And he is off to the races ADT and RT

After Lupron and radiation, I had 99% ED and I don't think that's going to improve.

up4thefight said...
...It seems like on this forum all of the RT guys, which seems to be the majority, make it sound like they have little to no SE from RT. In fact, I feel like there is a tinge of shaming if someone is leaning towards RALP. Of course, most people would have a natural bias towards the treatment they chose....

It's always a back-and-forth here. Sometimes it does seem the conversation sounds a little challenging, and that's probably unfortunate. I've been here for over 4 years now, and have seen this cycle play out repeatedly. Oftentimes, someone arrives here fresh from their urologist's office having been told surgery is the answer and they're the one to do it. Naturally, people ask for confirmation of their doctor's advice.

Frequently they have heard nothing about radiation, as urologists are surgeons and may not bring it up. Naturally, those who've had successful radiation therapy will suggest investigating it. If anyone is "shaming" in their approach, that is obviously inappropriate, and may be inadvertent. Maybe consider it to be a hopeful sharing of a possibly unknown option.

[Some here do have a fairly confrontational style that I also find quite off-putting. If someone irritates you a time too many, make liberal use of the forum's user-block feature. It has improved my experience. Absolutist, dogmatic, self-righteous, know-it-all types can be hard to take even if well-meaning. If that happens, just block them. You can later un-block if you choose to do so, by editing your profile. I'll also freely admit I may have been that way a few times too, but my intent here has only ever been to be helpful and supportive.]

Regarding RT… these machines are extremely precise.

They would lay me down on a table, take a scan to see where everything inside was sitting that day, they would then remotely adjust the table by just a few millimeters to get me all lined up before starting. The small table movements confirmed to me the accuracy they were trying to achieve.

Because of this accuracy the nontargeted areas get limited dosage. The bottom of the bladder is exposed and for this reason, you have to be completely healed from surgery before starting. RT treatments for other conditions like colon or esophagus type cancers are different because they are targeting the organ directly and at full dosage power.

It’s a journey without a perfect path for success, stay patient and good luck.

up4thefight-

You have to understand that RT as primary therapy is very different, and carries with it a much milder set of SEs, than SRT. If you hear many of us say that one shouldn't go into prostatectomy thinking that one can always "just" do salvage radiation, that is why. Salvage anything carries a worse set of SEs than primary therapy. No one here is whitewashing his RT experience - you have to look at what kind of RT each person is talking about - they are different.

With SRT, the radiation will now hit surrounding organs unimpeded by a prostate in the center. There is now an anastomosis with scar tissue that can become inflamed and may narrow from the radiation. Because it is not surrounded by prostate tissue, it will get the full brunt. The radiation won't affect the nerves much (although it may impede their healing from the surgery), but it may affect the vasculature, exacerbating ED.

That said, it's also true that radiation techniques have gotten a lot more precise over the last few years. And someone who got radiation for some other kind of cancer bears no relevance to your husband's situation.

I think he is wise to give things more time to heal.

I actually side with your surgeon about the PLND. PLND is notoriously bad at detecting LN invasion - a negative result proves nothing. Its use is highly controversial. ePLND is better, but is also highly prone to false negatives, and it carries risk of some serious side effects. I understand why your RO is looking for some additional reason to either radiate or not radiate the whole pelvis. Lacking that, he will have to use a nomogram to come up with a best guess. A nomogram may be a better predictor than a negative PLND.

Here an article about it if you are interested:

We're still not very good at finding cancerous pelvic lymph nodes

Just a thought, if Dr suspects lymph node involvement, could they not do a biopsy ofthe nearby nodes? Husband had lymph node biopsy done the same day as the prostate biopsy. Both biopsies were done with MRI guiding and were positive. Granted, they lymph nodes were (to the radiologists eyes) clearly cancerous so the biopsy just proved it.

Positive thoughts to your husband's treatments and hoping for low SE's!

