HealingWell
Search Close Search
☰

Why wouldn't most have surgery??

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/24/2017 3:30 AM (GMT 0)
I'm brand new here so first I just want to say thank you for being
here. I've been reading the forum for a week now, and feel like I
know many of you.

I have been procrastinating sitting down and writing my experience
and questions that I have for this forum. And as I am writing this I
now understand why..... I think its because out side of my doctor
visits I don't talk to anyone about this and I knew that once I started
posting that meant I would have to talk about it and not only talk
about it but face the fact that this is actually happening and also that
I would have to start being proactive. Even as I am writing, it is
hitting me even more so that this whole thing that I have been
diagnosed with is for real.

I've been doing a lot of reading here and the decision on treatment
has been very difficult for me. Initially I thought, "of course I'm going
to do radiation because there was no way I'm going to do a surgery"
Then I found out that if you do radiation, your salvage options are
really limited.

What I don't understand is why most men who are around my age or
younger wouldn't just have the surgery. Now, I realize that the side
effects are more severe with surgery but wouldn't the ultimate goal
for anyone with cancer be to have it cured. And since there is always
a chance for it coming back with either treatment wouldn't you want
to pick the treatment that would have better salvage options.

I don't want to have the surgery but I am concerned about the
limited salvage options you have with radiation if it comes back.

Ive tried to think about my cancer as little as possible over the last
few month and just trying to live a normal life as if nothing is wrong,
as I am low risk and have time, but I cant procrastinate any longer.
So I guess this post here that I am writing marks the beginning of my
journey.

You have all helped so much already by just reading your post. I'm
hoping you could give me your thoughts, opinions and advice on what
I just wrote.

Blessings,
Randy
Posted 8/24/2017 3:42 AM (GMT 0)
Randy, welcome to the club that nobody wants to join. Wish you didn't need to be here, but good that you found us.

A lot of it is largely a matter of personal preference. There are guys who are just as concerned about erectile function as they are about cure.
And modern radiation techniques have just as good a cure rate as surgery in cases like yours, with lower side effects and lower chance of secondary cancers, than in the past.

My first question would be, did you get a second opinion on the biopsy slife's, from a prostate pathology expert, like dr e-stein at Johns Hopkins. If not, you should.

Next, assuming second opinion concurs on G6, have you given thought to Active Surviellance, has your Uro discussed that option with you

Third, who told you that there are limited Salvage options if you recur after radiation as primary treatment? Was it a surgeon? If so, ask a radiation oncologist/ There are options.

You should talk to specialists in various forms of radiation, Brachytherapy, both LDR (seeds) and the newer HDR - non permanent radiation placement, plus SBRT (aka Cyberknife). And also talk to multiple surgeons,

Educating yourself is a way to take back control, and assure that you make a good decision for YOU and are confident in that decision.

Others will be along with more info, stay tuned. And good luck
Posted 8/24/2017 3:48 AM (GMT 0)
Randy, cure rates are nearly identical between surgery and radiation therapy. So if your research didn't point that out, you'll have to dig a little deeper. Most people that choose radiation, picked it, I assume, for lower SE and avoiding the risks, side effects, and scars of surgery. Hope this helps.
Posted 8/24/2017 3:50 AM (GMT 0)
Welcome Randy,

You have a very good question.
With newer forms of radiation, recurrent cancer primary to the prostate is rare. In fact, radiation can treat areas surrounding the prostate up to 5-15 mm that could have been left by surgery.
If the cancer is only in the prostate, radiation and surgery will normally result in cure. If the cancer returns, it usually results from cancer cells that have penetrated the prostate capsule and have entered the lymph system or other areas. Here, neither radiation or surgery have been curative and secondary treatments are the same. The biggest advantages of radiation is less impotence and incontinence. With cure rates being the same between the two, I chose radiation.

