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Old 09-10-2010, 02:36 PM   #1
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appointment with a 2nd urologist

I had an appointment with a 2nd urologist today, who I have quite a bit more faith in than my first (the 1st sent me directly to a cancer center where they specialize in seed implants and I was told that that was DEFINITELY the route for me) and he told me that, since 12/12 biopsies I had were positive, even though he is conservative in his recommendations to get surgery, I should definitely get surgery because my prostate is so saturated with cancer.

I guess I will now focus my research on what the timeline for removal/recovery is. I started investigating it and stopped because I thought I'd end up doing either implants or HIFU.

Sad day,
Best regards,
John

Last edited by Administrator; 09-12-2010 at 06:03 PM.

 
Old 09-10-2010, 03:27 PM   #2
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Re: Does anyone have any experience with HIFU

[COLOR="DarkGreen"]Hi again John,

IThank you very much for your quick and comprehensive reply.

Your welcome! Glad to help.

Unfortunately, I had an appointment with a 2nd urologist today, who I have quite a bit more faith in than my first (the 1st sent me directly to a cancer center where they specialize in seed implants and I was told that that was DEFINITELY the route for me) and he told me that, since 12/12 biopsies I had were positive, even though he is conservative in his recommendations to get surgery, I should definitely get surgery because my prostate is so saturated with cancer.

Ah, you are traveling the road so many of us have traveled - radiation docs recommending radiation strongly, and urologists equally strongly recommending surgery. I'll just say this for now: the surgeon, with his first hand and professionally experienced (contrast with me) view of your case, may be giving you very sound and sincere advice instead of a sales pitch and hustle. What concerns me is that prostates packed with cancer (me) often are not well-suited for surgery - too often some cancer is already established beyond the range of the surgery, therefore rendering it not very useful. There are ways of smoking that out, such as a color Doppler ultrasound guided biopsy done by one of the few experts, or an endorectal MRI with spectroscopy by an expert center, but you could also consider other options, still including brachytherapy.

I guess I will now focus my research on what the timeline for removal/recovery is. I started investigating it and stopped because I thought I'd end up doing either implants or HIFU.

Sad day,
Best regards,
John[/QUOTE]

Take care,

Jim

Last edited by Administrator; 09-12-2010 at 06:04 PM.

 
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Old 09-11-2010, 05:51 AM   #3
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Re: Does anyone have any experience with HIFU

Quote:
Originally Posted by john52il View Post
So, did you have HIFU yet? How did it go? Where did you do it? How did you find the most experienced, best doctor? Please reply!
Hi John,

Yes I had my HIFU treatment in mid May. Now that I look back, it was less dramatic than I had anticipated, but non-the-less nerve racking at the time.

I had it done at SunnyBrook Hospital in Toronto. I used Dr Klotz who is the chief surgeon. My diognosing Dr put a great deal of pressure on me not to go the HIFU route because "it was an unproven technology"

Dr Klotz can also provide the surgury route, which was recomended by my diognosing Dr., Dr Borth. However, in my case and due to my age, 51, he felt HIFU will provide a better solution. I would highly recomend you get his opinion as he can do either treatment, surgery or HIFU, depending on your situation.

I was very surprised to wake up the morning after the treatment with a boner. Sex was my biggest concern with this diagnosis, but since the treatment it has been very good. I need no artificial enhancers to get a boner, however the orgasm is dry and slightly less satisfying but none-the-less much greater then I had expected going into the treatment.

I use no diapers, and my urine control is complete. The recovery with the catheder sticky out of my belly was the worst part of the entire experience.

I believe, from Jim post, if the govt here in Ontario is discouraging HIFU use its probably because it currently does not fund it and probably never wants to fund it.

It cost me 22k but well worth it given my current sexual activity.

Again from Jims post, if I find in the future my prostate cancer returns I can reuse HIFU for only 11k next time. So you can see there is alot of miss information out there.

From my experience, if you can scrape up the money, its well worth the cost.

I highly recommend it.

If I can be of further assistance I would be happy to do my best.

Peace be with you my friend.

 
Old 09-11-2010, 10:07 AM   #4
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Re: Does anyone have any experience with HIFU

Quote:
Originally Posted by Eventod View Post
Hi John,

Yes I had my HIFU treatment in mid May. Now that I look back, it was less dramatic than I had anticipated, but non-the-less nerve racking at the time.

