PSA after HIFU

Hello everyone and thanks for any help!
My husband had HIFU some 9 years ago, his PSA was .2 right after treatment. It continued to rise, just a little for 8 years, when it was 8. he was finally pressured into getting another HIFU. Three months later his PSA was 13., then it rose to 27. at 9 months post treatment. At this point he has had a CT PET scan with dye, another CT scan and complete blood panel, all his blood was good, his creatine level was better by 16 and in normal levels, the PET scan said his entire prostate and Seminole vessels were surgically absent. They could find no metastasis, lymph glands good and bones good. The scans were from upper legs to neck.
What in the world could this be?
All I can think of is maybe the ash left behind from cooking all of that tissue is causing the PSA rise?

yes, there was a 12 needle biopsy and a MRI prior to second treatment.

the report says the gland is "surgically absent".

local urologist is recommending another MRI.

Yes, Mexico, which was the cleanest hospital I've ever been in and I work in my local as a volunteer. There were several doctors from the USA attending to learn the procedure.

The second was done in Florida, not a hospital, but a clinic, and the cost you sited was correct.
He literally had no side effects or pain after the first treatment, and was perfect up until the second. However the second, being he "got all of it" as the doctor said after treatment, left him with a uninterested sex drive, however, urination is as good as new, and no pain, no down time. He's 73.

I am not aware that all of the gland cannot be treated with HIFU.
The second treatment of the remaining gland (according to the MRI) was 10cc prior to HIFU, pretty small, but staged T3B, cancer area was 0.5cc in volume. Cancer was in the seminal vessels also. It took 2 hours.

Post Edited (donnathewife) : 2/17/2017 1:51:36 PM (GMT-7)

donnathewife said...

I am not aware that all of the gland cannot be treated with HIFU.

I'm sorry...I did not mean to imply that the whole prostate cannot be treated with HIFU. It can. It typically isn't.

Usually the treatment is done focally...that's a "key feature" of HIFU is to treat (ablate) just the specific areas where PC is found and maintain as much of the other prostate tissue unharmed.

The second most common application is hemiablation, where just one (of 2) hemispheres (lobes) is treated. This approach is for patients who have significant cancer found on one side but not the other, and they wish to reduce their side effect risks by sparing the neurovascular bundle on the opposite side and expose less of the urethra to HIFU.

Whole gland ablation is also done. There are other ways of doing whole-gland ablation, though, and HIFU loses much of it's uniqueness if that is the objective.

From what you described, it sounds like the initial treatment was focal, and the second was a whole-gland "hail Mary" attempt. Given that whole-gland treatment has been completed, plus PSA is as high as 27 ng/mL, it seems time to move on and look at systemic disease.


BTW, sex drive is separate and different from sex function. Sex drive, or libido, is unaffected by HIFU (or surgery, or radiation), but it is affected by chemical or surgical castration...which some men have for advanced PC. Sexual function/dysfunction (erectile dysfunction, or ED) is the result of prostate treatments which damage the neurovascular bundles on either side of the prostate...the dis-functionality can be overcome with pills or other means.

Post Edited (JackH) : 2/17/2017 3:02:08 PM (GMT-7)

donnawife said...
We both would have a hard time telling him about specific tests he should run.

You aren't telling him to run it, you are asking. CTC is something he has probably never heard of, it's really a test that a medical oncologist, not a urologist, would give. It's not a very popular test even among MOs because there is really nothing to be done about it - he would start on hormone therapy regardless - but it sounds like you are desperately seeking evidence. Doctors are not gods - they don't know everything - and it is your job to make sure that your concerns are addressed. Doctors are very used to patients bringing up such questions, and a good doctor will engage in shared decision making.

You mentioned an upcoming MRI - is that multiparametric? (I assume so) and do you have a radiologist who has some experience reading it on ablated tissue? (otherwise, it's not likely to be useful) What kind of PET scan did he have?

The pattern of PSA rise you are describing is typical of systemic metastases - slow at first, then speeding up as metastases proliferate.

"Just leave me alone" is a normal reaction. Depression and anxiety are very typical first reactions to finding out that one's cancer is metastatic. They often get less incapacitating over time as the patient adapts to the new normal. There may be a live prostate cancer support group in your community that he can attend. Most guys find it useful to hear from others who are going through the same thing. My group excludes wives, which allows guys to unload more honestly.

Whole gland HIFU, which he ultimately had, has many side effects. In the study (below) by some of the best HIFU practitioners in the world, 56% of previously potent men were potent afterwards, 14% required urethral dilation, 12% required bladder neck incision, 45% had urinary leakage, and 9% used pads daily. I would say that your husband has been very lucky.