I would caution with surgery or radiation, there are major differences in outcomes related to the expertise level of the physician.
I wish you the best.
Paul
Posted 8/24/2017 3:56 AM (GMT 0)

searchinginla said...
Randy, cure rates are nearly identical between surgery and radiation therapy. So if your research didn't point that out, you'll have to dig a little deeper. Most people that choose radiation, picked it, I assume, for lower SE and avoiding the risks, side effects, and scars of surgery. Hope this helps.

Thanks for responding smile
I did read that the cure rates are the same. I guess I was more concerned
that once you had radiation and the cancer came back in the prostate, you could no longer have surgery or more radiation and the salvage options were limited to HT and some type of freezing.
Posted 8/24/2017 4:02 AM (GMT 0)
For the record, I had surgery for the reasons you describe. But.....as Pratoman suggests, why not consider Active Surveillance

What I'd suggest before deciding on any option other than Active Surveillance, is to research the sexual side effects of treatment (you can find lots of information at this forum), then weigh the consequences of non-treatment (AS) vs. treatment and decide which one is the best choice--emotionally and physically--for you.

My own anecdotal evidence (one guy's experience) is that if AS had been a good option when I had a prostatectomy as it is today, I would have chosen it for my own low-risk G6. Once you've had treatment, you can't, like a vasectomy, undo it. And my opinion is that MDs offering treatment advice understate sexual side effects.

Welcome to the forum and best to you on your decision.
Posted 8/24/2017 4:10 AM (GMT 0)
Randy,

Sorry I did not read or signature more carefully. I agree with Tim that active surveillance is maybe your best treatment at present.
Good to centers that specialize with this.
I would also recommend that you have your slides read by Epstein at John Hopkins for a second opinion to insure you are dealing with a Gleason 6.

Paul
Posted 8/24/2017 4:29 AM (GMT 0)
Cure rates are similar and there are equivalent salvage options for both. Don't let a surgeon tell you about radiation and don't let an RO tell you about surgery. Listen the expert in their field of expertise.

You're also a great candidate for AS. Consider that as well.

Also consider that a failure of primary treatment is rare for your numbers. Can happen, but the odds are low. I went with RT as my primary treatment and am doing just fine five years later.

Andrew
Posted 8/24/2017 7:46 AM (GMT 0)
Randy welcome and I recommend you read Klotz book. It is expensive and very through. Some medical terms require definition but he makes the scientific case of AR. I have read a bunch of books and find this to be the best.

I am of the opinion that if AR is appropriate, which may be in your case, why not delay or avoid SE for as long as possible? Also in the delay, the scientists continue to research and develop better treatments.

https://www.amazon.com/Prostate-Cancer-Patients-Laurence-Klotz/dp/0774006099

I am waiting on Decipher results to inform my decision. I wish you well. Denis
Posted 8/24/2017 8:59 AM (GMT 0)
Why wouldn't I have surgery?


My urologist offered to remove my prostate, and then he took the next 10 minutes going through an elaborate explanation about how it was very likely (regardless of how good the surgeon is, and how hard they try) that if he removed my prostate, my penis would take a major hit. Likely to be an inch or 2 shorter, and IF I were to achieve a future "erection" it may never again be erect enough to have the type of satisfying sex with my wife that I'm used to having.

Then he told me I may have to have radiation anyway, and that radiation causes more severe side effects, once the prostate is removed.
Posted 8/24/2017 10:52 AM (GMT 0)
Hello Leo and welcome. I think you have already received some excellent responses including the need to get a second opinion on your biopsy slides and to seriously consider AS. If you decide to get treated and your diagnosis holds there is an excellent chance for you to be cured with surgery , LDR Brachy, HDR Brachy, IMRT or SBRT. You'll want to discuss those options with experts in each of those protocols.

While I certainly understand the desire to want to understand backup options I still suggest you focus on getting the cancer cured the first time out. With equal cure rates, surgery has the value proposition of giving you exact post procedure pathology. Radiation has the value proposition of a considerably lower chance of onerous side effects. All the rest is noise in my opinion.

