questions about what to expect with RP and HT

So sorry to hear of your situation! Frankly it's not much different from mine except for his age which is a bummer. One could ask why surgery is recommended if PCa is already outside the capsule? You should get another opinion. As far as being on HT forever that's a terrible diagnosis. I'll let others opine. Good luck and God Bless!
Bob

Take a breath, get a real face to face second opinion, maybe even a third, a radiation oncologist perhaps. Urologists are surgeons, and surgery is their specialty. Don't rush to treatment, this is his life, and quality of life, he needs to carefully consider all the options. There are no do overs. I am sure others will chime in.
Good luck,
Kris

Sophie,

You need to look at other options besides surgery.

Do not rush into any treatment w/o exploring all options out there. Sounds like he would be a good candidate for a the trifecta of hormone therapy, IMRT and seeds.

Sophie,

"trying to live in the present and appreciate .. life", is GOOD!

but, as Fairwind says, "hit it as hard as you can" ... and as for sex, there is always the "new normal".

My wife and I were rushed into a decision and 4 weeks later I had my RRP. Try and get as much information as you can before making a decision.

All the best!
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Tall Allen said...
Sophie-

It's VERY controversial to have surgery when you know it's already outside the capsule (cT3), and I am using the word "controversial" politely.

To put someone through surgery knowing in advance that it will have to be followed by radiation ought to be banned, imho.

I agree whole heartedly.
.

Hello Sophie,

Welcome to the forum. So sorry you find yourself in a situation where you need us but glad you found us.

I am a surgery guy. Here on the forum I often tend to follow Tall Allen around other-handing him when he is a bit too dismissive of the surgery options. But this time I am pretty much with him. Your husband should look at other options before he commits to surgery.

If your husband has the same combination of treatments as I received -- robotic surgery followed by adjuvant radiation and at least a year and a half of hormone therapy -- then his odds of controlling his cancer are in the same ballpark as the ones that Tall Allen quoted for his combination of two kinds of radiation treatments. But the probability of side effects is much higher if he goes that route. With the sort of cancer your husband has any sufficiently aggressive course of treatment is going to take a bite out of him. With the surgeon already talking about "cutting wide" you know that surgery is going to take a big bite. He should talk to some more doctors to see if he can't do better.

Unfortunately, hormone therapy (aka androgen deprivation therapy, ADT) will be a part of his program no matter which way he goes. Even through my surgery and radiation has left me impotent and incontinent it's the hormones that bug me the most. There are treatments that can correct or mitigate those problems, but for the primary effect of androgen deprivation there isn't much that can be done.

That said, there are a few rays of hope. First, of course, is that you will have him around for a long, long time. If he has his cancer treated by any of the methods we are discussing here his odds of survival for decades are pretty good.

Second, I also think the surgeon's talk of hormones for the rest of his life is slightly too dire. He will almost certainly need to do a period of ADT along with his treatment of choice. The hormones make both surgery and radiation more effective for high-risk men. I did two years and am currently waiting impatiently for my last shot to wear off (a process that can take up to a year). At some point after his treatment, if his PSA score behaves then he will be able to take an ADT "vacation" which will last until such time, if ever, as a rising PSA suggests that he needs to resume the ADT to keep a lid on it.

Third, some guys manage to just power through the ADT and continue their sex lives. ADT takes away most of a man's libido but the physical intimacy is still pleasant. It also causes problems with erectile function which often don't respond well to oral ED drugs. But injections work fine most of the time. If he does go ahead with surgery he will want to do some sort of rehabilitative activities. A man needs to get several erections a week to keep the tissues from atrophy. (Currently, even if he doesn't have sex that often he will get several erections a night during the periods of REM sleep.) Pharmaceuticaliy assisted sex can kill two birds with one stone -- keeping the couple intimate and helping the man stay anatomically correct.

Again, welcome to the forum. Many of us here have been where your husband is now. It sucks but he will get past it, as will you. Things will never be the same but they will get better. Hang in there.

Sophie,
I too had surgery and have no regrets. But my pc was thought to be confined (verified). I agree completely with Tall Allen, if it has escaped the capsule as they suspect, then I would seriously consider radiation/hrt as primary treatment. Surgery (non nerve sparing) may work, but will likely cause permanent ED. Radiation will likely be needed anyway, and is less likely to cause ED (at least for awhile).

There are no do overs...be sure to follow what is best for you and yours.

Thank you for all your replies! I am about to call the doctor and ask the benefits of surgery vs IMRT Brachy and ADT

My understanding of the reasons to operate were, 1st, it has the best survival statistics, but she would close him, and not go ahead if it had spread to nearby organs.

2nd, husband has a very weak urinary flow caused by the cancer pressing on the urethra, which would be solved with the surgery, but would be compounded by radiation.

3rd, if he starts with radiation and the cancer comes back, the surgery option would be off the table.

Does this sound right?

Any other suggestions of what I should ask the doctor?

Hi Sophie,

"My understanding of the reasons to operate were, 1st, it has the best survival statistics, but she would close him, and not go ahead if it had spread to nearby organs."

