I stepped away from my local Cancer OC and ventured out to another specialist in Seattle, Dr Celeste Hilgano who was mentioned to me from this site. I was going to have radiation but she steered me towards the removal of my prostate and lymph’s. The way she explained it to me was, it’s a good idea to remove the older mature cancer cells and if needed I will still have radiation as a back up with less complications if I was to do it the other way around. The radiation creates a lot of scar tissue and surgery after that is more complicated. So, I guess I’m jumping on the surgery? It made sense to me.
The other interesting thing that was mentioned to me by this OC was, she told me that being on Lupron and Zytiga at the same time may be a mistake. The reason she gave me was the Lupron was already working for me before starting the Zytiga. She also stated that because these meds eventually stop working it’s better to spread these meds out for when I really need them. My local OC never discussed anything like this to me! I was also informed that the goal with me would be to try and live with this disease like someone with diabetes. Meaning, off and on with the orals monitoring my PSA as a guide for dictating when.
I’m not sure if this is possible but, here I go anyway! My real question to all of you, have you been down this road and is it a good idea for me to have this surgery and then eventually get off the orals and back on when needed? So confused and of course scared to live with the life after Prostate removal coupled with the 6 lymph’s that they will also be removing.
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Doug47
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I think the world of Celestia Higano, but she is not a radiation oncologist. I suggest you talk to one. She is right that you would not have surgery after radiation, but you could have focal ablation after radiation. More to the point, brachy boost therapy is so effective that there should not be any need for salvage therapy. ePLND is just not very good at finding all affected lymph nodes. Have you had mets detected outside of your pelvic lymph nodes?
I'm only recommending you talk to a radiation oncologist (preferably one who specializes in brachy boost therapy) in addition to a surgeon. It sounds like you may still be curable, so I think that it was premature to meet with Higano or any medical oncologist (who specialize in incurable PC).
If your mets were detected using a PET/CT (either Axumin or PSMA-based), I think you should consider curative therapy first. You can discuss with an RO brachy boost therapy with about 25 sessions of whole-pelvic IMRT with a brachytherapy boost to the prostate plus about 2 years of continuous ADT. This has better oncological results (distant-metastasis-free survival and prostate cancer survival) than either IMRT without the boost or surgery in men without known pelvic LN mets.
One recent small study (which included a lot of men (44%) with pelvic lymph node mets) suggested that if RP+ePLND is followed by whole pelvic salvage IMRT+ADT (which they call "MaxRP") the results may be at least as good as brachy boost therapy:
They should not only remove the 6 LNs that you know about - there are undoubtedly more that are too small to be discovered yet with a PET/CT - the surgeon must try to remove them all (ePLND). However, ePLND cannot extirpate ALL pelvic lymph nodes and carries risk of lymphedema and lymphocele. Salvage pelvic radiation afterwards increases urinary and bowel side effects. But I cannot rule out that this "MaxRP" might be more effective.
If you are pursuing curative therapy, you cannot use intermittent ADT.
Listen to TAll Allen and talk to a radiation oncologist to get all your options and facts in order to make the best decision .
I will say that surgeons tend to offer overly optimistic views if success and especially erectile disfunction.
I opted for surgery and had to get salvage radiation 1 year later. I wished I had assessed all my options . I may have chosen a different path .
I started Lupron over 1 and 1/2 years ago (prior to SRT) and my last dose was in November of this year. My ONC says no more doses as by the time my T returns it will be over 2 years and I will then hope that PSA remains undetectable . Like you , no one has suggested anything beyond Lupron as I have been undetectable the entire time .
Actually the course of my treatment was similar to what your looking at. I was the same age too however I did do chemo before anything. I talked to a radiation oncologist from MD Anderson and a Urologist from The Mayo. The radiation oncologist did express concern about my age and doing radiation and she actually recommended surgery. She did say the surgeons at MD may have mixed opinions. Her idea was the same as you were told, don't put all your eggs in one basket. Radiation is a one and done treatment and will make anything else difficult. Chances are good cancer will come back and it would be good to have another option if needed. Also the side effects of radiation usually occur later and it could be a factor down the road. Those were her words.
I ended up at The Mayo and had an open prostatectomy with an extended lymphadenectomy. It was a little rough the first few days but manageable. No incontinence with nerve sparing on one side but I do have ED. So far I remain undetectable and I was diagnosed with aggressive disease. Last shot of HT in February and taking things as they come. I don't think it ever goes away, I just hope to keep cells sleeping for a long long time.
