My overall question is....is there any evidence to suggest that surgical removal of the "mother ship" will either slow progression of current metastasis and/or help prevent further metastatic spread?
Initially we were told surgery was not an option, however, since we have obtained more information, it seems like it may be an option. My husband has had ED that has been refractory to treatment for over a year prior to diagnosis so that isn't a concern for surgery. It sounds like incontinence would be the biggest potential complication from surgery, but they think that the risk of that is low with his health and age. So if it can make the cancer burden lower, it makes some sense to me to pursue, but I'd love other opinions.
We are definitely planning to pursue radiation once chemo is complete either way.
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I had radiation to pelvis as part of EXTEND trial MD Anderson. I'm a firm believer of killing the mothership. No problems with urination/evacuation three years later, but I did have a space oar put in.
I was in one of those trials and chose surgery rather than radiation. I was oligometastatic, and 7 yrs later (with lots of ADT), my PSA is undetectable. Incontinence No; ED Yes.
I faced this question ten years ago. Based on my experiences consulting with surgeons and radiation/focal therapy docs, a careful review of mpMRI findings during respective treatment discussions offers outlook for SEs. In my case surgery was the better method and based on mpMRI my risk for incontinence was very low; no cancer showing in critical urinary bits.
I remain grateful I had the primary tumor burden removed and I believe the fewer the cancer cells the better. Surgery also provides capability to test for uPSA of <0.010 - value I rely on as best indicator. If I had a do-over I would have extended pelvic lymph node surgery using the frozen section pathology method. My salvage ePLND was after my unsuccessful 2nd treatment, salvage RT to prostate bed. Note, I chose to decline chemo. Hope this helps. All the best for you and your husband!
It is unknown if prostatectomy works as well as radiation. There is an ongoing clinical trial that allows surgery, but until we have more dat, radiation is the SOC. It is hard for me to understand why anyone would chose surgical debulking, even if it is equivalent in preventing progression.
I guess my thought was, if we are aggressively treating all known disease, and there's any (even if small) chance of potentially getting off of ADT in the future, why wouldn't we do whatever we can to get rid of the tissue that started the whole mess and potentially prevent further malignancy showing up? That certainly could be faulty thinking.
"...whatever we can to get rid of the tissue that started the whole mess and potentially prevent further malignancy showing up? That certainly could be faulty thinking."
Yes, it is faulty thinking. Surgery removes the prostate but leaves the cancer that has grown outside the capsule, even if the surgeon cuts wide. When there are disseminated metastases, there is almost assuredly cancer throughout the tissues outside the capsule. Radiation kills the cancer in the prostate PLUS a margin outside the prostate.
In my case, I was told that prostatectomy was first choice SOC (standard of care). However, I was NOT a candidate for this surgery as I am told it is very bloody (at the time my platelet count had dropped from decades long, maybe lifetime, average of 86 to hovering between 40 and 60, just high enough not to aggressively treat. So, the next step was radiation for 28 workdays straight with brand new equipment. Essentially this killed the prostate and anything inside it (my interpretation of doctor speak). As for the mets (metastasized to bone, lucky me, nothing found in endocrine system) continuing ADT (androgen deprivation therapy = currently = quarterly Eligard/Xgeva injections and daily 240mg Erleada pills). Two PSMA (prostate-specific membrane antigens) (glow in the dark scan) showed "nothing to see here" which is great news for me. PSA (Prostate Specific Antigen) blood labs consistently show less than 0.1%. My hope is that the treatment continues to work for me.
my own choice would be to ask: would such a thing make the cancer worse? no.
might it make the cancer progression slower? yes. Even if there is no study to say this. Yes, there is a chance, just by reason alone, one can grasp that there is a non zero chance.
Is it worth the side effects? well, what about side effects from the prostate getting bigger over time…? doing nothing about the primary tumor involves side effects too.
Your husbands PSA load at diagnosis is not known and this could make a difference in choice. I dont see a genomic test, like Decipher, which could also put a thumb on the scale. These are the 2 articles I have published that came to mind when I read your post. I would not venture to say what I would do, were I your husband. This case is a close call; the GS 9 w spread outside the gland are the big issues for downstream recurrence. Good luck. Rick
His PSA at diagnosis was 10.9....if that's what you mean by PSA load. And was 2.9 almost exactly 1 year earlier. Also, my understanding was that a decipher score was only useful to predict likelihood of spread, and since his has already spread, that the decipher score isn't really helpful. If there's a good reason to still get a decipher score, we can certainly pursue that?
