Surgery or Radiation? : I recently... - Prostate Cancer N...

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Surgery or Radiation?

EaNa
EaNa

I recently found out I have PCa and I've been given those two choices. My Urologist consulted with 5 colleagues and recommends robotic RP but the Oncologist says the results are likely to be the same with EBRT but possible side effects are different. The decision is daunting at best and I keep flipping back and forth daily. My specifics are: PSA 8.1, Gleason 4+3=7, 80% of 14 biopsy cores with cancer, all "6" except one "4+3". Negative CT scan, bone scan, and chest X-ray for spread (T1c). I'm in good health otherwise so likely to do Ok with surgery but the Surgeon says he will likely have to sacrifice one of the nerves (I take that for a given), the other is 50/50. I also have Diverticulosis and I'm a bit concerned about radiation making that worse, the Oncologist is not concerned. Would appreciate comments to help decide which treatment to go for. I'm sure this question has been asked a million times by now but each case is different, I'm sure comments will lead me to consider things that I haven't even thought of thus far. Thanks in advance!

172 Replies
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The principal criterion is your age

The commonly used rule of thumb is: Less than 70 y surgery. More than 75 y radiation. 70 to 75 gray range depending on individual health condition. Regard nerve sparing as probably not going to happen. Surgeons prefer to totally resect the nerve bundle as for them is faster- easier to perform plus leave one less spot for recurrence. Finding a surgeon is tricky. Those with a high turn over, 300 procedures or more per annum, are geared in production mode. Those with less than 100 per annum are in getting up to speed mode. IMO, in between manifests a better combination of experience and attentiveness.

EaNa
EaNa in reply to Justfor_

Thank you for your comment, some things I had not considered.

EaNa
EaNa in reply to Justfor_

Going full circle, reviewing some of the early comments. What is it about RP that makes it preferential for those under 70? I've run into a few posts where some have claimed that their Uro has told them that in order to get to 85 RP is the way to go. Why is that? Is RT expected to shorten a person's life or just that it isn't as effective for younger? I don't understand this. BTW, I'm 64.

Justfor_
Justfor_ in reply to EaNa

One more leg to the journey towards the inevitable. It will buy someone some extra years with good QoL if SE are avoidef. Any SE are readily demonstrated and the results are quickly known. Yet, one has to have the "cash" to buy the lottery (cash equals age).

EaNa
EaNa in reply to Justfor_

Is the idea that a RP will buy you some years before anything else has to be done? So if you are under 70 cash in your RP chips now and keep your other chips for later?

Justfor_
Justfor_ in reply to EaNa

Exactly

EaNa
EaNa in reply to Justfor_

The exception to this would be if you need adjuvant RT after the RP and that is what I'm trying to figure out now. I don't know if it's possible to determine that w/o the RP, maybe from the CT-scan or an MRI? I think this is the key to the decision for me.

Justfor_
Justfor_ in reply to EaNa

Check if you qualify for the UCLA PSMA trial Tall_Allen posted about:

healthunlocked.com/prostate...

EaNa
EaNa in reply to Justfor_

Will look into, thanks!

Justfor_
Justfor_ in reply to EaNa

Thank Tall Allen who brought it into light.

Diverticulosis is not an issue with radiation. The GS 4+3 puts you in the unfavorable intermediate risk category. While surgery has equal results for favorable risk, certain kinds of radiation have a better cure rate for your kind of prostate cancer. I suggest you read the following article and talk to experts in SBRT, hypofractionated IMRT, high dose rate brachytherapy (monotherapy) and brachy boost therapy:

prostatecancer.news/2018/10...

You should also ask yourself the following questions:

prostatecancer.news/2017/12...

You can see the relative side effects in this randomized trial:

prostatecancer.news/2020/02...

Don't take information from doctors who do not specialize in those things - their lack of knowledge may not stand in the way of expressing an opinion.

EaNa
EaNa in reply to Tall_Allen

I've sent the link to the first article to my Oncologist for comments. The other two links are extremely useful as well . Thank you!

maley2711
maley2711 in reply to Tall_Allen

Allen -

Excellent help for EaNa ! Your 1st link makes a startling comparison of surgery vs radiation for mean of 5 and 10 year recurrence free for surgery vs 7 yr recurrence free for radiation, for unfavorable intermediate risk. Do you feel comparing mean of 5 and 10yr for surgery to 7 yr for radiation is a fair comparison? That radiation study should have 10 yr numbers in one yr. Wonder if that study compiled 5 yr numbers, to compare to 5 yr for surgery?

This link shows similar comparisons ...when I posted the link at another PCa forum, I was warned that the sponsors of site might have influenced the contents of the site?

prostatecancerfree.org/comp...

Do you have any such comparisons for Gleason 8 or greater.....high risk? I believe there are such comparisons at the prostatecancerfree.org site...don't recall how current.

Tall_Allen
Tall_Allen in reply to maley2711

"Do you feel comparing mean of 5 and 10yr for surgery to 7 yr for radiation is a fair comparison?" You are trying to be way too granular with this. The only really fair comparison is the ProtecT trial. As I wrote: "note: this is not a randomized comparison, which is the only valid way of comparing." The sources I provided were large and multi-institutional or at least top institutions wherever possible. Sources matter. I frankly have no idea what to make of your circles..

"That radiation study should have 10 yr numbers in one yr" No, if it did, I would have posted it. There is only one SBRT trial with 10 years that I know of.

"Wonder if that study compiled 5 yr numbers, to compare to 5 yr for surgery?" That would be pointless. I was trying to find the best cure rates - fewer years of f/u tell us less than more years.

"Do you have any such comparisons for Gleason 8 or greater.....high risk?" It's Gleason 9/10, but it's the best study there is:

prostatecancer.news/2018/03...

maley2711
maley2711 in reply to Tall_Allen

Allen - This is the problem with online communication...easily misinterpreted. I WAS NOT challenging the value of what you posted ! just sincere questions .

Tall_Allen
Tall_Allen in reply to maley2711

I didn't think you were. You asked legitimate questions, and I gave legitimate responses. I don't see what was misinterpreted.

maley2711
maley2711 in reply to Tall_Allen

I may havve misinterpreted your answer to my original questions...sorry.

EaNa
EaNa in reply to Tall_Allen

My Oncologist says I’m not a good candidate for SBRT because I am too high risk and he recommends treating pelvic lymph nodes to a lower dose and SBRT cannot treat a large volume like that. He recommends hypofractionated IMRT/IGRT. MSKCC has nomograms for pre-RP recurrence but I haven’t found a nomogram for Pre-EBRT to compare. Do you know of any? I’m not sure how to transform results from the SBRT report to EBRT or even if it can be compared loosely.

Tall_Allen
Tall_Allen in reply to EaNa

I'm not sure why you are talking to an oncologist at all about this - medical oncologists have no expertise in radiation oncology, which, apparently, doesn't stop them from expressing an uninformed opinion.

Actually, SBRT is in a clinical trial for treating even high-risk PC including pelvic lymph nodes, but I don't understand why you are treating the pelvic lymph nodes. The best way to determine whether pelvic lymph node treatment is necessary is the Yale formula. If predicted lymph node risk is >15% they should be treated.

redjournal.org/article/S036...

The Yale formula is:

%LN risk= (GS-5)x (PSA/3 + 1.5 T),

where T = 0, 1, and 2 for cT1c, cT2a, and cT2b/cT2c.

so, for you, that is:

%LN risk= (7-5) x (8.1/3 + 1.5 T)= 2 x 2.7= 4.7

Based on the formula, your risk of lymph node involvement is so low that treatment risks outweigh the oncological risk.

There are no similar nomograms for primary radiation treatment.

The following article discusses SBRT vs hypofractionated IMRT:

prostatecancer.news/2016/12...

EaNa
EaNa in reply to Tall_Allen

Thank you for the Yale formula bit, I don't think I would EVER have found that out by myself or from any of the urologists I've spoken with. I will have to ask about that.

Just to clarify, when I said I was talking to an oncologist I meant a radiation oncologist, the Dr. that would supervise my treatment. We did not get to the point where we actually planned the therapy, and I don't know if he did any calculations (e.g. Yale equations) or if he is simply offering an off-the-cuff best guess before the planning meeting. Based on the simplicity of the equation it wouldn't take him more than 30 seconds to calculate it. I don't know...

My urologist is pretty adamant that due to my age and being in good health (other than PC) RP is the best first treatment for me but I'm having trouble accepting that because when I see reports that claim to have significantly better chances of non-recurrence with RT over the 50% I get from pre-RP nomograms it makes me pause. Even my radiation oncologist said my chances are 65-75%, so where's the advantage in RP then assuming cure is the highest priority? Urologist says the only way to know if there's spread is to take out the Prostate and do the biopsy. She says that no one in her department will want to touch it if there's recurrence after RT, the risks and side effects for Cryotherapy are pretty bad and hormones for life doesn't sound very appealing either. As far as RP after RT they have only one surgeon that specializes in that and I have no idea of his experience or anything else. Too much to bet on. Not an easy decision and with "Intermediate Unfavorable" diagnostic I feel rushed to decide.