Re your question about backup options, there are equally good options for failed surgery and failed radiation - they are just different. We have discussed this on our forum many times before. I suggest you type "options for salvage after radiation" (without the quotes) and a number of threads will come up.

Jim
Posted 8/24/2017 12:19 PM (GMT 0)
To me it is simple. All surgery is by definition physically damaging. Also by definition the healing process from the damage leaves lasting changes often with negative results like scarring and adhesions.

If you don't need surgery then why submit to the damage?

Radiation has proven to be as and more effective than surgery for cancer control and presents fewer and less significant side effects.

Think of the old days when exploratory surgery was routine. Then came the CT and MRI and now exploratory surgery is rare.

For me surgery was ill advised because all the indications were that it would not be curative. Three surgeons all said they would not operate and that I should use radiation. Seven years later I am cancer free and have none of the negative side effects of surgery.

That's why. We are lucky to have multiple treatment options. I have learned and I advise people to pursue the method that works and presents the least significant side effects. Remember that if the treatment works you will have to live with the side effects for a very long time.
Posted 8/24/2017 12:27 PM (GMT 0)
Hi, Randy,
You've already received a lot of good guidance, so I won't repeat it. My choice of SBRT (radiation) was more driven by my medical history -- I had already had all the major (cardiac) surgeries I wanted to endure, so I researched and chose a radiation therapy. No regrets here.

One point that nobody has really highlighted though - why base your primary (first) treatment choice on availability of salvage treatments when some of the primary therapies have something like 97% cure rates for your particular pathology? Why accept more onerous side effects when you would have only about a 3% chance of needing secondary treatment?

Oh, BTW, I concur that once you've gotten a second opinion on your biopsy slides from a lab like Epstein's, why not look into Active Surveillance? It has the fewest side effects (all are emotional) and you can always move on to active treatment if appropriate.
Posted 8/24/2017 2:26 PM (GMT 0)
Ok, Wow, this was a lot of answers to go over....I think I've read them all three times already...lol
Hopefully my questions and replies will help others also.

Pratoman said...

My first question would be, did you get a second opinion on the biopsy slide's, from a prostate pathology expert, like dr e-stein at Johns Hopkins. If not, you should.

No, I have not. I noticed many are sending their slides in to see if
the first findings were correct. So I'm assuming this is done by an
expert looking at them visually and not by some precise computerized
method or machine. And aren't the slides looked at by an expert in
the first place.

Pratoman said...

Next, assuming second opinion concurs on G6, have you given thought to Active Surviellance, has your Uro discussed that option with you

The Oncologist recommended I not wait too long. His reason was to
get it treated while it was still contained in the prostate. It sounded
reasonable to me but I'm new to all this.


Pratoman said...

Third, who told you that there are limited Salvage options if you recur after radiation as primary treatment? Was it a surgeon? If so, ask a radiation oncologist/ There are options.

Mostly from reading. From what I have read the two main options are
Hormone treatments and Cryotherapy. I'm very active and in good
shape..I was a gymnast in my day and can still do a backflip so HT
I think (correct me if I'm wrong) would effect my muscle strength not
to mention possible man boobs. shocked
Plus treatments done after radiation carry a higher risk for side effects.
Posted 8/24/2017 2:38 PM (GMT 0)

Tim G said...
For the record, I had surgery for the reasons you describe. But.....as Pratoman suggests, why not consider Active Surveillance

Hi Tim, I am a little concerned that my last PSA reading was up to 7.5
on Aug 4th. The previous reading three months earlier on May 3rd was
6.35 The doctor didn't seem to concerned but I was thinking couldn't
that be a sign of a more aggressive cancer. Aren't there test they can
do to find out how aggressive the cancer really is?
Posted 8/24/2017 3:14 PM (GMT 0)
Hi Randy and welcome to our world. Lots of good advice here so I'll echo what I think are the main points.

Yes, get that second opinion on from Johns Hopkins on your biopsy slides.

