It has been several weeks now from surgery. I am not doing well. Very painful urination with some hematuria. The supra-pubic catheter comes out in a couple of days. That will be a mixed blessing since I just developed urge incontinence yesterday. The pain isn't just during urination. I am imagining a problem in the prostate which just isn't healing, at least quickly. I don't know if my local urologist can deal with these post surgery issues and my out of network surgeon is a thousand miles away. I was hoping for a routine recovery but am dealing with pain and now incontinence. I did some research:
Hi WSO. I had HIFU done in May of this year and only had a catheter for 10 days. 10 lonnnng days, but I survived. Prior to the HIFU, I had PVP done by the HIFU doctor. After having the HIFU procedure done out of network, I made an appointment with my in network Urologist for follow-ups. He is a surgeon and was totally understanding with my HIFU decision. So no pain, no discomfort (except the catheter) and a good urine stream.... until September. In Sept, I started having trouble with urinating and pain. Had my urologist do all the tests and he found calcified tissue in my urethra and prostate. Very painful. But he did a TURP and now all is good. No incontinence, no ED, no pain, NO cancer. Yes, I would do it again.
Thanks for the reply. I had TURP for BPH ten years ago so I was a ready candidate for HIFU. I'll keep your history and the TURP fix in mind if I develop a problem down the road. My urologist/surgeon isn't at all understanding about HIFU. Maybe I need to find another urologist.
What a difference a couple of days make. I finally got the infernal suprapubic catheter removed. All pain, other than stinging urination, gone. No more excruciating spasms and attempts to void an already empty bladder. No more feeling impaled when sitting down. Urge incontinence all but gone (lasted the night without external catheter or other means; did have to quick step it a couple of times but no accidents). My only complaint now is painful urination but saw this from a UK HIFU website: "Urinary symptoms such as stinging when passing urine and poor flow of urine may be experienced in the first 3 months following HIFU" So, I just need to be patient (has been 5 weeks now) and I'll ask my urologist to prescribe pyridium as a urinary tract pain reliever. My local urologist didn't want me to go the HIFU route and exhibited a bit of "I told you so" attitude when I laid out the complaints I listed above. I remain hopeful that things heal up with time and that the HIFU procedure succeeded in eradicating the stage 2 cancer.
Dear WSOPeddie. Just wondering how you are doing today? My husband has Gleason 8 - two small tumors (Tc1's) in one lobe. He has been accepted for focal HIFU in Germany or radical prostatectomy here in US - both options are in April. He is still deciding what to do. Thanks for any feedback you may have for us.
I am doing fine now almost 2 1/2 years later.. No problems with incontinence and my sexual function hasn't been adversely effected. The biopsy revealed tumor activity in only one half of the prostate -- 5 of 12 cores were positive, Gleason 8. Bone and CT scans were clean. After discussion with the HIFU surgeon I agreed to 'total gland ablation' rather than 'focal ablation'. Better chance of zapping tumor growth or potential in the 'clean' half. BTW, my HIFU was performed in SF by Dr Michael J Lazar who is based in Santa Rosa, CA. It was out of pocket for me but now I hear that Medicare may now be at least partially covering the cost of this. One thing I should mention is that I had TURP (roto rooter) surgery for BPH ten years prior to HIFU surgery. That might be a requirement for HIFU surgery. HIFU is available at various places around the country now.
Thanks so much for the information. My husband had 12 cores taken with cancer found in two cores from the left lobe. One had 20% cancer and the other 30% cancer and were graded Tc1's. Seems like focal ablation should be enough (the doctor plans to take the whole lobe to be safe), but we have read that if you have cancer in one lobe, it is likely you may have it in the other, so your doctor was smart to do a whole gland ablation.
We will ask the doctor in Germany what he thinks. We are quite keen to go there since Dr Thuroff has been doing HIFU for 22 years and has a great track record. The TURP, which will be done same day beforehand if needed, costs about $5,500 and the HIFU just over $6,000. I say "about" since it depends on the exchange rate.
