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Low But Stubborn PSA Numbers

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

I was diagnosed with prostate cancer (PCa) in June 2013. I had no symptoms prior to the diagnosis, but a routine blood test revealed a high PSA of 12.7. The DRE was negative. A transurethral biopsy revealed cancer in 7 of 21 cores. The biopsy was staged T2c, Gleason 7, but a second opinion classified one Gleason 7 core to a Gleason 8. Surgery was scheduled for the next week.

 Eight days later I had a robotic RP (da Vinci) at the Tokyo Medical University Hospital in Tokyo, Japan. The catheter was removed 8 days later. The post-op pathology report confirmed Gleason 8 and revealed up to 7 tumors ranging from Gleason 6, 7, 8. Seminal vesicles and both pelvic lymph nodes were removed and dissected. Both vesicles and nodes were negative for any sign of cancer. One margin, however, was suspect (pathologist could not decide if it was positive), so it was judged “too close to call.” The right nerve bundle was taken, but the left nerve bundle was spared. Final staging: T2cM0N0.

 I had a good recovery from stress-urinary incontinence after 6 weeks. I was pad-free two months after surgery. ED remains a problem.

 In August 2014 I was hospitalized again to repair a large hernia at the ventral RP incision above the navel. This hernia repair failed. In August 2016 I had another operation, and this time a plastic mesh was implanted to repair the hernia.

 Following surgery, I had my PSA tested every two months. My PSA was 0.1 immediately after surgery and gradually rose to 0.3. In September 2014 (seven months after the prostate removal) I started radiation treatment for 6 weeks (2 Gy per session for a total of 60 Gy). My PSA dropped from 0.3 to 0.2. However, over an 18-month period, my PSA steadily rose from 0.2 to 2.0. Apparently, the radiation treatment failed to do the job.

 I started monotherapy with only Casodex for about 3 years. My PSA dropped steadily and remained undetectable for about 6 months, and then slowly started to rise again. By May 2019, my PSA had risen to 0.591, so I decided to change doctors and start hormone therapy. The doctor started me on Zoladex (goserelin) with Casodex (80 mg. daily) I have been taking Zoladex injections every three months for almost two years now (started May 2019). Again, it was the same result as with Casodex alone. My PSA went steadily down 0.050 (March 2020), but recently it has started to rise again (0.135) on 2 Dec 2020.

 March 5 blood test revealed yet another uptick in PSA from 0.135 to 0.176. These numbers are still low (below 0.20) but the stubborn resistance to ADT has me concerned. My doctor recommends switching to (or adding?) another medicine, Nubeqa, Xtandi, etc. once my PSA reaches 1.0.

 I am wondering if the threshold value of 1.0 is a bit low to pull the trigger switching medicine?

 I thank all of you in advance for your kind comments or advice.

 

Old Salt
Posts: 821
Joined: Aug 2014

It appears to me that the surgery did not remove all cancer and neither did the follow-up radiation. 

From the PSA tests during your Casodex and Zoladex treatments, it appears that these have stopped working by now. Hence, I think that you should seriously consider switching drugs, as your doctor has suggested. Personally, I wouldn't even wait for the PSA to rise to 1.

The only advantage for waiting that I see is that a scan (at PSA=1) might reveal where the cancer is hiding. The latter is by no means certain though.

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Old Salt,

Thank you for your input. I will bring this up with my doctor on my next visit, which is about 3 months away.

Stay well.

VascodaGama's picture
VascodaGama
Posts: 3392
Joined: Nov 2010

Yank,

Your story with PCa is impressive. Many guys would like to read your past posts as you narrate them along your journey. For those interested they can check the story from these links;

Search | Cancer Survivors Network

My opinion on your present experience differs in part from what Old Salt comments above. From your above post, I think that the bandit is  localized and probably sets at a fewer number of spots. This reasoning derives from my own experience with failed surgery and SRT, but successful ADT.

As you have said in the past, each case may be similar to others but have different outcomes from similar treatments. However, in your present evident CRPC status I highly recommend you to further verify possibilities to alternatives to those sophisticated ADT drugs. You could check if your doctor's comment regarding his initial judgment pos RP (in leaving behind a piece of contaminated prostate tissue), through a PET scan, done before committing to intratumoral antiandrogens.

The fact is that those drugs would be effective independently if the PSA is 0.17 or 0.57 (ng/ml). The PET requires a certain level of cancer activity to provide real positive images identifying the location of the bandit and for that you should allow the PSA to increase further. PET is not effective in dormant cancers.
If success is obtained from an initial image study and the bandit sets at an acceptable location for radical treatment then you can still aim cure with radiation or dissecting. They call it Oligometastatic PCa. The treatment consists in spot radiation and has been successful for more than 15 years in treating breast cancer. The concept has been adopted to PCa cases and today it is available at several institutions. You may follow the story of the survivor Josephg doing exactly that;

Checkup Status - Next Radiation Treatments Completed | Cancer Survivors Network

I do not want to discourage you, but the drugs you mention above are just standard sequential means for progressive cases identified as CRPC. They are palliative and provide a period of relief that in some patients lasted one to two years before failure. Some oncologists use them in a combination therapy for spot RT, in oligo metastatic treatment. Some others recommend initially a DNA test to verify if such third phase ADT will work in that particular patient.