As a Gleason 6, you are low risk and should consider AS. Safe and the only treatment without SEs. You would need to find an AS program to learn more.

Consult with ROs about radiation (and know that there are several types) and urologists about surgery. Each type of doc can't speak super knowledgeably about the other's treatment. Also, as a G6 (pending that second opinion) there's no reason you would need HT. Don't even bother going there with your research.

Lastly, although I'm not a doctor I disagree with what your doc about moving fast. PCa is a slow-moving beast--particularly if you're a G6. You have time to learn about this and make an informed decision. Hope we can help point you in the right direction. Good luck to you!
Posted 8/24/2017 3:18 PM (GMT 0)
Leo:

You have some misinformation. HT is not curative. It would only be considered if you failed primary and then secondary treatments. YOU HAVE TIME. DON'T LET YOUR UROLOGIST RUSH YOU IN TO...HMMM....HIS SPECIALTY: SURGERY! Surgery would be an excellent choice. But if you choose surgery, take the time to find a really expert surgeon.

But, first things first. you absolutely need that expert second opinion. Check out Jon Epstein at Johns Hopkins U.

All he does is prostate cancer pathology. He is the one of the best in the USA. His website has clear instructions. Also, he might actually call you with the results.

If he confirms the first read, then you have all the options, including AS, available.

Mel
Posted 8/24/2017 5:28 PM (GMT 0)
In answer to your subject question, I believe most do, in fact, have surgery. Lots of good advise above. In all my readings, you are correct that after initial radiation, follow up options if there is a reoccurance are somewhat limited. Difficult, but not impossible.

Cure rates are very similar, as are SE, they just come at different times. Don't let a surgeon, or a happy patient, tell you about radiation and don't let an RO, or satisfied patient, tell you about surgery. Seek out the best objective statistics you can find. Then make an informed choice, based on a wealth of other folks and physicians experience.

In the meantime, AS sounds like a good option while you further educate yourself. Good luck!
Posted 8/24/2017 5:42 PM (GMT 0)
Hi Leo-

You were misinformed about salvage.

Here are the salvage options if primary surgery fails locally:
1. salvage external beam radiation

Here are the salvage options if primary radiation fails locally:
1. salvage focal low dose rate brachytherapy (seeds)
2. salvage focal high dose rate brachytherapy (temporary implant)
3. salvage whole gland SBRT
4. salvage focal cryotherapy
5. salvage focal HIFU
(6. salvage surgery - if performed by an experienced expert at salvage surgery like Eastham or Scardino)

More to the point, all primary therapies have cure rates of around 97% for low risk men like yourself, so it doesn't make sense to make a decision based on a 3 in a hundred chance. (It's actually much less than that with some kinds of radiation because only local failures are important for salvage).

Active Surveillance is an excellent option for you. Make sure it's part of a program and not something you just do on your own.
Posted 8/24/2017 6:13 PM (GMT 0)

LeoLuna said...

Tim G said...
For the record, I had surgery for the reasons you describe. But.....as Pratoman suggests, why not consider Active Surveillance

Hi Tim, I am a little concerned that my last PSA reading was up to 7.5
on Aug 4th. The previous reading three months earlier on May 3rd was
6.35 The doctor didn't seem to concerned but I was thinking couldn't
that be a sign of a more aggressive cancer. Aren't there test they can
do to find out how aggressive the cancer really is?

Leo,

The difference between a 6.35 and a 7.5 is statistically insignificant and does not indicate a more aggressive cancer, especially with a non-aggressive Gleason 6.

You have all the time you need to make a decision. Breathe, Think, Reflect, Stay Positive and Keep Posting. The guys here give good advice worth your serious consideration. We've all had prostate cancer and know what it's like to be confused when first diagnosed.

Take care and hang in there
Posted 8/24/2017 7:16 PM (GMT 0)
Your biopsy indicates the least aggressive cancer possible, G6. That is the good news. It means you do not have to rush to a treatment and can take a good time to decide. It may also mean that you may never have to treat it, or at least defer any treatment until it is proven that treatment is best for you. In the meantime....no treatment side effects!!