So even if Medicare kicks in, I have read (not sure if true) that the most they would cover is $7,000. I have heard that United Healthcare will cover part of the treatment if out of the country, but Medicare won't. If this is so, we would still be better off having the treatments in Germany, and trying to get reimbursed whatever we can from United Healthcare. We haven't seen any HIFU in North America for less than $25,000 and that does not include the TURP.
In any case, price is not the main concern for us, experience and results are tops. It is so wonderful that you had Dr Lazar. We have read really good things about him, and that is probably why you have good results. We hope they continue!
Yeah, I paid 25K in 2016. Sounds like you have found a good bargain with a good surgeon. You might want to research 'supra pubic catheter' if you haven't already. It's a bother, as my original post indicates, but not a show stopper.
Before doing a TURP I would encourage you to look at the HOLEP procedure. You can Google it or look at the Mayo Clinic website as it is their preferred procedure. Because the learning curve is up to six months most urologists don’t offer the procedure or even make their patients aware of it. I cancelled a scheduled TURP after I read the Mayo information. Tissue removed by the laser is not destroyed and is sent to a pathologist for study. That’s how I found out I have Advanced Gleason 9 Prostate Cancer.
Thanks for the info. The doctor has said that if my husband needs no TURP (and from what I understand they nearly always do TURPS in Germany before HIFU - they worry about calcifications which can make it difficult to hit the tumors so they like to eliminate them before starting) he will end up with the suprapubic tube which could be in for some weeks. The doctor said it could be removed by our local urologist when we get home. If TURP is done same day, but just before the HIFU, my husband will still need the suprapubic tube, but it was suggested we stay a few days in Germany (the Alps are not too far away) and the doctor would remove the suprapubic tube before we leave to some back to the US after he makes sure my husband's "water works" are functional. The doctor says the suprapubic tube is without a urinary bag - just with an catheter valve. Is that what you had? We really do appreciate your info. We had been thinking that HIFU with anything above a Gleason Score 7 might not be worth trying, but you have been an inspiration to us, so thank you!
Well the supra-pubic catheter (SPC) has to connect to a bag somehow. This plumbing is standardized. Odd that you would have to provide this collection bag. The tube has a shut-off valve going to the bag, which allows a trial void through the normal urethra flow path, as the doctor mentioned as to being functional. I'm skeptical that he would be ready for this removal unless you plan on staying in Germany for at least a week (hard to predict). I left after my surgery and came back home (to a state that has no HIFU surgeons). My local urologist equipped me to do the void trials. Removing the SPC was done by a nurse, very similar to how a foley catheter would be removed. I flew home with the SPC in place. Where the tube exits can leak a little blood immediately after the surgery so have something ready to deal with that.
The suprapubic tube is inserted in such a way that the bag is not needed. It is optional from what I have read and is described as being more comfortable. I will put a link here to a diagram to show what it looks like. google.com/search?q=suprapu...
Yes, the doctor did encourage us to stay for a week following treatment so he can remove the catheter and make sure all is well before we fly home. If it is not, he will put a catheter in for travel home in case something should go wrong. One other fellow we have met, had this done 12 years ago - same doc and hospital and he opted to fly home with the catheter in. We will just have to see. The fellow we spoke with is cancer free twelve years on, so although it was not expected to stay on for a week after the procedure, we hope it is worth it - just following the doctor's requests. Our local docs here in Maine are very anti HIFU, so we don't know how we will find one to remove the catheter if my husband has to come home with it, but hopefully we can find someone. Thanks again for all your suggestions - very helpful.
Your local urologist may not appreciate HIFU but I am sure that he and his nurses have dealt with patients requiring a supra pubic catheter for other situations. They will have have plenty of experience removing this type of catheter. If you look at images in the link you sent there is one that shows the collection bag hooked up. Without that the bladder will get uncomfortably full not draining, especially overnight. Trust me on that.