As I said in my earlier post, that is definitely not the case. The stats are MUCH better for radiation vs surgery monotherapy in cases like his. For example, the surgeons at Memorial Sloan Kettering, which has two of the finest surgeons in the world, had a 10 yr recurrence rate of 50% among men with stage T3:

Long-Term Outcome Following Radical Prostatectomy in Men With Clinical Stage T3 Prostate Cancer

But perhaps your surgeon believes she can do better than Eastham and Scardino. Ask her what her numbers are over the last 10 years for recurrence after surgery among cT3 men. Then ask the radiation oncologist. Don't ask the surgeon to be expert on a field outside of her expertise - few are. The reason why radiation has such better stats is because it treats an area outside of the prostate, including the prostate bed, seminal vesicles and, in his case, pelvic lymph nodes.

Also ask her what she means by "nearby organs." The first place the cancer typically travels to is the prostate bed. She can't know if it has spread there until after she removes the prostate. She also can't know whether she will have to cut into the bladder neck and the external urinary sphincter until after she starts cutting.

If you're serious about proceeding with surgery, at least ask for a 3T MRI so you have a better idea in advance of where she will have to cut.

"2nd, husband has a very weak urinary flow caused by the cancer pressing on the urethra, which would be solved with the surgery, but would be compounded by radiation."

That is absolutely true that urinary retention is not likely to be a problem after surgery. With radiation, there is often initial local inflammation which may further narrow the urethra, restricting urine flow for a while. However, they will undoubtedly start him with 2 months of ADT before radiation, which will reduce his prostate and aid urine flow. The ADT will be continued through his treatment and for 18 months afterwards. That may prevent retention problems, or they may occur in spite of that. If it gets very bad, he may require a laser TURP. With surgery, and her wide-cut into the nerves that also control the urinary sphincter, he will almost certainly suffer incontinence for a long while, and if they have to cut into the sphincters, permanently. There are artificial urinary sphincters that can be surgically implanted. If he has to have adjuvant radiation after surgery, which seems likely, his urinary problems will be compounded.

"3rd, if he starts with radiation and the cancer comes back, the surgery option would be off the table."


I agree that surgery is usually a poor idea after radiation. Incidentally, the aforementioned Dr. Eastham is one of the few who get good results with that - but that is rare. If there is a local recurrence after combo radiation, the best salvage is more radiation, not surgery. They can use SBRT or brachytherapy to spot treat the recurrence detected with a biopsy.

However, about 80% of recurrences after such radiation are not local. And because the recurrence rate after combo radiation is so low, the chance that he will need any kind of salvage is quite low.

If he has a distant recurrence with either radiation or surgery, he will be treated (at some point) with hormone therapy.

- Allen

"3rd, if he starts with radiation and the cancer comes back, the surgery option would be off the table."

I am not experienced enough to offer an opinion, but I will say my urologist said this exact same thing and I'm a "low-intermediate".  I read someone say somewhere (maybe here) that this is the best sales line used for surgery.

Again, I don't know, but I do think that is a pretty common phrase surgeons use.

That might be the route to go, but I'd meet with a radiotion oncologist.  My second opinion meeting was far, far less stressful for me and I actually took my wife out to celebrate last night after the doctors meeting because I felt so much better.

 

Sophie, kindly continue to avert your eyes, as this may get messy (just kidding)

PDA,
Neither of the studies you cite are relevant here because they are among men who had a high risk diagnosis based on pathology after RP. I would argue that a clinical diagnosis of cT3 is much more serious than a pathological finding of pT3 because the extracapsular extension is already clinically apparent on a DRE (in this case). I think many surgeons would not operate if they knew in advance that the stage was T3; however, it sometimes happens that they operate thinking it is T2, but later learn that it was in fact T3. So if there is a pathology finding a small positive surgical margin, and perhaps a lower grade tumor (in the Japanese study two-thirds were GS≤7; 47% in SWOG S2291), surgery +ADT may have excellent results. That is not the case here.

I will leave for another time the issue of whether a cT3a revealed only by CDUS or mpMRI is equal in risk to a cT3a revealed by DRE and/or ordinary US or MRI. (My guess would be it's not.)

- Allen

Sophie, some men are simply not a candidate for Brachy + IMRT...Their prostates are just too large and it would take far too many seeds to be effective..Today, "opening him up to take a look" is not the best method for determining how far the cancer has spread. There are advanced imaging techniques available that should be able to spot the degree of spread before his surgery.. This surgeon you are consulting with...How many Prostatectomies has she performed? How old is she? Where was she educated? I'm getting some bad vibes about some of her statements...

Make an appointment to see a Medical Oncologist. Ask this question. "If surgery only has a 40-50% chance of curing the cancer, is it still worth the risk and side-effects of doing it? Does debulking the tumor make the radiation that is sure to follow more likely to succeed? Really do your homework on this..Here is another possibility..Go on ADT NOW. This will shrink the tumor(s) and the prostate and make either surgery or radiation more effective. Some surgeons feel this makes surgery more difficult but others don't seem to mind..In any case, ask about it..

While I have great respect for Tall Allen, he is not a doctor and neither am I or anyone else on this forum...Keep that in mind while reading the material posted here..Best of luck to you..