Post-HIFU PSA result of 4.6. Not what... - Advanced Prostate...

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Post-HIFU PSA result of 4.6. Not what I was expecting.

Adam10 profile image
28 Replies

I am in shock at just receiving my post-HIFU procedure PSA test result of 4.6 ng/ml (range 0-4.1). I was expecting/hoping for nil or much lower. I had my 10mm tumor (Gleeson 3+4) ablated by HIFU treatment in November 2018.

HIFU surgeon said previously that she was pleased that post-HIFU MRI showed right side of my prostate (where the tumor was) was well ablated. MRI also showed necrosis (evidence that tumor was killed). I passed red slivers of tissue in my water for 6 weeks afterwards too.

Does the PSA 4.6 mean the cancer is still there or has returned?

I know I have an enlarged prostate anyway. Could it be that?

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Adam10
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28 Replies
Adam10 profile image
Adam10

To add, previous results were PSA 5.9 (Jan 2019), 5.3 (Aug 2018), 5.5 (June 2018), 6.8 (May 2018), 4.6 (March 2018) - now same as one year ago, despite my HIFI four months ago!

Currumpaw profile image
Currumpaw in reply to Adam10

What is the size of your prostate? That, your age and even diet can affect PSA. Is there residual inflammation from the biopsy or ablation? That will raise your PSA. Be careful of quinolones, Cipro and Levaquin. They are very damaging to tendons, ligaments and joints but can also cause aortic aneurism. In my case, the more the quinolones were used the more damage I had from them. Cefdinir and Rocephin are alternative drugs that are used in lieu of the quinolones.

Adam10 profile image
Adam10 in reply to Currumpaw

Hi Currumpaw.

I have an enlarged prostate. Not sure of size. Recall 44 cm being mentioned versus standard size 25 cm.

I’m 63 years old and eat healthy gluten free diet with lots fish and veg and minimal red meat.

Yes HIFU surgeon mentioned PSA might be higher than normal due to my prostate size.

But my local (Egyptian but UK trained) urologist talked about PSA at nadir (zero) and that there must be cancer cells secreting antigen which PSA is picking up. Hence must do bone scan ASAP. Looking for place for that now. Not many in Middle East.

Other non-urologist doctors talked about residual inflammation spiking my PSA.

Thanks for mentioning all these imponderables.

I thought I might be cured of the tumor after ‘good’ post-HIFU MRI but it looks like just another step in the long journey.

Am researching where to have PSMA PET scan and/or biopsy. Will the scan suffice or do I need both?.

Is it only Germany that does PSMA scan which can differentiate between cancerous and non-cancerous tissues.

Wish I knew all this before I had perineal biopsy done in London at great expense - it’s all about the knowledge. I’m grateful to know now.

GP24 profile image
GP24

I do not like focal treatments. Prostate cancer is a multi-focal disease and you cannot be sure that the cancer is in one half of the prostate only. MRI and biopsies are not that exact.

The best diagnostic now would be a PSMA PET/CT which will show where the remaining cancer is. It will also show if there are affected lymph nodes which may cause the PSA value too.

Otherwise you can do a biopsy of the remaining prostate - probably followed by a standard surgery.

Adam10 profile image
Adam10 in reply to GP24

Gulp! I thought I was home safe. MRI only showed tumor in right side. Can MRI see all existing cancer?

What is PSMA PET/CT please?

What would be the “standard survey” you mention?

GP24 profile image
GP24 in reply to Adam10

If you could detect prostate cancer exactly with an MRI, nobody would do any biopsies.

I just mentioned a PSMA PET/CT because it is a very good diagnostic tool. However, very expensive:

healthunlocked.com/advanced...

I mentioned "standard surgery" not "survey". If HIFU fails, your best option is a standard prostate surgery.

Adam10 profile image
Adam10 in reply to GP24

Thank you. Points noted. Am off researching where to have PSMA PET/CT.

