care and the list goes on. You get what you pay for and in Canada it ain't great but it's better than nothing.
As a prostate cancer patient and a psychosocial research, who publishes in the medical literature on quality of life issues for PCa patients, I think I can help you get better medical care within Canada. As such I invite you to confer with me directly and outside the discussion group. You can reach me via my regular email address which is my first and last names separated by a period, then the "at" sign followed by "ubc.ca". OK?
I do agree that the cost of treatment for prostate cancer is a MAJOR concern. In fact the latest issue of the magazine American Scientist has an essay a medical student and I just published titled, "Cancer Care is Getting Better, But Also More Expensive." I note though that this is a global problem and not just one for countries with so called universal healthcare systems (which we actually don't have in Canada).
On an unrelated topic, for all the non-Canadians reading this thread, I want to point out that not all Canadians have abandoned the of use of paragraphs.
Some of us aren't well versed in using newer technologies like phones and tablets so writing digitally can sometimes be challenging and laborious.
I find apologising for Yamobedeh and myself to the people reading this forum for our poor writing or phrasing skills a bit offensive and probably unnecessary. You don't know our primary language, culture, or our level of education so why the back handed criticism? What's next, grammar and spelling corrections?
Thanks for your offer but I'd rather fight my cancer my way than deal with someone that is so easily intolerant of someone's posting format.
My comment on paragraphing would never had been made. if I saw evidence of "poor writing or phrasing skills." That would just be critical and offensive, and for no one's benefit. The authors of the two postings that I commented on in fact showed only good writing and good phrasing skills. So that was not criticized in anyway.
But, since we are off topic now, I will say something in defence of paragraphs. I have checked will colleagues, who have both German and Spanish as first languages, so I know the following is true of English plus those two language.
And here goes...
A paragraph (I was taught) is a collection of related sentences that can then be more or less summarized in a single sentence. If a summary sentence can't be easily composed, the collection of sentences probably don't form a single paragraph. Editing is then warranted.
Very long paragraphs imply that the key idea is turgid and dense; as such long paragraphs tend to scare away readers. Sadly in the age of twitter we are seeing, the demise of the paragraph.
I encourage those, who post single long blocks of texts on message boards and in chat groups, to consider using paragraphs, if they haven't been doing that before. With shorter paragraphs they are likely to get more readers and thus get helpful input from this readers in return.
In sum, this is not at all about intolerant of anyone's posting. Instead it is all about how to get the most attentive readership for whatever one posts.
In a somewhat related fashion, there are ways to write emails to MDs that can maximize the likelihood of getting a reply. If folks want my thoughts on that, they can email me directly at my email address posted earlier in this thread.
I also was diagnosed in Toronto at an esteemed cancer hospital, but not before I paid for my own MRI in Buffalo (which confirmed a large prostate tumour) which was subsequently repeated in Toronto, that my concerns were taken seriously. I was then fairly quickly booked for bone, CT and MRI scans, followed by a TRUS biopsy, which I insisted be guided by the MRI data. Initial Dx was G8 (4+4) and T2, but after the initial bone scan indicated an area on a femur head suspicious for met, Dx was restated as stage 4. I was started on Casodex for about a month, then 3-month Lupron shots. At my clinic meeting with the RO for sharing the diagnosis info etc, he quoted stats for 5 year survival with a long face and suggested 37 RT treatments and possibly intermittent ADT with Lupron only. The tone for my outlook was pessimistic, and I remember the term "palliative treatment" as the most I could expect. There was absolutely no indication that I would be offered, or could expect treatment with curative intent. During the months of delay over this period, I was very lucky to have contact with a man who was treated in the US. He and several others treated there with prognoses similar to mine have been cancer-free for 10 to 15 years. I was aware of the general findings of the STAMPEDE and similar trials, supporting early aggressive treatments, and when a prominent RO from a nearby hospital treating PCa gave a talk laying out these findings, and supporting them, I wangled a meeting with him. There I was told I was not a candidate for this type of treatment, with no explanation......from which I had to infer that patients with stage 4 PCa can expect only palliative care in Ontario, Canada. Apparently, most of the the typical diagnostics and treatments for PCa in Ontario have changed little in 30 years. Hospitals pride themselves on doing ongoing research, but 1. much of it seems redundant, and 2. It is often years or decades before findings are actually implemented for patients. MRI and more advanced scans are difficult to obtain under our "Universal" free health care system. PET scans are virtually impossible to obtain for PCa and breast cancer, outside of rare clinical trials. Patients must go before a tribunal which assesses the need on a case by case basis, usually referring patients back to CT scan options, which seems to be a lucrative profit centre for some radiologists. Ontario has the least access to PET scans in the developed world. Always having a plan B, I had made use of the US clinic's free phone consultation, and booked an appointment to start treatment several months after the aforementioned RO consults. In the US, I was put on a "Triple Blockade" ADT for 18 months: Casodex, Lupron and Avodart, along with several other meds to protect non targeted pelvic tissue. One of their diagnostic tools is colour doppler ultrasound of the prostate, to evaluate the presence of any vascularization , suggesting tumour growth. I was immediately started on a 37 session RT program, followed several weeks later by low dose brachytherapy, and several months later, a followup RT program focussed on pelvic lymph nodes. At my 6 month followup in July 2018, my PSA and T were continuing to fall, and I was taken off Casodex and Lupron, but recommended that I remain on Avodart. Currently, my PSA has just nudged into the limit of "detectable" and T is at low normal, where it was years ago. Costs as a self pay Canadian patient were significantly discounted, although it was in the upper 5 figures, all in. This clinic specializes in PCa, and has treated more than 10,000 men.
