HIFU and recurrence

[billy1950]

Has anyone had HIFU treatment after a recurrence?

[AlanMeyer Moderator]

Hello Billy,

A year or so ago you posted that your PSA had been at 1 for some years with an initial radiation treatment in 2004. Is your PSA still around 1.0, or has it gone up? What is it now? If it hasn't gone up I wouldn't get any further treatment at this time. PSA after radiation doesn't always get ultra low and you may not actually have any cancer - in which case additional treatment would cause side effects, possibly quite nasty ones, without doing you a bit of good.

If you search Google for "hifu after radiation" (no quotes) you'll find some articles about it. Apparently it is sometimes done.

Good luck.

Alan

[billy1950 in reply to AlanMeyer]

Alan,

Thanks. The last three PSAs has been 1.4, then 1.29, and now 1.59. This has been in the last 6 months. The RO a few years back was talking about doing something if it goes above 2.0 or more. These numbers are confusing.

(I have been reading about HIFU lately which seems to be one alternative as well). Possibly as you say, I should be waiting on it...

Also, the urologist takes a different approach. He recently mentioned doing possibly cryotherapy. However, he didn't talk any specifics. With cryo I read that there are some possible SEs when doing it as salvage treatment after radiation. I am also wondering if I should be getting get an MRI and/or another biopsy?

Any thoughts would be appreciated...

Billy

[Hidden in reply to billy1950]

I had HIFU as a primary treatment 2 1/2 years ago. I consider HIFU to be a precision instrument compared to cryo, which in my opinion is not. I think cryo has fallen out of favor as a treatment option. Just my opinion.

[billy1950 in reply to Hidden]

Hi WSO,

Since the time of your HIFU (last 2 1/2 years) have you had any SEs? Sounds like you feel that HIFU is a better choice than cryo! I believe both would be recommended

after a recurrence.

Have you had any ADT?

Billy

[Hidden in reply to billy1950]

I had a six month ADT (eligard) shot in preparation for external beam radiation. I changed my mind and did out-of-pocket HIFU instead. The only side effects were from the ADT. I refused another ADT injection after HIFU. My PSA became undetectable after HIFU but it has since inched up to 0.3 where it seems to have stabilized. My tumor was in one side of prostate but I went with full gland HIFU ablation.

[AlanMeyer Moderator in reply to billy1950]

After radiation treatment for prostate cancer, you still have a prostate. It is still possible for the prostate to be infected by bacteria or a virus, or to be inflamed by other factors such as a urinary tract infection or crystal collections (maybe like kidney stones.) Some actions prior to a PSA test, including sex, strenuous exercise, a digital rectal exam, and perhaps other things, can also cause the PSA to go up. None of these are cancer. My PSA went up from .08 to .26 about seven years after my treatment, a factor of more than three. Then it eventually went down again. So the first big question in your case is:

1. Do you actually have prostate cancer? If you don't, you're done. No more work is required. If you do then the next questions is:

2. Is it local or metastatic. If it's local there are a number of possible treatments including more radiation, cryotherapy, and HIFU. If it's metastatic then, is it oligometastatic (i.e., spread to just one or a few places), or systemic - spread all around. Then the questions are:

3. What treatment should you try?

I think that you really need a good doctor to guide you through this, not an untrained guy like me.

It's my impression that many doctors are not experienced enough to handle these questions. You want a doctor that specializes in advanced prostate cancer. Recurrent prostate cancer is at least a major part of their practice, not just a problem that comes up once in a while in their patient population. They should have experience ordering and interpreting the latest tests, including mpMRI, various types of PET scans, PCA3, etc. They should know the latest research on oligometastatic disease and be able to offer an informed opinion about whether you have cancer, if so, whether it is local or oligometastatic or systemic, and what the best treatment options are.

If you don't think your current doctor(s) is/are up to snuff on this, it's time to go get a second opinion. I recommend finding an oncologist who, ideally, specializes in prostate cancer and is part of a team that includes medical and radiation oncologists and surgeons. The best place I know to find someone like that is at one of the university or similar level research hospitals. If you live in the U.S. I'd look at the National Cancer Institute's list of "Designated Cancer Centers". These are places that NCI considers to be centers of excellence. See: cancer.gov/research/nci-rol...

I hope that helps.

Best of luck.

Alan

[billy1950 in reply to AlanMeyer]

Hi Alan,

Thank you for the information! At this point I am not sure what the rise in PSA will reveal thus my wanting to visit a place where they would tell me more of what is going on. I saw the list of cancer centers, would you know of any particular expert in NY City who I can try to get an appointment with?

