Well after heaps of research and asking questions and discussing everything with my RO and Urologist about treatment for my 4+4 PSA 8 PCa, I have decided to go the path of EBRT and HT. Starts as soon as I get back from my trip to the USA in late November with the insertion of the barrier gel, the 3 month dose of HT (RO suggesting 2 lots at 3-month intervals at this stage) and the 4 weeks (5 days a week) of radiation. Radiation should be finished by the first week of January.
So can anyone out there who has gone down this path, who like me was medically fine (I'm 65yo) no health issues - can give me a summary of what I can expect and how maybe I can reduce any side effects? The RO said that the HT effects can take up to 12 months from the last dose to disappear out of the system. Does this sound right?
I'm hoping I have made the right decision but it is nice to just get some reassurance from others who have been there, and done that.
I'm sorry if I can't reply to some of the received answers (I'll do my best) but I may well be on my trip via the UK to the USA with limited time.
The best to you all.
Mike
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Mike58
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Hi Mike. I was 4+3 with PSA of 12.5 and containment. I had 1 month of Bicalutimide before radiation and a 4 month shot of Lupron right when radiation started. I went thru 27 treatments of IMRT which included the prostate and the seminal vesicles. The Lupron actually lasted about 6 months then my testosterone started climbing again. My PSA has been .2 for the past 4 years. I still get good erections and have orgasms but no fluid except a delayed drop or two of thick liquid. Tall_Allen said it's probably coming from the Cowpers gland. There's no more pre-cum.
Thanks for this info. What was the HT actually like? Did you get the hot flushes and how frequent were they and how long did they last? Weight gain? Tiredness? Mood swings? Any other info worth knowing?
I got the hot flushes every night when I went to bed and they were pretty strong for me. I don't remember weight gain or tiredness. I have stage 4 CKD and in remission from an autoimmune disease so I don't have a lot of energy to start with.. The mood was somber because my penis was about a half inch long for several months and there was absolutely no sexual feelings at all. It shuts you down completely.
So as you know T_A, I'm from Australia and my RO said that BT has taken a back seat as far as SOC is concerned. Obviously in the USA it is still well and truly on the agenda. My RO did say that they could add BT to the EBRT but that it would be a few months after EBRT. He mentioned that we do things a little differently over here than where you guys are, but I'm not sure if it is the right way. 😩
Idk where in OZ you are, but if you click on the names of any of those doctors, it will show where they practice. Some do HDR brachytherapy, some only do external beam - you have to call to find out which is which. Or, send an email to Jim Denham and ask him for a recommendation: Jim.Denham@newcastle.edu.au
The brachy part of the therapy can be done a couple of weeks before or a couple of weeks after the external beam part. Talk to someone who is actually an expert - your RO clearly doesn't know.
Thanks T_A, You certainly keep your fingers on the pulse for all this info. In fairness to my RO, I may have got the timing wrong for additional BT. He may have said that they can do it within a couple of weeks after EBRT.
I will (as suggested) email Jim and ask who he would recommend I chat with here in Adelaide.
Thanks again, no doubt more questions will be asked as we travel this journey.
Well a month ago I wasn't, but who knows what state I'll be at the end of November.
I guess you are aware of all these clinical trials that come out. Sometimes I think the initial results are released way too early which bolster peoples hope, but realistically sometimes those trials only become available to the rest of the PCa fraternity years later.
Have you ever heard of stereotactic ablative body radiotherapy?
I never get my prostate cancer news from articles in mainstream media, and certainly not from videos. Understanding how to evaluate a study is part of a doctor's job. It isn't worth my time (or anyone else's, IMO) if it isn't published in peer-reviewed professional journals, or at least presented to professional peers at major meetings. Consensus is part of the process of science. It has done pretty well for all humans in the last 500 years.
My RO recently spoke about SIB - He sent me a reply to my query (point 2 above) about BBT & RT +HT.
Can you cast your eye over his reply (your comments please section) and give me your thoughts and also have you heard of SIB? It sounds to me to be a form of BT but without the seeds etc.
Thanks TA
Regards
Mike
PS: Sending the screen shot because it is a PDF file that I cant copy and paste.