In my experience, the SE's from ADT are predictable and annoying but manageable. The SE's from post-RP radiation are sporadic and unpredictable. Though not everyone has the same set of SE's say from Lupron, the standard set of SE's, hot flashes and lowered libido, are ubiquitous, while mood swings, hair loss, weight gain, gynamastia, lipid and blood sugar anomalies (the list goes on) affect some men but not others.

Regarding RT, I was hit with unexpected persistent diarrhea half of the time, going back and forth from my normal regularity to watery discharge week after week. It seemed to have little to do with what I ate. The requirement to consume a quart of water for lunch every day was difficult to maintain, especially during periods of diarrhea. Still, it eventually passes. The entire experience is only a couple of months. What happens down the road is yet to be seen.

And while on that subject, you've noticed that no one here who chose primary RT ever, EVER has anything bad to say about it. I suspect most of them have not yet lived 20-30 years following RT, when SE's may arise. Such is the nature of a disease that primarily affects men in their 60's and 70's. And those who claim that a Uro would recommend surgery without also providing radiological consult probably does not have a very good Uro.

And of course, the equipment used for RT today has improved significantly from the 1960's. IMO claiming that advances within the past decade means that there will be no lasting SE's cannot be proven. That is the nature of RT. It is easy to take pot shots at surgery because the SE's appear immediately, while SE's from RT can take decades to appear... assuming the patient is still alive.

I'm not bashing RT here. RP, RT and HT have each contributed to having saved my life. In fact I am currently 2/3's of the way thru ART and just recently experiencing the extreme fatigue that some others report. And the diarrhea has just recently subsided. In a way, it's a bit unfair that just as soon as you learn how to cope with some form of treatment, the treatment ends.

Now trying to work out with my RO just how long the ADT should go on. We won't know whether or not the RT worked to eradicate my cancer until after the Lupron wears off... possibly only then to find out that I should have stayed on the Lupron for another year or so.

RobLee said...
I suspect most of them have not yet lived 20-30 years following RT, when SE's may arise.

I've heard this myth before from urologists. There is no evidence that it's true - none whatever. In fact, SEs from radiation occur almost entirely with the first two years of treatment. This was shown convincingly by the ProtecT study:

/pcnrv.blogspot.com/2016/09/patient-reported-outcomes-from-protect.html

The study with the longest follow-up after radiation was 25 years (the same as the longest f/u study after surgery). No such extraordinary late effects were reported. For a man treated at,say, 65 years of age, he would be 90 after 25 years. At 90, impotence and some incontinence are common, but are side effects of aging, not of treatment.

Tall Allen said...
I've heard this myth before from urologists. There is no evidence that it's true - none whatever. In fact, SEs from radiation occur almost entirely with the first two years of treatment.

I did not hear that from any Urologist, and I'm not trying to insinuate that you implied that. I heard it from patients who had (essentially) permanent bowel problems following RT. Again, I'm not bashing RT. I just don't believe anyone who says that RT will have zero side effects, guaranteed.

It's like the "plasma snobs" from the early days of flat screen TV. Plasma was always 'THE' best, regardless of what anyone said.

RobLee-

No one here said there are no side effects, although like me several said their SEs were light and transient. All treatments have SEs - they are just less severe after primary radiation and generally transient, as you can see for yourself in that SelecT study reference I gave. Everyone has anecdotes to share- but when you make categorical statements like that SEs arise 20 years after treatment, that requires proof. Serious late term and lasting bowel effects are rare after primary RT. In fact, I just looked up the numbers for an article:

Late-term (occurring within 10 years of follow up) rectal side effects:
Grade 2: 4%; Grade 3: 0% in the Katz study of SBRT
Grade 2: 2%; Grade 3: 1% in the MSK study of IMRT

As you see, they do occur in a very small number, and if you happened to talk to the 1 in a hundred, you might get an earful. The danger is in generalizing from a one-off to a statement like the one you made. That's how internet myths get started.