This is a very difficult decision. I don’t know who to listen too. Each decision is one and done. So, logically it seems surgery is the answer then have the radiation as another backup?
Salvage always entails more side effects than getting it done the first time. Do not listen to people on the internet (including me). Read the studies and talk to experts in each therapy. You are fully capable of deciding for yourself once you get all the facts.
A few reasons I chose surgery was I had abdominal nodes involved that were too dangerous to hit with radiation (little did I know chemo had already wiped them out). Another reason was my age and having Gleason 9 outside of pelvis it's likely to come back. I want something available as a backup plan and after consulting with 2 doctors that are specialists in this area they seemed to think that was the best approach for me. Having nothing to fall back on when looking at 30 plus years to live was unnerving to me.
Nobody knows what exactly is best and Tall_Allen is correct in saying form your own opinion after gathering information. The most important thing is to choose a specialist doing the surgery or administering the radiation. I never looked into brachy boost therapy because I was not even aware of it at the time. The radiation oncologist I talked to never mentioned it and again I had disease outside of pelvis.
I know the odds are much higher when outside of the prostate that it will come back than won't. Being in your forties that is something to consider. Also no matter what you choose it is important to get your PSA as low as possible before treatment is done. Think of it as kicking it while it's down. The weaker the disease the better effect the treatment will have. That is where a good Oncologist comes in to make that happen.
I also want to mention your on the right track. You made an informative decision on a highly regarded Oncologist and moved on it. You got the momentum started and it is always comforting to know your in skilled knowledgeable hands. Don't let your guard down and keep after it. There is nothing easy about what's ahead and no guarantees. The best way to put the odds in your favor are exactly what your doing. Learning and making informed decisions.
Thank you for saying that. Unfortunately I feel like I’m totally lost on all of this stuff. One thing I am realizing is, the right choice is super vague and these doctors so far don’t really express the concern that I would expect. If we don’t ask the right questions it seems like we’re screwed! All they really say is, “there are a lot of new drugs”.......yada,yada, yada...but, nothing definitively.
I feel alone in all of this with the exception of this site. A lot of what I read here with the abbreviations still confuses me. I have a lot to learn and I need to be very careful on what I choose. I’m the kind of guy unfortunately who sees a problem and jumps right in to fix it before I really thoroughly read about it. Stupid....lol
I'm only a few years into it myself and not nearly as seasoned on treatments and drugs as many are. One thing I am always aware of is that nobody cares about you more than you. When you leave a doctor's office it's on to the next patient and I'm sure we don't make their conversations much outside of the office. It really is a slippery slope as far as treatment options. I've heard the same yada yada speeches and it's hard to even get excited over treatments that will take years before we see. Use what you have now and the best you can find to be in your corner. Finding a doctor willing to push the boundaries is a good start. She has great reviews here and from what she is recommending sounds like she is aggressive and looking out for your best interest.
You can beat APC down .. find a way to vent the BS at every turn it’s frustrating and info overload.. . Make the best of now and the future will take care of itself. Info her can help . But you need hands on expert advice.
Tall Allen is about right on what he says but some of the reference reading can be difficult to understand. And no matter what you end up choosing as primary treatment, there is always a possibility the Pca will continue at some time after initial RP or RT. Common sense tells me Brachy Therapy BT, with maybe 100 radioactive pellets inserted ro PG will the most effective form of RT because the dose that is given can be twice the amount from beam RT, and the BT tends to not affect bladder or bowels like EBRT or IMRT.
You have not mentioned your Gleason Score in above post, but you have mets in lymph nodes which means the Pca has already begun to spread and there are probably more mets than 6, but are presently too small to form an image in any scan, so even if you have an RP or BT or IMRT etc, there is likely to be a future battle ahead for which local therapy may not work well, so you may need systemic therapy, eg, chemo, or targeted radiation with Lu177.
The Gleason score given after biopsy tells docs how likely there is any spread, but whether there is or not varies widely. The lower the Gleason score, the more likely the Pca has not spread, the higher the Gleason means its more likely. The Psa varies for the same amount of Pca tumour weight or volume for different men. Some will have Psa > 8 and a Gleason 5 is found, but I had a Gleason 9 with Psa > 6, and docs don't act to search for Pca unless Psa > 5, or there are other serious symptoms like blood in urine or pains from PG. So I went under the radar and when RP was attempted, docs could not proceed because the cancer was well ourside the capsule and adhereing to nerves and docs could not see what they needed to cut. But
the two most likely lower pelvic lymphs were removed for immediate biopsy and no Pca was found by microscope.