G6 alone does not cause problems as it stays local and is slow growing. It is a cancer that doesn't need to be cured. Operating on a G6 like you are now is generally considered to be over-treatment that can cause unnecessary negative side effects. There is a possibility that another more aggressive cancer can develop (G7-10) but you would know that well in advance of a problem by pursuing an AS program. You recent rise in the PSA is not indicative, by itself, of a more aggressive cancer.
Posted 8/24/2017 7:32 PM (GMT 0)
Leo-
You have a diagnosis of low risk prostate cancer, based on my knowledge. I hope you consider active surveillance.

If you decide on treatment, make sure you learn all you can about all options open to you. I chose surgery, but did not do enough research about radiation. I'm happy with my choice, and my outcome. But we're all different in our priorities, so having a choice, and the time to make an informed decision, is a plus.

I'll mention the SE of ED which is immediately present after surgery. I've done a lot of reading about it, and most docs understate the long term effect. You're in your 50's, so you have a better chance of recovery. But there's a good chance you will not be the same as you were prior to surgery. So if that's a factor, consider it seriously.

You do have time, so don't rush into anything. Get a few opinions. Good luck.
Posted 8/24/2017 7:41 PM (GMT 0)

garyi said...
In all my readings, you are correct that after initial radiation, follow up options if there is a reoccurance are somewhat limited. Difficult, but not impossible.

Cure rates are very similar, as are SE, they just come at different times.

Garyl, sorry but I'll have to disagree on both of these points. See Allen's post above addressing the first one. Re the second one while it is true that cure rates are similar it is not necessarily true that the SE's are similar. Of course anything can happen but there are many, many studies that indicate a significantly lower rate of ED and incontinence for radiation patients vs. surgery patients. The study I relied on when I sought treatment was the oft quoted "Quality of Life" study posted some years ago in the NEJM. You can Google that and still find the study if you are interested.

I'm not saying that Randy should choose surgery or radiation as each of us has our own value judgments and reasons for making a choice. I'm simply recommending that he get educated in our disease and deal with the facts.

Jim
Posted 8/24/2017 7:59 PM (GMT 0)
Randy,
There are two kinds of reoccurrance, local and systemic. System reoccurrence is when the cancer is outside the prostate and no salvage treatment is effective. The vast majority of radiation reoccurrences are systemic and not local. Local reoccurrance is when the cancer is still in the prostate or in the margin. Local occurrences are more common with surgery as there is always some tissue left behind or margin that wasn't cut out. This is why local surgical failures are treated with radiation.
The largest cause of local radiation failures was too low a dose. Since IMRT and other treatments now give a min of 81 gys instead of the older 65gy, local failures have all but disappeared.
It is also a misnomer that there are no salvage treatments for radiation. Brachytherapy, low or high dose and SBRT are the most commonly used to treat local failures.
I've been on this forum for 9 years and in tens of thousands of posts I can only recall one radiation failure that was local as opposed to several posts weekly on surgical failures.

Post Edited (John T) : 8/24/2017 2:04:11 PM (GMT-6)

Posted 8/24/2017 8:19 PM (GMT 0)

Tudpock18 said...

Garyl, sorry but I'll have to disagree on both of these points. See Allen's post above addressing the first one. Re the second one while it is true that cure rates are similar it is not necessarily true that the SE's are similar. Of course anything can happen but there are many, many studies that indicate a significantly lower rate of ED and incontinence for radiation patients vs. surgery patients.


Could be Jim, but I don't believe either.

You'll notice on my first item, I said difficult, but not impossible. I think that's still accurate.

On the second item, I'm still waiting to see large, objective, scientific studies over a long period of time, that prove radiation SE's are "significantly lower" than surgery SE's.

Not that everyone, including Randy, should do their own research in places other than forums, and come to their own conclusions....just as most of us have ;-)

✚ New Topic ✚ Reply
123