Thanks for that advice - very helpful. I am not sure if this will happen to us, but when the other gentleman I spoke of came back from Germany to Chicago where he lives, he asked 7 different urologists to please help him remove the catheter. None of them would help him once they heard he had been to Germany for HIFU. Not sure if they were worried about lawsuits or what. He ended up getting a recommendation for one from Cleveland Clinic's Maple Leaf in Toronto. They had had a patient from Chicago who found a urologist to help him and they provided a helpful recommendation. My husband's GP told us there was no way he should be considering HIFU - that it is experimental and would not work. We hate to defy him, but in the end my husband must choose a solution he thinks is right for him. We do know, based on the experience of others, that we will need to have a urologist lined up before we go away if we can find someone. Not easy I guess. So glad yours was helpful.
Prostate tissue ablation (another name for HIFU) was approved by the FDA in 2015. Nothing experimental about it. I'm an engineer and chose HIFU over the radiation treatment I was recommended as I believe radiation is a blunt instrument as opposed to HIFU. With HIFU the apparatus provides ongoing feedback as to where in the prostate it is focused and even to what temperature the tissue that is being ablated reaches. BTW I was given an ADT (eligard) injection in preparation for the radiation treatment I was supposed to get. It shrank my prostate from 34 to 27 (units?) when I received the HIFU surgery. That might be something for your husband to consider. I regret getting the six month shot. I think a one month shot would have been more than adequate to prepare me for the HIFU. Maybe talk to a HIFU surgeon about that.
I agree. What I can't understand is that there seem to be less radical treatments available, but they are reserved after all else has failed. Example, we asked if immunotherapy could be used and the urologist said it is only used after radical prostatectomy, and radiation have been tried and failed. He then said it would only give a stage 4 prostate cancer patient an extra three or four months to live in any case. Given how stressful and damaging these treatments could be, I am not totally surprised. Same with HIFU. It is used as salvage therapy after a person has had all the radiation they can tolerate (and radiation can lead to cancer of the rectum or bladder.) Why wouldn't they try the HIFU in the first place? Maybe the person with prostate cancer has a case that is too advanced when first discovered? There is so much about this that is really hard to understand. Given the differing opinions in the medical profession, I think they still have questions too.
One thing that does worry us about HIFU is that with a radical prostatectomy, the seminal vesicles are removed and some lymph nodes. Given the multi focal nature we are told prostate cancer has, it does leave a concern that in HIFU if only focal ablation of the prostate is done, what about surrounding tissue?
I did read that one HIFU patient who had a rising PSA went back to have further treatment when cancer appeared in his seminal vesicles on an MRI, so I guess HIFU can be used for that. I just hope the doctor treats anything he thinks is suspicious.
One thing we have learned is that no treatment has a cast iron guarantee of success. Our Senator from Maine, Angus King, had a radical prostatectomy in July of 2015 and before the end of 2018 was told the cancer had returned. Now he has to have nine weeks of radiation. He must have had access to some of the best doctors in the world, but even they could not promise success. But we have to be optimistic.
Dr Christian Chaussy and his partner, Dr Stefan Thuroff, the doctor my husband will have, wrote a fascinating report about HIFU. In the report (Page 23) they explain a theory that HIFU may kick start an immune response against prostate cells that could be remaining following treatment (cancer cells apparently can be microscopic and easily spread.) If this theory is true, it is one more good reason to consider HIFU. Here is the report if you are interested. As an engineer, you will probably be able to understand it better than I can! Thanks again for your suggestions. researchgate.net/publicatio... THuroff and Chaussy
Can you give an update? Did your recovery take much longer . Were you eventually satisfied with the procedure? I am now three weeks post HIFU and approaching 2 weeks post catheter. Still knowing that healing is going on with similar issues.
I was fine with regard to urination issues within a few weeks of having the catheter removed. Initially my PSA went to undetectable. Now almost five years later it is at 1.4, having slowly increased. I'm satisfied with the procedure. No problems with impotence or incontinence. I just have to monitor the PSA level. I might need an axumin scan before long to see what is going on. I've had a good quality of life for five years and am now 71. Good luck with your recovery.
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