So docs looked elsewhere, removed seminal vesicals then sewed me up and in following days I was assigend to 70Grey of EBRT in 6 months time, but with ADT commencing immediately and all this happened between Dec 2009 and April 2010. Images of lymph spread were positive for 2 lymphs in May 2016, when I had a PsMa Ga68 PET / CT scan, and when Psa had risen from minimum of 0.08 in June 2012 to 5.6 in May 2016.
I assumed much more spread was likely, and 3 more PsMa scans since 2016 have discovered countless mets in bones and in more lymph nodes but none has been found in any organs. I had salvation IMRT of 31Grey to PG with hydro-gel used to stop rectum getting too much total additional RT. I did have radiation collitis for 2 months, but I have fully recovered apart from needing to get to a loo fast when the urge occurs. I have full urinary continence so I escaped major damage others have had.
The combined effect of RT plus ADT completely exterminated all sexual ability and any pleasure, and skin berween head and shaft became fragile, and tore easily. The central sponge tissue of shaft became clogged with fibroids, and unable to expand, but the non central portion hardens to make a Rodger that is short, with bend towards toes, usefull only as a drain pipe. But at 71, that just does not matter; I have had no female partners for last 20 years; nearly all ladies lose all desire and ability at some age after 22.
It is another variable and unreliable facet of life than women have a shorter sexual life span than most men.
I do not mind having become quite de-sexed, but I would much like female friends, and to have a relationship, but I never ever see women around who really want a man after age 45. Most want as little as possible to do with all men unless they are married to one, and she and he are mature enough to accept that sex is never to be had again.
The usual protocol for Pca treatment is
1. Open or robotic RP. In maybe 50% of cases, Psa goes to undetectable and Pca never "comes back". Men in this group are the Lucky Few, and none ever need to post here because they have defeated their Pca. Many will have ED, and full amount of testosterone, so their challenge is to control their desire while never getting a hard on. Some men fare better and retain sexual abilities and sex remains a pleasure to them and their missus.
Continence varies between men, some end up with no troubles, because surgeon manages to not sever many nerves wrapped around the PG when he removes it. But cut nerves = ED and continence problems.
2. Non RP, ie, RT or other treatment. Many men have RT because RP is not possible and they usually have a long fight for many years, like the 50% who do get RP, but find that after initial Psa reduction, Psa begins to rise alarmingly, so ADT with Lupron, Eligard, Lucrin is tried, or orchiectomy is done, ie, balls are removed. The Pca is most often suppressed but not killed off by depriving it of testosterone, and even without balls, some testo is made by adrenal gland so at no time does a man have zero testosterone. Testo deprivation plus any other form of hormone manipulation by casodex, abiraterone, enzalutamide will be found to NOT stop Pca growth at some time between 3 months and 10 years. No matter how such chemicals are sequenced, results usually lead to same thing, Pca progression, and then mets grow big enough to appear in scans and only chemo or special systemic RT can kill the Pca cells which have learnt or mutated to be able to grow with a very small amount of testo, or they make their own testo supply.
The Pca usually goes to bones and mutates to an unknown number of varieties of Pca, and many different strategies are now used cancer but very often there remains ZERO chance of any remission, and each therapy can only extend quality of life a little longer.
About 30% + of all men diagnosed with Pca will die from it, although figures could be higher because cause of death is written in book as Bone cancer, or Lung cancer where in fact it all started at PG.
After all possible ADT became useless for me, I began chemo in July 2018, and I had 5 x Docetaxel infusions over 15 weeks. Psa went from 12 to 45, so it too was not able to reduce my Pca. I had my first Lu177 "Theranostic" infusion on 8 Nov 2018 and next is 4 Jan 2019. Psa went down to 25 at 1 month after last chemo, just before first Lu177. It probably went lower, before rising again to 25 at 5 weeks after first LU177. So maybe a month after next Lu177 I might see a lower Psa and scans might show less Pca lesions. But then I might see no such thing, and Psa just rises, unable to be stopped by Lu177, or anything else, and if Cabazitaxel is used, or carboplatin or a number of others, side effects could be just so bad it would be better to give up and just die, which I have seen a number of other ppl do. Or the treatments cause white blood cells to become so low there is no resistance to infection so some small infection just kills a man despite whatever is used to combat the infection.
