HIFU in Europe

JerryB · Regular Joined: 13 Jul 2009 Posts: 41 Location: UK

Hi Everyone,

I'm new here having been diagnosed with PC fairly recently. Details below. Initially, I had decided on brachytherapy, but was unable to go ahead with this because of the size of my prostate / slow flow rate. I am now on a three-month course of hormone therapy, which will hopefully reduce the size of my prostate and improve the flow rate. Initially, I was a little despondent at not being able to go ahead immediately with brachytherapy, but I now view this delay as an opportunity to carefully review where I'm going in the future with treatment.

Certain aspects of HIFU are very interesting and seem to me to be worth further investigation. I live in the UK and would like to hear from anyone in the UK or elsewhere in Europe who is either contemplating HIFU or has undergone this treatment, successfully or not so successfully, in the past. I'm not in any way rejecting the very helpful comments that have been made on this forum in the past by people in North America and elsewhere, but the experiences of people a little 'nearer to home' would be of great help to me.

Cheers,

JerryB
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

notme · Guest

Hi Jerry B,

You should give this a look, it's the story of a guy in the UK who had HIFU done back in 2002, his PSA is now 0.1 His email is attached to the link and his wife answers all mail. He has several friends who also had HIFU, they all had it done in Belgium.
http://www.yananow.net/Experiences.html#hifu

I had HIFU done in Mexico by a USA doctor. It went perfectly. I saw your post at HW, the group that runs that place is very opposed to HIFU. They'll say anything to discredit it. I posted my story and they erased it, it was too good, they only keep the guys around who have bad things to say about HIFU.

Good luck and may the hormones go easy on you.

PSA 8.7
Gleason 3+4=7
HIFU Jan. 24, '09
No discomfort, easy procedure
Supra pubic catheter in for 2 weeks
Started to urinate normally-while catheter was clamped- 4 days post HIFU
June '09 PSA 0.3 (five months after HIFU)

JerryB · Regular Joined: 13 Jul 2009 Posts: 41 Location: UK

Thanks notme. I've only taken a quick look at yananow so far, but it seems to be an interestiung and informative site.

The HW group does seem a little cautious about HIFU, which is perhaps not a bad stance for a treatment that has yet to completely prove itself.

I don't think it's so much the treatment they are wary of, as the feeling that some of the postings (not yours, I'm sure) may have an underlying agenda. Who knows?

Anyway HIFU does seem to offer a possibly 'better' alternative to brachytherapy, and I'm really pleased to hear that yours was succesful.

Cheers

JerryB
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

notme · Guest

BTW,

The day prior to my treatment we met the doctor and his nurse so they could brief us on what to expect the next day, and we went over all the rules.
There was another guy there, he had a few months of hormone therapy prior to HIFU, to reduce the gland size. He also had a TURP--again to reduce gland size--a month prior.

I think it's $6,000. in Italy.

Did you phone Denny and Thelma? Who knows, maybe they live just down the street from you!

JerryB · Regular Joined: 13 Jul 2009 Posts: 41 Location: UK

Hi notme

Thanks for the further information. I have read in several places that HIFU can be less expensive in places like Belgium, France & Germany compared with the UK where I have been quoted approximate prices of £13-£14K. Ouch! Also, some of these places have a considerably higher treatment volume with HIFU than the UK centres. I think that quantity of experience is quite an important factor to consider, whatever the treatment chosen.

Haven't spoken yet with Danny & Thelma, but will before too long. I have had a long and interesting telephone conversation with another UK-based chap who is on the yananow site. He had EBRT which was completed fairly recently, and seems to have been successful so far.

Cheers,

Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

notme · Guest

Agreed, as much as I want the trials to be successful, I wouldn't join one, the doctors haven't had much experience. But I do know of a guy whose trial HIFU didn't work, then he went to see a more experienced doctor who redid him and now he's great. That's a good thing about HIFU, you can redo it, or do EGRT or surgery in the future.

My doctor said to me, "I feel badly about my first dozen patients, there's a learning curve to this". I guess ya just gotta ask, maybe trial docs in the UK have had more experience...?...Denny's doc in Belgium sounds very well experienced, 7 years or more.

The worst part of HIFU was not eatting solid foods the day prior!

Yes, I am quite enthusiastic about my treatment. I have a buddy getting it tomorrow, he's a M.D..