Morbidity Associated with Primary High Intensity Focused Ultrasound and Redo High Intensity Focused Ultrasound for Localized Prostate Cancer

The F-18 PET scan is only for bone mets, and it isn't all that sensitive. There are some better ones that can detect cancer in lymph nodes as well. I think you would be much better off with one of them than with an MRI read by a radiologist who doesn't have experience with ablated tissue. Unfortunately, most of them (and especially all of the PSMA-based ones) are only available in clinical trials to patients who are recurrent after radiation or surgery. You can get a C-11 acetate PET scan at UCLA for $2300. C-11 Choline is available at Mayo. You can ask if they would allow you to have a fluciclovine PET scan at Emory.

You are raising a very good point when you say "And so... the advantage is? Knowing exactly where cancer is? A different treatment?"

Possibly there is no value, and the treatment would be exactly the same no matter what a more sensitive PET scan shows. That treatment would be hormone therapy - it's the standard of care in this situation. But there are a couple of situations that might make a difference in therapies:

1. Metastases limited to the pelvic lymph nodes: Because lymph (unlike blood) is a very slow moving fluid and cancer cells are often filtered and trapped in lymph nodes, it may be possible to use salvage pelvic radiation or extended pelvic lymph node dissection to treat all the lymph nodes in the pelvic area. This may be curative IF it is the only place there are metastases. It's a big IF -and even with the best PET scans, no way to really know. Unlike breast cancer where the cancer all flows through axial sentinel LNs, the dispersion is much wider in the pelvis.

2.Five or more metastases outside of the pelvic LN area. If this is the case, early use of chemo may prolong survival markedly. Now, when I say "5 or more" it's based on data from bone scans, not PET scans, so no one is sure that it applies.

3. Some believe that zapping distant metastases with SBRT may be useful in slowing progression, but there are no data that proves this theory. Available data shows that progression is slow at first anyway, and that new mets pop up elsewhere eventually. There are studies underway to figure this out. Meanwhile, if mets are found in a place that can be safely irradiated, and it does not prevent use of another therapy, there is no reason not to do it.

You can consult with a medical oncologist via phone, and he can arrange for treatment by someone local. I think there are increasing numbers of men in your husband's situation as the early promise of focal ablation has been overhyped. That means there may be some medical oncologists with experience in treating men like him. You are more likely to find such MOs at the top university hospitals like Memorial Sloan Kettering, Johns Hopkins, and MD Anderson. But there are some in private practice too, like Scholz/Lam/Turner.

Hi Donna,
At the risk of ruining your perfectly good weekend, I would say from my limited knowledge that would be an unwise course. Usually symptoms occur when the cancer has fully metastasized to bones. Our medonc just told us last week that Gary is probably pain free without opiate right now because lymph nodes and liver mets don't hurt.
I don't know enough about HIFU to comment on second line tx, but I'm thinking you need to find yourselves a good med onc. And HT success rate varies from patient to patient. Some guys go for years on it after high PSA and detectable mets. But again, I don't know anything about HIFU.
BTW, totally understand the ostrich act, fwiw.
Beth

Hello again,

The MRI showed a small amount of prostate tissue.

Could this loose prostate tissue, minus a gland, be what is raising the PSA?

fingers crossed, as no cancer was reported....

He found the gland absent in a CT PET scan, and some tissue in a MRI. Two different hospitals.

We haven't been in to see him since you wrote me that info to ask him.

I've had a problem of my own and I've been to see 15 doctors, not two have given me identical diagnosis, in fact wildly different.

Donna,
A psa of 27 indicates a lot of cancer not just a spot or two since he doesn't have a prostate. Advanced scans like the ones Allan mentioned may pick something up if individual tumors are big enough, but more are likely to miss more of the micro mets.
I think it would be very unlikely for scans, showing either positive or negative to change the treatment. He needs to see a medical oncologist specializing in PC so he can start HT.

Hi,
we are in New Zealand for the winter, where we have found out that doctors do not advice men get hormone therapy, it's not worth the side effects, they say.

My husband has no side effects from the two HIFU treatments, his doctor says he probably has 8-11 years to live, which is okay with him. Maybe he will change his mind, or there will be a new treatment.

He took Casodex 5 months prior to the last HIFU, and I've found other men on the web who think maybe the Casodex can have the effect of speeding up the growth (and PSA), now I also think that.. so I would advice not to take it, it's not worth the risk.

My husband had a difficult time with the Casodex, so he does not want to go on HT, until pain starts. Some doctors recommend that, most push drugs.

JohnG, your story sounds quite similar... a rise of 1. sounds like nothing now! Although his latest PSA test showed a reduced velocity. Still no mets on any photos.

Dr Scionti has Graves disease, which is caused from stress.... the stress people have put him through certainly would cause anything.