Thanks,

Billy

[AlanMeyer Moderator in reply to billy1950]

I don't know the names of doctors in New York but there are a number of people in our group who are from there, including Darryl, the founder and administrator of Malecare and this group. The Advanced Prostate Cancer group will probably have even more patients from New York.

The National Cancer Institute Designated Cancer Centers list includes four hospitals in New York and one in the Bronx. All five are going to have excellent people. There's probably more cancer expertise located in New York than any other city in the world. I see that Memorial Sloan Kettering lists 27 or 50 specialists in prostate cancer, depending on how you look for them. Most also treat a few other cancers but these are all people who treat a lot of PCa. Also, according to their website, they also work in teams.

I don't know if this will work for you or not, but when I call a hospital office I ask the person who answers who he or she would recommend for prostate cancer treatment. Who would he go to? Who would she send her father to?

Another thing I do is look at the hospital website. Many of them have a "Find a Doctor" method for listing people with particular specialties. You can google any of them and search for them on Pubmed (ncbi.nlm.nih.gov/pubmed/) to find out whether they do research and what their research specialties are.

Good luck with your search - and with your (possible) cancer.

Alan

[billy1950 in reply to AlanMeyer]

AlanMeyer,

Thank you. You have been a great help!

[407ca]

Billy1950

I have had recurrence after failed radiation. I was treated with a form of hifu called Tulsa Pro. It differs from traditional hifu as it is delivered via the eurethera while using an MRI for real time imaging. This enables treatment of the entire gland without damaging nearby areas. The treatment is contoured to the gland itself. The instrument has cooling capabilities to prevent damage to the eurethera and rectum.

I will have my first post treatment PSA in 2 weeks and an MRI at 6 months post treatment.

Also, I will have a PSMA PET scan at 1 year.

All the best.

[Gpinkk in reply to 407ca]

I’m very interested in your post-HIFU Treatment results. I am considering it to treat my low grade Situation. Thank you for sharing.

[407ca in reply to Gpinkk]

Gpinkk,

I will let you know the results as they become known. I will not be cured as I have mets, but it should help.

All the best.

[billy1950 in reply to 407ca]

Hi 407ca,

I read all of your posts and replies...you have had a lot going on...very thorough in your pursuit. Very impressive. My radiation was back in 2004-2005 PSA 6.9 gl. 6 @ age 54.

Am I correct that you neither had surgical or chemical castration? I think about what effects they would have.

Did you have the Tulsa Pro done in Finland? If not, where? Lastly, have there been any SEs?

Thanks,

Billy

[407ca in reply to billy1950]

Billy,

I have never had castration of any kind.

The Tulsa Pro was done in Finland. They are running a trial that has an arm that treats recurrence as well as an arm that does primary treatment.

They found mets with a PSMA Pet scan that an Axumin scan had missed. This made me inelegible for the trial but they treated me as a private self pay.

Have not had any side effects except that I can pee better than before, an added plus!

All the best.

[billy1950 in reply to 407ca]

Hi 407ca,

Are you comfortable in saying what the approximate cost was with having the TULSA Pro treatment in Finland?

Thanks,

Billy

[407ca in reply to billy1950]

I paid $17,300, plus travel costs. All told the total was about 22,500.

The interesting thing is that I had contacted Dr Scionti in Sarasota and another guy in Boston about standard HIFU. Both wanted $25,000 up front. I figure I got a much more advanced treatment at a lesser cost. Besides, my wife and I made vacation of the trip as well. A nice place to visit.

[billy1950 in reply to 407ca]

407ca,

Thanks for the information...

[FCoffey]

I have not had HIFU, but a fellow PCa patient and friend of mine did have HIFU after recurrence. And again, and again. I finally asked him if he was going to keep doing the same thing over and over, expecting a different outcome.

[billy1950 in reply to FCoffey]

Hi FCoffy,

Wondering if your friend had any SEs and if he is on ADT?

Thanks,

Billy

[FCoffey in reply to billy1950]

Uh, he had all of them, I think. He's not a very happy man. Yes he is on ADT.

[billy1950]

Thanks to all...

[j-o-h-n]

For all the newbies HIFU = High Intensity Focused Ultrasound. It is a non-invasive procedure which uses sound waves, instead of surgery or radiation, to image and destroy prostate cancers. With real-time imaging and software, HIFU delivers precise, focused ultrasound energy targeted to the diseased cells of the prostate.

Abbreviations are getting me down.

youtube.com/watch?v=4NwP3we...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/15/2019 6:06 PM DST (Daylight Savings Time)