I have just located a hospital with a PSMA PET/CT scan machine Galliun GA68. I was so astonished having read on this forum of the difficulties in finding such machines that I immediately booked and paid $460 for a scan.
But I’m wondering if this is too soon after my HIFU procedure last November 2018 (4 months ago) for a focal tumor.
My recent PSA test is 4.6, not the 0.0 nadir result I had hoped for. My urologist is concerned and says there seems to be be cancer cells somewhere in my Which are emitting the antigen. He sent me for a bone scan which was why I was at the nuclear medicine Dept of my local hospital. I’m having that WB PET NAF bone scan too.
Is it too early for the PSMA PET/CT scan after my HIFU. Will there be false positive readings which I’ve read about on this forum.
I work in the Middle East snd these machines are new here. Is the ability to interpret the results too difficult for non-first world countries? I guess I can send the images to Lobdon for check analysis.
Any comments greatly appreciated.
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Do ablated prostate cancer cells still show PSMA even after they've been killed (false positives)? Who knows? I'd be more concerned about false negatives. We really don't know much about when PSMA starts to appear in prostate cancer. It has been detected in high risk PC in the prostate. But that's a very good price. If it is positive in the prostate, it may guide a biopsy. You would have to find someone who can read a biopsy with ablated tissue. If it is negative in the prostate, you could still have a template mapping biopsy (also assuming you have an experienced pathologist). If it is positive outside of the prostate, you won't need a biopsy.
It would be a pathologist (not an RO) who reads a biopsy, a radiologist (not a surgeon or an RO) reads a scan. A radiation oncologist puts together a radiation plan. You need a lot of different specialists.
Great thank you for sharing your knowledge. I’m still at the single specialist stage but am learning from your and other comments in this forum about the need for a team of specialists.
Surprisingly none of my single specialists mention this need for a team almost to the point that it’s hard work having to go against their inaction on this point.
But as I’m paying the bills, with minimum private health insurance,
I’m learning that I should request and be determined to receive as I am signing the invoices and paying when it’s not covered by insurance - so much is not covered by insurance.
I’m not covered for anything in the UK where prices are hideously expensive e.g. $460 for scan in Middle East public hospital, $6,000 for same scan in UK private sector.
You don't need to put together a team, your doctor makes the arrangements . When you get a scan at a hospital, the hospital's radiologist reads it. When you get a biopsy at a hospital, the hospital's pathologist reads it. You should ask if the radiologist and pathologist has experience reading tissue and scan's of men who've had HIFU. Because HIFU is an experimental therapy, there will not be many with such experience. Possibly someone in the Ahmed/Emberton group.
It is only approved for ablation of prostate tissue (as a TURP or HoLEP does), it is not approved for treatment of prostate cancer. After the FDA turned it down for treatment of prostate cancer, the HIFU manufacturers submitted it for approval of prostate tissue ablation. Doctors who use it for prostate cancer in the US are using it experimentally off label. Many doctors use it on patients without adequately informing them of the risks.
I think that was more a political outcome than a medical outcome, seeing as how the overwhelming majority of urologists practice conventional surgery. Radiation oncologists have their turf to protect too. How is it that the barbaric and unfocused cryo-therapy for prostate cancer is approved? A HIFU surgeon has feedback on exactly what tissue is being ablated and even what temperature it reaches.
It was decided after a review of the available data- not political at all. The data were inadequate to recommend it. Cryo has a much longer track record than HIFU. There are many unanswered questions about HIFU that only time can provide. So far, it's not looking all that good.
I was informed HIFU was suitable for me as my tumor (10 mm long) was diagnosed on one side of my prostate and as a focal tumor. This was based on a MRI scan.
As MRI scans do not spot all types or sizes of cancer cells - I read this on this forum - perhaps HIFU should in future be based only on PSMA PET/CT scans?
In other words, perhaps only the most reliable scanning machines for spotting cancer cells should be the basis for deciding whether to use HIFU or not.
I’m not medically trained and am new to all this but this is what as a patient I am thinking for my treatment.
