Other comments from the Radiation Oncologist I met with

The doctor allowed me to ask whatever questions I wanted, so I took advantage and want to share with you guys.  He has 30 years experience, and I am not saying I agree or disagree with him on any one point.  I told him I would post this here tonight:

Seeding:  they do a lot of it, said it works best with gleason 6, they will do it with gleason7, but only if taking along with external beam radiation.  he said if it fails, that the freezing method (cybo?) has best results as a salvage.

HIFU - he said it positively will be approved in the US eventually, but feels its has a lot of potential dangers to it, has a collegue in Canada that had a failry young patient die from it, detroyed his kidneys, his bladder, and gave him the marsa infection.  he also said that the hifu people really aggerate their success and claims about side effects.  he said that anyone that goes out of the country to have it done, is taking their life in their own hands.  he showed me a study on his computer, based on 100 people that had hifu in europe with gleason 6 cases, cherry picked, and in 10 years, the sucess rate was 63%.

Gleason 7:  something we talk about here a lot.  he agree they are dangerous, and if you are young when you get your dx, that surgery is the best option available as a primary treatment.

about the bias between radiation doctors like him and surgeons like my other doctor, he said its mostly a myth in the patients mind.  he said they swap information and cases all the time, he said in my area, they compare notes and try to find the best solution for the patient, though ultimately, its the patient that makes the choice in the end.

He is totally opposed to salvage surgery, he said it was brutal at best, that in his 30 years of practice, he only knew of one case that it worked.

Surgery:  he said what we all say to our new friends, its all about the experience factor, not the method, he said robotic and open were equal in his mind.

If I can remember more,  I will add it on later, brain fried and I am remembering all this in my head.

David in SC

David: This is a GREAT Post.... I am not surprised by his statements.

Jeff T

Hi David. Thanks for the good post.

HIFU in Canada is less than a 2 hour drive for me from where I live. I considered it, but not for long. My biopsy content was fairly high and I had numerous bouts of prostatitis. I wanted to know exactly the extent of cancer I had (post-op pathology) so surgery was my final decision. I know some guys are all for HIFU and certainly the procedure appears less invasive. It wasn't my choice considering my stats. I also wasn't comfortable with the fact it wasn't done in a hospital OR, but, that's just me. I believe I had very good results from the open RP I had here in Canada. One of the primary factors was the surgeons reputation and experience...and the track record of the procedure itself.

I also looked at HIFU in Europe.

Mike

Interesting report on HIFU David.

As you know, if I'd not have been told I might be a 7 that's the route I'd have likely gone.

The 63% is far lower than the reports I was looking at --- as we've discussed here it's just not been around long enough to have a history. I suppose you could take 100 people and come up looking like roses and another 100 and come up like a skunk. It's also interesting that with all the bad news he had that he says it will be approved in the U.S. If there is anything to this death (from what I know of HIFU it's hard to imagine an operator so unskilled to have this happen --- something like a daVinci going amok two, three inches from where it was supposed to be working) The next time you see him could you get some more info on this death? I'd love to see any documentation on it. I have a friend, about 40, who is just going for a biopsy who will likely consider HIFU so I'm keen to learn more.

As for exagerating the results, I'm sure that happens lots. My urologist friend at Mayo told me the results claimed by a lot of daVinci surgeons were very suspect. Another daVinci surgeon said he'd just been at a uro meeting in Florida and the claims being made by daVinci surgeons for ED he said 'no way.' He said in the age group they were operating on way way more men would be going into daVinci with ED problems than these guys were claiming coming out. He said he was darn sure of two things. First, surgery didn't make ED better and two, it was likely to make things worse in most every case, at least for awhile.

David,

Your doctor sounds very resonable; but it's no wonder that newly diagnosed patients are confused with all the conflicting information out there.

Some Docs says open is better than robotic, others say radiation is better than surgery of any kind, many patients swear by Proton Radiation and others by HUIF.

Some noted doctors won't operate on Gleason 8s and others say it's the only way to treate a G8.

It's a jungle out there and for the average Joe real confusing in a time when he is already stressed.

JT

Thanks for the post, David.

The information from the Radiation Oncologist seems very consistent compared to the many articles I've read.

Surgery for the young as first choice with all things equal (they never are - lol) and careful consideration of the various radiotherapy techniques.

My surgeon set up an appointment with a doctor in the radiotherapy department the same day I was diagnosed so I could get a balanced opinion. I may be lucky, but I found that the four doctors I talked to during the phase of choosing a treatment did not push me in one way or the other. The choice of therapy was totally up to me.

Kind regards,

Barry

I will allow Stephen B. Strum his opinion, but I would also reserve the right to heartily disagree with him.

There may be some doctors out there who have developed a routine treatment for PC, but every doctor I have encountered at Cleveland Clinic, University of Michigan, and my local URO have been as far from this generalization as possible. We have discussed every possibloe approach, its merits, and disadvantages, and have jointly arrived at the best solution for me, regardless of whether I was their fa,mily or not. My local Uro called me at home at 9:00 at night to tell me of the biopsy results/

It is my opinion that the majority of doctors out there are trying to do what is best. The problem is, what is best isn't always that obvious from a finger up the butt, a 12 stick biopsy, and some x-rays. Neither is it the same for every patient. This forum is filled with men who have had multioke approaches to similar diagnosis with equal results, both good and bad.

I really think we do a disservice to these men and women who are out there saving lives.