But during the last 3 weeks I have managed to cycle 317km average per week with some outstanding speeds better than 4 years ago. So although I am a stage 4 Pca patient, I have excellent QOL, but I have no clue how long it will last. And this is a major problem for men with Pca; they just never know when it will overwhelm them, I have a big variation of longevity after diagnosis.
One of many factors affecting overall survival time with Pca is the initial Gleason score that could be between 4? and 10. Scores less than 5 have bigger chance that lead to a fully successful RP where the man has no further Pca worries, and Psa nose dives after op, becomes undetectable , and stays that way for the rest of his life.
But at the Gleason score increases to 10, the chance of avoiding Pca progression reduces.
My Gleason score was 9. After I'd had 2 years of ADT with 70Grey EBRT within that time, I learned that the chance of my ADT + RT killing all Pca and remaining free of Pca progression was less than 10%.
So I had a chronic disease that would most likely end up killing me because I have no other "co-morbidities", ie, other diseases or conditions that were likely to cause death, such as lung cancer, heart disease, diabetes just to name a few that may affect any of us in later life - so far - but I really have no idea what is around the next corner.
One doc at my hospital had tried to convince me during the 3 days I remained at hospital after the failed RP to hope for a cure with the future EBRT and ADT but I restrained myself from telling him he was a bullshit artist. I'd believe it when saw it, and before I knew more I was already skeptical, so I just had to accept the fact that all I could ever do was delay the progress of Pca, but never just get rid of it all which is what everyone wants, but which is what rarely ever happens.
Yesterday I phoned my friend with runaway Pca and in 2 months he's gone from OK and able to walk his dog for hours to being bed-ridden in hospital, with Pca met causing a bowel blockage and serious pain where a met has burst thru bone surface within a hip joint.
He may be able to get included in the latest new trial at Peter Mac Melbourne where they give Lu177 PLUS Keytruda, an immune therapy drug that has given remission to many ppl with melanoma because it prevents the cancer from "hiding" from the bodies' immune system.
Prostate is extremely good at hiding so it does not get attacked by immune cells which normally kill a constant stream of various rogue cells in blood from infections and many cancers continually.
The PeterMac trial may begin in February 2019, soon, and docs think Lu177 makes the Pca less able to hide, and maybe some strange chemistry goes on which ordinary blokes like me could never figure out. So while less able to hide, the Ketruda is able to "see the Pca cells" and then hook onto and kill the cells.
In another minor breakthrough a doc in Sydney has found that where a Pca patient is taking two common cheap drugs and I quoted this to my sick friend
""""Interesting trial in Australia--2 common drugs (cheap) that seem to make prostate cancer cells unable to process waste products and "explode"...I like the sound of prostate cancer cells exploding....too early to tell for sure but sounds like another possible route to fight the beast...
9news.com.au/2018/12/26/17/... """""""
Its a video from channel 9 in Oz, and it talks about 2 cheap drugs taken together, Lozanoc, and Hydroxycloroquine which have been found to cause Pca cells to be unable to get rid of their "waste products" so they just explode. Its a bit like putting a cork up the Pca's arsole and then it dies because it can't have a shit.
There can only be hope for more good life if one can get a benefit from whatever is available. I recall being quite gloomy about my future in 2015 when Psa zoomed up during a second short pause of ADT, but in 2016, the PsMa scans became available and so did Theranostics Australia who began with Lu177, and also in 2016 the Calypso stereotactic IMRT came to Oz. I was able to benefit from all these things, and if the docs get me to last a bit longer I might be able to get whatever else comes along that is worth buying.
But my sick freind in hospital sees now that any delay of a month or more may mean he gets so much worse he misses out on what might help him. It could happen to myself, or many of us.....
I like your you explanation of events..none of us has a clue to our our own longevity.. biking is your key .. Take care .. Happy trails to you Patrick-turner.. I admire your style and honesty..
Doug47, thanks for posting about your options. I'm early in the process, 64yo, with recent dx by Dr Bahn of PSA 23, G7(3+4) +leftSV. No PSMA Pet done yet. He recommended HDR-Brachy + IMRT + 6 mos ADT (2 adjunctive). I am going to see Dr. Chang at UCLA Jan 07 to discuss this option. I'll share his comments after the meeting if you are still considering radiation by then.