One more question if you don't mind: Would the Yale equation also apply to the need for removal of pelvic lymph nodes in an RP or is it apple and oranges?

Tall_Allen
Tall_Allen in reply to EaNa

Your urologist only knows the part that he knows. It's up to you to get the whole picture.

The article I showed you above gives what you can reasonably expect from the various therapies. Your urologist is also not knowledgable about current options for salvage after primary RT, which you can read about here:

prostatecancer.news/2017/09...

They use a different nomogram for the need for extended pelvic lymph node dissection (ePLND), and use a lower bar because the surgeon is already in there anyway. Read the section on PLND in the link below:

prostatecancer.news/2017/01...

ePLND is not done very much in the US - more so in Europe. The thinking in the US is that if even a single lymph node is cancerous, they have to irradiate the whole area anyway (surgeons can only find a certain percent of the 100-200 lymph nodes in the area - so radiation is used to get the ones they can't find.) So surgeons in the US typically only sample a few nearby ones (PLND). Radiation on top of ePLND increases the probability of lymphocele and lymphedema, so the patient is probably better off without the combination.

If a cancerous lymph node is detected after prostate-only radiation, it is still possible to get LN salvage radiation.

EaNa
EaNa in reply to Tall_Allen

Excellent, you are giving me a LOT of new information and I appreciate it. Will continue reading these new articles you sent. Thank you.

EaNa
EaNa in reply to Tall_Allen

Based on the nomograms my chances of Lymph Node involvement is 21% for the American nomogram and about 18% for the European, so I suppose I can expect at least limited PLND. A question I would have for the surgeon is whether it would be possible to limit surgery only to the Prostatectomy and follow up with RT for the LNs IF and only IF the post-op biopsy or subsequent PSA shows a need for it. If you have any comments please do.

I also found this article that may be of interest on this topic:

ncbi.nlm.nih.gov/pmc/articl...

Tall_Allen
Tall_Allen in reply to EaNa

It doesn't work like that. When the surgeon is in there, he cuts wide if he suspects he has to. Most do limited PLND. A few, like Karnes at Mayo, always do ePLND. The surgeon does what he does.

EaNa
EaNa in reply to Tall_Allen

Well, but doesn't the patient have a say in what he wants done? Can a surgeon refuse that? What if I can demonstrate to myself based on research that I am just as likely to do well without the PLND?

Tall_Allen
Tall_Allen in reply to EaNa

Nope. You will be out cold. The surgeon does whatever he always does. I remember asking 3 different surgeons:

1) can there be a pathologist standing by to examine frozen sections? and

2) if cancer is found, can I be closed up, for RT later?

One of the 3 did frozen sections. None of the 3 agreed to close me up rather than remove the NV bundles. It was a big reason I did not do surgery.

EaNa
EaNa in reply to Tall_Allen

Yes, I had the same thought re. #1 but was not offered that possibility either, as far as #2 the surgeon did say that he's seen some cases where he had to abandon mid surgery because he felt that it would be counter productive. What I had in mind was to make the decision not to have PLND before surgery if he would agree with that but I don't think I could convince myself that SOMETHING would not have to be done regardless with a 20% chance of LN involvement. What I was thinking is a combination of prostatectomy and RT for LNs afterwards since it's nearly impossible to get them all anyway and more than likely will result in RT down the line anyway. Unfortunately, we are not the experts, at least I'm not, and I would have to yield to whatever he says in the end.

Tall_Allen
Tall_Allen in reply to EaNa

Unfortunately, it doesn't work that way.

EaNa
EaNa in reply to Tall_Allen

The nomogram for RP gives me a 50% chance of recurrence within 5 years whereas EBRT + Hormones for 6 months has 65-70% chance of cure but more limited salvage options if it fails. Putting side effects and logistics aside, that seems to be the math this decision comes down to.

Tall_Allen
Tall_Allen in reply to EaNa

It's my fault for throwing too much info at you all at once. Both SBRT and brachy boost therapy give you over 90% chance at a cure. Both have more salvage options than after surgery (which is only salvage IMRT). You have to make appointments with specialists in those therapies.

EaNa
EaNa in reply to Tall_Allen

Thank your for not giving up on me. :D A 90% chance of cure is certainly head turning, but in my case I wonder if that would still apply because my RO said that SBRT would not be recommended in my case as I'm a G7+ (unfavorable) with 20% chance of LN involvement. He also said that w/ IMRT + BT boost the chances were better than IMRT alone, did not put a probability on it just that it would be "somewhat better", I don't know if that would be worth the extra trouble. They don't want to commit to numbers, which I think is the most ethical thing to do.

I've done a little bit of risk assessment calculation and I come up with about 80-85% for RP + follow up IMRT (if it came to that). I can share the details of that calculation if you like.

You say that RT has "more" salvage options but here is what I've been told or have read so far: Salvage options for EBRT: 1) internal RT (this is the option most frequently used) + hormones because after a first round of RT it is not likely localized to the prostate only, 2) RP (difficult and not typically recommended), 3) Cryotherapy (hard to find experts and more than likely resulting in severe SEs). They are all difficult and with a higher chance of severe SEs because you're starting of with tissue that has already been damaged by RT. Please correct me if I'm wrong, you seem to know a lot about this.

I have to tell you that I've nearly convinced myself that a "cure" is impossible and am planning based on that. My pre-RP nomogram: 50% chance of recurrence within 5 yrs, 67% within 10 yrs. I think my decision will be to go for the first option that gives me salvage options ***with the least amount of possible complications or side effects*** (because I'm almost convinced I will face that anyway if I expect to live another 15-20 years). Would appreciate your thoughts about that.

Tall_Allen
Tall_Allen in reply to EaNa

Apparently, you have been misinformed. That is why I keep recommending you seek out specialists in those techniques. It is difficult for me to keep answering the same questions when you don't seem to care enough about your own well-being to read the articles I've already posted. I give up. Good luck.

EaNa
EaNa in reply to Tall_Allen

Sorry you feel that way. The information you have provided is very valuable, the problem is that medical reports and papers are a little too technical for me and so I have to digest what I can at my level. If I have been misinformed it would be helpful if you could point out where anything I stated is incorrect, I can take the ball from there. Unfortunately this all came about a year before I am Medicare eligible and so I have to work within the constraints of my insurance. I don't have the luxury of traveling all over the country for treatment, specially now with this damned virus. I am a Kaiser patient in CA and with them you get what they have, I have been talking to an urologist that is short on words and every time I ask about treatments that were not recommended by her she seems to lose her patience. It takes a couple of days when I ask something by email (the only way consultation is available unless you care to wait days or weeks for a phone consultation). Their RO is more forthcoming and answers my questions quickly. I was given an option of 2 robotic surgeons to discuss those kinds of questions and their response is less than ideal. I wasted a whole year thinking that the PSA would drop and now I feel pressured to make a quick decision before this spreads to my LNs or worse if it hasn't already. I have to take what is available. I sincerely apologize if I offended you, you seem to be very knowledgeable and I am getting responses from you faster than I am from the Drs available to me. It's just that it's all a bit too much to process in such little time, I wish I had another 6 mo but I feel my situation could get worse and may not be worth it. Finally, thank you for everything, you are a good person.

EaNa
EaNa in reply to EaNa

I just want to add that I've asked the RO about salvage options for EBRT, SBRT is not an option for me. I will post his response here when I get it.

Tall_Allen
Tall_Allen in reply to EaNa

The articles I posted are written for patients, not doctors. It's obvious that you haven't read any. I get tired of responding to the same questions from you when you can't be bothered to read the reply.

EaNa
EaNa in reply to Tall_Allen

I read all of the articles you provided and a few more that were linked from within them. I just want to thank you for that, they are very valuable.

EaNa
EaNa in reply to Tall_Allen

To add to my previous response, here is an example of the information that my earlier comments were based on:

foxchase.org/blog/2018-03-1...

A couple of excerpts:

"Local salvage therapy [after RT] comes in the form of surgery, a salvage prostatectomy. This can be a second chance at cure, but can be associated with increased risks and complications. Historically, salvage prostatectomy has been associated with major complication rates of 33-50 percent, 15 percent risk for rectal injury and incontinence rates of 58-65 percent following the procedure (Borland et al, Touma et al)."

"Nonetheless, salvage RP remains a technically demanding procedure and is still associated with higher than normal complications rates when compared to standard RP series."

Maybe those results are outdated and they can be done robotically these days, but how much would it change the statistics? Seems to me that is the only thing one could possibly argue about.

Justfor_
Justfor_ in reply to EaNa

If you can undertake the cost (2500-3000USD I read here) have a PSMA PET/CT. It will help you decide based on more concrete data than nomograms. It is the latest trend in Australia.

EaNa
EaNa in reply to Justfor_

I did have a PET/CT but my urologist (in consultation with 5 of her colleagues) insists RP is the best choice for me, but I'll study the alternatives until the day I'm under the scalpel I guess...