I had it done at SunnyBrook Hospital in Toronto. I used Dr Klotz who is the chief surgeon. My diognosing Dr put a great deal of pressure on me not to go the HIFU route because "it was an unproven technology"

Dr Klotz can also provide the surgury route, which was recomended by my diognosing Dr., Dr Borth. However, in my case and due to my age, 51, he felt HIFU will provide a better solution. I would highly recomend you get his opinion as he can do either treatment, surgery or HIFU, depending on your situation.

I was very surprised to wake up the morning after the treatment with a boner. Sex was my biggest concern with this diagnosis, but since the treatment it has been very good. I need no artificial enhancers to get a boner, however the orgasm is dry and slightly less satisfying but none-the-less much greater then I had expected going into the treatment.

I use no diapers, and my urine control is complete. The recovery with the catheder sticky out of my belly was the worst part of the entire experience.

I believe, from Jim post, if the govt here in Ontario is discouraging HIFU use its probably because it currently does not fund it and probably never wants to fund it.

It cost me 22k but well worth it given my current sexual activity.

Again from Jims post, if I find in the future my prostate cancer returns I can reuse HIFU for only 11k next time. So you can see there is alot of miss information out there.

From my experience, if you can scrape up the money, its well worth the cost.

I highly recommend it.

If I can be of further assistance I would be happy to do my best.

Peace be with you my friend.
Thank you Eventod. Experiences like yours are what make me strongly consider HIFU. Since other posters are suggesting I start a new thread, I am going to. Your input is welcome and appreciated.

 
Old 09-11-2010, 10:10 AM   #5
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Re: Does anyone have any experience with HIFU

Quote:
Originally Posted by got View Post
My husband had HIFU 2 years ago. We highly recommend it. No side effects, no problems, no cancer.

We've sent in several friends, all report being thrilled with the outcome. We've also found several who were treated before my husband was, they are also very happy. A few had some ED (looks like age is a factor here), but potency returns when it heals inside.

We used Dr. Scionti, Clinical Associate Professor of Urology , NYU School of Medicine
Director Prostate Cancer Ablative Surgery, NYU Langone Medical Center
New York, NY. He has treated about 800 men over 6 years using HIFU. He trains other doctors how to do it. He was a real sweetie, he still stays in touch if I email or phone him. He demanded we email or phone him every three days right after treatment until I tired of it.

I'll always wonder if doctors don't mess up on purpose in those hifu clinical trials....they certainly do not want to see HIFU approved. It was invented in 1941 by a urologist, finally it is out of the closet!

Yes, worth every penny! A 2 hour painfree, no cutting treatment and life goes on.
Another encouraging story about HIFU! I remain confused, but appreciate the info. I was specifically considering Dr. Scionti. Could you tell me how much it all cost and where you had it done? I was hoping to do it in Toronto. Frankly, though, 800 men over 6 years does seem to be a very small sample.

 
Old 09-11-2010, 10:16 AM   #6
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Re: Does anyone have any experience with HIFU

Eventod, I'd like to know what the extent of your cancer was when you had the HIFU. Irv is turning 51 tomorrow and his PSA is 32. His Gleason is a low 7, 3+4 (20% 4). His prostate isn't enlarged and 10/10 cores came back positive, 60% on the right lobe and 20% on the left with perineural invasion in both.

Irv's urologist is Dr. Klotz and he said that if the cancer hasn't spread, according to the bone scan and ct scan, then surgery is the definite way to go. He never mentioned HIFU at all. We're in a support group and somebody there told me that Irv is too far along with his cancer to be eligible for HIFU but I read that it will also work for intermediate cancer.

Irv is so young, like you are, and his nerves, most likely, would not be spared if he has surgery. That leaves a life-long sentence of impotence. The initial reaction is...Well, at least I get to live....However, the question remains, is there a better way, at his stage, to preserve his male functions?

Any feedback and/or advice you can give me would be very appreciated. We go for the results of his scans on Tuesday. We hope for favourable news. Irv is asymptomatic as far as we can tell. He's a painter who climbs up and down ladders all day, and so he has some aches here and there sometimes but nothing consistent that would indicate a spread to the bones....We certainly hope not.

Hope to hear from you soon.

Regards, Rhonda

 
Old 09-11-2010, 04:27 PM   #7
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Re: Does anyone have any experience with HIFU

Hi again Rhonda,

I hope Eventod will also reply, but there are some facts to bear in mind. I'll add them in green to an excerpt from your post #15.