Ok, so definitely no expert here, but I will toss my hat into the peanut gallery ring. I am high risk Gleason 9 with 5 PSMA imaged positive lymphs. I was all ready to get nuked with brachy and IMRT because the data is pretty strong for survival out to 7 years. Then I got some news that I had a germ line ATM gene defect. This changed my course of action profoundly and I chose RP with elnd. Germ line defects like BRCA and ATM don't really like radiation that much, and though in large meta studies the estimated rate of adverse affects are no more than 2-5 percent greater overall, it still seems pretty clear its a risky proposition. There are observations in the literature about spontaneously induced secondary tumors(brca breast) that gave me serious pause for concern. Paradoxically, the cancer tissue would also not like radiation due to this defect and this is the rub. In the end I still had a positive margin and 1 lymph the surgeon couldn't/ wouldn't get, so I am still "considering" followup radiation, but I am extremely guarded about this path. So my point is, you main gain additional useful information by getting a Color gene assay. It might help you make your decision, if your still on the fence.
I just started Lupron several months ago, when the first doctor I had was a Urologist…we eventually ended up at a local oncologist…who suggested Zytiga at first instead of docetaxel—I think he knows I am taking Lupron (The first docetaxel was not fun). Your comment will make me check
Hi,
"The other interesting thing that was mentioned to me by this OC was, she told me that being on Lupron and Zytiga at the same time may be a mistake."
Well, this sounds logical, but the LATITUDE, CHAARTED and STAMPEDE clinical trials, claims otherwise, thus the ADT2+ treatments. These are large PCa clinical trials, took many years with myriad patients and medical institutions involvement.
For me, just one week of Casodex, "relieved" my initial (PSA 1000+) symptoms of weak and burning urine stream, as well as incontinence. Added Eligard two weeks after Casodex, then added Zytiga one month after Eligard - after 2 months, current PSA 0.5.
Perhaps, just take Casodex until PSA rise, then Lupron, then Zytiga and so on. The idea is stop PCa at the pilot light level, don't let it become a raging fire and then react...
Good on you sir!! And thank you too!! Happy New Year!!!!!!
Its the 6 million dollar question ... Or even more . Life or death.. I had a pc specialist make my initial call as to my plan . It was Adt and Rt.. Seek knowledge as you are and you’ll make the right choice for you... stand up, live healthy and find happiness .. For now , believe that you are going to push APC down and outlive it.. It’s a hell of a new way of life . But it is life.. You are not alone in your dx or fears . Most have had them. exercise as much as you can daily.. keep loved ones around you.. It will get better ... not without suffering .. once you decisions are made , then you can focus on getting thru and healing yourself. Peace young man .. You will survive this.. Don’t be too hard on yourself or others like I was . It’s to no avail. Keep the faith..
I don’t know what to say. Thank you for taking time and helping me through this very confusing and scary time. Thank you to all who keep replying to those of us who are going through this for the first time.
Great t hat you found healthunlocked.. early on. you’ll” get answers here.. APC horrifying nightmare to enter. It will get better with time recovery and acceptance.. it not a Stroll in the park.. you’ll scramble to live. But I think you’re going to be around for a long time.. Don’t waste years like I did getting bogged down with anger and self loathing.. feeling of worthlessness can appear with castration . You will make the right choices.. Good luck and stay positive about your prospects.. Don’t entertain the doomsday scenario. If you use everything you can to beat pc , you will.. Keep Positive imaging and people around you along with humor music and the things that you normally enjoy. You’re in the worst part right now.. This too shall pass.. live healthy ...
My partner only had one met outside the prostate - lymph nodes but they suggested to have surgery to remove prostate, and lymph node(s) and then have radiation and chemo to ensure best chance. He was discussed with a group of radiologists, oncologists and urologists in their monthly meeting in Adelaide Australia and they all agreed this was best treatment as radio before surgery was not great and hardly anyone was willing to do this surgery. Also hormone treatment. At my request, they sent his results to one of the best researchers (Aust and based in the US) and he agreed this was the best way forward. He had robotic surgery and has bounced back (gym in 3 weeks and no urinary issues, but erection problems still which will hopefully improve).
In our home city - they don't want to do radio first and if not as useful, do surgery second.
IMHO - no one should do salvage surgery - ever. Especially now that there are many alternatives. Also, I don't believe that anyone should have surgery planning on salvage radiation -- Why not do it right from the get-go? But I hope this set of therapies works well for your partner.
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