Justfor_
Justfor_ in reply to EaNa

What were the PET/CT findings? Did any LN light up. If it was contained within the prostate than RP seems your best option.

EaNa
EaNa in reply to Justfor_

Because my biopsy was a G7+ (unfavorable) and I had 80% of cores with at least G6 my urologist decided to do the PET/CT, a bone scan, and even chest X-rays and it all turned out negative. It is contained to the prostate as far as can be ascertained by these tests. How did you conclude that RP is my best option? I'm not questioning the validity of it, simply wondering how you arrived at it?

Justfor_
Justfor_ in reply to EaNa

Was it a PSMA PET/CT? I doubt it on the following grounds: 1) The chest x-ray is standard protocol for general cancer search, not prostate cancer, hence probably ordered by a GP. PSMA PET/CT at your PSA level of +10 has a sensitivity in the high nineties, close to 100. If, as you claim showed nothing, then you better also check the validity of your biopsy. The two test results are NOT compatible. This is why I doubt you had a PSMA scan and you are confusing it with the typical scan for all the rest kinds of cancer orderd along with the chest x-ray. Prostate cancer is a class of its own. Do you have the report or you were just told so?

EaNa
EaNa in reply to Justfor_

Ok, sorry about the confusion re. the chest X-ray, I should not even have mentioned it. That was ordered because the bone scan turned up a suspicious focus on one of my ribs, the chest X-ray determined it was related to lung scarring due to asbestos which I already knew about. The chest X-ray had nothing to do with the PC.

Justfor_
Justfor_ in reply to EaNa

What about the PET scan. Was it also for some other suspicion/cancer type?

EaNa
EaNa in reply to Justfor_

No, that was specifically for the PC. The report states: "No definite metastatic disease in the abdomen/pelvis is seen. Nonspecific sclerotic lesion within the sacrum which is favored to represent degenerative change. Consider nuclear medicine bone scan to evaluate for activity." The bone scan did not turn up anything either.

Justfor_
Justfor_ in reply to EaNa

What does it say about the prostate itself?

EaNa
EaNa in reply to Justfor_

I could not find anything specifically for the prostate in the report. I assume (possibly incorrectly) that this is covered by the biopsy. There is only a mention about the Lymph Nodes: "MESENTERY/LYMPH NODES: No suspicious lymph nodes." and other organs in the pelvis and abdomen which are all normal.

The specifics of the CT scan are:

** TECHNIQUE **:

CT images of the abdomen and pelvis acquired with 150 mL OMNIPAQUE 300 intravenous contrast.

CTDI: 9 mGy

DLP: 617 mGy-cm for the chest, abdomen and pelvis.

Which means absolutely nothing to me.

Justfor_
Justfor_ in reply to EaNa

Definitely NOT PSMA. Possibly FDG, good for very advanced metastatic cancer that you obviously don't have. You would have noticed if you had PSMA from the incurred expense , not covered by insurance, that you had have to pay out of pocket. In fact in the USA it is still regarded "experimental" and not used during preliminary staging. In Australia there is a clinical trial running currently with the aim of identifying how much the extra information gained prior to primary therapy for suspected high risk patients can affect treatment selection. I know you are unfavorable intermediate but GS 7b is just a tiny bit away from 8, which is classified as high-risk.

You can read this for further info:

pubmed.ncbi.nlm.nih.gov/322...

Tall_Allen
Tall_Allen in reply to Justfor_

Why is that?

Tall_Allen
Tall_Allen in reply to Justfor_

Nomograms are better than PSMA scans. PSMA scans can only detect tumors larger than 4 mm.

Tall_Allen
Tall_Allen in reply to EaNa

As I wrote, salvage RP is always a bad idea. Did you read the article about salvage after RT or didn't you?

EaNa
EaNa in reply to Tall_Allen

Yes, I read it, thank you. I see that there are many salvage options for primary RT as you had indicated. I am in an HMO (Kaiser) and the 3 options that they could provide are: further RT, Cryo, and Prostatectomy. My oncologist said that he would probably not recommend more RT, I am researching the other two. I'll tell you another concern I have w/ RT and it's not a minor one: I've had symptoms of Colitis all my adult life. I've had polyps removed and have been diagnosed with Diverticulosis which you already said is not a concern but just to add to the gravity of the circumstances, and I had a Hemorrhoidectomy just 2 years ago that has provided only partial relief. So my concern is that RT will aggravate those symptoms which I'm very tired of. If I had to choose between urinary incontinence and ED vs. aggravating Colon symptoms I would choose the former. The problem I have is that I don't know how much worse it could get. When I asked the RO he said that hemorrhoids might flare up but what I'd like to hear instead is something like "there's only a 2% chance of that" or a low probability but they either can't or don't like to quote figures. Do you have any opinion about this? If you know of any articles that could provide that sort of information I would appreciate it.

Tall_Allen
Tall_Allen in reply to EaNa

Consider getting different insurance, where you have more choices.

Here ya go:

prostatecancer.news/2016/08...

ncbi.nlm.nih.gov/pmc/articl...

EaNa
EaNa in reply to Tall_Allen

Thank you. Both very interesting articles. There are a few things in the second article that caught my eye, besides the recognized "low patient number" in both studies.

I'm trying to understand the reason for this statement: "Patients were also excluded if they were currently having an active flare of IBD. Only patients in remission or currently on medical maintenance therapy for IBD were included in the analysis." How many patients did they exclude? This seems very important in an analysis where the result is "low patient number." That exclusion seems to be somewhat preferential and biased, maybe even inappropriate unless there is definitive proof that the condition for which they were excluded was not as a consequence of the treatment. Maybe I'm missing something in my logic, I have to admit that my thinking is not entirely clear lately.

Table 3 is interesting and counter-intuitive (if we are to accept that results contradict widely accepted but possibly obsolete expectations). But then I also wonder if the result is not a consequence of the first limitation, "low patient number."

Also, in table 4, it's stated that there were no patients with baseline Proctitis and yet later on they only discuss the 17% of patients that resulted in G2 after RT as being significant. Maybe I don't understand the meaning of the word "baseline" as applied here but wouldn't all 100% of them be significant if there was no Proctitis in anyone before RT?

One thing seems to be evident from both studies, the newer RT technology (IMRT) is less toxic than the old 3D-CRT, and there are some interesting warnings, such as the need to be cautious with the use of RT soon after biopsies.

It's an interesting discussion.

Tall_Allen
Tall_Allen in reply to EaNa

The point is that their IBD was not currently active. The point of the study was to see if men who sometimes suffer from IBD could be safely treated when they were not suffering from a flare. Men suffering from an active flare should not be treated.

"Baseline" means before treatment. "Significant" means statistically significant

EaNa
EaNa in reply to Tall_Allen

Ah, I get it. Ok, in my case it's hard to say if I would be having a "flare" before or during a 2 month treatment, my condition is chronic. What do you make of my comment re. table 4?

Tall_Allen
Tall_Allen in reply to EaNa

"Baseline" means before treatment. "Significant" means statistically significant

EaNa
EaNa in reply to Tall_Allen

Sorry, I'll be a little more focused. What I meant was, isn't it significant that before treatment baseline was zero (0) proctitis but after treatment all of them had some level of it (as per table 4) ?

Tall_Allen
Tall_Allen in reply to EaNa

OIC - YOU think it is an important difference (I thought they were saying it wasn't statistically significant, which it isn't).

Note that what they say is: "All patients with G2 proctitis following radiation treatment received 3dCRT. All cases of grade 2 proctitis resolved within 5 years of treatment with 5-ASA therapy." Also, Grade 2 is annoying but not serious.

EaNa
EaNa in reply to Tall_Allen

I'm going full circle and reviewing earlier comments. In regards to your comment about the Yale equation: My RO said that he uses the same MSKCC nomogram that the Uro surgeon uses in order to decide if LNs should be radiated. He said that anything over 15% for LN involvement he would plan to radiate, mine is 21% by MSKCC. You say that the Yale equation would not call for it. Any suggestions on how to resolve this discrepancy?

Tall_Allen
Tall_Allen in reply to EaNa

You have a lot of positive cores, but they are almost all GS 6. It's more a matter of what you feel comfortable doing. The MSK nomogram is based on men having prostatectomy. Are you talking to a radiation oncologist or a urologist?

EaNa
EaNa in reply to Tall_Allen

Talking to both. The radiation oncologist is the one that explicitly mentioned the >15% MSK rule. I would have to defer to the experts on this one, I’m not educated enough about it to contradict. I’m just wondering about the discrepancy re. the Yale equation you mentioned.

Tall_Allen
Tall_Allen in reply to EaNa

As I said, the MSK nomogram gives more weight to the number of positive cores. In your case, almost all of the positive cores were GS6, so I doubt that the extra risk applies in your case.

EaNa
EaNa in reply to Tall_Allen

Do you know if there is any way (CT-scan, MRI, etc.) that could tell w/ reasonable certainty if there’s anything in the margins without a RP? From what I understand that would necessitate adjuvant therapy and I would choose RT. If that were the case it would make more sense to just go for RT from the start.