Grateful to all who are sharing their specialist experience and views. It is highly informative for us new patients.
From FDA.gov Febr 28, 2019: “FDA is concerned that health providers and patients may not be aware that ... safety and effectiviness has not been established in the prevention and treatment .... of cancer”.
Question: are RASD permited to be used in patients who have cancer?
Answer: “RASD have been evaluated by the FDA and cleared for use in certain types of surgical procedures commonly performed in patients with cancer, such as hysterectory, prostatectomy and colectomy. These clearances are based on short term (30 days) patiënt follow up. The safety and effectiviness of RASD for the treatment of cancer, based on cancer related outcomes, such as overall survival, have not been established”.
DaVinci has been FDA-approved for radical prostatectomy for prostate cancer since 2000. HIFU has been approved for prostate tissue removal, but not for prostate cancer removal. Neither are approved for other cancers.
Again FDA 2019: FDA approval in 2000 was “based on the evaluation of the device as a surgical tool and did NOT include evaluation of outcomes related to the treatment of cancer”.
It was approved under the FDA provision that it was not appreciably different from an existing approved indication (prostate surgery for prostate cancer). There have been a few studies between then and now proving the equivalence of outcomes.
It was different from the approval of HIFU for prostate tissue, if that is your question.
No warning against RP for prostate cancer. There are many different kinds of cancer for which robotic surgery can potentially be used; So far, it is only approved for prostatectomy or hysterectomy. If you want me to explain this further, I think you should take this up privately, since it does not benefit the OP.
Thanks. Understood. Glad to hear doctors will refer to appropriate specialists with team approach.
HIFU is unavailable where I work/live at moment (in Middle East) so guess Hospital radiologist here won’t have much experience reading a scan like mine (I had partial gland HIFU 4 months ago in London).
I will definitely send my next scan to London where I had biopsy and HIFU carried out by the Emberton group - Professor Mark Emberton did my biopsy and Professor Caroline Moore did my HIFU.
Interesting but slightly worrying to hear that HIFU is experimental. I hear it is only recently available on the NHS in UK.(subject to long wait no doubt). It’s been available privately in UK for over 5 years (might be longer). It is very very expensive in UK.
I should qualify that it is experimental as a prostate cancer treatment in the US, and is not covered by Medicare or other insurance. So it is also very expensive in the US, and it sometimes requires "re-dos" which further raises out-of-pocket costs. That is ideal if you can get the Emberton group to look at your scans and biopsies.
I think $460 is a very low price for a scan and I would get it done in any case. It is not too early, they will find tumor lesions with the scan and that is what you want to know. False positives are rare and and a good RO will be able to determine most of these.
Usually the interpreting RO has sufficient experience after 30 scans. You will get a DVD with the images, however, you will have to find an RO with PSMA PET/CT experience if you want a second opinion.
I was in your shoes previously. I did Whole gland HIFU in Taiwan in December 2017 and after 7 months found my PSA starting to creep up. The lowest was 0.02. My doctors advised me that I should wait until it reached 1.5 before going for PSMA scan or it might not pick up cancer cells. Unfortunately (for me) I found nothing on the prostate bed but it had spreaded to my lumbar. I subsequently went back for radiation and also hormone treatment.
If your PSA is 4.6 I assume the PSMA can pick up the bad guys if they exist.
Thank you for posting CYR7. I now wish I had received a whole gland HIFU as it seems some cancer cells might exist in the left half of my prostate which was not ablated (I had two white core biopsy taken in left side - 8 cores on right side).
Sorry to hear the ‘bad cells’ have spread to your lumbar. Hope the radiation and HT destroys them.
Did they advise a bone scan after the HIFU and increased PSA? What might have spotted the spread from the prostate. Sorry to ask.
Yes, I feel the need to keep going and have the scans while I have the opportunity close to my current abode.
Interesting to hear that HIFU is available in Taiwan. I am willing to travel anywhere for a cure or short term solution.
Thank you again for sharing your experiences and very best of luck for the next phase of your treatment.
