A Long Journey To This Place

[Londear1992]

It was devastating news in early November to hear that Alan has aggressive prostate cancer (Gleason 4+3 in 20% of one core and 4+4 in 30% of a second core with 12 cores in all.)

After intensive research, we found a wonderful doctor who has performed HIFU for 23 years and we are now in Munich Germany following the procedure which took 46 minutes.

The HIFU here cost $11,600 compared with $25,000 in the US and $23,000 in Canada.

Alan is hopeful that he will be as lucky as a friend who had the same procedure with the same doctor at the same hospital 12 years ago and who has not had a recurrence since.

I will put a photo of Alan having a light supper just after coming out of the recovery room.

[Magnus1964]

I hope he has great success with the HIFU.

[bobdc6]

Great! Thanks.

Bob, G9

[Jp2sea]

Best to him

[Darryl Partner]

What was attractive about hifu? May we know your Munich doctors name

[Londear1992 in reply to Darryl]

HIFU appealed because the potential side effects of other options seemed so awful. Alan has two buddies who had prostatectomies and both have zero bladder control. As for their sex lives, we won’t go there. Also, Alan’s Dr, Stefan Thuroff, has done HIFU treatments for more that 22 years. We had four doctors in the States telling us not to do it, but after meeting other patients who have had HIFU with Dr Thuroff and have remained cancer free for 12 years, we decided to take a risk.

Dr.Thuroff has written extensively on HIFU and he and his partner, Dr Christian Chaussy, who pioneered HIFU in Germany have a very interesting theory about how HIFU can help boost the bodies own immune system to fight cancer (too complex to explain here but available on-line) and that made HIFU appealing too. Lastly, even if the cancer returns, as cancer often does even with more radical approaches in 30% of cases, Alan can still opt for those.

In the meantime HIFU buys us time for new treatments to be discovered and leaves him with some quality of life until then. Alan’s catheter was removed less than 48 hours after the procedure, he has no incontinence and we are now in The Alps to enjoy Easter before returning to Munich for a last check up for Alan on the 22nd.

Then we fly home to Boston. We asked Dr ELL, a young doctor who works with Dr Thuroff, how many HIFU patients have a recurrence of cancer and he said about 10%. It is still possible to have a second treatment or move on to traditional treatments. The price of $11,600 for five night in the hospital also was a good reason for this treatment. Hope I didn’t take too long to answer!

[Hidden in reply to Londear1992]

I also chose HIFU for the quality of life considerations that you mentioned, but here in the states and yes, I paid the $25K. I've responded to your posts prior to this surgery. I hope Alan does well. That was a much shorter time with the catheter than what I had to deal with. I didn't get to spend even a night in a hospital, just a nearby hotel on Sutter St in San Fran. The next day I was catching a flight home.

[Londear1992 in reply to Hidden]

Thanks! We are home and even though traveling for unfortunate reasons, we actually had a fun time! Here is a link to a little video I made about our experience: vimeo.com/333384968

[Londear1992 in reply to Hidden]

Hi, WSOPeddie. Just wondering how you are doing. I know that you had HIFU for your Gleason 8 cancer and am wondering how things are looking? Alan, who had a hemi-ablation, just had his 6.5 month check up after HIFU and his PSA was 0.21. His very first PSA test after HIFU was 0.19. Alan still has half a prostate left so it is to be expected that his PSA will rise slowly over time as it does in individuals who have no cancer. HAs your PSA gone up at all since your HIFU? How often do you get tested? Thanks!

[Hidden in reply to Londear1992]

My PSA started out undetectable after full gland ablation. It has been ticking upward. The last reading was 0.5. I see my urologist this Tuesday to see what the new reading is. I might get an axumin scan when it hits 1.0 or so. I'm hoping it levels off before then. I am 3 years post HIFU.

[Londear1992 in reply to Hidden]

Thanks so much for the response. I have read that even with full ablation, there can still be some prostate tissue left that produces PSA that is benign. I hope it will be for you for sure. Your nadir of undetectable suggests a really good prognosis. You are really smart to think of having the axumin scan if it hits 1.0. What I have read is that a red flag would be if it goes up more than .75 in one year and you are certainly below that. I just emailed our doctor in Germany to see what he thinks of Alan's PSA score from yesterday. I will paste below here what he said in regard to Alan's first PSA result of 0.19. Have you checked to see if insurance covers the axumin scan? Alan has United Healthcare. I hope they would cover it, but there seems to be such a lot they don't cover! Anyway, best to you and I hope you hear good things from your urologist.

"Very Dear Mrs Jepson,

Many thanks for your email from 15th July, 2019, a day on which I was on vacation for a week . . .

It greatly pleases me to hear of the excellent results of your husband’s PSA (0.19ng/ml: wow !!!).

This means that the treatment he had to part of his (prostate) gives him a very good prognostic result.

The voiding of (prostate) debris, which you have noticed, is normal and will indeed stop after a few months.

In my experience, his PSA will remain controlled each month, but will again slowly and slightly increase.

I wish the remainder of your summer will be wonderful, and later an Indian summer.

Best greetings from a finally cooler Munich (here last week it was 40c = 104 Fahrenheit.)

Stefan Thüroff

[Londear1992 in reply to Hidden]

Hoping for good news for you today! All the best.

[Hidden in reply to Londear1992]

Thanks. 3 months ago my PSA was 0.5. This time it came back 0.6. I consider that a good reading as did my Urologist. He scheduled me to come back in six months with a PSA draw a week before then. We are both waiting for PSA to exceed 1.0 in order for an axumin scan to be ordered. I hope your husband continues to do well.

[Londear1992 in reply to Hidden]

So glad you had a good result. Hope things go well for you in the future!

[Londear1992 in reply to Darryl]

Sorry I also should add that Dr Thuroff speaks excellent English and even gave us a two page surgical report all in English within two hours of completing the surgery. I faxed it to our doctors at home, but they were not in support of HIFU so no telling what they will make of it!

[dadzone43]

fingers crossed for Alan

[Londear1992]

Thanks!

[greatjohn]

I had it as a second line of treatment(Salvage) after radiation. My Prostate has appeared to be clear since having it...but unfortunately it had already spread to bones and lymph nodes when we did it.

All the best to you!

John

[Londear1992]

Thanks, John. We are hopeful but realistic. Cancer can come back no matter which treatment we go for. I am so sorry the cancer had spread before you could have the salvage HIFU. Hopefully one day we will have a better idea of what causes prostate cancer and how it spreads. Until then we are working, to an extent, in the dark and everyone is different. So hoping there will be another treatment available for you!

[Hindemith]

Londear - I'd love an update about how Alan's doing. Thanks.

[Londear1992]

He is doing great! He had the catheter in less than 48 hours after his procedure. He never had any incontinence after the HIFU - only urgency. And he has no ED. The real test will be when he has his first PSA test around the 11th of July at the three month mark. Then we will have a better idea, from his PSA test result, whether the HIFU got all the cancer. Fingers crossed!

[Hindemith]

That's tremendous to read. I for you will be anxious to hear about the upcoming PSA. Please do let us know.

[Londear1992 in reply to Hindemith]

Hi, Hindemith. Juts got Alan's psa back today. It was 0.19. Anything below a 1.00 is considered good after HIFU especially when it was a hemiablation. He does still have half his prostate and so that still produces some psa. If it ever rises more than .75 in one year, that is a red flag. Alan feel great and everything still works so HIFU seems so far to have been a good choice for him.

[Londear1992]

Will do!

[Hindemith1]

Wonderful. Hope it continues low low low! Thanks for letting us all know, and congrats.