Tall_Allen
Tall_Allen in reply to EaNa

MRIs are notoriously bad at detecting extracapsular extension. Positive margins can occur because of EPE, but they can occur without it too. It is also possible to have EPE and negative margins. PSM depends on the surgeon's skill. It is a good idea to have a pathologist standing by to look at frozen sections to make sure that there are no PSMs. You can have a recurrence with or without PSMs.

The decision for surgery or radiation can only be made on the basis of clinical data, like I showed you.

EaNa
EaNa in reply to Tall_Allen

I understand but it doesn't make the decision any easier, it is simply too complicated to try to figure it out based on so many variables. If the only thing I have to decide by is the clinical data, then what is the right way to compare that data to the MKS nomogram. If it's not too much trouble could you indicate precisely what numbers do I compare? (I think I can figure it out but I would be more certain if you could point it out). My PRE-RP nomogram is as follows:

50% progression free after 5 years, 35% for 10 yrs.

Also, keeping in mind that the only alternatives I have for the time being are:

EBRT w/ or w/o ADT, VMAT, IMRT/IGRT

Thanks!

Tall_Allen
Tall_Allen in reply to EaNa

You want to know what your own situation will be. That is impossible unless you have a very good magical crystal ball. You only have those options if you stay with Kaiser. Why are you doing that when there are more curative options?

EaNa
EaNa in reply to Tall_Allen

I might have some other options near me (SF Bay area) but I'm not convinced that any other alternatives would be better. I may be wrong but the advantage of going with what is offered by an HMO is that it's proven, everything else may be "state of the art" but in my mind still under "Beta" evaluation. I have an appointment for surgery Dec. 1st (as placeholder) and I don't want to spend months doing more research on this or travel away from home, that is why my original question was RP or RT.

Tall_Allen
Tall_Allen in reply to EaNa

You are definitely wrong, as I showed you. Brachy boost therapy is not experimental - it has been done since the mid 1980s. SBRT for intermediate risk has been done since 2003. Both are available at UCSF. Joe Hsu for Brachy boost therapy, Alexander Gottschalk for SBRT. You don't have to do any more research or travel outside the SF Bay Area - I already provided you with the relevant research.

EaNa
EaNa in reply to Tall_Allen

Thanks for those names. I forgot to mention that BBT was another option at Kaiser. My uro said SBRT is not for me but I will ask again about the need for LN radiation. I have a video appt this PM with the RO. Thank you for everything!

Tall_Allen
Tall_Allen in reply to EaNa

Kaiser has limited experience with SBRT for intermediate risk. Maybe pay out of pocket for a phone consult with Gottschalk, who certainly knows a lot more about it.

EaNa
EaNa in reply to Tall_Allen

I'll ask. BTW, Kaiser just opened a Cancer Treatment Center only 8 miles from my home equipped with the latest technology available, probably even newer than UCSF.

Tall_Allen
Tall_Allen in reply to EaNa

All the technology in the world can't compensate for an RO is less experienced.

EaNa
EaNa in reply to Tall_Allen

Very true. I've done a career in technology and I know that practical experience coupled with state of the art knowledge is the best combination. The old folks have the experience, the new guys know state of the art. Kaiser has a team approach, so you get both.

I am 73 y.o. with a pre-Rx PSA of 20.4, G(4+3=7) Grade 3, Unfavourable Intermediate Risk category.

VMAT-RT Hypofractionnated 3 Gy X 20 Fx and ADT Lupron Depot 22.5 mg/12 weeks X 2 for 6 months.

Now my PSA=0.03 and my T <5.7684 ng/dL or <0.2 nmol/L.

EaNa
EaNa in reply to doc1947g

How long ago was your treatment and why did you decide for radiation?

doc1947g
doc1947g in reply to EaNa

My 20 VMAT-RTs were in June 2020. The main reason was that with researches I discover that very often the RP needs RT so you have to deal with secondary effects from both treatments. But I also had ADT Lupron Depot 22.5 mg/12 weeks X 2 because I was UIR, with the good response (PSA = 0.03 ug/L) my RO stopped it after 6 months.

The other reasons are my other health conditions: Lymphoma, Emphysema Gold Grade 3, Chronic Renal Insufficiency, and my age(in Québec, they do not do RP past 70). So with all these condition, anaesthesia would have been too risky for me. As you could see, my PSA is now as low as a post-RP.

EaNa
EaNa in reply to doc1947g

Yes, the frequent need for RT after RP has also been on my mind but my urologist is adamant that I should do RP first and I can't get any clear answers when I ask about RT first, her answer is "no one will want to do RP after RT." Based on my research so far I would agree with your decision for your case, mine is a bit more ambiguous. Sounds like your results have been very good and to have those numbers only a few months after RT is impressive, I wish you continued success!

doc1947g
doc1947g in reply to EaNa

Urologist are surgeon who like to cut and make money.

So they do their RP and you are still stuck to have salvage RT for what the RP could not extract.

RO also like money but they zap and the zapping cover more than the RP.

If RT does not work than you get another type of RT and ADT.

So whatever you choose, you still end up with RT.

I prefered not to have the BAD secondary effects of the RP and go directly to RT.

I had VMAT-RT which is VERY selective about the Organs At Risk and with the Hypofractionnated RT, 3 Gy in 20 Fx, which is the equivalent of 78 Gy conventionnal 39 Fx. Half the time for a more precise treatment. For me they had to irradiate a bigger volume due to my UIR G(4+3=7) Grade 3.

EaNa
EaNa in reply to doc1947g

"So they do their RP and you are still stuck to have salvage RT for what the RP could not extract." That is also on my mind, but in my case I am going through an HMO so I think that removes profit as one of their motives, they have to spend money on me either way, but then maybe I'm being naive about it, not sure. My thinking is that if minimizing costs was high on their priorities then they would be much more assertive about their recommendations, if they could minimize costs by directing me to do RT and nothing else they would. They are being extremely ambivalent about their recommendations, to the point of being frustrating, that's the reason I'm here looking for other's opinions, because they are basically telling me they have two ways of doing things and it's entirely up to me. Just about zero persuasion beyond that (extremely frustrating) with the only exception being that at least 5 of their urologists have looked at my case and all of them are recommending RP as first treatment. When I talk to the urologist, the radiation oncologist, the urologist surgeon they all know each other and are very careful not to contradict their colleagues so you get very little in the way of conflicts between them, of-course, what conflict could there possibly be when all of them tell you "Both RP and RT are good choices, you have to decide." I don't know if I should laugh or cry. :D

doc1947g
doc1947g in reply to EaNa

Like I was saying and they are saying, it is your choice.

The big problem is that they do not tell you ALL the effects of the different treatments. Talking with real peoples that went trought this treatments, you get the real informations.

And I repeat myself:

"So they do their RP and you are still stuck to have salvage RT for what the RP could not extract."

Read and you find that MOST of the peoples who had RP still end up to RT.

EaNa
EaNa in reply to doc1947g

Yes, I will continue to explore that. Since the pre-RP nomograms for my case only give me a 50% chance of non-recurrence that means there is a 50% chance I'll end up with RT as well. Thanks for the advice.

doc1947g
doc1947g in reply to EaNa

You know statically speaking, the average PCa will recidivist in a period of 5 years.

My brother-in-law had a RP in 2009 then a Salvage-RT in 2014 and another RT + ADT in 2019. And in 2009 I told him to get RT and he answered that he wanted his prostate out so he would not have to worry anymore. I was sad to discover that I was right.

doc1947g
doc1947g in reply to doc1947g

And all that happenned 11 years before I got the PCa and RT + ADT.

EaNa
EaNa in reply to doc1947g

That's what I'm afraid of. My wife has 2 sisters that are MDs. They are both recommending RP, in addition to my urologist who has also consulted with 5 of her colleagues, but the argument you make (which echoes my own way of thinking) won't let me take their advice so easily. If you know of any sources for statistical information that show long term results for RT vs. RP I would appreciate it.

doc1947g
doc1947g in reply to EaNa

Sorry, with my memory problems, I could not remember where I got this information. I did so nuch researchs starting at the end of January 2020 when I had my 12 cores biopsies about all the treatments. Even before the results I knew that it was cancer, the second one. My Lymphoma was diagnosted In July 2019 and the same I knew it was a cancer.

doc1947g
doc1947g in reply to EaNa

Do these 2 doctors are GP or specialist?

GP do not really know much about the treatments and their EFFECTS.

So personally I could not care about their opinions.

EaNa
EaNa in reply to doc1947g

Yes, one is a GP, the other is a Pediatrician. They are not specialists but their opinion is certainly better than my own, although by now I think I know enough to challenge some of their opinions a little more intelligently.

maley2711
maley2711 in reply to EaNa

If you do good dilient research...as you ae doing....yo'll likely know more than those Docs you mention. My female GP simply said that PCa diagnosis and treatment questions must be directed to the specialists...THAT was good response IMHO.