These drugs are more refined than the traditional Casodex you took before as these work at intratumoral levels (androgen biosynthesis) that also avoid the manufacturing of androgens by the bandit, but do not cover the whole systems involved in the natural behavior of the human cells. Our building blocks are well prepared for survival and will resist any attempt in killing them. These only dye if the natural immune system requires that to happen. ADT drugs would need to mix with mabs to accomplish that goal.

You may be interested in reading this comprehensive study on the functioning of the androgen receptors (AR) in cancerous cells, identifying their mechanism in resistance to ADT;

Cancers | Free Full-Text | Androgen Receptor-Dependent and -Independent Mechanisms Involved in Prostate Cancer Therapy Resistance | HTML (mdpi.com)

I wonder if you are still living in Japan. There you can find institutions doing the F18 Choline PET or 68Ga-PSMA PET, which are the best to prostate cancer scanning. I recommend you to discuss the above in your next meeting with the doctor.

Best wishes,

VGama

 

 

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Good to hear from you again, VG. Yes, I am still in Japan.

It seems we are back to where we were 5 years ago. As you know, there are no oncologists in Japan, only urologists who are surgeons. They approach rising PSA much in the same way with little or no imagination. I am familiar with Dr. Eugene Kwan's work using PET scans to isolate and treat oligometastatic cancers at the Mayo Clinic. When I brought the subject of a scan up with my urologist, he was not enthusiastic. He said that even if such a scan were successful, I could not get it treated in Japan. But that was 5 years ago!

You seem confident that I could find such scans and treatment here in Japan. Would you know of any off-hand? Of course, I will soon get started researching this on my own here. You also mentioned Johns Hopkins in Singapore. This is something else to investigate. I am no longer working, so I have the time to do some more research before my next appointment with the doctor. 

If I must return to the U.S. for the scan and treatment, so be it. These new "wonder drugs" (Xtandi, Nubeqa, etc.) are outrageously expensive and not covered by National Health Insurance here. So if I have to spend that much money just to continue expensive ADT treatment, why not use the money to get a better scan and possible treatment if the bandit can be located?

Thank you for your comments. Stay well.

 

Clevelandguy
Posts: 702
Joined: Jun 2015

Hi,

I would want to find the cancer first then spot treat it with radiation.  Like Vasco said the PET scan should have the best chance of finding the cancer.  If the PET scan is inconclusive then you alway have the ADT drugs like Old Salt suggested.  Unfortunately  sounds like the cancer is still lurking somewhere.  If it was me, my goal would be to locate it and irradicate it, even if it takes multiple PET scan.  From what I have learned here the ADT drugs will just kick the cancer in the butt for a while but it will return as the cancer learns to survive around the ADT protocol.  Good luck and let us know what happens.

Dave 3+4

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Hi, Dave

The idea of "locate and eradicate" certainly has its charm. However, and this information may be old, the C11 Choline PET scan required a minimum PSA level of 2.0 with only a 5% chance of possible success. Your comment about "even if it takes multiple PET scans" makes me nervous, because I may have to pay out of pocket, even here in Japan. 

Thank you for your input. I will certainly keep you guys updated on this thread

Josephg
Posts: 298
Joined: Jan 2013

As Vasco indicated above, I also recommend that you discuss having a PET scan with your doctor, to see if the Bandit's specific location can be identified.  If the Bandit's specific location is identified through a PET scan, and if the Bandit's location is compatible with radiation therapy, then you may have the opportunity to kill the Bandit where it currently resides. When my PSA rose to 0.98, my Medical Oncologist ordered the PET scan for me.

The radiation therapy would most likely be SBRT (CyberKnife are RapidArc marketing names based on radiation machine brand), which typically involves between 2 and 5 sessions (I had 3 sessions) using larger amounts of radiation (~7-10 Grays) during each session.  This radiation is very much targeted to the Bandit itself, as well as a small surrounding radius around the Bendit's location.   Like you, I originally had IMRT radiation therapy (after a failed robotic prostatectomy) to my prostate bed (38 sessions, 68 Grays), and while my PSA dropped to non-detectable for almost 3 years, it finally started to rise again.  This most recent SBRT radiation therapy, had virtually no short-term side effects for me, so far, perhaps a tiny bit of fatigue, but much less than that experienced after the previous IMRT radiation therapy.

I wish you the best of outcomes on your PCA journey.