Quote:
Originally Posted by srhonda61 View Post
... We're in a support group and somebody there told me that Irv is too far along with his cancer to be eligible for HIFU but I read that it will also work for intermediate cancer.
Actually a fair amount of research has documented results for HIFU with intermediate risk patients. Yes, it appears to have worked for some men with intermediate-risk cases , although follow-up in years is too short to inspire high confidence.

However, it's an odds thing. Did you see what I posted earlier on that risk? It appears that HIFU may give you about a mid-50s% to a mid-60s% chance to knock out the cancer. In sharp contrast, seeds, or seeds plus external beam are consistently scoring in the 80% to near 100% success rates, with substantially longer follow-up than HIFU - sometimes double or triple the follow-up periods, and many more studies that document such success than HIFU has. Surgery results range basically in the 60s for intermediate risk patients - better than HIFU, but well below radiation. However, having an expert do the surgery would give an added edge.



Quote:
Originally Posted by srhonda61 View Post
Irv is so young, like you are, and his nerves, most likely, would not be spared if he has surgery. That leaves a life-long sentence of impotence. The initial reaction is...Well, at least I get to live....However, the question remains, is there a better way, at his stage, to preserve his male functions?
I've found a way and have followed it for over ten years now with a case that is very likely more challenging than your husband's. Hormonal blockade really is an option that would preserve potency and libido in the long run, though libido (not potency, with help such as Viagra type drugs, if needed, that can last during blockade) might crash in the period of approximately a year and a half during which the patient is on full hormonal blockade. Fortunately, when the major drugs are stopped, someone as young as your husband is extremely likely to recover from side effects within several months. The downside is that the treatment, while likely providing very long-term cancer control, would be extremely unlikely to cure the cancer. However, putting that in perspective, it would buy you both time - time for normal functioning for these younger years, and time for treatment technology to improve.

By the way, the "father" of combined hormonal blockade, the predecessor to triple blockade, is Dr. Fernand Labrie from Laval University in Quebec. From coast to coast, Canadian doctors have much experience with hormonal blockade therapy.

Your question is at the core of what the authors of the new book "Invasion of the Prostate Snatchers" are saying. Essentially they are saying that low-risk cases should be fairly uncomplicated for a sound choice - it should be active surveillance in most instances. Similarly, they say that high-risk cases have fairly limited options, with strictly local therapies being off the table. However, one of their main focuses is on what you are experiencing: intermediate risk cases are challenging. It's not enough just to consider effectiveness of treatment; it's also very important to consider quality of life that often the patient will have for many, many years!


...

Quote:
Originally Posted by srhonda61 View Post
Regards, Rhonda
Hang in there. If I may borrow a saying from the world of baseball, if this were easy, it would not be prostate cancer.

Take care,

Jim

 
Old 09-11-2010, 11:48 PM   #8
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Re: Does anyone have any experience with HIFU

Thanks, Jim.

I just ordered Invasion of the Prostate Snatchers and Primer on Prostate Cancer
I suppose I'm getting ready to attack those resources shortly after we get the results on Tuesday.

Send positive thoughts our way.

Last edited by Administrator; 09-12-2010 at 06:05 PM.

 
Old 09-12-2010, 05:38 AM   #9
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Re: Does anyone have any experience with HIFU

Hi Ronda,

My PSA was 3.8 when diagnosed with 8 of 12 cores being positive, my gleason score was 6 (3,3).

My diagnosing Dr. did tell me about radiation seeds and other types of traditional options but recommended surgery because of my age.

I found Dr Klotz when I was exploring the precision cutting option, (I forget the name of this procedure, but Dr Klotz did it so I contacted him) he responded quickly and explained given my age and score I would likely be an ideal candidate for HIFU. I had not discovered HIFU prior to him disclosing it to me and he agreed to see me. Upon his approval to use "watchful waiting" for awhile I waited six months only to see my score rise to 4.2. I could have continued to use watchful waiting, but fearing the spread of cancer, I decided shortly thereafter to use HIFU.

If Dr Klotz has not mentioned HIFU, it is likely he feels your case warrants a different kind of approach.

Should you find it has spread to the bones, I would ask you to contact Dr John Thompson at the university of Waterloo. The company (Senesco) which has the rights to his gene discovery are about to apply for IND (Initial New Drug) with the FDA later this year with clinical trails early next year. It is a very, very promising discovery to treat many types of cancer. They have chosen bone cancer as thier first IND because of the extreme difficulty in successfully treating it.

If I can be of further assistance please advise.
Peace be with you and your partner.

 
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