EaNa
EaNa in reply to maley2711

Yes, after all the research I think we can be better informed about the particulars than a GP. I'm not putting a lot of weight on their opinions but they probably have seen plenty of patients that have gone through surgery or radiation for this and other types of cancer and have seen the consequences afterwards. That's where their opinion counts.

EaNa
EaNa in reply to doc1947g

Also, I would wonder if your brother in law would not have ended up with salvage RT and everything else or worse even if he had gone the RT first route. It's so hard to tell but I also like to believe that statistics sort of improve your chances of picking the best option. Sort of...

doc1947g
doc1947g in reply to EaNa

Like I said, I do not know where the statistic are but I know that for me they irradiated 139.57 cc3 and my prostate was only 45.83 cc3, so they make sure that the microscopic cells of PCa were all irradiated. With that a big part of my pelvic area was zapped. Kill all the PCa cells.

Hope so but I may have a recidive due to my Grade 3 G(4+3=7) like yours.

So if you go to RT I guess you will not have the choice but to have ADT also as it is recommanded to UIR wich is Grade 3.

EaNa
EaNa in reply to doc1947g

I've been having an email discussion with my radiation oncologist all morning asking these same questions and here is his answer which I will include here in case anyone else is interested:

"The chance of recurrence with prostatectomy is higher at a shorter interval (5 years) because it does not incorporate therapy like anti-hormonal treatment. Every case has its nuances, and my estimate for success of 65-70% is based on looking at the bigger picture, but of course estimates can be incorrect, or are subject to questioning.

By the way there are reports from MSKCC and the Cleveland Clinic that show that the overall long-term control rates are similar between surgery and EBRT. As I also told you, PSAs are lower in men who have HDR plus EBRT compared to EBRT, but without a survival difference with 10 years follow-up."

So, if I interpret his comment correctly it seems that long term (> 10 yr) there is no advantage one way or another, you're still dealing with the possibility of recurrence either way. So it boils down to "what would you rather deal with in the short term." If you plan to live longer than 10 yrs your chances of having to deal with recurrence is the same regardless of which path you take first. I've asked the oncologist to confirm that. I'll post his reply next.

EaNa
EaNa in reply to EaNa

And here is his final comment:

"The reason to pick prostatectomy: to try and avoid anti-hormonal treatment, and the side effects of radiation - basically betting that all the cancer is in the prostate and/or seminal vesicles, the surgeon removes all the disease, and you never need any more treatment, including a treatment that itself can cause cancer (although that risk is low, it is not zero).

I think no matter what treatment someone like you picks (again, specific to your numbers) the chance of being alive at 10 years without actively being treated for the cancer is about the same. The logistics and side effects of the treatments could not be more different, though."

doc1947g
doc1947g in reply to EaNa

Yes but the 5 years recurence is higher with RP.

I knew that for the >10 years is the same for both RP and RT.

But with your G(4+3=7) you need hormonotherapy or your recidive will come faster.

EaNa
EaNa in reply to doc1947g

Will ask about that, was also in the back of my mind, because I haven't read much about RP + hormones. Thanks.

doc1947g
doc1947g in reply to EaNa

The problems with ADT is that nobody react the same.

I think I had a little bad effects but they decreased with time.

And no matter how bad they could have been I prefer to LIVE.

EaNa
EaNa in reply to doc1947g

I'm totally with you, living and longevity are my priorities as well. I'm glad as patients we have so much to chose from but the burden is pretty heavy for non-experts. I wish doctors would take the time needed to discuss these things to the depth necessary but most of it is left to us.

Justfor_
Justfor_ in reply to EaNa

In my case I started with a preferential attitude towards RT on the basis that if I ultimatelly had to be irradiated why not to do so right from the start. After 4 months of 10 hours per day (including weekends) reading and researching I opted for RP. This change was the outcome of my understanding that there is NO cure for PCa. One can only delay the PCa progression at the expence of a sequential surrender of his QoL. So, I took the calculated risk of living the rest of my life with incontinence (sex was not a factor) vs staling things down for min 3 years. At this writing, I am not aware whether I will land on the "winning" side, as I am still half-way into my road map, though the good news is that 6 months after RP continence stoped to be an issue.

EaNa
EaNa in reply to Justfor_

Can you clarify "staling for 3 years" and how bad was your incontinence at first? Even though I am still quite capable I don't think I would put sex life on the top of my list either, longevity would be on top and quality of life excluding sex if need be would be second.

Justfor_
Justfor_ in reply to EaNa

"Staling for 3 years" means not having to initiate the next step, whatever that may be, for the next 3 years, now squeezed to 1.5 years. I was part of the "unlucky" few % whos' urithra to bladder splice ( anastomosis) was leaky. As such, I had the wear the catheter for a whole month until it healed. Consequently, the spincter and the rest of the "hydraulics" went to sleep. Like in your toilet flush tank there is a "sensor" in our bladder that signals the brain when it is becoming full. With the catheter there is no functioning, the bladder gets smaller and the sensor takes a vacation. That is, the fist days-weeks after I got rid of the catheter I was spending most of my time in the bathroom. My problem was not with continence, one pad per day was the max I ever used, but with frequency-urgency and small urine volume. Gradually, the volume increased frequency-urgency subsided and this still keeps very-very finely improving even 1+ year later.

EaNa
EaNa in reply to Justfor_

Oh, sorry to hear you had that problem. Interesting that you mention it because that possibility for which I didn't even know the term has been on the back of my mind. How did you know that you had "anastomosis", what are the symptoms? I guess I could look it up but first hand experience is better. From the sounds of it things have improved and that's encouraging. Do you have any regrets about picking RP over RT after your experience? I can't believe the amount that I'm learning here, it's worth its weight in platinum!

Justfor_
Justfor_ in reply to EaNa

Anastomosis is the action of bridging the urethra to the bladder after the intermediating prostate has been resected. It is an integral part of the whole RP procedure. A leaky anastomosis is the bad thing as urine is leaking inside the body. Before catheter removal a cystography (X-raying of the bladder and the anastomosis while gradually pumping water + contrast upstream into the bladder) is performed in order to verify tightness. I had 3 of them. The first two failed, the third was successful. My case is statistically in the lower 5%. In medicine a 95% success rate is regarded a sure enough thing. So, you can find hospitals/urologists that after 10-15 days remove the catheter blindly (skipping cystography - their nurse will do it in their office). In such a case a leaking anastomosis will very soon make the patient seriously ill and the next thing is to try, with the aid of imaging, to restore the catheter. If this attempt fails, a repeat/repair surgery is in order.

No regret about picking RP first. Common sense dictates that if the success rate for a 5 years remission is say 50% for both RP and RT, cascading them will raise this to 75%.

I am a retired engineer and as another fellow engineer posted in another thread recently I put more credit to numbers and common sense than to any "experts' opinions". But we all know what Oscar Wilde said regarding common sense...

EaNa
EaNa in reply to Justfor_

Sounds like the cystography procedure should be routine, 95% is not a sure thing, specially if it can lead to such grave problems. Did you say that you had it done when they first tried to extract the catheter? I will have to ask my urologist about this!

Justfor_
Justfor_ in reply to EaNa

Of course. First attempt was at the 5th day after surgery. Failed. Then waited 10 days more, second attempt. Failed again. Waited a fortnight more and was successful, so the catheter was consequently removed. Five days is too early although it proved good enough for 4 other persons that had surgery the same day as I or the next day (4 days for them). In our group there was also another person that had failed the first cystography and was returning at 15 days after surgery. He was successful as well.

EaNa
EaNa in reply to Justfor_

Thanks, your comment is very valuable because I'll be able to ask about the procedure, maybe even insist on it before removing the catheter. I makes total sense.

Justfor_
Justfor_ in reply to EaNa

A short tutorial so you will be informed during your future discussion.

Anastomosis is a composite Greek word combining the preposition "ana" and the noun "stomosis". "Ana" is "re" in English, meaning do it again/anew. Ex. anagenisis = renaissance. The noun "stomosis" refers to actions related to an opening. Other nouns of the same family: stoma=mouth, stomio=outlet. So, anastomosis means re-work the opening/outlet. There is a big difference in diameters between the two pieces to be joined. The bladder opening is wider than the urethra and ideally a funnel-like smooth sloping transition should eventually be formed at this point. In the tightness test this shows up in the x-ray as an isosceles triangle with a very acute included angle. They x-ray in two orthogonal positions (patient laying on his back and on his side) so that two sectional views at right angle are obtained. The smoother this transition shows up in the x-rays, the lower the probability that after some months-years newly formed tissue can get attached there obstructing the urine flow.

Bottom line: An extra bonus of cystography is the assessment of the workmanship related to anastomosis (for the patient at least - if you get my drift).

EaNa
EaNa in reply to Justfor_

That will help. I will ask my potential surgeon about this, it seems very important and probably skipped normally as you say, armed with this knowledge I will insist they perform the procedure. Thanks!

doc1947g
doc1947g in reply to EaNa

BTW Before Rxs I had 2 pigeon eggs and 1 hot-hot sausage and now:

2 small grapes and 1 cocktail sausage.

