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Posted 10/13/2009 3:35 AM (GMT 0)
Tony is right about HIFU faithful having inaccurate facts. People are making big, very big, money on HIFU right now and I'd want to be very careful about what provider was quoting what facts.

On the cost, the $22,000 (Canadian) is a bizarre fee. This is an outpatient procedure that doesn't require a hospital. A clinic setting is just fine. I'd think costs will drop to $5,000 with everyone making lots of money, once the FDA lifts the lid on this. I bet all those doctors who swear they will have nothing to do with HIFU now will be lining up to get a machine much like what happened with da Vinci. But, unlike da Vinci I don't see this procedure taking as big a share of the market, but one doctor I talked to (a U.S. based da Vinci surgeon who doesn't do HIFU but has checked into it) thinks it will take a big share of the market --- he says the third (I think third, if I remember) generation machines now on the market are way ahead of the first ones introduced 10 years or so ago and predicts future machines will be even better. I'm more cautious.

One prediciton I will make is that these machines will lead to a huge battle between doctors and insurers. I don't see the need for a doctor to be involved in the treatment process --- at least not full time. Just as doctors don't set up and run X-ray machines, technicians do that, these HIFU machines appear to me to be ones skilled technicians could run every bit as well as an MD. The doctors are not going to be pleased with that idea. Of course, I could be really wrong about this, but dentists don't clean teeth and I suspect urologists won't HIFU --- at least not in the hands on, big dollar way they do now.

It will be interesting to see how his develops. And, it will be interesting to see in 10 years actual longer term results, and not the 5 to 10 year numbers now available.

Sheldon AKA Sleepless
Posted 10/13/2009 2:45 PM (GMT 0)

My "open surgery" was only $20,000 including 3 nights in the hospital and all surgery costs. Of course, this was vastly discounted because of the network provider agreements. The original charges were close to $40K. I had already satisfied my deductible so my co-insurance was only $1,500.  

The costs for da vinci would have been almost identical with the same Urology Group but a different surgeon and the same hospital.

Posted 10/13/2009 2:48 PM (GMT 0)
My husband and I met with a Davinci Robot surgeon. He charged $835 for a 20 minute consultation. So hearing that the cost of the surgery, hospital stay etc. is upwards of $60,000 didn't seem that far fetched. Don't forget an American HIFU doctor and his staff have to fly to the Bahamas or Mexico. Everyone needs room and board etc. I would think the travel alone must be a huge overhead cost. It would seem that no matter what the treatment is, there are oodles of money to be made.
Posted 10/13/2009 3:37 PM (GMT 0)
It was far fetched. It was a scare tactic or it was an attempt to falsely hype the benefits of HIFU. I have read the website. Lot's to be considered, but mainly this is one business competing against others. On this board I have heard of cases less that 20k for surgery. Usually with the Doctor and hospital providing special discounting for cases that were not insured.

I would not doubt he has a private plane for this business. It is a write off and he is getting paid cash up front in almost all cases. But even with flights from SC to Cancun, it isn't very expensive. And I am certain the doctor owns condo's in these areas.

My Uro cost me $25.00 for the consult, $100.00 for the surgery. I drove to SoCal and stayed at my sisters house. I was paying COBRA at the time so my expenses were on the high side for the insured.

Tony
Posted 10/13/2009 3:51 PM (GMT 0)
LaurieJo how is your husband doing? I read on the CF page that he was recovering well...I hope you both stay and tell us your story of HIFU. But please refrain from reading the sales pitch to us. It is very controversial and many parts are highly inaccurate. Everyone has heard it here and it's inaccuracies make for highly divisive discussions. Most people I know who had surgery had minimal issues and many had none. Almost all who had radiation have been side effect free immediately following treatment. There are those who outright had a bad experience and the last thing they want to hear is someone smugly saying insensitive or inaccurate things about their treatment modality.

