Have any of you guys out there had HIFU it a relatively new procedure, my husband is having it done next week
Any comments please
HIFU is for prostate cancer. Is that what he has?
Hi Carolyn,
I am in consultation with Dr. George M. Suarez, M.D., F.A.C.S., F.A.A.P.
Founder and Medical Director, International HIFU Centers -
Miami, Cayman, Dominican Republic.
He has been very easy to work with. He claims to have trained all the HIFU Doctors in North America. I sent him my medical records and he has consulted with me by phone. He is working on a plan to shrink my prostate so he can do the HIFU procedure on me. (I have 2 issues, large prostate and prostate cancer). So far the plan involves a Mini TURP which will help with reducing urination issues but minimize the side effect of RE.
I will be glad to answer any questions I can that you or your husband may have.
Who is the doctor your husband is seeing (if you don't mind my asking)?
Carolyn,
There are several articles that may be of interest on the cancertherapyadvisor site. It is not a new treatment other than in the States, it has been used in Europe and other parts of the world for years.
Scott
You can search by HIFU on the site..
Yes he has a low grade contained prostate cancer Gleason 6... And he is having HIFU. Done at our local hospital in Harlow Essex Uk.. It stands for High Frecuency Focused Ultrasound..where they go in and burn with a lazer ultrasound the effected area of the prostate in my husbands case they will take about 40 % of the cprostate away! So hopefully no incontince Problems.. We shall see .. He will be monitored for the rest of his life ...if any cancer comes back I think they do the procedure again. But time will tell... My husband will probably have to have scans instead of psa tests because his psa was very low only 1.8 ...he is 61 years old even when he was being investigated for prise problems it was this low level ....but he had prostate Cancer so psa in my husbands case was not an accurate test...the only reason they investigated further wad blood in his water (actual droplets of blood) and his prostate gland was of a normal size.. He had 18 biopsys taken from the prose gland and it hurt like hell, that's when they found 3 cores of cancer... But originally they saw a small node in the prostate gland on the MRI...hence the biopsy...
so surgery on the 27th June at last.
hi there ES 28567
we live in the UK..my husband does not have any problems with size of prostate... So he does not have to have this Turp procedure... However we was given a lot of information about this operation by the Uroligist after cancer was found low grade Gleason 6.. And was recommended this.., we went on to see Consultant Uroligist/Oncoligist about HIFU his name is Mr Jaspal Virdi.. It has few side affects only about 4% incontince problems .. The only thing is my husband will have to have a catheter for 1 week after op.. This is because the procedure on the gland makes it swell so hence the catheter .. So we are hoping recovery will be quick and painless..
will keep you posted.
Yes, HIFU is not new, but was recently approved for treatment in the USA. The advantage of HIFU for treatment of localized prostate cancer is that is isn't radiation, it is ultrasound. So, it destroys the cancer cells with heat. Radiation to the prostate is a common treatment but there can be some side effects. HIFU isn't without side effects either. As it is a heating procedure the prostate will swell up, so your husband will have to wear a Foley Catheter for some time. The length of time varies from person to person. I had my prostate cancer radiated a couple of years ago and had swelling so had to have a catheter for five weeks. I got used to it - so, really, not too bad.
Make sure that this treatment is covered by your current form of medical insurance, otherwise you might have a considerable payment for the service.
Wishing you both well,,,,Tom
Hi Tom
we are in the UK so we are lucky to have our NHS even though. It's very far stretched nowadays .. However we are lucky we can have this done at no cost even though there are only about 15 centres within the UK..so it's all funded... People in the UK run our NHS down but if you are in the system you are treated well ..
just hope my husband doesn't have to have cathater for more than a week that's what we were told..but we wait in trepidation ... As my husband is a terrible patient..😫Shall keep you posted.
Hi Carolyn
About 9 years ago I wrote a similiar letter on line and heard from a lady whose husband had HIFU 12 years prior in Belgium. She gave me the confidence to go to Mexico (we are Americans) to have it done, it was quite scary, as I had to pay 25,000. dollars prior to going. We met a lovely American urologist, Dr. Stephen Scionti from Sarasota, Florida down there..... and it's without a doubt the best decission we ever made. The procedure was completely pain free, took 2 hours, the only reason they put the patient to sleep is to make sure he doesn't move. The catheter was in for almost 2 weeks, and we were told it is to dispell the ash that is left from burning the gland, and also a few blood clots, it all came out in the catheter, without the catheter his urethra could get clogged. I am sure the gland is swollen afterwards too. The catheter is no problem.