Ha!!! Ha!!! Ha!!!

EaNa
EaNa in reply to doc1947g

Dry sausage, no sauce. Looking forward to it. :D

doc1947g
doc1947g in reply to EaNa

No sauce because of the lack of libido, but I still have a prostate so when the ADT effects are over, the sauce will come back as well my hot dog sausage.

For peoples who go for RP then there is no more sauce but you can still have orgasm after a while if they had nerves sparing (not always possible) otherwise it is Erection problems.

Like TA mentioned a few times, the nerves tolerate very well the RT.

EaNa
EaNa in reply to doc1947g

Never really cared much for the sauce but I would not want to give up orgasms. The surgeon said that he may not be able to spare much of the nerves in my case if at all, there's a 50/50 chance of maybe saving one side not the other but he did say that the nerves responsible for sensation are not involved so my expectation is that I would be able to have orgasms in any case but I think I will double and triple check because otherwise I would be very p'd off !!! :D

doc1947g
doc1947g in reply to EaNa

As far as I understand, these nerves are essential for the erections.

You will FELL your penis but you will not have erections.

With no nerves sparing, you will become impotent. You will have the libido but NO erection.

Think well for your choice.

I know that my problems with my "sausage" will disappear and the libido + the erections will come back. With no nerves sparing, the erection will not come back.

this thread may be helpful for you as well. healthunlocked.com/prostate...

EaNa
EaNa in reply to fluffyfur

Thanks for the link. It's fairly recent and lot's of good comments there.

doc1947g
doc1947g in reply to fluffyfur

I repeat myself but the more I search including the link that you give, the more I see peoples who choose the Radical Prostatectomy and STILL have to have Radio-Therapy.

They have ALL the bad Secondary effects from both.

And the results are the same vs life experance in 10 years.

My other advice is once you decide just move forward and try and not regret your decision. I say this all the time on this board, but people push their treatment plan if they had a good outcome. "Oh I had blah blah, it's the best" What is the best for them may or may not be the best for you. Keep that in mind.

EaNa
EaNa in reply to fluffyfur

Thanks for the link and advice. I'm keeping copies of all the posts and reasons for my decision, whatever it may be, so that I can look at it in the future and say "this is why I decided to go this route" and hopefully not regret it!

EaNa

I didn’t have the luxury of this site when I was considering the same question ( and many more after!,!). I chose exrt simply because I could adjust my schedule for treatments thus keep working. I have since learned that in many cases the outcomes are the same!!! Remember Urologist cut and Oncologist zap!!!! They don’t often play well together!!!

You’ll get more than enough info to make your decision here! Best of luck!

Jc

EaNa
EaNa in reply to Jimhoy

Thank you! I’m finding a lot of good info here. You can get all the theory from doctors and reading material but the real life stories and experience of others are just as valuable. Hope you’re doing well.

Hi EaNa

I met a number to chaps in the same situation in China.

Many from all over USA, UK, Netherlands, Australia, India, Canada.

All were looking for a non invasive solution.

They were all anti the options presented by their Oncologist.

If you are interested follow up on a Urologist named Dr Song based in Xiangtan.

EaNa
EaNa in reply to nycrunner

Thanks, I'll follow your lead.

ragnar2020
ragnar2020 in reply to EaNa

Dear EaNa,

My opinion is that once you are diagnosed with PCa you have it systemically, and anyone who tells you that their primary treatment will be curative is lying to you to earn a living doing their particular procedure. It does not matter what supporting documentation attempts to justify. Sorry.

Assume this with everyone with whom you consult. Remember surgery and radiation have SEs. If you chose surgery find a surgeon who does nothing else everyday and has been doing this for a long time. I chose robotically assisted surgery, and it worked for me. I would do it again.

Biochemical recurrence will occur eventually, and when it does, I will chose proton beam therapy (PBT)because the long term SEs of PBT are less than any other form of RT. If you decide to use RT for your primary treatment, research PBT at one of the PBT centers and do not dismiss it because a RT doc tells you their SEs are equal. They are not.

I will use tE2 (dermal estrogen) for ADT when BCR occurs in combination with PBT to try to extend my long term survival with the least amount of SEs for my QOL.

Many will argue and disagree with me and my plan, but who cares? We’re all on our own in the mysterious and dangerous world of capitalistic American medicine and we make

our own choices.

Good luck,

Jeff

Justfor_
Justfor_ in reply to ragnar2020

I totally agree with you Jeff.

EaNa
EaNa in reply to ragnar2020

Thanks for that advice, I've also been thinking along the lines of "this is a battle that will only end when it, or hopefully something else kills me first." I'm psyching myself up for that but I also want to remain as hopeful as I can. Hopefully by the time the recurrence takes place an even better solution will come along. I'm leaning towards robotic surgery as well. Congratulations on your results.

doc1947g
doc1947g in reply to EaNa

Comments about the two different radio-therapies from Johns Hopkins Medicine Home

Generally, he says, photon and proton therapy provide comparable results for prostate cancer, but photon therapy is a less expensive treatment.

I went through robotic prostatectomy recently with a very experienced surgeon and one of the best USA hospitals. Catheter was in place one week, incontinence was gone the week after except for minor leaks that never showed outwardly. Gleason score was a 10 but biopsy afterwards showed no sign of it metastasizing.

So I tread time and PSA test to see if anything comes back. I am 64 in great shape so I decided to get it out ASAP and can always do other radiation and drugs later if needed. Treatments keep getting better so if it comes back in 5-10, treatments will be better. BTW love life after 60 days is coming back pretty good.

Lastly, cancer can come to anyone any times, would love to see a study that can determine all the men who had PCa then had cancer again if it can be proven that it came from the original Prostate source?

TCells are showing promise so maybe 5 yrears from now we will all be in a better place?

EaNa
EaNa in reply to Murk

Congratulations on your story, it sounds about as good as can be expected, maybe even better and starting with G10 that is impressive! I'm also leaning towards robotic prostatectomy and your results are encouraging. I recently saw a documentary on PBS about a new gene splicing technique named CRISPR for immunotherapy and regenerative medicine that sounds really promising and might be applicable to all types of cancer and is hopefully available within 5 yrs. This year's Nobel Prize in Chemistry was for its development. Do you know if the surgeon that did your operation claims that kind of success regularly? If you could share more info it would be great as long as it's Ok with the rules of the site.

ragnar2020
ragnar2020 in reply to EaNa

Dear EaNa,

I had a five hour RARP at MGH done by Dr. Douglas Dahl. I walked out of MGH the next day with only Tylenol as a pain med. I had my urinary and fecal controls back in a couple of months. I already had ED from coronary artery disease, so that wasn’t expected to improve. Dahl removed twelve lymph nodes, and they tested negative for PCa, but the PCa was present in the margins in two places. So, the PCa will return eventually. I’m Gleason 9/10. I believe that removing the prostate will probably buy me a couple of years before BCR. Dr. Dahl did good work, and I recommend him. If you’re so inclined, read Dr. Anthony Horan book about PCa. It’s available on Amazon.

Jeff

EaNa
EaNa in reply to ragnar2020

Thank you for your input. Sounds like the RARP was not too bad and this is encouraging. I will take a look at that book you suggest. I have a friend that had EBRT with a Gleason 9 and unfortunately it came back but he is controlling it very well with hormonal therapy. I hope you stay well also.

EaNa
EaNa in reply to ragnar2020

I read the introduction to the book by Dr. Horan and it sounds like an interesting read but now I have to ask you why did you finally decide for RARP given his suggestion which I've pasted here from a book review:

"Without clear evidence of a survival benefit conferred by radical treatments, and with obvious morbidity, Dr Horan argues that the risks outweigh the benefits. He makes an exception for minimally morbid, nerve-sparing cryotherapy, which he uses to debulk the primary tumour and answer his patients’ need to do something about their cancer. Where further treatment is required, he favours systemic treatments such as intermittent androgen blockade or chemotherapy."

This is a good question for my urologist, I hope she's read it. :D

Murk
Murk in reply to EaNa

Yeah but it really depends on the patient and their status. Being 64 in great shape helped me but the key factor was my lymph nodes were clear in the post surgery biopsy. He does alot of them, very experienced and into his work, while not being on the down side of his career heading to retirement. He just got promoted for recognition of his accomplishments at JHMI.

hopkinsmedicine.org/profile...

EaNa
EaNa in reply to Murk

Thank you very much for that link, I'll check it out. Your results are excellent, I hope you continue to do well.

It's nice reading the replies you are getting with plenty of info presented from all for you to digest and honestly I'm glad I had it so easy.

I'm a GL10 from back in 2015. 70yo now and planning on a 200 mile bicycle ride this Saturday under the Full Moon and into the sunny morning. I had a Hemi-Cryo of right half for the GL10 and local cryo for the GL6 in left half PLUS my doctor's 3 DRUG cocktail immuno-injection -- 2 of the drugs having just receive FDA Approval Opdivo + Yervoy and am also receiving TRT since I began treatment with a bi-lateral Orchiectomy. Making sure I enjoy life to whatever "fullest extent" I have left.