Tony
Posted 10/13/2009 5:02 PM (GMT 0)
I think it will be a long time before HIFU is approved in the US. As long as urologists control PC treatment, things like HIFU and color doppler will never be recommended even though they show a lot of promise.
As I have posted many times before, Prostate Cancer is the only cancer in the US whose treatment is controlled by surgeons not oncologists. As long as this continues new treatment options and diagonostics will be very slow to be adopted. Why are there only 4 or 5 doctors that do color doppler biopsies and why are there only about 20 prostate oncologists in the US? Other cancers have hundreds or thousands of oncologists; why not PC, the 2nd or 3rd leading cancer in the US.
In Breast Cancer, the sister of PC, a doctor or surgeon will always recommend seeing an oncologist who will work with the surgeon and radiologist to plan out the treatment. The oncologist is always the lead doctor on a team; most other cancer treatments also work this way.
JohnT
Posted 10/13/2009 5:33 PM (GMT 0)
True statement for the most part. There are exceptions: Dermatologists control the skin cancer industry ~ the largest cancer "industry". Ophthalmologists the eye cancer industry, etc. But as I have stated here before. Many urologists and radiologists ARE oncologists. And not all oncologists are qualified for prostate cancer. That stated, and I am 100% certain, that there are hundreds of prostate cancer oncologists in the US. There are ten at my cancer center alone and none of them are urologists. There may be a list of 20 or so that are highly touted, but that does not eliminate any of the others being equally as good.

The related cancers next to most prostate cancers are Adenocarcinomas. The majority of breast cancer patients are ductal carcinoma's, squamish cell or sarcoma's. One could say that ovarian cancer is the sister to prostate cancer and be more closely suited, however, they are each unique on how they are addressed.

The one point I disagree with is the statement that urologists control the PC world. They may be the first ones there but the patient controls his prostate cancer treatment.

Tony
Posted 10/14/2009 6:26 AM (GMT 0)
 

   I realize this post will not answer anything about the efficacy of the HIFU treatment choice.

  

   However; I offer this link as a crude primer for newcomers to get a peek at the

   present state of the HIFU mish-mash.

   http://prostatecancerinfolink.net/2009/02/22/hifu-under-appreciated-or-over-promoted

   fogball

Posted 10/14/2009 11:49 AM (GMT 0)
That website seems to contain all the info in one place that most of us use here in being skeptical about the overtouting of none or minimal side effects of the procedure, including the correspondence and back and forth in the comments section underneath. All the cites, quotes and info. to data that shows our concern for this being a procedure that is pushed as a cure-all while minimizing side effects, and showing the funding sources and financing of the various behind the scene characters who have a vested interest and convolted assocation with the companies.

It's a keeper for my permanent file and I thank you for a link that contains the info all on one page, and appears to treat it as an unbiased informational format. It includes support and data for both sides of the argument, with a healthy dose of reality concerning the USA side of it.
Posted 10/14/2009 3:08 PM (GMT 0)

I would agree that the article and info at the link is very objective. I would also agree that if you are early stage PCA with a Gleason equal to or under 6, you should consider HIFU.

One thing that did surprise me was how many "do-overs" they were having to do. Maybe it's better now.

Posted 10/14/2009 3:09 PM (GMT 0)
I saw this when Mike Scott originally wrote that article, as I work with PCai the parent of the InfoLink that Mike started. I believe that Mike is one of the elite advocates in our corner. He does not promote any treatment modality as he does not have prostate cancer. I did not post this here because I did not want to send the wrong message. We want to hear the personal experiences of the HIFU community. Keyword is "personal".

I have nothing against HIFU, but I take issue with anyone over promoting any treatment, especially a treatment where there is little unbiased data, to the point of using misinformation and arriving new at a support website to discuss other folks "miseries". It's very inconsiderate, and it seems to always come from someone who visited the doctor from SC in Mexico. Clearly HIFU can be an option for those with indolent prostate cancers who would rather not watch and wait. Perhaps even with those localized moderately differentiated cancer. We won't know that for quite some time but it deserves to be evaluated and it is being evaluated. We will get more factual data in due time.

What's more, prostate cancer can not be determined cured in one week, one month, one year, and in many cases, one decade and even more. Having a low SE treatment, without in depth knowledge of it's performance over the long term against prostate cancer is a risk most are not willing lay out 25G to take. I applaud those who do so in studies, but please don't come out to tout the SE's using observance of others miseries to make their case. They are still in the experiment. The most important part of any prostate cancer treatment is not the SE's, it's how well the treatment works against cancer..

