HIFU Failure....twice
Posted , 4 users are following.
I had HIFU in Mexico with the most accclaimed doctor, Steve Scionti from Hilton Head & Boston, he flew down to meet us in Mexico, the hosoital was perfect, staff was lovely, We were in at 8AM and then on the beach having lunch at noon, feeling a bit grroogy with a foley cathereter. If only that would have been the last of it, My first PSA was ,2, then ,3, then ,4 Well at least it wasn;t 8. like it has been, but the rise gave ma a knot in my stomach made of worry. It continued to rise until it was back to 8, this took 8 years. Reluctantly I went back to see Dr. Scionti, who is now in Sarasota, Florida, he has his own health problems now, he has Graves disease, I could feel he was uncomfortable and so was I, He put me on Casedex for 3 months, to keep it from growing . After 3 months I went back in and he gave me a biopsy of 12 needles, which shocked me, I was unhappy about that as there was no question my cancer had returned, (Later I would request a copy of this and he ignored my request..... how do you guys feel about that?)
So, the next day I had another HIFU, he announced that he had gotten it all, I was given the catheter & bag to void in and went home. I noticed very little grey in the bag, my first HIFU had a lot of cooked tissue. Once again, no pain, no loss of function.
After 3 months I had a PSA.....it was 13.50 SHOCK, Scionti said sometimes the gland takes a while to heal and could put out high readings,... wait and test again. So, 4 months later I test again....16.88 So, in 7 months since HIFU my PSA has doubled.
What could have caused this? The biopsy? Dr. Scionti wants to give me a bone scan now, to see if it escaped the gland. Wouldn't his MRI guided ultrasound have found that - if it was the case? I really know very little. Does anyone have any thoughts on what I should do? I am 72 y.o.
0 likes, 3 replies
geoff90305 Dawnay
Posted
Sorry to hear that the HIFU procedure did not work for your prostate PCa. I recall reading a few papers on HIFU saying they were great for PCa that was localised in one or two spots, but not if the PCa was close to the capsule wall, as the procedure could not get closer than a few mm, where the PCa could be hiding.
As for your doctor, well, not sure what to make of him. My general doctor and urologist makes a point of providing me with a copy of everything, as they consider my knowledge of the situation empowering and we both do not work in a vacuum.
Did you ever have an MRI of the prostate before you had the first HIFU procedure? if so, what was its findings? Because of the time you may have had PCa active, the CT/PET scan is vital to know if the PCa escaped and is resident somewhere in your body. Also, if you can, I would have a mpMRI on a 3T machine asap and depending on what it reports, have a biopsy to verify results, so YOU can make a decision where next. I would be looking for a new doctor as well
The advantage of the HIFU, if it fails, you can still have the prostatectomy and remove the prostate and or have radiation if you do not want surgery.
kenneth1955 Dawnay
Posted
I'm sorry my friend that it did not work for you. Any doctor should give you any information that he has done to you. My doctor tells me everything and If I ask for copy s I get them. a HIFU only works like Geo said if the cancer is still in the shell. He may have not gotten all of it when he did the first that may be why you PSA was low and overs the year. I would get all the information from him if he will give them to you and see another doctor Good luck Ken
Dawnay
Posted
HIFU did not fail !!! I've had a F-18 PET CTscan of all of me and they did not find any prostate cancer.... nor any prostate or seminole vessels, Dr. Scionti cooked all of it until there is no sign of it whatsoever. This F-18 PET scan is the most advanced, most expensive (of course) way to look for cancer, very few hospitals even do the test as it takes a special drink that you get overnight from New Mexico. I had this test by a different doctor.
Anyway, I am sorry that I even wrote the above post... Dr. Scionti said the PSA can be wrong for up to seven months after HIFU, and it sure looks like that is the case for me... but I will get another PSA test in a week just out of curosity.
HIFU is wonderful - that's all there is to it. But... still be careful of the doctor you chose.... as with all modes, experience counts.