JCR6566 · Regular Joined: 14 Jul 2009 Posts: 18 Location: Australia

hi I live in Queensland Australia and I have know I had prostrate cancer now for three years since 2007. I feel probable had it for years before since as I have CF'S as well. In 2007 I tyred to have the robot surgery done, but after spending $3,000.00 flying from state to state seeing two doctors in two different states I was told by both of them at 140 kilos (lbs ) I was to heavy to get the robot surgery done. I then tyred to get the HIFU done. But at $20,000.00 and not covered by my medical insurance I was unable to. By the time I got around to seeing a urologist about just getting an RP done. three years had passed. He said three years is to long a time we need to be sure the cancer has not spread so he sent me to have a a Bone scan a CT scan and a pile of every other tests, he could think off. I past Evey one. I think I pass them all, because over the last nine months, I also been on holistic alternative cancer treatment. I found in that nine months, I felt better my mind was clearer also the PSA test that I have every three months showed that my PSA had gone down and my free PSA had come up. So when on my last visit with the urologist he told me he would have to cut the nerves to my penis and take out most of the lymph nodes coming from the prostate and in doing so there was a chance he might nick the nerves that control both my inside legs Shocked

So I decided not to go ahead with the RP. and just stick to what I'm doing now, My next PSA comes up in August and the way I feel I think it going to be lower the the last one Laughing

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

JCR6566,

That was a long time to let slip by.

This is just my opinion--nonmedical and all---but I think you're making a mistake in continuing to avoid treatment. While a holistic diet can help reduce risk of getting prostate cancer, and it may help slow it down some if you've got it, there is zero evidence that a person can cure their prostate cancer by diet or other lifestyle changes.

"Passing" those scans does NOT mean you're in the clear.

What is your Gleason? How many cores did the biopsy find cancer in? What is your clinical stage?

What are CFs?

Best wishes.

PS: I see you've posted another note where links had to be removed.
_________________
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

JCR6566 · Regular Joined: 14 Jul 2009 Posts: 18 Location: Australia

I'm on the holistic treatment, as I now have no choice, The RP would have done to much damage, and Ive been through to much pain as it. I was worried if I had the RP the danage from it I would just give up and die. I posted links to sites that showed what I'm on In 2007 my Gleason score was 8 and my PSA was just 4. But after the biopsy my prostrate cancer got worst It ened up I had urine retention and a I was in a lot of pain Im now pain free. I had CF'S but what I relay had was Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is an illness characterised by exhaustion and many other symptoms. It can strike at any age and can affect children as well as adults. Ive read on sites Victoria alone could have at least 34,000 people who suffer from ME/CFS. This condition used to be known as chronic fatigue syndrome. I know it as CFS Ive done a lot of research on it

Myalgic Encephalomyelitis means pain in the muscles and inflammation in the brain and spinal cord. Onset of ME/CFS may be sudden or slow and may follow viral infections, toxic exposure, trauma or other events. There can be various levels of severity of this condition. Some people can go to work or can manage moderate levels of activity, while others are housebound or bedridden. I was bed ridden for two yours with it I lost my business, and now I'm on a disability pension. because of ME/CFS

The course of illness is difficult to predict. Some people recover quite well over a long time. Some people remain about the same, while some suffer relapses and others get worse. mine got worst until I started treating my cancer with the holistic treatment the three table spoons of flack seed oil mix in with six table spoons of cottage cheese seem to clear my mind and I had less pain in my body

I feel better I can think more clearer. My urine retention gone so I can pee better so I think on this treatment I'm doing OK how are you going cheers Ray

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

Okay, Ray, thanks for the additional details. I'm sorry to hear about the chronic fatigue. I understand about not doing the RP and HIFU not being covered, but what about radiation? Some of us here have had external radiation. I had both--surgery and radiation. Compared to surgery, radiation was a breeze. It might be a chance for a cure, the treatments are completely painless (although there is a chance of side effects, but these tend to be mild and temporary).

You could ask a radiation oncologist or medical oncologist about this. You could keep up with the alternative therapies, but I would be VERY careful about the level of cyanide you're getting. The apricot kernels, at the level you're consuming, have a lot of it, if you're using the bitter variety. Cyanide is where the bitter taste comes from. Plus Laetril and amydaline have it. You are using a potent chemical, even if you're getting it from natural sources.
_________________
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

	Cancer Forums Forum Index -> Prostate Cancer Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others