Tony
Posted 10/14/2009 3:24 PM (GMT 0)
Very well said, Tony, in your last post. THat needed to be said clearly in my opinion also.
Posted 10/14/2009 4:02 PM (GMT 0)
Tony,
Try to do a search for Prostate Oncologists; they are very difficult to find. The PCRI use to have a list, but discontinued it. The only list I have found is on USTOO and contains less than 20 names.
I have bee treated by Urological Oncologists and they definately are not prostate specialists. Many medical oncologists treat prostate cancer, but don't specialize it in. I'm talking about oncologists that have prostate cancer as their speciality and only treat prostate cancer. I'm talking about oncologists that see hundreds of prostate cancer cases every year from diagnosis to treatment of advanced PC.
There are hundreds if not thousand of surgeons doing prostate cancer and any post from a city asking about surgeons wll result in 4 or 5 recommendations. Maybe you wll get 4 or 5 recommendations for a prostate oncologist across the entire US.
The Director of the PCRI told me that there were about 20 oncologists in the US specializing in PC. I spent 10 years seeing various doctors and only heard about prostate oncologists last year, and that was from my wife's oncologist, not from anyone in the PC industry.
JohnT
Posted 10/14/2009 4:30 PM (GMT 0)

In a little over two weeks time I shall be having my HIFU treatment. Just some general comments and pre-treatment information, for those who may be interested.

I think that the information in the website above fits in pretty much with my assessment of HIFU. The machine manufacturers websites do tend to paint an over-rosy picture although to be fair there generally is mention of side-effects, but perhaps these are not made sufficiently clear. I assume that anyone with a computer and the interest/ability to access the Internet would probably have done a fair amount of research on HIFU before deciding to go along that route, aside from talking with the surgeons involved, and gaining as much information as possible from people who have experienced HIFU treatment. For those who don't have Internet access ability, and who might be purely relying on brochures from the machine manufacturers, it is concerning that they might not have obtained the fullest picture about side-effects.

Two days ago I spent an hour with a urological nurse who explained in great detail about what I might expect following the HIFU procedure, including the possible side-effects. No attempt was made in anyway to play down the risk of the side-effects or, in the case of some of them, their potential seriousness. I was also given documentation which detailed everything in the same 'open' manner.

I have been told that I should experience little pain after HIFU, but my penis and scrotum may be swollen for a while. I shall be on anti-inflammatories and antibiotics for a week following the procedure. Apparently, the suprapubic catheter is not particularly uncomfortable, but it can be rather annoying. It will be in place for anything between a couple of weeks up to maybe 5-6 weeks. I will have to demonstrate that I am able to urinate normally and reliably before the suprapubic catheter is removed.

I was taught to self-catheterise in case of blockages occurring after the suprapubic catheter has been removed. Self-catheterisation turned out to be very straightforward and only mildly uncomfortable. Much better than the possibility of acute urinary retention!

The documentation included percentage likelihood of things like UTI, epididymitis and stricture in the shorter term, and ED and incontinence in the longer term. The figures were based on the experience of several hundred patients who have had HIFU with this particular consultant. It was made absolutely clear to me that these were statistical figures and, if I should be unfortunate, things might not go so well for me. I am well aware that longer term oncological outcomes are not yet proven with HIFU, and this knowledge formed part of my decision-making process.

I completed a five page questionnaire relating to my general health, functionality, urinary capability, sexual capability, etc. I will be asked to complete further questionnaires at regular intervals after the HIFU procedure.

Probably no more information from me until after the event on 30th October.

Cheers,

Jeremy

Posted 10/14/2009 4:41 PM (GMT 0)
Jeremy, great detailed report, that's what we want to hear.

I have been on a suprapubic catheter for 15 days now, it flows well. Once the single stich was taking out on Monday, it has healed up nicely and pain is minimal late in the day. My wife cleans the area where the tube comes out nightly. The doctor said it was no longer needed to keep it in gauze. I am expected to have this catheter in place, now they are saying till the end of December, possibly to Mid-January of 2010. You should do well with one in place, for that length of time, a foley catheter coming through your penis gets real uncomfortable. Plus, I am sure this must be part of your doctors thinking, ridding you any bloody or other body junk will be easier with the SP cath directly, instead of restritcing it through a catheter tube through your narrow urethra.