First thing first. In my case, the advice given is just take PSA tests, no need for bone scan. I guess the reason is whatever creeps up, the PSA test will catch it. Interestingly, when my PSA slowly creeps up from 0.01 to 0.09 in a matter of 2 months (I was on monthly tests), I thought it was a residue reaction on the prostate bed which the HIFU did not get, and I did a lot of research into focal laser ablation. Turns out the HIFU did its job, but sadly I had graduated to mets on the lumbar.
If not for the PSA rise, I would not have found out about the met. In any case, today is 5 months after the radiation and hormone shots, and my PSA is lingering around 0.04. Hope it stays there forever.
The reason I went for HIFU was because I had radiation the first time round and surgery as a followup was not possible.
As far as HIFU is concerned I had a choice of going to US or Taiwan - and truth be told both recommended a whole gland ablation. I picked Taiwan because it was closer and it was an in-hospital operation theatre procedure which I preferred. Money wise they are about the same. It was the thought of a 14-hour flight with a catheter that decided Taiwan for me.
I hope your PSMA test will go well. Frankly I have been told by my Taiwan doctor that if there’s a recurrence in my prostate, he would do the procedure again for me. Apparently you can re-HIFU should one requires it.
If we can’t get rid of it, so long as we can keep it under chain and lock, we get to live as full a life as possible. That’s my mindset now.
By the way a PSMA test in HK costs about US$1,200 but it is readily available.
Thanks for your post - highly informative. Great to hear your PSA is 0.04 which is superb. I’d like that result. I’m pleased for you.
Taiwan and HK sound interesting. Closer than Australia and I have not been to either, so would have a holiday too.
Prices are much lower than UK. I think I would stay the extra 3-5 days to get rid of the catheter if I did a re HIFU. I was told I could only have a second HIFU attempt then it would have to be radiotherapy or surgery.
I went for HIFU as it was noninvasive and my tumor was focal but now it seems it might not have been the only bad cells in my prostate.
Your mindset is so positive - keep the disease under lock and key. I will try and adopt that approach. I’m still shocked to be the one in nine (stated in a newspaper recently - sounds too low?) to be afflicted with this. Thought I’d led a healthy life too.
Thank you very much for sharing. Very interesting.
HIFU is available in Taiwan NOT in HK. In fact we have only the conventional methods here. No laser ablation no HIFU and my urologist actually tried to dissuade me from HIFU. If you are going for salvage HIFU best thing to do is to pick a hospital and then negotiate a visitor price. Locals pay much less.
The reason I have changed my outlook was the trauma I suffered mentally when post-HIFU PSA started to rise. I pinned so much hope on a cure, and of course the result was devastating. In a way I was somewhat relieved that the prostate bed that was HIFUed turned out to be cancer free. That means it worked though the bad guys had already set up camp elsewhere. That’s my way of managing expectations.
Good luck with everything. If you need more info just give a yell. We are all survivors on an ocean cruiser.
1. No matter what, you always want experience. Think about your own line of work.
2. Australia has inexpensive psma services, from docs with presumably a lot of experience at this point. Why not try psma in Australia? There are posts on this forum that mention specific docs.
3. You need to assume that experience counts as much in the taking of the scan as in it's reading. And I have been told that not all pet/CT equipment is equal. Some cost more and also produce better results.
Sound advice. You are right. I must check the experience of the doctors taking the scan.
Yes, a commentator on this forum kindly provided contact details of PSMA scans in Melbourne, Australia. The airfares and flying time from Middle East put me off.
Then I found there was a PSMA machine around the corner from where I work, at a large hospital with an established nuclear medicine dept so I thought good luck was shining on me.
It means I can have the scan in 10 days instead of waiting probably 3-4 months due to work (although my health comes first and I was thinking of just going and getting it done in 2 months.
Are there any disadvantages to having two PSMA scans within say 9 months - my HIFU surgeon said PSA tests every 3 months and MRI after one year, in November 2019.
I’m latching into PSMA scans having read about them on this forum.
