Official HIFU thread

lauriejo · Posted: Sun Oct 25, 2009 9:41 am Post subject: Re: Official HIFU thread

Our insurance company, ConnectiCare denied coverage, but at the same time they sent us everything we would need to appeal. International HIFU told us this would happen as there is not a code for HIFU in the U.S. We have appealed the decision and resubmitted the receipt from International HIFU along with a terrific letter from Dr. Scionti and are awaiting a response. My husband spoke with many men that had undergone HIFU before making the decision to have HIFU treatment, all that were reimbursed seemed to have had either Blue Cross or Aetna. We have resigned ourselves to not getting reimbursed, but if we do it will be icing on the cake. Either way it was worth every penny.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09 Dr. Scionti, PSA .1 @ 3 mos. post hifu

glp · New User Joined: 25 Oct 2009 Posts: 3 Location: Arizona

Thanks Lauriejo
We realize that the HIFU won't be covered, but that isn't going to prevent us from going forward. We spoke with Dr Scionti today and his suggestion is to turn in an International Claims form after the procedure and see what happens. We are scheduled for Dec. 18th am in Nassau. My husbands prostate cance is not aggressive and we are grateful to have something like this to turn to. I hope others are able to locate these sites to know what a great option there is!

Age 57 PSA 4.5 Between T1c and T2A Gleason score 6
3 cores out of 12 possitive left side

JerryB · Posted: Mon Oct 26, 2009 4:29 am Post subject: Re: Official HIFU thread

We have a similar but different situation here in the UK. Because of the National Health Service, the majority of people do not have private health insurance. 'Standard' procedures for treating PCa, including surgery, EBRT, brachytherapy, etc are all available free of charge. However, HIFU has not yet been fully approved by NICE (National Institute for Health and Clinical Excellence) the body which determines whether drugs/treatment are safe and suitable for use within the NHS, and also offer 'value for money'.

I am having HIFU treatment this coming Friday, and I have been told by my consultant that he has treated many NHS patients from around the country. Unfortunately, the county I live in (Hampshire) and another county (Oxfordshire) have a reputation for being difficult when it comes to approving funds for HIFU. I still have an application in place, but because time was going by I decided to fund the procedure privately myself, with the hope, possibly, of obtaining retrospective NHS funding later. Not very likely I think!

As with Lauriejo and glp, I still have no doubts about going ahead with HIFU despite having to pay for it myself.

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.

lauriejo · Posted: Mon Oct 26, 2009 6:21 am Post subject: Re: Official HIFU thread

Jerry, Is the cost for HIFU the equivalent of $25000 in the UK?
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09 Dr. Scionti, PSA .1 @ 3 mos. post hifu

JerryB · Posted: Mon Oct 26, 2009 6:49 am Post subject: Re: Official HIFU thread

If we work on the basis of the exchange rate being about 1.6, $25,000 equals £15,600 approximately.

The fee for my 'on the day' treatment (surgeon's fee, anaesthetist's fee, HIFU equipment, urology nurse fee, overnight room costs, theatre costs, and routine tests on admission) is £12,000. However, a couple of consultations prior to the treatment cost £400 in total, and the 'pre-and post-assessment by a clinical nurse specialist' cost £300.

I am excluding the fee of the £2900 paid for a template guided biopsy, as this need not necessarily be regarded as being part of the HIFU treatment. However, it does allow,supposedly, a much greater degree of accuracy to be obtained about the extent and burden of the Pca. A multi-sequence MRI scan is £980, but I did not have this as I had had a Tesla MRI scan on the NHS at an earlier date. It may be necessary/desirable to have multi-sequence MRI scan a month or so after the HIFU treatment.

All in all, as you can see, the cost does mount up. Excluding the template guided biopsy, I guess the total cost in the UK isn't much different from the US. No doubt you can understand why I am somewhat irritated that men in other parts of the UK appear to be up to get this treatment on the NHS but, because of where I live, that is proving to be difficult/unlikely.