Please keep us well posted like this, very informative.

David in SC
Posted 10/14/2009 4:44 PM (GMT 0)
Thanks for your information, Jeremy, and good luck with your procedure if you don't come back here before then. If you don't, we'll see ya on the other side..
Posted 10/14/2009 6:07 PM (GMT 0)
John I am opening a new thread for the discussion of how many good prostate cancer oncologists there are in the US. But I will say here that I cannot disagree more with the post above. The definition of good has little to do with whether that's all they do or not. But let's move that to a thread dedicated to this discussion.

Tony
Posted 11/2/2009 9:28 PM (GMT 0)

2nd November 2009

I had HIFU treatment with Mark Emberton in London on Friday 30th October. The procedure went very smoothly.

Despite uncertainty regarding the extent and location of PCa in my prostate, I eventually opted for hemi-ablation rather than full gland ablation. This decision was very much based on recommendation by Mark, who felt that full gland ablation was not necessary, bearing in mind the results of his template guided biopsy. Time and future testing will tell if this was the best decision, but I have trust in Mark's experience and his caring attitude.

After admission there were the usual procedures - blood pressure, ECG, blood sample, urine sample followed by a Fleet enema.

Mark went carefully through the consent form taking care to clarify the risk factors.

The HIFU procedure was carried out under general anaesthetic and took about 1.5 hours as I had hemi-ablation. It would have been nearer to 3 hours for full gland ablation. I stayed in overnight - I didn't have the treatment until about 9.30pm - and was discharged at 9.45 am the next day. I didn't sleep at all during the night, probably because of the anaesthetic, but I felt OK. Prior to discharge I was taught how to use the suprapubic catheterisation set-up and how to clean and change the dressing where the catheter exits my abdomen. I was prescribed Ciprofloxacin 500mg antibiotic tablets, Diclofenac sodium 50mg anti-inflammatory / analgesic tablets, and Mil-Par laxative to soften my stools.

I slept well on my first night at home and not quite so well last night. I use a larger catheter bag at night which I locate in a bucket at the side of the bed. This makes it easy to locate and carry around and is additional security in case of leaks (which are unlikely).

At this time - the 3rd day after the procedure - I have not yet been successful in voiding naturally. Just a few drops now and then, which feels like quite an achievement! For most of the time I'm still relying on the suprapubic catheter to empty my bladder into a smaller bag attached to my leg.

Mark assures me that once my prostate starts to settle, normal urination will become easier. There is little discomfort unless I turn off the catheter and allow urine to accumulate in my bladder. When that happens, I quite quickly develop a feeling of lower abdominal 'bloating' accompanied by an increasing degree of discomfort. The bloating feeling is probably worsened by the fact that I've been experiencing constipation, which is only now beginning to resolve itself. First decent B/M at midday today which was a considerable relief!

There is intermittent stinging in the end of my penis which can occasionally become a little painful. This is referred pain from my inflamed prostate.

Managing the 'pipework' of the suprapubic catheter is quite straightforward, although a little fiddly on occasions. The main irritating factor is leakage from around the catheter where it exits my abdomen. I'm sure this leakage is only very small amounts but it is sufficient to be rather annoying. Understandably, when I turn off the catheter the leakage is more noticeable because of a build-up of urine pressure in my bladder. The urology nurse confirmed that this is normal and recommended using incontinence pads to absorb excess moisture. I hadn't realised that the design of incontinence pads means that they tend to absorb moisture and remain relatively dry on the surface, thus reducing the potential problem of skin excoriation.

I'm wearing Level 1 Tena pads to catch the few drops that emerge naturally. Hardly necessary yet.

I'm tending to feel a little fatigued, which I guess isn't surprising. Movement is OK, although bending over creates a certain amount of pressure in the lower abdominal area. I went out today and had a short walk. Provided the leg bag is correctly strapped in place, walking doesn't present a problem.

My urine is generally clear, but with a small amount of bloody debris from the ablated prostate.

I had a routine telephone conversation this afternoon with a urology nurse. She said that because I have had hemi-ablation the remaining tissue in the other half of my prostate will be swollen, which means that a normal voiding may take longer to achieve than if I had had a total gland ablation. She recommended that I use the catheter for the next 24 hours before turning it off again to try normal voiding.