HIFU was invented in 1941.... and there is a foundation working to get it approved for all kinds of diseases, like Parkinsons, Epilepsy, some 42 diseases, and almost all cancers could be treated as well. It's the Focused Ultrasound Foundation. In Switzerland they have treated many people with brain cancer!
Anyway.... there is one warning... at first he may find it difficult to get an erection, that is because things have been rearranged when it heals, do not fret! Our doctor prescribed Cialis, 1/2 pill taken each day "to insure that the vessels stay open while healing". It didn't do anything sexually to him, but made him heal with everything working. It did take him about 3 months to fully be back to norm.
We've sent in many friends for the treatment and actually only one said he had the same problem after treatment, the rest said all systems were fine. I've NEVER even heard of any incontinence at all.
The most important thing is to make sure your doctor has had lots of experience, mine had done 200 at the time, now he has done 2,000. But.... lots of experience does not always have the best results, I hope you talk to other patients he has had. It takes skill to read the ultrasound. Your husband has an added advantage, he has a MRI, the two together give the best results.
I am sure you will be one happy girl, it will be hard to believe anything at all happened to him after he gets the catheter out.
Best wishes
Oh, by the way, do NOT expect his PSA to be zero, because HIFU does not get the whole package of glands that produce PSA he will always have a reading, but the reading should be lower and stay low, a substancial rise means a possible redo.
This is all good news to hear! HIFU was recently FDA approved in the USA and even though it has been successfully performed for more than 12 years (over seas), most insurance in the USA are still calling it an "experimental or investigational" procedure so they don't have to cover it. When I was diagnosed with cancer, my urologist only recommend a prostatectomy (because that is what he does) and downplayed all the side effects and said he doubted I had any other option other than active surveillance. I looked into proton therapy (which insurance also plays the "experimental" card to get out of covering it). I have talked to many people who have had the procedure and are happy with their results. While I think proton radiation is better than photon radiation, it is still radiation and so my final choice (if I can get my prostate to shrink down enough) is HIFU.
So sorry your husband has cancer, but so happy he found HIFU. Please, please, please, come back and give us a day to day update (with positive or negative experiences) at least for the first two weeks and then monthly, so others will know what they might go through. (I used the word "might" go through be cause every mans experience will be somewhat different.
Thanks to everyone who has posted and contributed to this topic.
Hi Dawnay
many thanks for your positive post.. I'll keep you all posted ..yes getting slightly fretfull now as is my husband..but your letter made me cry only with good feelings..
my husbands psa readings were low only 1.8 so our nurse said they will probably check this each time with a MRI as well ..
Surgeon very good he also does this procedure with a surgeon from UCL.(university collage London ) Which is one of the best hospitals in the uk with the most advanced new treatments and the best surgeons.. So I feel happy..
Hi there ES
yes we were happy we made this choice as we were given the options and lots of reading material.. Also Our Surgeon was very pleased we came to this decision ..thank goodness my husbands gland is of normal size and doesn't have to have Turp...my only worry is having the cathater in for a week or so, as I know he'll hate it..coz when he has the biopsy on the prostate it kept on blocking and causing a lot of pain with clots... So hope it doesn't happen again..
I will keep you guys posted .. Yes thank god we don't have to pay in the UK..and this is now funded on our NHS and I know that it's under the experimental procedure.
Best of luck and hope you get your prostate to shrink down for HIFU.
Hello again Dawnay
can I ask you how long ago your husband had HIFU? and did you mean it took 3 months before he could get erections or that it took him 3 Months to recover from operation procedure and feel well in himself ..
Also is your husband remaining cancer free.
many thanks..
Many Thanks Tom
can I ask are you still Cancer free...and are you still have regular checks done.
Regards
Carolyn,
When I was originally diagnosed with Gleason 6 prostate cancer, I went on Active Surveillance for a year and a half and spent that time researching my options and interviewing doctors who did different procedures. I decided to go with HDR Brachytherapy - High Dose Rate Brachytherapy. I went through two treatment sessions spaced two weeks apart. Each was painless - got a spinal both times. No external beam radiation, no seed implants, no operation. After the second treatment I had Median Lobe swelling that cut off my urine flow, so required a catheter. Actually, I had six of them over a five week period until the swelling went down. I had BPH before the treatment, and after - still have difficulty urinating.
Anyway, my PSA is now down to 0.2 - couldn't be happier. I continue to read all of the latest research papers that compare the effectiveness of the various treatments, and HDR and Protein Beam continue to come out on top of everything else. So, I am confident I did the right thing. You should research the 5 year survival rate of HIFU vs other treatments. For Gleason 6 just about everything is very effective. Some doctors won't even classify Gleason 6 as cancer. You haven't mentioned your husband's PSA, number of cores, percent of each core, rate of change of PSA (velocity). Maybe he can go on Active Surveillance for a while until he decides on treatment. For low risk category patients, there is no downside to waiting.