I agree with you, this site has been a boon, learning a lot here. Sounds like your treatment was a success and examples like yours are very encouraging. I still have CT available down the road if needed although I've been wondering about it as a first option and will ask my urologist, thanks!

When I was diagnosed in March the Urologist and Surgeon said to live to 85 surgery was the only answer (I don’t think any man in my family has ever made it to 85). I’m currently 55. I asked how long I had to choose since I had already been reading up. The consensus was within 6 months. So I did lots of research. I spoke to many Doctors and people who have been thru it also. I even had a consultation with Dr Busch about Tulsa. He said since my tumor was up against the capsule he said Radiation might be best. He agreed with me that surgery would still probably have me doing radiation later so I just went straight to it. He wasn’t to keen on surgery. At 6 months I had Cyberknife/SBRT at UCSF. But even before I did that I met a surgeon at UCSF as well and he said surgery was the only way, but when I spoke to the RO there I felt it was the way to go. Weird thing I spoke to my urologist that I hadn’t spoke to since I was diagnosed a few days ago. I said I know you recommended surgery but I did SBRT. He said you did the right thing, as long as you had some kind of treatment. In the end we are all on our own path that part became very clear early on.

EaNa
EaNa in reply to ODave

I'm learning new things every day. How were you able to determine that it was up against the capsule without the surgery? I ask because I've had the biopsy, a CT scan, bone scan and even X-rays and I was not told anything definitive about the extent of it.

ODave
ODave in reply to EaNa

In the MRI before the biopsy it showed a Pirads 5 tumor 1.9 cm up against the capsule. They also mentioned EPE extra prosthetic extension. I made copies of my MRI cd and sent them to 5 different places for a 2nd look. None could say for sure if it was present or not. One Radiologist said if he can’t measure it he doesn’t count it. I also had a bone scan in April it was clean at the time. I go back for PSA in late December and maybe another scan to see where things are at.

EaNa
EaNa in reply to ODave

Sounds like MRI can provide more details than a CT scan. I've been hearing about the advantages of SBRT although I don't fully understand it because my RO said it's not a good option for me as I'm in a higher risk group and he would want to treat the lymph nodes as well. Did you have any lymph node treatment with SBRT or other? What was your risk group if you don't mind me asking?

ragnar2020
ragnar2020 in reply to EaNa

Hi EaNa,

I’m 73 years old with five cardiac blocked arteries and one heart attack behind me and ED, so I opted for the RARP at MGH to avoid the SEs of SBRT and preserve QE as long as possible.

I have two close personal friends who used Dr. Dahl for their RARP, and they had similar positive surgery results. Both guys are older than I am. Dahl did my MRI guided eight core biopsy and determined that my prostate was probably 80% full of PCa. After surgery, pathology confirmed Dahl’s opinion.

Further in Horan’s book you’ll read that even though he is opposed to RARP, he agrees that RARP will probably add a couple of years to a guy’s LTS. I had my RARP prior to learning about PBT from guys on this forum and through further research.

Had I learned the benefits of PBT prior to the RARP, I probably would have used PBT for my primary treatment option. No one at either B&W nor MGH offered PBT for primary treatment. They still do not. It is a serious flaw in their treatment options, and you’ll soon discover that information about PBT is not readily forthcoming from the various centers of excellence around the country. Go directly to a few of the 39 PBT centers for primary research about PBT. Search this forum for others who have used it for their primary treatment.

Subsequently as I have been preparing for BCR, I’ve had telemed conferences with two RO at both UFHPBI in Jacksonville, FL and Dr. Carl Rossi at California PB Center in San Diego, CA. Both ROs agreed that they can use PBT to treat the prostate when a tumor is close to the surrounding organs.

Watch Rossi’s YouTube presentations. He’s treated 10,000 guys for PCa. He is definitely worth consulting before you decide what primary therapy to have done. If you wish, private message me and I’ll connect with you personally by telephone and email and we can discuss this further.

Jeff

EaNa
EaNa in reply to ragnar2020

Thanks for the offer to discuss this with me by phone, I really appreciate it and will bookmark your reply in case I decide to explore PBT further. I haven't researched that at all because I don't have that available close to where I live and I don't know if I would want to go far from my home for therapy. I guess I would if it seemed nearly miraculous and by the way you describe it it might be nearly so but I have to do more research before I bother you with it. Can you tell me if PBT is appropriate for PLN treatement as well? I'm in the intermediate unfavorable risk group (high 7) and according to the nomograms I have ~ 20% probability of LN involvement and would need to treat those as well. I'll check those videos you mention.

ODave
ODave in reply to EaNa

I was 3+4-7 in I think 4 cores and 3+3 in several others all on one side of the prostate. The 7 was high volume. They didn’t do any other treatment or lymph nodes but they did 2-3 mm around the prostate as well in case.

ODave
ODave in reply to ODave

Actually I forgot to mention when I 1st got diagnosed I was on this forum and Inspire soaking up as much info as possible and asking questions. After I decided I wasn’t going for surgery I was looking at Tulsa or Proton. I saw several posts from guys talking about Cyberknife and how it only took like a week. My initial thought was it sounded like snake oil lol so I put it out of my mind. But the more I read and talked to RO’s I decided to look at it and felt it was gonna be better than Proton for me.

EaNa
EaNa in reply to ODave

Yes, I have a friend that was intermediate favorable (low 7) and he also went for EBRT + HT and 11 years after he is still PSA undetectable. Unfortunately, I'm a high 7 and I have ~21% probable lymph node involvement so SBRT would not be appropriate for me. I'm not sure if Proton therapy would be either, I haven't researched that because it's not available where I live. You're lucky you found out you had PC before it jumped into the unfavorable range.

ODave
ODave in reply to EaNa

Yep I read your initial findings 4+3 Can you do SBRT for the prostate and EBRT for the nodes?

The RO from Loma Linda when he was explaining Proton (he also wanted to add ADT for 3 months after treatment) he said Proton was like a California summer rain, a light sprinkle every day (his words) that’s why it was over many weeks. When I spoke to RO’s elsewhere about SBRT they said it was strong like a hammer coming down. That might sound kinda radical but I thought to myself would I rather have a light sprinkle or hammer this tumor. So the choice was made.

EaNa
EaNa in reply to ODave

I don't know about SBRT for one and EBRT for the other, I will ask. Also, there may be a complication with hormones which in my case would be needed. Thanks for the suggestion!

fluffyfur
fluffyfur in reply to EaNa

My husband had the EPE but it was not found until he was actually in surgery. He had an MRI prior, at one of the best cancer hospitals in the world, and they still didn't see it. EPE's are hard to spot whether on an MRI or CT scan. I think Allen wrote a blog post about this.

EaNa
EaNa in reply to fluffyfur

Thank you! I”ll look into EPE but now that I think about it it makes sense that anything microscopic would be hard to find.

EaNa
EaNa in reply to fluffyfur

Can I ask if yout husband had to do adjuvant treatment after the RP, and if so what did he choose?

fluffyfur
fluffyfur in reply to EaNa

He did, but not immediately. He had a G7, (3+4) and immediately after surgery his PSA fell to 0. We then got the news about the extension and positive surgical margins. Approximately 9 months after surgery his PSA climbed to .2 and at that time he opted for 35 sessions of VMAT radiation to the prostate bed only. He did not take any ADT. Also he had an extensive lymph node dissection during his surgery so therefore he did not get any nodes radiated.

I understand how difficult this decision is EaNa. I do think that there are pros and cons of EVERY choice. My husband liked having the definitive surgical pathology after his surgery but that doesn't matter to everyone.

Feel free to PM with any other questions you may have. Best of luck hun.

Hello EaNa,

In your decision tree run-up to making your treatment decision for primary care of your PCa, try to use a telemed conference with Rossi at CA PBT Ctr so you can ask your treatment questions directly to him. He’s an RO whose speciality is PCa treatment using his PBT equipment. That is who should counsel you about PBT vs other forms of RT.

I’ve watched guys in your position consider options, and PBT has its own restrictions. Men on Medicare have no financial issues involving paying for the treatments, but men using other insurances find resistance because PBT is more costly than other forms of RT and each insurer has negotiated their own deal with the PBT facilities. Also, because of the distances involved in reaching PBT facilities, often men are reluctant to commit to being away from their home for a couple of months. Older retired guys can usually make that commitment. I would, and Medicare would pay for the PBT.

My advice is to talk directly to the RO at a PBT center for information. Competing RO at other RT centers are selling what they have to offer, and their guidance is often tainted by their professional training and their own desire not to lose a paying customer. Remember, this is the American medical system way of fee for services. You have to sort through the info yourself.

Jeff

EaNa
EaNa in reply to ragnar2020

Thank you for the advice. I'll check into it.

ODave
ODave in reply to ragnar2020

Jeff is right when I met with Loma Linda for Proton my insurance wouldn’t cover it. Funny I pay over 2k a month for Blue Shield and they did nothing for me. If I have been on MediCare it would have been covered. Also the distance is true too. I’m in California and self employed so I had an office close to SF and in LA area so I could have done either, but a lot of guys aren’t that lucky to be so close.