Yes I meant standard surgery. Thanks.

Furyhercto your helpful comments to others, should I consider an Acumin PET scan with my PSA results.

What is good team to have in my case (post-HIFU procedure with distant surgeon in UK whereas I am in Middle East and local urologist).

Thank you for your replies b

GP24 profile image
GP24 in reply to Adam10

The PSMA PET/CT is better than an Axumin scan. However, the Axumin scan is payed in the US by health insurance while the PSMA PET/CT is not.

If you get prostate surgery, simply put, you can avoid side effects by choosing "the best surgeon". Not the friendly one currently near you. Robotic surgery (Da Vinci) will let you recover more quickly.

youtube.com/watch?time_cont...

I linked this since you will not make an appointment in New York.

Adam10 profile image
Adam10 in reply to GP24

Thank you very much GP24.

in reply to GP24

I agree. Tumor activity in one side only. HIFU surgeon suggested full gland ablation as a prudent strategy and I agreed. My PSA nadir was undetectable. It has drifted up to 0.3. My tumor activity was mapped by standard 12 core biopsy and not by MRI.

Adam10 profile image
Adam10 in reply to

Thank you WSOPeddle. My HIFU surgeon only ablated right side of prostate where tumor was spotted by MRI. Wish she had ablated entire gland. Mapping by MRI seems inadequate. I recall surgeon only did biopsy on side where tumor was. Looks like a salvage operation is now required!

I’m thinking of having PSMA PET scan to detect the other cancerous areas probably in left unablated side. Any ideas where I could get such scan in Europe?

Tall_Allen profile image
Tall_Allen

It is impossible to know just what it means. Read the subsection titled "Tracking progression after therapy"

pcnrv.blogspot.com/2016/12/...

I think you will need a biopsy, read by someone who knows how to read post-ablation biopsies. mpMRIs after ablation are problematic as well.

Adam10 profile image
Adam10 in reply to Tall_Allen

Thank you very much Tall_Allen. Very interesting and reassuring.

I saw my urologist last night who reviewed my ultrasound tests on my bladder, liver, pancreas and those seemed OK. He has sent me for bone scan using nuclear isotopes to check for distant growths.

Otherwise he will wait for next PSA in 3 months. But that is assessing remission by PSA which your link says we shouldn’t do.

I will research having biopsy as you suggest and having a PSMA PET/CT scan as suggested by other commentators. Thanks again.

Tall_Allen profile image
Tall_Allen in reply to Adam10

Please let me know if you find a place willing to sell you a PSMA scan (or an Axumin scan) after focal therapy and what the cost is.

Adam10 profile image
Adam10 in reply to Tall_Allen

Will do.

Adam10 profile image
Adam10 in reply to Tall_Allen

PSMA PET/CT Gallium GA-68 scan is $460 at Al Adan Hospital, Kuwait in its Nuclear Medicine Dept. 1-2 week waiting list. Friendly and helpful. Am sending their scan and radiologist’s report to my urologist surgeon in London for second opinion by their London radiologist.

Tall_Allen profile image
Tall_Allen in reply to Adam10

Thanks! That is a very good price!

Adam10 profile image
Adam10 in reply to Tall_Allen

It is a public hospital so probably subsidized by the state.

Fightinghard profile image
Fightinghard in reply to Adam10

My last PSMA scan cost $20,000 with no insurance. Lucky I was covered.