I've also read something about some type of genomic testing that could (should?) be done on biopsy of metastatic lesions, but his team hasn't really pursued that either. Should we push for that to be done on his lymph node that gave us the initial diagnosis?
Let me send the LINKS for genomic testing again to see if that may help answer your question. For me genomic testing is more about telling you how aggressive the cell type of PCa is, that you carry and that is why its used to correlate how fast recurrence and metastasis can be. But its good for me to know how aggressive the cell type is...the more aggressive the cell type the more aggressive the treatment should be.
For me surgery is more aggressive than radiation; may be wrong but that is how I see it stack up. So for my case with a Decipher of 0.97 out of a possible 1.00, the results made me opt for the most aggressive treatment combination I could find; RP, followed by sRT, followed by a total of 21 months of ADT.
You also state that his ED is advancing...well, if he throws the kitchen sink at his PCa it will get much worse. If that is important he must take steps before treatment if he wants to preserve any function/ anatomy at all (I know its not important now, but it can/will be later). To get back on task...here are the links for genomic testing; good luck. Rick
Can you tell me specifically what I should ask for for the genomic testing? I have mentioned it to the urologist cancer specialist as well as two different MO's and have felt like they might not be understanding what I'm asking for. That may very well be because I'm not asking correctly. And should that be done on the prostate biopsy tissue, or on the metastatic lymph node?
Mine, nine years ago was Genomic Health's Oncotype Dx, done on prostate gland biopsy tissue. At that time it was not 'approved' in US but was available - my doc had no interest but I got it and self-paid. In Oct 2017 Medicare and VA granted coverage.
It is my experiences many docs don't put their time into additional investigative tools. Maybe, just as my long established urologist was about mpMRI and genomic testing (I dumped him for this and other reasons), docs are not trained/experienced nor interested. Also, perhaps no bandwidth to work with something new, not wanting to seek insurance approval. And perhaps no financial incentive (maybe seen as an operational cost without reimbursement). Self-advocacy is challenging and daunting but in my experiences necessary.
I think if you read through the link that I have and watch the podcasts that are embedded in the links, it should give you an idea what to ask for. Generally the best most comprehensive and accurate test right now is decipher. It’s got the biggest database.
…there are those that will tell you that this test is only good for prediction of metastasis. That’s not what I think it should be used for. The predictions are correlated to the aggressiveness of the cell type being tested. That I think is the ultimate use of the test. Also, if you listen to the podcast, there is a matrix that comes with your results that will predict if you will respond to hormone treatment or not. your doctor should be able to use this matrix if not, you could find someone that can apply it to your case.
…here’s something else about the decipher. The predictions that it gives you are based on you doing nothing. If you read my podcast, what you’ll find is that once you take additional treatment based on the decipher testing and other criteria, your outcome probabilities change. So I don’t look at decipher as just being a straight-up prediction of metastasis. Because that’s only true if you do absolutely nothing after the test. And you were taking the test in order to decide how aggressive to be with treatment. Once you apply treatment after the decipher test then those probabilities no longer matter. But the initial decipher test is giving you a chance to look at the aggressiveness of the cell type and therefore decide on how aggressive the additional treatment should be. I hope this makes sense.
…also look at the podcast that talks about the total chain of testing that is available and what testing should be done at what stage. There are some others that are recommended, depending on which stage of the progression of the disease you’re in.
Wasn't aware Prolia was given as a prophylactic for bone density with initial therapy... Reading your bio.
Diagnosed as metastatic, Gleason 9 detected... Already in a systematic therapy, ie, ADT and Chemotherapy. SOC for such a diagnosis, or, Metastatic Disease.
Opinions will vary, of course, as you're asking for just that, opinions. You have professional oncologist on your team? What has been their recommendation regarding surgery post treatment? Asking because I'm interested.
Most patients progress to where your husband is after going through some lines of therapy, although it's not unknown to be diagnosed at such an advanced stage, usually the patient then, is older.
I remember reading, that for patients who are diagnosed, and treat with surgery as first line therapy, who later progress to advanced stage of disease with recurrence and metastasis, then statistically they benefitted if they had surgery (debulked) as first line therapy.
This is not where you are, your husband's diagnosis is an entirely different thing. So I'm unfamiliar with advanced patients using surgery as a prophylactic post systemic therapy as you say, to debulk. That said, today, most studies support radiation having a slight superiority in efficacy for patients. Side effects are and can be the same, other than timing. I don't believe you will find a defining answer to your question...