(1) "No conclusive randomized data of HDR-BBT vs EBRT"
Technically true. TROG 03.04 RADAR, although a prospective trial, was not randomized. Facilities that offered HDR-BT gave it, while facilities that offered EBRT-only gave it. So there was no selection bias (the source of error in non-randomized trials). It found that "Significant reductions in prostate cancer–specific mortality were achieved independently by longer androgen suppression [30% reduction] and by HDR-BT [35% reduction]). Adjusted cumulative incidence rates for prostate cancer–specific mortality were 14.5% for 66 Gy, 13.0% for 70 Gy, 11.5% for 74 Gy, and 8.9% for HDRB."
The advantage of HDR over LDR is lesser long-term urinary side effects. A recent analysis of TROG 03.04 RADAR showed that patient-reported side effects were not worse for HDR-BBT:
Low dose EBRT was used in both arms, so the relative advantage of HDR-BBT still is true. The advantage of HDR-BBT is the ability to increase the dose to the prostate while not incurring extra toxicity from raising the dose everywhere.
You never cease to amaze us all. As I mentioned in an original post, your help has reached many Aussies who on our own forum have mentioned your name glowingly.
Keep up the very positive and helpful work and keep in mind that many of us are very naive when it comes to all the complexities of this entire subject.
Focal Laser Ablation that is offered by Dr Sperling in Florida. Does this treatment measure up to the many accolades it seems to receive online? It does mention that you have to qualify to be accepted into this type of treatment. Do you know what the criteria is? I'm wondering if this treatment is unique to the USA or is it known as something different overseas, such as Australia?
"(Update 5/2020) Feller et al. reported on the 10-year outcomes of 158 men and 248 cancer foci treated with MRI-guided FLA. All men had low or intermediate-risk prostate cancer. 122 had an MRI-targeted biopsy of their treatment sites after 6 months.
• 26% were positive with clinically significant cancer
• 15% were positive with clinically insignificant cancer
• 59% were negative
(Update 5/2021) Mehrahlivand et al. reported that 3 years after MRI-guided FLA of 15 low and favorable intermediate-risk patients, almost half had residual cancer in, adjacent to, or in close proximity to the treatment area.
(Update 5/2019) Chao et al found that 8/32 (25%) had an mpMRI suspicious for cancer in the ablation zone within 2 years after FLA (Median time to positive mpMRI in the ablation zone was 6 months). All were confirmed by biopsy. Only one of those patients had low volume GS 6. 24/32 (75%) had an unsuspicious mpMRI, but biopsy at 2 years after FLA was nevertheless positive in 9 of the 14 men (64%) who had a biopsy. So 17/22 men (77%) had a positive biopsy in the ablation zone after 2 years. Change in PSA did not predict a positive or negative mpMRI or a positive or negative biopsy.
In this study, MRI-detected cancer was found in 10/27 patients after 12 months, with cancer found in the ablation zone via biopsy in 3 patients. Cancer was found in the ablation zone in 2/9 patients (22%) in this study, 7/10 (70%) patients in this study that used a targeted biopsy, and 4/12 (33%) in this study. In one study, 2/13 (15%) had residual cancer within the ablation zone, but only 13 of 23 patients had a targeted biopsy. Knull et al. compared the pre-operative mpMRI images with MRIs obtained immediately after FLA in 23 lesions. They found that FLA did not completely overlap the intended ablation zone in about half of the lesions, and those tumors extended a median of 0.9 mm past the edge of the ablation zone."
Thanks again T-A. Your wealth of knowlege and ability to access such info is a God Send. I think at this stage I will stick with my plan of 6 months HT, then ERBT+BBT and ongoing HT. That seems to be my best pathway forward, taking into consideration my own circumstances.
As always I really appreciate your time and efforts.
The hormone therapy is variable from person to person. Some people have no side effects. Me, i have them all, exhugion, hot flashes, deoression, weight gain, though no muscle pain. Go go gym (a lot),sleep when you can, and have people who can support you—even if you have to pay a shrink. But maybey you’ll be among the few side effects group. Best,mate.
what are the primary factors causing you to select RT vs surgery ? Fear of worse sexual SEs and greater risk of long-term incontinence? Are they going to do whole pelvic RT as part of your treament?
So my bro-in-law had robotic RP 14 years ago and has had incontinence ever since. Still wears pads and has even been fitted with a urinary sling. While he has now gotten use to it, he did say that had RT been up to the standard it is today, he wouldn't have gone with RP.