A couple of additional notes about the HDR - no ED, everything works fine. Also, there is no external radiation passing through body tissue, so the effects on bladder and rectum are minimal.
I get my PSA checked every three months - before treatment it was 4.6, and after treatment it fell rapidly, and as I mentioned previously, it's now down to 0.2.
Tom
Yes, he is cancer free and perfect as the day I got him. We had the treatment 25 days after biopsy. So, 9 years ago. The first week after the treatment his penis laid on the bed like a dead fellow.... it was quite devastating! But as soon as he took a Cialis it had life, and our doctor reassured us that all would be well, but to take 1/2 a day - as some vessel had most likely gotten a crimp (like a gaden hose) in it, to keep the vein open with Cialis, I really don't remember how long he took them, a month I guess...and we had sex at one month, but it was not too strong, at 3 months all was well....it was a slow process to get to be like he was prior. But it will come back! With surgery it could be gone, the vessels get removed, cut, damaged beyond repair
When we were told my husband had cancer his local uroligist told him he had one month to have surgery, his cancer was right next to the wall of the gland and would most likely spread outside the gland in 30 days, which also meant that he would take the 'whole bundle' and leave him in diapers and without erections. So you can see we were in a mess of thoughts! going HIFU in Mexico was so scary and paying in advance to a stranger!
Dr. Stephen Scionti traveled out of the country for 10+ years treating men with HIFU, he has the biggest heart, he knew he was saving them. There were 4 U.S. doctors in attendance learning how to do it.
And I think we can thank him for the FDA approval, the FDA knew too many of us were learning about it and how wonderful it is. Honestly, your husband will go in for treatment, wake up groggy and walk out wondering if they actually did anything at all. Only the catheter will assure him that he didn't just take a nap!
I've heard about where you are going, the UCL.... and you are right, that is the cream of the crop!!!!
This is also directed to ES....
Our doctor, Scionti, was also treating another guy the day he treated my husband, we talked (of course!!) and his gland was also too big, but Scionti had put him on a testosterone reduction pill for 3 months, it caused the gland to shrink in size so he would be able to get all the cancer. Has Suarez mentioned this pill? Seems a lot easier and cheaper than a TURP.
I hate to say this.... but there is one patient who is left with trouble after HIFU that I know of (I read him on the internet) and his doctor was George Suarez, yes the same one, who did bring the technology to light in the USA. He burned a hole in his rectum. Please don't get mad at me (people usually hate the messenger)... this happened some 4 years ago. The whole story is --- the patient had HIFU in Japan, he got home and had his PSA tested, it was lowered quite a lot, but not zero. He expected zero, he was mad and so he called Suarez and Suarez agreed to treat him again.... but he hadn't healed from the original, and thus (I think) the hole was burned.
Another reason the FDA was negligent in not approving HIFU earlier.
Carolyn, I forgot to answer one part of your question....We went out to lunch right after the procedure...he felt groggy from the anesthesia but that was all..... one guy told me he woke up with an erection after the procedure. No one has said they felt badly, but you will be told no heavy lifting for a month. However, my husband shoveled snow within two weeks as he forgot the warning.
Carolyn,
I went back and read all of your comments again and I have one more important point to make. If your husband's PSA is 1.8 and he has Gleason 6 pattern, then he would be classified as very low risk, and is a perfect candidate for active surveillance. The majority of men who get a diagnosis of Gleason 6 with low PSA think they need immediate treatment, and usually have their prostate removed - in other words, they get scared and don't even realize they have a lot of time - possibly years, to research and consider their next step.
When I got my diagnosis I was 66 years old, had a Gleason 6 pattern and a PSA of 4.6 and my urologist recommended active surveillance, which was the correct recommendation. I then had a lot of time to interview doctors and read about all of the available treatments. Some men on active surveillance never need treatment, because there is no "progression" of the cancer. You have to monitor the change in PSA over time (velocity) and the number of biopsy cores positive and the percent of each core. Why rush to treatment if it isn't necessary?
With low risk or very low risk situations a second biopsy is done about a year and a half later - usually 12 core, not 18. For 18 I would want to be knocked out, because after 12 cores the pain is terrible. Anyway, you and your husband need to consider whether he needs treatment AT THIS TIME, or can wait. Don't rush into anything. Don't be frightened into treatment that may not be necessary. All of the information you need to make a final decision is available on the internet. This forum is a great place for information, as you have found out.
My very best to you both...