Overall I am comfortable with the ways things are going so far. It will be nice when the peeing breakthrough happens :)

Jeremy

Posted 11/3/2009 1:26 AM (GMT 0)
Jeremy -- thank you for the update. It's good to have someone here taking the HIFU journey. Good luck and please do keep us posted.
Posted 11/3/2009 1:30 AM (GMT 0)
Good for you, Jeremy,
Now on to the healing. I hope for a very detailed reporting from you with your experience. I would have thought that a partial ablation was out because of your 4+3=7 Gleason sum. But this will be a great learning experience for all of us.

May peace be with you, always.

Tony
Posted 11/3/2009 1:36 AM (GMT 0)
Jeremy, very interesting posting about your hi-fu journey. Good details there. I am on day 33 with a suprapubic catheter, so your notes on that subject caught my eyes. Wish you well as you continue to heal. Please keep posting so we can see how you are doing.

Sound good so far.

David in SC
Posted 11/3/2009 3:51 AM (GMT 0)
Jeremy, thanks for coming back and posting --- I'd been wondering where you were at. I'll be watching for updates.

Sheldon AKA Sleepless
Posted 11/3/2009 10:31 AM (GMT 0)
Thank you for your nice comments folks.

Tony - the decision whether to go 'whole gland' or 'partial gland' was a difficult one. Obviously, the theoretical advantage of hemi-ablation is an improved chance of erectile functionality and continence. The disadvantage is equally obvious; the possibility that tumours may be missed. I had originally decided to go for full gland ablation because there appeared to be evidence (some of it conflicting between the tests done privately and those done on the NHS) that I had 4+3 PCa in both sides of my prostate. However, Mark's detailed template guided biopsy showed one side of my prostate to apparently be clear. Mark was so obviously genuinely concerned at the idea of doing what he saw as being excessive and unnecessary ablation that I went along with his recommendation. If there is still PCa remaining, confined within my prostate, it will be necessary to have another HIFU. Mark is championing this concept of focal ablation, but knowing the man I do not think that his enthusiasm for this approach would overweigh doing what is best for his patient in terms of dealing with the PCa. It has been quite a leap of faith for me, and time will tell if it was a good decision or not.

Slept well last.  Today is the first day of the rest ........... etc.  Onwards and upwards!

Jeremy

Posted 11/7/2009 2:47 PM (GMT 0)

7th November

 

It is a week now since I had my HIFU treatment, and perhaps it's time to assess the last seven days.

 

My experience with HIFU has not been one of - 'out on the quad bike the next day; peeing normally from the word go; sex like it never was before'.  Alright, I'm being facetious, but occasionally I have seen comments implying that recovery from HIFU is little more than getting over a common cold.  In my case anyway it hasn't been that simple but, having said that, it really hasn't been at all problematic (so far!). 

 

Pain.  Nothing that I could honestly call pain.  A certain amount of discomfort from the incision in my abdomen for the suprapubic catheter, but that rapidly settled down.  Some distension in my lower abdomen.  And the ' knives'.  Not my description, but one used by someone posting elsewhere with experience of HIFU.  This is the stinging/pricking feeling in the end of my penis.  It has occurred at a fairly low level of discomfort on a number of occasions during the past few days, but it is when attempting to pass urine that it really comes into its own!

 

It truly isn't sufficiently bad that I would call it pain, but there is a certain quality to the discomfort that makes it a peculiarly ... ... er ... ... interesting.  I guess as much as anything it's because of where it's located which is a pretty sensitive area.  I understand that some people do not experience this at all; others do and I have no way of assessing how my discomfort compares with theirs.  I understand that it is referred pain from the prostate area and, because I had hemi-ablation of my gland, it's possibly worse than if I had had a full ablation, as there is more inflamed tissue remaining.  I'm assuming that as the inflammation in my prostate subsides, the 'knives' will decrease.

 

Other negative aspects.  The suprapubic catheter and urine bags take a little bit of getting used to, but one soon gets the hang of things.  I am now no longer using a bag, which makes things a lot easier.  I still have the catheter in place but I attempt to pee normally as and when I can, although with only very limited success so far.  If I feel my bladder is filling up too much I just open the clamp on the end of the catheter and void into the toilet.