Plus from what I have gathered from other sites including prostatecancerfree.org/comp... it would appear as the RT has come leaps and bounds ahead and seems to offer a better outcome than RP but only if you add HT to the program. And that is what worries me somewhat.
I guess however that the HT effects will eventually leave the system but if you are 2 out of the 10 that have recurring incontinence after RP then that can be so very debilitating as well, because that is never going to go away. Anyway, that is where I'm at with it all.
I'm not sure the cure outcomes are better with RT +HT ? You must be very careful when using something like prostatecancerfree.org , IMHO. The addition of brachy may give better results......of course, when we combo treatments, SE risks typically go up.
Have you checked the memorial sloan kettering nomograms for RP results......based on something like 10,000 RPs done by their Docs. The incontinence rate long-term seem to be associated with the RP experience of the surgeon .
Very difficult decision.... did you consider your relatively young age ?
Thanks for your reply. It is really hard to make a valued judgement with all of the info that is now available online. One would hope that the veracity of the comparison chart on prostatecancerfree.org would be accurate or at least close. The videos I've also seen put on by Dr Mark Shulz being interviewed by Alex seem to also be really good and easy to follow.
Ive just seen a new treatment for a clinical trial that is having great success here in Australia. It was on our News service only this evening. Here is the link,
This is not actually a new treatment as far as I know. Tall Allen's blog site has a lengthy summary of results for radiation when a man is " oligometastatic"...no more than 3-4 detected metastasis, which is what that trial addressed. 33 men is far tooo small a group for anything conclusive. Quite a number of men here have had "spot" radiation...others call it whack-a-mole.
As I said, LONG-term results for RP and RT+ADT are very similar.....brachy seems to be the tie-breaker.
There are other "nomograms", but these seem to be the most accepted......bear in mind that Memorial is a specialty cancer center, so their results likely exceed the average urology practice. A specialty practice in Oz might equal the Memorial's results !
I know 4 men who had RP here locally......none complain of significant long-term incontinence.... one guy in his 70s, a minister, said he uses one pad a day for occasional drips. As I move toward 80, I have very occasional drips without ADT!
They are really interesting comparison charts. Thanks for sharing. Have any similar charts been done for those who want to do RT with and without ADT? Or with Brachytherapy rather than ADT?
Not familiar with any specific nomograms for the comparisons you mention....however, you can find many studiesshowing such comparisons......just takes the right search terms plugged into Google or pubmed.com !
I probably have them buried somewhere in the too many studies I have looked at and placed in my browser Favorites.. whatever typr of radiation is used, I would say ADT for 12 months likely provide 90% of the benefit that 24 months provides , when using the endpoint of overall survival. One study I just perused surprisingly found longer ADT provided more benefit for Gleason 8 than it did for Gleason 9-10!!
Perhaps you know an easy way that I can send you a copy of my Favorites? I'd be happy to do that..just private message me.
I had Gleason 3+4 and had 2 injections of HT at 3 month interval and brachytherapy which was done 10days after my second HT shot. My prostate size shrank from 81 cc to 41cc when measured at time of brachytherapy. I had some hot flashes after dinner during the first 3 months and this was quite tolerable. After second shot hot flashes and weakness at times became more prevalent. At this point I am at 9 months after start of HT and frequency of hot flashes is much reduced and not very intense so the 12 month timeframe seems credible. After brachytherapy it took 2 months to overcome slow and initially painful urination. As I recall the painful part was in fist few weeks. I drank lots of water which helped. I hope this helps though my path is not exactly as yours
Thanks John. It is really encouraging to know that some of you wonderful people are getting through your treatment with manageable side effects. It gives us newbies at all this some encouragement that not all is bad.
Had RT & ADT as part of Salvage therapy post RP. Surgery, Chemo and sustained ADT thereafter with added RT once again for spots... And the "Side Effects" I've experienced has been little to none!
Everyone reacts differently to the drugs, for sure. But in regard to the surgical skill and application of radiation, also a skill... I'll say has been superior! Why or how? Because I went to the very best Cancer Center I could access. It was conveniently located close to me I'll admit, but still the same. I wouldn't settle for second best touching me, radiating me, etc.
I absolutely will attest that mitigating side effects or negative experiences can be achieved by seeking out those with the most skill. And we all know repetition is the mother of skill! Local facilities cannot compete...