Here in Quebec, our medicare would pay for PBT only if ordered by an RO and my RO felt that the VMAT-RT Hypofractionnated 60 Gy would be as good and that he orders it mainly for children or for brain tumors,

Tomorrow I have my R/V in person with my urologist.

BTW have you made up your mind?

EaNa
EaNa in reply to doc1947g

I've also read that EBRT is as good as PBT, some people talk up the benefits of PBT but I'm not convinced. I'm leaning towards Robotic RP and I have already scheduled it for early Dec. but I'm going to keep my options open until the last day. It boils down to EBRT or RP. Some days I think I should do EBRT other days I'm back on RP. This is probably the most difficult decision I've had to face in my life. Shouldn't be so hard but it is.

doc1947g
doc1947g in reply to EaNa

It is a hard decision and having different options make it hard.

Since you do not seem to have other health problems, the RRP can be a good choice. But if they can not spare your nerves, then tough luck: libido yes but erections no.

With EBRT, you do not have that situation. Me I am starting some exercises to get my erections back. I met a beautiful woman and ...

So I am happy with the VMAT which did not kill my nerves so ...

Good luck and hope you make the GOOD choice and be happy with it.

Good evening.

EaNa
EaNa in reply to doc1947g

Now that you mention that I'll have to look into VMAT, don't know if that's available to me or even recommended. Thank you for your comments. I hope you stay well.

doc1947g
doc1947g in reply to EaNa

As to be recommended, you are a G(4+3=7) Grade 3 if I remember well then you are like me.

And the VMAT-RT was exactly what I got with ADT 6 months. And a Post-RT PSA of 0.03 ug/L which is the equivalent of a Post-RP PSA but without the surgery.

Good decision time and a good day.

doc1947g
doc1947g in reply to doc1947g

Just came back from my Urologist: Results = Cystoscopy in 4 to 6 weeks.

He thinks that my burning sensation may be due to RT but he wants to be sure it is not my Chronic Renal Insuffisancy that starts to act.So I am getting my next month with a vaccination then a cystoscopy and a bunch of blood tests.

EaNa
EaNa in reply to doc1947g

I found out that VMAT is available for me with my HMO. I still don't understand what is different about VMAT vs. IMRT. Did you have to treat LNs also and are they able to do that with VMAT? Did you have urinary symptoms before your treatment? When I asked my URO why she recommends RP over RT she said that any urinary symptoms will only get worse with RT. My only urinary symptom is hesitancy which has been very manageable and I don't take anything for it.

doc1947g
doc1947g in reply to EaNa

BTW Urologist usualy prefer the surgery, it is their job.

Before my diagnostic, I NEVER had any symptome of prostate problems or urinary problems. VMAT-RT is faster than IMRT and more precise, If needed, they can also irradiate LNs like they dit to me.

The whole treatment including positionning is less than 5 minutes and the VMAT with Conic Cat Scan take 2 minutes. The Conic Cat Scan is to check exactly where the prostate is so they do not zap at the wrong place.

Like I said before, my prostate was 45.83 cc and they irradiated 139.57 cc which included my 2 Seminal Vesicles and the pelvic LNs. For my case they did not insert special seeds to track the prostate due to the quick CT Scan.

The way it worked for me is I had a pre-RT Planning Scan on May 27 th 2020 and they started my VMAT on June 8th 2020 for 20 days (Monday to Friday) and in Quebec we had 2 statuory holidays in that period so the RT finished on July 7th 2020.

Originally, my ADT was supposed to start on April 4th 2020 (because the ADT help reducing the size of the prostate so you irradiate a smaller volume) but the nurse screw up with my Eligard 45 mg/24 weeks so on May 31st I was restarted on Lupron Depot 22.5 mg/12 weeks X 2 because of the screwup and my Testosterone was UP instead of DOWN.

And now PSA = 0.03 µg/L and T = <5.7684 ng/dL. Just the way my RO and my Urologist want.

doc1947g
doc1947g in reply to doc1947g

Ask your RO about this questions.

I was lucky because I was able to get a copy (7 pages) of my VMAT-RT Planning.

Since I have a very good knowledge of medecine, I was able to understand that planning. Mind you, I got it after my VMAT was finished.

And I was even able to discussed about it. That how I discovered that even if it was only the biopsies of the Right lobe that were positive, with the special planning Scan they discovered that both lobes had tumors of an agressive PCa.

But I am over that now.

I wish that you make the GOOD choice like I did.

Good Luck.

Have you made up your mind?

EaNa
EaNa in reply to doc1947g

:D I'm just about to add another option to my original question: Russian roulette with 5 bullets in the cylinder. :D :D :D

doc1947g
doc1947g in reply to EaNa

What option?

doc1947g
doc1947g in reply to EaNa

It is probably called Chinese Roulette !!!

EaNa
EaNa in reply to doc1947g

RP as a placeholder on 12/1/20 unless I change my mind for one of the other two options before that. I have an appt. to suck my RO's brain through a straw this afternoon, we'll see...

doc1947g
doc1947g in reply to EaNa

Hope they sparre your nerves, otherwise ...

EaNa
EaNa in reply to doc1947g

Yes, that's a big concern, one of the many reasons why I'm not 100% convinced but the good news is that there are other options even if it came to that, erectile performance is not on the bottom of the list but not on top either. Maximizing longevity is on the very top.

doc1947g
doc1947g in reply to EaNa

With VMAT-RT there is no problems for the erectile nerves.

I am still getting morning woodies. Even with ADT.

Hi EaNa - just joined this forum - I have a somewhat similar diagnosis as you (see my profile for the short summary) - but I have been "researching" for the last year and trying alternative approaches. I have gone thru much of the anguish you are experiencing already with RP vs RT. Currently two comments about that: first I would recommend taking a look at the PCRI youtube videos, mostly with Dr. Mark Scholz, here is a recent one addressing this question: youtu.be/Pya8N78bR7s. Secondly after going back and forth, currently I would tend to pick RT over RP, for all the reasons discussed here and summarized by Scholz. Although it is obviously a very personal choice. Nonetheless, I think there are likely under-reported side effects from RP - many have "stress incontinence", and most likely the ED results are distorted e.g. worse than reported (let's face it we all like to uh bend the truth with respect to sexual function sometimes).

But before that, I would suggest the following (apologies in case you did this, I could not read ALL the posts here):

- get a second read on your biopsy. Johns Hopkins may be the leading house for this, and I am sure there are other good ones in the Bay Area. You only had one core which was 7+. What percent was 4 vs. 3? There are increasing convincing voices (e.g. Mark Scholz and others, based on studies) that "real" 3+3 is actually NOT cancer, e.g. does not metastasize. This is obviously not mainstream yet. But a second read could decrease - or increase - your Gleason score. Better to know now.

- get the PSMA PET/CT, either via trial like Tall_Allen nicely pointed out, or shell out the 3k$ (insurance should pay e.g. stupid not too, but that is another discussion). It will be worth it imho. If you have ANY signs of mets, RP is out of the picture.

- change your urologist. Or at least get a second (or third) opinion. Full respect for their practice, but as many here point out, they have a business to run. Same holds for the RO (and they make more $$$ per patient than surgeons). You will live with the results, not them. Keep asking questions.

- Do not stress about rushing to decide. Death seems to be a side effect of life, so yes we need to deal with that (and this sharpens the focus, no?), and have fun in the meantime.

I have also done a few not-fully mainstream diagnostics. One is the maintrac CTC (Labor Pachmann in Germany) which gives an indication of circulating tumor cells. There are also options in the U.S. such as CellSearch, but I am not familiar with their usefulness. I would consider doing this after the PSMA PET/CT, depending on the results.

I also did a DNA karyometry of my biopsy (I did a four core, MRI-guided biopsy which showed Gleason 3+4, 10 to 20% 4 in the cores), which showed a peridiploid DNA distribution, giving it their "best" grade 1 (1 is least likely to progress, 4 is worst, e.g. highly mutated DNA and likely very aggressive). This was done at the pathology department in Düren, Germany, research pioneered by Dr. Alfred Böcking. This may ultimately be better than the rather unreliable Gleason scoring system.

In my case, because I am "young" (59), my karyometry test was good, no confirmed mets, I have been delaying and looking into other options. That is another thread. Also - I have the "luxury" of being able to work on this e.g. my day job is flexible.

And last note: start improving your health and well-being. Lose weight, consider keto or veggie-focused diets, any exercise is good. Assume you don't smoke. There are a bunch of metabolic approaches under consideration (some discussed in this group, that is how I found it, e.g. Costello's work on zinc + ionophore + prolactin inhibitor - currently more for advanced hormone-resistant cases).

best, Kurt

EaNa
EaNa in reply to drmoose

Hello Kurt. Thank you very much for the very useful link to the PCRI pages, I'm taking a look at that now, and thanks for all the other great advice you give as well. I had no knowledge of DNA karyometry you mention and will look into it.

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