 

I no longer have a dressing at the point where the catheter exits my abdomen.  There is still a little bit of leakage at this point (mainly urine; a little bit of blood) so I pull up the incontinence pad a little higher than it would normally would be worn so that it covers that area.    I tape down the catheter tube onto my abdomen a couple of inches away from where it exits, just to prevent any tugging. 

 

At the moment incontinence is not an issue, although there are just a few drips on the pad.  I am assuming that as my normal urinary function improves so also will the degree of incontinence.  However, I'm reasonably confident that this will be relatively short lived.

 

I can't really comment yet on erectile capability, because I have been effectively neutered ever since being on hormone treatment.  My libido is non-existent and therefore erectile functionality isn't currently an issue.  Hopefully, once my libido returns, I'll be able to report positively on function.  Having said that, yesterday evening I was able to produce definite stirrings as the result of visual stimulation.

 

I've felt a little bit fatigued this week, but not excessively so.  To a certain extent that was the case previously anyway, because I'm still feeling the results of my three months of hormone treatment, despite the fact that technically it finished five weeks ago.  I've been out raking leaves, general tidying around in the garden, going into town and doing the shopping, in fact all of the normal type of daily activities, without getting into anything which involves heavy lifting or extensive bending (too much bending tends to be a little uncomfortable in the lower abdomen).

 

I've been sleeping well at night.  In fact, considerably better than I was before HIFU, when I was getting up far too many times during the night as one of the side-effects of hormone treatment.

 

Constipation has been a pain in the a-s!  Again, this is at least in part a hangover from my hormone treatment.  It was probably exacerbated by the general anaesthetic.  Being constipated when your lower abdomen is already rather tender isn't ideal, but I've been taking the necessary measures to combat it with a certain amount of success.

 

And that's about it so far.  I'm passing small debris in my urine and the occasional larger, bloody chunk which gives me great pleasure because I tell myself that I'm getting my own back on the Pca!

 

The catheter will need to remain in place until I can demonstrate that I am able to pee freely and routinely, and that I am emptying my bladder fairly completely.  I'm not sure how long that will be, but it could be several weeks more.  It just depends how things go.

 

I have a routine MRI scan in a few days time, and a PSA test in three months.

 

In summary, I am obviously not able to compare my experience of HIFU treatment with surgery or brachytherapy (the other two options that I was considering).  Time will tell how successful HIFU has been in terms of retaining continence and erectile function and, of course, in successfully eradicating my PCa.  So far, I certainly have no regrets in choosing HIFU.  More later.

 

Posted 11/7/2009 3:21 PM (GMT 0)
Jerry, good update on your treatment. Yeah, don't be in a hurry to rid yourself of the SP catheter. I have had mine in place for 38 days now, and it beats the alternative of severe pain from blockages and/or retention. I too, found out that it stayed drier better and cleaner by not having gauze taped around it. I use a disposable leg strap (lightly adhisve) to keep the "Y" portion of the exterior part of the catheter strapped to my thigh, and always allow some slack in the tube to allow leg movements and sitting down in comfort.

You went through a lot of trouble to avoid admitting to the word "Pain". Now I realize that pain is a very subjective word, and everyone has a different level of pain tolerance. But on the other hand, pain is part of the healing process, and it is normal, and its nothing to be feared.
If something hurts, its called pain. Some men, not saying you, like to act tough and say nothing hurts and that they don't need pain meds, etc. If one is in pain, and avoids pain meds, all they do is to retard their own healing process, and get to feel the misery of untreated pain at the same time.

I am glad you are doing so well. I would be fearful of seeing chunks of my former prostate passing through my urine or catheter bags, but I know that comes with your method of treatment. I rather like knowing that I never ever met my prostate gland, not even when he was a healthy lad. When it was removed, I was so glad they didn't give it back to me in a glass jar. lol.

Hopefully some of the painful urinary issues will go away over time. For the burning part, pyridium is a commonly presecribed drug for that purpose. It's inexpensive, even here in the states. It will stain anythng the urine touches with the tinge of orange that won't come out in the wash, and can even effect contact lens and tear ducts. But still, it works excellent for the burning.

Please continue your great posts.

David in SC
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