TFBUNDY profile image
TFBUNDY

Hi Adam. Look for my post 'HIFU and Metabolic Control'. My surgeon told me that PSA post HIFU might be around 30% of the previous value. I had 2 large lesions across 2 lobes - one was 12mm diameter plain to see in the MRI, and Gleeson 3+4. DRE (or FUB) was negative because of position. My PSA had peaked at 8.1ng/ml, I used intermittent LDN + Vitamin D + Hymecromone (Cantabilne or 4-MU) for 2 months (I still take it) before HIFU was at PSA 4.4 at pre op - I took a long holiday after the 8.1 result (my diet was a month of lots of alcohol and protein). 3 months after HIFU my PSA was 1.4. 6 months after HIFU 1.2ng/ml. I regard that as a terrific result beyond my expectations. I keep throwing in the 'medications' - as many as I can get my hands on! If you still have anything of a functioning prostate then it will spit out PSA. Unless it is totally destroyed,, or put in the bin it will never be zero. RUN to the Care Oncology Clinic and get on their protocol. Kick the 4kr while its down. If you go to sleep and live in hope after HIFU, I think you are doing the wrong thing. Kick and fight... and then kick some more....

Adam10 profile image
Adam10 in reply to TFBUNDY

Thanks very much TFBUNDY. Sounds like we are in similar situation except your post-HIFU results are much better.

My PSA is still 67% of what it was.

PSMA scan shows “extra capsule extension to be clarified by MRI.”

Local urologist thinks it was there from the outset before HIFU.

MRI scans in May and December 2018 showed capsule was intact. This is my biggest worry at the moment.

Am going for MRI next month after my return from vacation overseas.

Surgeon had said wait for PSA and if PSA was over 5 then get MRI.

Have sent copy of scan report to her. Waiting for her comments.

Seeing local urologist on 20 April.

TFBUNDY profile image
TFBUNDY in reply to Adam10

I've said it before my friend. I regard HIFU as the beginning. Look at the amount of stuff I take. Maybe my better results are a coincidence but I'll keep taking it anyway. Don't walk - RUN to the Care Oncology Clinic as a first move, then keep adding to the brew. Vitamin D and Low Dose Naltrexone, Magnesium, boron..... lots of stuff to think about

Adam10 profile image
Adam10 in reply to TFBUNDY

Thanks TFBUNDY.

Only now realizing that HIFU is the beginning after reading your post. Had hoped HIFU was the end of treatment.

Am looking into the meds you take. Will discuss with my urologist on 20 April.

Already taking vitamin D. Also I sunbathe 1-2 per week.

Read about magnesium but not yet taking it.

The LDN and Boron sound adventurous. I know what my urologist will say - “no need, just eat a balanced diet”.

What treatment do Care Oncology Clinic provide? Not sure we have COC here. Probably because I’ve never looked for them.

Thank you again for your comments and suggestions. Much appreciated.

TFBUNDY profile image
TFBUNDY in reply to Adam10

Care oncology are in the US if that's where you are. Phone em. You get atorvastatin, metformin, mebendazole, Doxycycline. My basis of thought is that I developed PCa and I will develop it again unless I make life very difficult for the bastards. So I take everything I can get. Boron at 10mg a day. By cheap boric acid. Very beneficial, apparently. Good hunting

Adam10 profile image
Adam10 in reply to TFBUNDY

Thanks for the info. Good thinking. I share your thoughts. I’m in the Middle East at present. Then I will retire to Asia. Will investigate alternative to Care Oncology. Suspect it’s the local urologist consultant who seem behind the latest research but that’s understandable here. Hence my gratitude for latest thinking on this forum. Thanks again brother.

TFBUNDY profile image
TFBUNDY in reply to Adam10

Just buy the stuff. 500mg a day Metformin. 80mg a day in one dose atorvastatin, 100ng a day mebendazole for a month, then stop that and take 100mg a day Doxycycline for a month, then go back to mebendazole for a month and then back to Doxycycline... Don't expect much support from urologists. Take metformin at night without food

Adam10 profile image
Adam10 in reply to TFBUNDY

Thanks TFBUNDY will do. I really appreciate your insight and suggestions

TFBUNDY profile image
TFBUNDY in reply to Adam10

I will help in any way I can but we are all shooting in the dark to some extent. Time will tell. Let me know what prices you get for the meds. Also get a pack of Naltrexone (brand name Revia) and I'll tell you how to make it up and take it. One pack will last about a year

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