I was diagnosed with Intermediate Risk, but with all the adverse features you could have. I met surgeons, and radiation oncologists before my decision. I chose to debulk as my first line therapy knowing that the question of progression or recurrence was never an "if" but a "when". I failed, in that post surgery I was still detectable, meaning the PCa was already outside the gland and missed. Had Radiation immediately thereafter, and that failed too. Followed by another surgery, chemo and more radiation, this all over the course of 4 years. Point is, everyone is different! MY cancer isn't yours, our cancers are as unique as we are. And truthfully, nobody knows or can tell you exactly how our bodies will respond to therapies chosen. It's befuddling, and difficult to accept at times. But we make choices... We trust the therapy until it fails, then look at where we are on the map, chose a direction and continue on our journey. Anyways...
Again, I'm not sure you'll find an answer to your question. Not sure how many patients debulk post chemo as this is an advanced stage fight! Could it help? Sure, why not. Would it be different though than radiation? Not so sure as they would both achieve the same result, killing the cancer, as the Chemo and ADT is doing now.
Bottom line is this, above all... Make sure you are obtaining your care from the BEST you can access. If not at a Major Cancer Center, one rated in excellence, then get to it. Not now of course, but should anything happen post treatment where you are today. Travel if you must, but I would recommend any of the top 5!
The last paragraph of Cooolone's response is the most on-point! Don't settle, get the BEST care available....
My experience over the past 6 months:
- I am a 71 yr old where my PSA went from 2 to 11 in 2 years with minor urinary side effects over that time
- Biopsy revealed cancer Level 3 (out of 5) in 3 places out of 12 on the prostate
-PET Scan did not reveal any spreading
- After much research, I decided to have prostate removed
- Now recovering from RALP surgery for the last 2 weeks - clean post op pathology report - dealing with urinary leakage & stomach area soreness, slow but positive recovery, but only time will tell.
My original urologist is a surgeon but seemed too busy to satisfactorily answer any of my my questions in detail regarding his experience/post-op expectations/follow up/etc, So I decided to look around for other options. After several months of painstaking research, I ended up traveling to the U of Miami to have the ROBOTIC ASSISTED LAPAROSCOPIC RADICAL PROSTATECTOMY surgery with Dr. Mark Anthony Lomibao Gonzalgo, MD PhD.
Dr. Gonzalgo is off the charts regarding the number of RALP surgeries he has performed compared to other surgeons (5 to 8 per week), I found the U of Miami system very busy, but top notch compared to what I was previously dealing with.
Wishing strength and resilience to everyone dealing with prostate cancer. May you find hope in each day, comfort in the support of loved ones, and courage as you face this challenge. You're not alone—keep fighting, and know that many are standing with you every step of the way.
We have seen 3 different MO's and none of them have had a strong opinion one way or the other. We have also seen 3 different urologists and initially none recommended surgery, but as we have learned more, it has been offered as a potential benefit. Since he already had ED even prior to diagnosis, biopsy, and ADT, the surgeons believe his risk of other complications to be quite low and they don't expect that his ED will ever resolve. Everyone agrees that we need to pursue radiation to the prostate or prostate bed as well as targeted radiation to the known lymph node mets. We're just trying to determine in surgery in addition and prior to the radiation would be beneficial. Thanks for your reply and good luck!
Also, there was discussion about Zometa infusions vs Prolia injection and we decided to go with the Prolia. Apparently there is some evidence that working to maintain bone mass in the setting of ADT can reduce the chance of bony metastasis. Our insurance approved easily.
Either surgery or radiation will help, and the efficacy of them is known to be similar. Even in a debulking, as was noted.
I would only add to definitely avoid surgery if ED is a substantial concern. Surgery left me largely incontinent but that is indeed uncommon. Not so for ED.
Radiation vs surgery - the great debate! Two great options assuming the disease is in the surgical or radiation field.
I chose RALP because I believe in removing the mother ship of tumor burden. I was told that my disease was contained from my biopsy - low tumor burden with 1 of 19 cores that was 4+3 @ 90% and 2 cores of 3+3.
Well the surgical pathology showed a very different story of extra prostatic extension, perineural invasion, right seminal vesicle invasion and tertiary 5 at the bladder neck.
I was about 99.9% continence and had about 70 - 80% erectile function back when eight months later I had a recurrence in an iliac lymph node that should have been part of the surgical field that led to 33 rounds of EBRT radiation and 24 months of leuprolide and 18 months of abiraterone.