In contrast, a long time buddy, in July of last year, with PSA 40, was pressured into RP surgery by his local urologist. About 2 months post op, his PSA was back to 40. His "team" has never ordered more precise scans, nor have they prescribed Casodex, or Lupron, or scheduled RT. By now, his PSA is at 400, and his "team is still scheduling consultations, but no further treatment yet. I've suggested he seek second opinions, and even to look into malpractice legal action, since he lacks financial means to even meet his basic needs. I was fortunate to be able to obtain a loan from my parents to seek treatment in the US. The "standard of care" so often touted by doctors and health admin bureaucrats is the bare minimum for too many diseases, and pathetically, it is used to cover asses.
There are many PCa patients in Canada at stage 2 and 3 who have undergone RP, RT or less invasive procedures, and who have lived long and disease free lives. It is those cases which have progressed to stage 4, with high risk disease which are not well served. I can't emphasize enough, the importance of doing your research on the types and locations of promising treatments, contact info for the highest rated PCa treatment professionals, links to studies and to clinical trials, within and outside of Canada which may offer new diagnostics and treatments at little or no cost.
This site has many members who consistently offer excellent advice, based on their own experience as patients, and as practitioners and researchers in fields relating to PCa.
Afterglow, regarding ADT along with salvage radiation treatment (SRT), have you considered genomic testing to help judge the probability that, for the type of prostate cancer you have, there would be any benefit from ADT along with SRT?
I'm in a similar position of sweating out the quarterly PSA test results. The plan that I am following includes, upon post-RP increase above the limit of detection, sending a tumor pathology sample for genomic testing . Thankfully, so far (13.5 months post-RP), I have not faced that decision. The urologist who performed the RARP recommended not performing genomic testing until the results could affect decisions regarding treatment, in order to potentially benefit from increases in knowledge from additional data and analysis of outcomes vs. traits in the genomic databases. (He favors early SRT, certainly by PSA of 0.2 but trending toward earlier.)
Also, I just recently became aware of treatment with Dutasteride as a potential way to delay or avoid radiation treatment upon post-RP increase in PSA, so I plan to also discuss that during my next interaction with the urologist; ref:
In response to a reply similar to this, another member indicated that the doctor he was apparently relying on for this type of decision does not have much faith in genomic testing for the ADT decision, however, in that case the member indicated that in his genomic testing results "My ADT Response was graded as Average, but my RT Response was graded as Low", and that he intended to include ADT along with SRT. I believe that with those results, I would probably make that same decision. (healthunlocked.com/prostate...
I believe the test results for the above were from color.com. However I understand that the Color Genome Dx is a "germline" test for heritable genetic mutations; that it does not test for the "somatic mutations" which occur as cancer progresses (Ref. Tall_Allen reply in healthunlocked.com/advanced....
Thus, I've been on the lookout for information regarding whether genomic test results for somatic mutations is being used to judge the potential benefit of ADT in conjunction with SRT.
I hope this information will be useful to you. I'm sure that any further information along these lines will be useful to me and possibly others as well.
I've heard of Genomic testing but have not pursued it. This is something that may not be available to me in Canada or through my health insurance so I will discuss it next meeting with my URO.
I am on Dutasteride. I saw that same clinical trial and asked my URO right away for a prescription. We'll see if it does anything at all when I get my April bloodtest. I have a bloodtest tomorrow but not expecting any Avodart effect because I've only been on it 9 days.
Just go get the shot of lupron and you are covered for 3 months. Give you time to ask more questions. You would probably be on full adt including Zytiga here during the radiation that’s coming your way. We all get it. No reason to leave you out.
I intend to get ADT but here in Canada you can't make things happen immediately. An appointment with my URO takes over a month to get. I have an appointment with a RO that they tell me has been mailed so that will happen first and I can talk to them about getting the injection at that time... hopefully.
In Manitoba we can't get our bloodtest results on average for about 5 business days. We either have to phone our clinic or doctors office or make an appointment with them. Brutal services in 2020, we are like a decade behind.
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Cyberknife is in my future
Unsuccessful RP 2020. PSA rising & radiation (Radical trial) about to begin. ☘️
JorgeW - Prostate Cancer
Seeking Post-RP Advice for Very High Risk, G9, Low PSA
Learning about salvage therapies