The lack of a 0.00 PSA - actual reading last week was 4.6 - startled my urologist who sent me for an bone scan on the basis that there might be bad cells in me causing this high PSA.
The doctors at the bone scan hospital offered me a PSMA as well. I just grabbed at both, happy that I’d found somewhere and could get them done quickly.
Three days ago I had salvage, whole gland transuretheral HIFU after failed radiation
(Gleason 4+5).
Three hours ago I had a consult with the doctor who did the HFFU. He wants PSA every 3 months and PSMA in one year. The contrast agent lingers on ablated cells for a while after treatment.
Prior Axumin scans showed nothing. A psma scan done soon afterward found mets, thus enabling treatment. The psma scan was done in Europe last October. Radiologist in the US used that scan to target the mets.
500 dollars the the psma is chump change. To my mind, a bargain.
Thanks 407ca. What an experience you’ve had, hopefully with a successful outcome.
So PSMA is the scan that best finds the bad cells and surgeons wants one-year post HIFU PSMA scans and not MRI scans - is this the end of MRI and Auxmin scans? Sounds like it.
Can I ask where in Europe you had your PSMA Scan? Did they readily accept you turning up and paying cash?
You refer to contrast agent lingering on ablated cells after treatment - is that after HIFU treatment? Do they use contrasts during HIFU? They didn’t mention it for mine.
Do ablated cells remain in the prostate for a long time? My surgeon didn’t say but led me to believe that the ablated cells would be ‘wadhed’ out as I passed water during the 4-8 weeks after HIFU.
Good to hear that a scan in Europe can be used by a radiologist in USA. Presumably the PSMA doctors in Europe were skilled and practiced in PSMA scanning so your scan and DVD were up to the USA required standards?
I found that MRI radiologist’s report in middle east was more pessimistic and alarming than the London radiologist’s second opinion report.
I might be getting my doctor’s titles wrong here - another commentator kindly educated me on those (must read that again).
Thank you for your comments and sharing your experiences. Sounds like you are well placed for a good recovery. I wish you all the best.
First...is psma better than axumin? Here, in Turku, Finland,they believe it to be more sensitive. My U S radiologist at Cleveland Clinic used it to target treatment. Without that disc he would not have had an aim point. That might only be my case, yours may differ. Different scans may be complementary to each other. My own take is that psma has been in use here longer than the U S. During my visit to M D Anderson I specifically asked about psma, they don't have it.
Were their discs up to U S standards? Yes, my U S radiologist used the Finnish scans for my treatment. What more can I say.
My hifu was transuretheral as opposed to trans rectal. MRI imaging was used in real time during treatment. Contrast (galadium, spelling?was used during the procedure). There are two parts to the equipment. First is a wand inserted into the urethera. It has the transducers and cooling capability to help alleviate urethera damage. The other part is inserted rectally. It cools the rectal wall to prevent damage.
I was told to drink a lot to help wash out necrosis tissue. This takes a while.
I will have PSA every three months. At 6 months an MRI in the states. Next year I will return to Finland for the psma.
Did they readily accept me turning up and paying cash? Not really. It was a 5 month effort that began here in Finland when I came from the U S for a clinical trial. I washed out when the mets were found. I returned to U S and went to MDAnderson. The oncologist referred me to a radiologist at Cleveland Clinic near my home. The radiologist agreed to treat my mets only if I could show the someone would treat my prostate (previous radiation failed). I wrote Finland. They agreed to treat me, at my expense, only if I had the mets treated. It all worked out. Not easy but it worked. I made it VERY clear to all that I did not expect a cure but rather better overall survival with better quality of life.
My impression of This place.....care second to none. Period. I have been to centers of excellence and this place is their equal. It is a university teaching hospital with peer review. I am very impressed with the care they give. Nobody tried to sell me on anything.
Onr tidbit of advice. If you get a psa, scan, or anything...get a copy of the reports and make copies to hand out. Retain the original and never hand it out. If a disc is made, get a copy of the disc. Never hand out the originals NEVER. Burn copies and hand those out instead.
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