Radiation vs Surgery the debate continues...

davidcliftonpitts · Regular Joined: 19 Jun 2009 Posts: 11

Sometimes i wish these guys would get into a ring and just have a 3 hour debate slugfest. Well I visited the top guy in my city in Houston ( one of the top guys) and we dicussed surgery in depth and other treatments he was open minded but very confident about the surgical outcomes. So confident that i was like dang! the Dr. had performed about 800 robotics and lots of open's plus he kept meticulous stats on his patients over all very impressed. But ahhhh i found a radiation guy who is supposed to be really really good. So i will talk to him july 8th after that i am deciding and going for it.
but the argument is interesting i am sure the technology of radiation willl get better and surgeons will come up with even better robots and laproscopic instruments. I just wish somebody would come up with a pill and this be over...
Much Love and God bless everyone..
David...

davidcliftonpitts · Regular Joined: 19 Jun 2009 Posts: 11

Now i just read about Tomotherapy and Gene Therapy combo at methodist hospital in houston !!!...

johnT · Senior User Joined: 27 Apr 2009 Posts: 175

David,
As I recall you have a gleason 8 or higher. The recommended protocol for high grade cancer according to the Prostate Cancer Research Institute is a multi mode treatment, that is a combination of surgery, IMRT, or Hormone therapy.
Surgery and IMRT or IMRT and Hormone Therapy would probably work, but in all probability you will have to have some sort of radiation so in your particular case the surgery-radiation arguement is probably mute.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

notme · Guest

"i am sure the technology of radiation will get better"

It has, it's called ultrasound, High Intensity Focused Ultrasound, HIFU

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

Your right, radiation has steadily gotten better but HIFU is NOT radiation.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

notme · Guest

thank goodness HIFU is not radiaiton!! with all the terrible side effects from radiation!

But HIFU and radiation both do the same thing--they destroy the targeted tissue.

So why have radiation when HIFU is available?

David,
Your doctor ruled out HIFU because your stats won't be allowed in the clinical trials, however, I'm betting that out of the country HIFU can be done.

Latest stats on HIFU show a ED rate of 30%, and less than 1/2 % incontinence. However, I have found many men on the web who also had HIFU and I don't know of any who had any problems.

I had HIFU, walked away without any problems at all.

good luck

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

A short memory, perhaps?

notme, you just wrote "However, I have found many men on the web who also had HIFU and I don't know of any who had any problems. "

That's simply not true. For example, haven't you read the stories on yananow or healingwell where men had serious side effects? Or how about on January 12, where you wrote:

"I found this and thought I'd pass it along:

I am 62 and went to Turin Italy last week to have HIFU treatment by Dr. Leonardo D'Urso. Insurance will not cover it, but due to their socialized medicine, my total cost for HIFU, dozens of e-mails from Turin doctors, hospital stay overnight after HIFU, and follow-up visit following night to Dr. D'Urso was only about $5600 USD. I felt some discomfort during the night after HIFU but walked a couple miles the day after and had a great trip to Turin.
Jim

But then I pointed out in a followup post that Jim had soon regretted his decision:

Subject: Update on my 2/28 HIFU
Date: 05/22/2007
Right after my HIFU I said I had no harmful effects. However, a week later I began experiencing what turned out to be diagnosed as rectal fistulas. I had one procedure in mid March and go into the hospital again today for out patient surgery. I read that rectal injuries happen to less than .5% of HIFU patients. Although my PSA last month was only .8, I now regret having had HIFU in Italy. Later, as you yourself wrote, Jim said that he had suffered SEVERE rectal injury, and HIFU did not control his cancer--he had to have surgery after all. His story is on Yananow.

You touted the first posting, but then dismissed the second, saying that Jim was in effect, just unlucky to be one of the Italian doctor's early patients.

There are PLENTY of anecdotes on the web of men who have had problems. We also know of the recent trial in the UK that was aborted due to serious side effects and dismal results in controlling cancer.

HIFU, like any other treatment, has its pros and cons. It is far from risk-free, or a magic bullet.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

I called International HIFU the other day. I did not reveal anyone's identity, but simply said I knew someone with this Gleason and PSA. I spoke to a nurse.