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.

lauriejo · Posted: Mon Oct 26, 2009 7:12 am Post subject: Re: Official HIFU thread

Jerry, My husband and I have friends in North Yorkshire. The husband is American and the wife is British.
Good luck with your procedure and the reimbursement. It would make common sense that insurance should cover a procedure that costs less and has the same success rate as surgery/radiation with less complications. It makes me wonder what the hold up is.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09 Dr. Scionti, PSA .1 @ 3 mos. post hifu

lauriejo · Posted: Mon Oct 26, 2009 7:13 am Post subject: Re: Official HIFU thread

Jerry, My husband and I have friends in North Yorkshire. The husband is American and the wife is British.
Good luck with your procedure and the reimbursement. It would make common sense that insurance should cover a procedure that costs less and has the same success rate as surgery/radiation with less complications. It makes me wonder what the hold up is.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09 Dr. Scionti, PSA .1 @ 3 mos. post hifu

lauriejo · Posted: Sat Oct 31, 2009 9:42 am Post subject: Re: Official HIFU thread

JerryB, Just wondering how your HIFU procedure went yesterday and how you are feeling. I assume it is an out-patient procedure in the UK as it was for my husband in the Bahamas? I hope all is well.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09 Dr. Scionti, PSA .1 @ 3 mos. post hifu

JerryB · Posted: Sat Oct 31, 2009 12:56 pm Post subject: Re: Official HIFU thread

Hi lauriejo

Everything went well yesterday from my perspective, and the consultant was happy with what he calls the technical aspect.

I was in overnight as I didn't have my HIFU treatment until about 8.30 p.m. For some reason - probably the anaesthetic - I literally didn't sleep a wink last night. By about 3.30 a.m. when I realised I wasn't going to get to sleep, I discussed the possibility of a sleeping tablet with the duty nurse, but we both decided that taking it at that time would probably leave me feeling groggy in the morning. Anyway, I'm sure I shall sleep well tonight.

I'm a bit too tired at the moment to write much in detail, but will report more fully before too long.

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.

JerryB · Posted: Mon Nov 02, 2009 4:05 pm Post subject: Re: Official HIFU thread

2nd November 2009

I had HIFU treatment with Mark Emberton 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 Smile

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.

problem · Regular Joined: 12 Sep 2009 Posts: 44

I have returned from my mini-healing-HIFU-vacation, it was glorious, sunny days and a great team worked on me, very professional traveling outfit.

All went very well, just a two hour procedure and then much catheter instructions. I was told I had a "textbook" procedure, I had full ablation, couldn't think of any reason to keep some of the gland.

After reading Jerry's post I agree with most, however, a few differences. I was told Not to try to urinate for 5 days. Maybe that's why he is having trouble. I was told not to so that I wouldn't be passing the particles out my penis, but rather it would all go into the bag, don't want any strictures. I see little grey particles of sludge and a few blood clots in the bag.

I have no leaks out the cath hole, just a tiny drop of sticky yellow puss or something which I was told was normal.

I was only prescribed Flomax and Detrol, and a few days of Cipro. I've had the normal bowel movements. I sleep fine on my side, but I am sleeping alone so as to not be nervous about the bag.

I also have no stinging, I guess I am lucky, as I have no complaints at all.

I had to buy new pants as I didn't anticipate the extra bulk around my waist from the new plumbing installed. The tube is interesting, adds a bit of time to my schedule, but it is manageable. Tomorrow I go back to work, I see no reason to sit on my butt at home, I can do that quite well at work and be paid. I was told to take it easy, no hard exercise for a month.

There is no way to thank you people for the impact your posts have made on my life, I cannot imagine being happier. The event was a non-event, just a couple hours asleep and waking up to a crummy tube, but mostly hopefully cancer free!

Dr. Scionti sure is the best I can imagine, I met him and his nurse the night prior and they went over everything I would encounter, they gave me instructions on what to expect and many phone numbers to call whenever I had a question, they stressed to call anytime, even at 3AM. I felt I was in the best of hands. His nurse phoned me the following day to check on me. I highly recommend this HIFU!

JerryB · Posted: Tue Nov 03, 2009 5:21 am Post subject: Re: Official HIFU thread

Hi problem,

Interesting to hear your experiences compared with mine. On what date exactly did you have your HIFU treatment?

The decision whether to go 'whole gland' or 'partial gland' was a difficult one. Theoretically, the advantage of hemi-ablation is an improved chance of erectile functionality and continence. The disadvantage is 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 on the NHS) that I have had PCa in both sides of my prostate. However, Mark Emberton were 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.