Yes I cant argue with you but I guess once you make up your mind what treatment you are going to have then you should wholeheartedly embrace it and think positive.
I had RP and required additional treatment including RT and HT anyway. RP also resulted in permanent incontinence requiring an additional surgery for a artificial urinary sphincter. Near total ED as well.
I’m one who tends to adapt well in general, so I’m grateful for that. I’ve also remained undetectable since the beginning of my treatment in 2019, so there’s no crying over here. Injections, pumps, pills have helped with the ED somewhat. A loving and understanding wife has helped more. A implant remains an option should I continue to fare well.
That said, I would never choose RP if I had to do it over.
Obviously You are correct that RT has come a long way, and it is definitely the better choice for 4+4. RP fails too much of the time, and succeeds where RT would also and with less SE. TA’s brachy expertise I would follow.
My only actual advice is in regards to the HT.
Specific vigilance is required! The folklore that ‘everyone’s different’ in terms of SE is misleading. Cardiovascular and weight bearing exercise significantly reduce and often eliminate HT side effects. It’s not a ‘luck of the draw’ situation. Don’t leave it to chance.
Thanks for sharing your journey and your positivity even though things haven't obviously been easy. I so hope that you will slowly but surely climb out of that treatment "hole" you went down and that you will get back to as normal a life that you can. In fact that is my hope for everyone on this challenging journey.
I was G7 PSA 156. I had extensive RT, whole pelvic up to my aortic bifurcation. I was on Lupron/Zytiga for 2 years. Off all of it for a short time and T returned in 3 months. Back on L/Z after recurrence. The first time around only the physical changes from low T no fatique, hot sweats, brain fog and nothing from RT. I road my bike to 41 of the 44 treatments. Increased my fitness lost 40 pounds and generally felt better. Second time around same , still very active, sometimes feel like I have more energy, same physical changes, and may have one night sweat about 5am oddly. That's normally when I take.my Zytiga but doubt that has anything to do with it.I hope your the one that gets no SEs but most agree staying active with cardio and weights is the way to avoid the ones that can be avoided. Not sure if only 6 months will get the physical changes but IMO those were the most shocking the first time around. Your junk gets small, may get moobs, hair loss on body, loss of muscle mass, hair on head got thicker. As a cyclist they weren't all bad. I never would have considered shaving my legs but thats not a issue anymore and the loss of muscle leaned me down.
Thanks for sharing and for your well wishes. The same back at you. Your 2 years ahead of me and by all accounts you seem to be coping reasonably well. I hope your road to recovery continues on and I hope my road isn't full of nasty potholes.
Try to get Orgovyx, the side effects usually disappear after 2 or 3 months versus much longer with Lupron or Eligard shots. As for the hot flashes, they were debilitating, central ac, paddle fan over bed and portable fan on my night table when I slept and fan on my desk at work.
I also had a very difficult time grasping new information, ie: mental confusion.
Thanks Ron, I'm guessing that such a drug is available in Australia. Many of the drugs in the USA are branded differently here but I'm sure my RO will find if such a drug is available.
Yes I had heard that the hot flashes can be quite severe. I'm sure if it gets to that, that I'm going to have a new found resepct for our wives who have endured menopause and had such flashes for sometimes a couple of years.
Commenting for husband (76). He is a 4+3=7, T2c no node or seminal involvement, no mets. No doctors that we could find would do BT. They all wanted to do EBRT plus ADT/HT; it is now the "standard of care" in the care in the US, or so we've been told
Regarding HT: hubby started on Lupron (1month shot) and then switched over to Orgovyx about 3 weeks ago, so it has been close to 2 months on ADT. The only side effects he has experienced thus far are headaches and increasing fatigue (he keeps nodding off in the early afternoon)
Hi Conchjoe, I'm interested in your comment that Brachytherapy is no longer seen as the SOC in the USA. The comparison tool prostatecancerfree.org/comp... shows that it is still the most effective treatment for PCa in high-risk categories. So I'm a little confused as to why it has suddenly taken a back seat. Has anyone got any info on this?
Oh and by the way, I'm not on ADT and I nod off quite a bit in the afternoons as well Ha!
you could recover quickly your testosterone if you choose for your ADT firmagone injection (degarelix). Initial first time starting dose 2 X 120mg and later 80mg every 28 days.
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