She said that such Gleason scores would not automatically rule a person out for international treatment, but it would, as notme correctly pointed out, exclude a person from the U.S. trial. She said they would want to do some scans--CT and bone to "make sure" (her words) the cancer had not escaped the capsule. Which, of course, is either mistaken, naive or disingenuous, since scans cannot rule out local spread or systemic disease--they can only rule them in. I'm probably overemphasizing this point of our conversation, since scans are routine before any primary treatment, and she was probably just trying to convey things in lay terms.

I would not be over-eager in terms of HIFU. If you look at this article, about a study from Italy ( http://prostatecancerinfolink.net/2009/01/26/italian-experience-with-hifu-in-163-patients/ ) you may conclude, as did the commentator, that "...HIFU may be a reasonable form of treatment for men with low and intermediate risk prostate cancer and a relatively small prostate, but that patients at high risk for progression are not appropriate candidates for this form of treatment." David may very well be in a high or very high risk strata. (David, Google "D'Amico risk stratification" if you want more on that) HIFU was effective in only 19% of men at very high risk, and only 35% effective in men at high risk. In other words, unless you fall into the low or intermediate risk groups, HIFU is probably not going to help, at least according to these European researchers.

While it might be possible to have HIFU done outside the U.S., I would think very carefully about it because it does seem (to me, a nonqualified observer) to be more appropriate for low or medium risk situations.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 249

On our visit when Hubby signed for his surgery, we met a patient and member of Man To Man (support group) who had had HIFU and he asked if Hubby knew his Gleason score.

As soon as Hubby responded 9, the gentleman told him that HIFU wouldn't be appropriate for him. As much as he was an obvious proponent for HIFU and was happy that it had worked for him, he also was cognizant that if you have a high risk Gleason, you should be looking at radiation or surgery or hormones.

notme, is it possible that the ONLY reason the Gleason score doesn't matter in the US trials, because they are 'experimenting' and trying to find parameters for which to use it???

I doubt you'd find a doc in the Toronto area willing to use HIFU on a Gleason over 6.

Every treatment has pros and cons, side effects to greater or lesser extents and risks. Anyone who says otherwise is a fool.

Just my 2 cents worth.

Jean

notme · Guest

replicant,
Not a short memory, I just wrote a short note to introduce him to HIFU. What I meant is I personaly don't know of anyone with ED or incontinence.

Yes, there are some examples of bad outcomes, that's why I always stress to go with the most experienced doctor. International HIFU has the doctors who have trained the doctors in the clinical studies, and I know of no problems from them. I have found many men who had Dr. Scionti and all report 100% no side effects, and no recurrance, so far.

All forms of treatment carry the risk of recurrance.

Here's the PubMed page that lists 151 studies/reviews, the one with some negative is here, but it's the only negative study that I could find. The doctors in that study must not have been very experienced, but it's such double talk I don't even understand what they were saying!

http://www.ncbi.nlm.nih.gov/sites/entrez

I am guessing Jean, but that guy from Man to Man probably just knew what the clinical studies represent, as I've learned differently since then. It's best to call yourself and tell them what your situation is, they certainly don't want any failures, as they are keeping data...and they care.

Yes, yananow.net is good site. I found a lady whose husband was treated 8 years ago and they have sent several men in for HIFU and all report no problems.

If HIFU doesn't work then you still have the option of surgery or radiation.
But HIFU is the least likely to cause any problems.

I just think you should have this other option, and you decide, I am ever so grateful to whom told me about HIFU.

davidcliftonpitts · Regular Joined: 19 Jun 2009 Posts: 11

[quote="johnT"]David,
As I recall you have a gleason 8 or higher. The recommended protocol for high grade cancer according to the Prostate Cancer Research Institute is a multi mode treatment, that is a combination of surgery, IMRT, or Hormone therapy.
Surgery and IMRT or IMRT and Hormone Therapy would probably work, but in all probability you will have to have some sort of radiation so in your particular case the surgery-radiation arguement is probably mute.
JohnT[/quote]