Before I left the hospital Mark said to me that it would be worthwhile trying to urinate normally once I got home. Maybe I misinterpreted or misunderstood this, because when I spoke with the urology nurse yesterday she implied that I was trying too soon and I should wait longer. As far as I'm aware it is unlikely that a stricture will result from trying to pass particles. It's probably just a matter of terminology, but I believe a stricture is a narrowing/hardening of the urethra which usually requires medical intervention. I guess the passing of particles could cause temporary blockage, which is why I have been taught to self-catheterise if this should occur once the suprapubic catheter has been removed.

You are fortunate in not having the stinging sensation in the end of your penis because this is probably the least comfortable part of the situation at the moment. I wonder if it's anything to do with the fact that I still have half of the contents of my prostate? I was told that the stinging is definitely referral of discomfort from the prostate area.

I'm going to sound like a smarty-pants (ha ha) in that I had foreseen that I would need loose pants (trousers here in the UK) to accommodate a urine bag strapped to my leg and to leave the area on my abdomen where the catheter emerges free from excessive pressure. I bought some jogging bottoms which do the job admirably.

As you say, the tube is 'interesting' and one does have to allow time for working with it. All in all, it's a small price to pay for a procedure that has otherwise so far been remarkably lacking in hassle. I'm fortunate; I'm retired, so I don't have to think about getting back to work. However, I'm sure that a reasonable amount of exercise is a good thing and, looking out of the window now, I have an abundance of leaves waiting to be raked up!

Please keep us informed about your progress.

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.

lauriejo · Posted: Tue Nov 03, 2009 8:32 am Post subject: Re: Official HIFU thread

Jerry B, It sounds like you made it through with flying colors. My husband also experienced the stinging sensation. It finally went away about a month after the procedure. He thought maybe it was because he had developed a UTI. I guess some guys get it and some don't.
Problem, That's funny my husband also forgot to pack long pants. We were in the Bahamas (88 degrees) and the only pants I could find to buy for him were heavy fleece pants. It all worked out though because he had brought a pair of long shorts, which actually worked better because all he had to do in order to empty the bag was lift the leg of his shorts.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09 Dr. Scionti, PSA .1 @ 3 mos. post hifu

problem · Regular Joined: 12 Sep 2009 Posts: 44

I was cooked on Halloween, 31st.

My concern over partial or whole galnd is, and it may be crazy, if you have the gene for PCa and there's still tissue in there, I would fear it starting up again. As the gland is not needed, I imagine you aren't thinking of having more babies, I say, get it out. I've heard this idea before, and when I did it stuck in the old brain.

It was the waist line in the pants that were too tight, they were lose, but not enough, my pants were long enuf. II hear on the news that I'm supose to be shopping!

I was in a bit of a daze when leaving the hospital as well, so Dr. Mark probably did say not to try to urinate, and you, in your zeal (I'm feeling that zeal right now) heard it the way you wanted to. I just hope that those chunks aren't in the tip. Maybe I don't really know the proper meaning of stricture, I thought it was blockage. Hope you can pee with ease tomorrow. I'll be going on Wednesday. But, I am not going to unclamp the bag for long, I don't want any stuck chunks! Just exercise the muscles. Have you been doing your kegals?

the stinging being referred pain sounds right on to me, and yes thankfully I don't feel a thing.

yes, exercise is good, just no heavy lifting, so leaves are in the agenda, come do mine, okay?

I'm quite the hit at work! everyone loves my bag! yew, right

Nice to have you two to discuss this with.

lauriejo, you are a champ, always trying to help out, thanks again!

problem · Regular Joined: 12 Sep 2009 Posts: 44

JerryB,

You haven't ever complained about the hormones you were taking, are they as bad as i hear Lupron is? What is the name of them? Just wondering if the ones you get in the UK are better than ours here. Are you still on them?
Clamped off early today and ran to the toilet, all is fine, but I'm back on the bag, Scionti said to only be clamped off an hour.
I am so relieved, must rename myself "no problem"

58 y.o. PSA 12. Gleason3+4=7 biopsy showed 5 cores positive

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