After radiation my continence has taken a hit where I dribble, bowels aren't as strong, ED and atrophy was inevitable, I have very little to no option for future radiation in the pelvis area per my RO. The radiation/ adt has accelerated family history of hip joint issues (rt hip). Between radiation and adt my metabolic health (blood) has been hammered. I wasn't facing these side effects with RP.
Workup is the most important part is my point. Knowing where the cancer is with the use of multiple tolls is key. And by your profile, it looks like your hubby has had a good workup. Further investigation with a surgeon and RO would be key in your position.
I have a saying I use with some friends - pick your poison - meaning all treatments have side effects. Which side effects are you (him) willing to take on? What are future options with treatment X vs treatment Y?
I'm enrolled in a clinical trial to study that question but I doubt the results will be available anytime soon. Diagnosed April 2020, prostate removed October 2020. So far, I'm doing very well but there are no conclusions.
I saw no reason for that cancer-ridden piece of tissue to be in my body. Study it up and make your own decision. Best of luck.
As a data point of 1, if allowed I would kill the host. After RP you then know all PSA is from matastic disease. You would follow that with salvage radiation to the prostate bed and also target lymphatic uptake areas. It should also help with the the urinary issues. The PSA monitoring going forward will be much more valuable knowing it isn't coming from the host.
I see an opportunity to add my 2 cents. I had radiation for my PCa which now causes me to suffer from myelodysplastic syndromes (MDS) a rare blood cancer. Google it and give it the consideration it deserves in making your choice.
I am so glad you posted since I'm having this same debate. As the links from other members above show, this has been a long standing debate.
Because PCa is so individualized, perhaps even idiosyncratic as diseases go, it's hard to find medical opinions that cover the spectrum of disease. Any single practitioner will have to go far, wide, and deep to understand it all. Conclusion: a team approach is best.
But, that is hard to achieve in today's medical delivery system. Have you heard of a doctor called a Hospitalist? They have a specific role in coordinating care of complex patients who are being treated in a hospital. And in my locale I've heard that a role of 'nurse navigator' serves a similar function. Perhaps one day PCa will have an SOC that assigns such a caregiver to certain patients from the get-go. But let's not hold our breath...
Meantime, this is a great forum and it has helped me think more clearly about many questions and reservations I've had about my own PCa. My clinical picture is not the same as your husbands but I'm respectful of the 'mother ship' philosophy and I agree with the comment just before mine about RARP, or RALP, being a good option when it's a truly skilled and very experienced surgeon.
I'm a little late to the thread here, but want to add two encouraging things. First, I respect the Radiation oncology field and was led to Protons101 at Substack from a commenter here on the forum. He referred to the results of the PACE B trial as being influential in SOC for different stages of disease. You can find him, Mark Storey, easily enough. Here is one of his recent posts: protons101.substack.com/p/i...
In one of his entries, he made this statement, which he credited to his mentor who had been treating PCa for over 40 yrs. "Once you get definitive treatment for prostate cancer - your survival is basically the same as if you never had the disease."
Next encouraging thing. I've read, but not heard directly from my RO, that radiation killing off the entire prostate can have a triggering effect for the bodies immune system. The response may help to hinder the progression of disease, and BCR, long after the RT is completed.
One last point. I've heard from different sources that oncology frequently uses chemo, ADT, even immunotherapy, to debulk first before surgery. Or maybe it's refined to attacking just the cancer cells in order to decrease the tumor size. Perhaps this fits your husband's scenario.
I am a medical provider myself....albeit in orthopedics and therefore not very knowledgeable about prostate cancer, but I am very familiar with the importance of team based care!
I am comfortable overall with the team we have working on our case. We have a urologist who specifically practices in the management of advanced prostate cancer. He has become our "case manager" so to speak, but we are also very involved in keeping him accountable.
We have seen 2 different RO. One of whom said that there was no option for potentially curative treatment because there were already distant metastases. (And also because of the NCCN guidelines, it would be difficult, if not impossible to get the insurance to cover) The other felt strongly that he could target the few metastatic lymph nodes accurately and aggressively..... we're
going with the second guy!
We have also seen 3 different MO'S who are working well within the team and also together. We live in a relatively remote rural area but we do have local oncologists. We traveled to the big city to see a prostate cancer specialist and he is the "chief" but the others have agreed with the treatment plan which includes triplet therapy.
The question of surgery came up with the urologist that initially did the prostate biopsy after his inguinal lymph node led to the diagnosis. He thought surgery could still be beneficial. After the responses to the questions here, and discussing with the "case manager" urologist, we are skipping surgery and will be going forward with the curative intent radiation once chemo is complete.
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