I have not had any of the 7 doctors tell me this, and 2 oncologists ruled out hormone therapy.. Proton MD Anderson automatically rejects anything above a 7 but Florida and Loma Linda accept. RCOG for example in atlanta doesnt fool with hormones too much. but thanks for the comment.

davidcliftonpitts · Regular Joined: 19 Jun 2009 Posts: 11

Well lets use my case for an example and this energetic discussion is good! I think Dr.'s need to energetically discuss more about this publicly so we as patients can get even better treatment Smile

.
Whats unusual about my case according. Dr's in Houston, Dallas and Atlanta. 2 Radiation Oncologist, 2 oncologist and 4 Urologists ( MD Anderson / Baylor and Methodist Hospital ) is that my Gleason is high, my PSA relatively low and the amount of cancer found in the cores is not very much. WE have run every test and as far as the they can tell they believe the cancer has not spread. My prostate is small so the oncologist said hormones would be too much unless i wanted to take 6-7 months trying to decide. The RP urologists are very confident they can get it and the Radiation Oncologist with the exception of RCOG in atlanta are under the feeling that... IMRT/IGRT can knock this out with good chances for a cure.
I am a bit more skeptical and its sounds like all of the approaches HIFU etc are crap shoots, albeit with good odds. The only bright spot in all this is the rapidly advancing technology in Immunotherapy.
I have two more consults and then i am gonna decided, I did here that tomotherapy /IMRT is so accurate is that you can re-radiate the area...?? this is what i have read.. Also i have not met any guys my age who have had radiation everyone seems to go surgery, which does scare me but this is my approach to it..

1) If i can never have an erection again so what... I can always become a yoga guru or something..
2) Urinating normally or close to it is what scares me the most...

Thanks for everyones support on here.
As far as HIFU, i am concerned about the money ( i have good insurance but wont cover this) and follow up , and the extra hardship it would cause on my family , I cant be selfish in this cancer i have other loved ones involved and my only shot is to get the best available procedures in the USA. BUT THAT DOES NOT MEAN IT DOESNT WORK...
or is not good for someone else, its just my situation right now.
THANKS...

notme · Guest

David said "I am a bit more skeptical and its sounds like all of the approaches HIFU etc are crap shoots, albeit with good odds"

If the cancer is contained inside the gland, then HIFU will work as HIFU will totally abliterate the gland.... with much higher life quality odds.

I agree about the money, but with a less than 1% odds of incontinence--I feel I did my family a favor. Don't forget the cost of Depends, lost work .....

There was no follow up nor cost for me after HIFU. And I've spent days googling Dr. Scionti, there are no stories of problems. I'm sure there are many other good doctors, I just know him, as he was mine.

You are a smart guy, I'll go away. I tried.

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

I have this hang-up that one should not loosely throw facts around or distort them to make a point, especially when someone's heath is concerned. Because of that I want to clarify that based on my personal limited anecdotal experiences, I think incontinence is not much of a concern with any good practitioner of open, or robotic surgery or with external beam radiation.
Can it happen? yes.
May you have some initial need for a pad? Yes
Is it likely your public life will be in any way hampered by the time you are healed enough to get back to normal activities? no

I base this on my experience, the experience of 50 men I know in the local support group, and many forum posts. The worst cases I have heard of have been on forums and the patient used 3 or 4 pads a day months after surgery. In truth, his situation may well improve. Even that is manageable however. In no instance are you going be in public and drop a pint of urine. Keep in mind that if you are that incontinent it means you are dripping urine as it is produced. There is no big unload.

I know of far more accounts where men were able to control their urine flow the moment the catheter came than I do of men with significant incontinence.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

johnT · Senior User Joined: 27 Apr 2009 Posts: 175

David,
If your doctors are fairly certain that the cancer is contained then you have the surgery and IMRT option available. HUIF is certainly a crap shoot.
You can not radiate again after IMRT; you can after surgery. Another option to IMRT is seeds and IMRT. You can get a higher dose with the same side affects as IMRT alone. A small prostate is a plus for this treatment option. Some doctors like Danotolli in Fla will actually target the tumor with seeds; the standard is to target the entire prostae gland plus some margin.
The Prostate Cancer Research Institute website has a lot of published papers on staging your cancer and treatment options. Very valuable in questing your doctors.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

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