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Hi, JosephG

Yes, I am going to take your advice and discuss a more sensitive scan with my doctor on my next visit. But I do not expect that to go well.

This is very weird. Japan leads the world in the development of some of this super-sensitive scanning technology, but they are slow to start using it themselves. I can find countless research papers on the development of this equipment here, but there is little news about adopting this scanning technology in Japan. Of course, all hospitals have the PET SCAN, but not the C11 Choline, F18 Choline PET, or 68Ga PSMA PET that Vasco mentions above.

It seems like you tolerated your recent round of radiation fairly well.

Good luck on The Journey. And stay well.

bdhilton
Posts: 797
Joined: Jan 2010

Yank31...Lots of good input here...I just had a PET/CAT about a week ago from UCSF and my PSA was 0.7.  My Urologist said that they get good reading at 0.6 ... I had more problems idenfied than I wished for but I'm glad I didn't wait for 1.2 to pull the trigger... unfortunately for me no hidden bandits to radiate..it's still in the same place and growing slowly....my medical team is reviewing 3 options for me... I'm 3+4, T3B, had surgery in early 2010 and radiation in late 2015 with 5 months of Lupron... Vgama has always steered me in the right direction...all the best

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

BD, I always walk away from this forum feeling better, especially if I get up the nerve to participate. And I agree, Vasco never disappoints. 

Your post interests me because your doctors are making informed decisions based on what I consider low PSA levels. They "get good readings at 0.6"? That is impressive. Can you tell me specifically what kind of scanning technology they are using?

Well, best foot forward! Stay well. And thank you!

bdhilton
Posts: 797
Joined: Jan 2010
RADIOTRACER: This study was performed 68Ga-PSMA-11, which is a PET radiotracer that targets the prostate specific membrane antigen (PSMA) protein found on most prostate cancers. The patient was injected with 4.3 mCi of 68Ga-PSMA-11.   
 
TECHNIQUE:   Following intravenous administration of 68Ga-PSMA-11, CT was acquired from the head to the thighs with intravenous contrast.  This was followed by an emission PET scan started 65 minutes after PSMA injection.  PET images were corrected for attenuation using the CT transmission data.   Acquired and fused PET/CT images were reviewed alongside the PET images.  
 
RADIATION DOSE INDICATORS: 
Exposure Events: 4 , CTDIvol Min: 9.1 mGy, CTDIvol Max: 17.5 mGy, DLP: 1260.3 mGy.cm 
Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Thank you for the information. I was most interested in which tracer element was used.

Many hospitals here advertise just "PET SCAN" without specifying the tracer.

Very helpful, thank you.

Clevelandguy
Posts: 702
Joined: Jun 2015

Hi,

I have included a link to one of the newer contrast drugs used with PET scan for spotting smaller cancer cells.

https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer

Dave 3+4

VascodaGama's picture
VascodaGama
Posts: 3392
Joined: Nov 2010

Yank,

You are correct. The Japanese medical sphere and national health system is very conservative in comparison with the western’s. Japanese doctors avoid individualism and follow restrictive means in 

their decisions staying strictly under the guidelines of their associations. The urologist treating me back 

in 2000 (Dr. Komatsu) had rival ideas against the law regulating surgeons’ responsibilities in treatment 

outcomes, therefore against the justice impartiality in cases of death. According to him, these 

regulations were intimidating and interfere negatively in the decision process of treatments. The 

Japanese FDA type authority regarding medication and practice also delays considerably any 

advancement for good in the system (it takes at least 6 months post USA’s FDA approval to confirm its 

validity).

Though their scientists are involved in the most recent researches of newer approaches in treatment 

(for instance the 2018 Nobel Prize winner Dr. Tasuku Honjo whose work involves now a lot PCa therapy),

rarely are those medications and practices that receive the green light for going ahead with it in 

appropriate timing. For your situation you may find the means separating the items/steps required for 

the treatment. You can have a doctor for the tests and exams, get second opinions from other 

individuals on the results and then get the consensus on the treatment (radiation or surgery/dissecting

or ADT) from other specialists to finally get what you looking for for treated in Japan. You can also get 

the data and visit another country for consultations. (Singapore, China, Australia, USA, EU, etc).

Remember that the Japanese national health security system covers treatments done overseas (except 

at USA) if you present them the receipts (you need to pay in advance). These must be reported in their 

official forms, describing in detail any intervention and medication signed by the medical clinic or 

hospital where you got treatment. The forms are available at the Social Security offices of your 

residence. Your previous employer can interfere in your behalf in applying for this facility.

Accordingly, you may not find in Japan one hospital doing the whole oligo metastatic treatment but you 

may find PET exams at several hospitals. Nuclear medicine therapies involving radioisotopes are also 

running along particularly at places with cyclotrons facilities, but I do not know in which hospital they 

use it for prostate cancer cases. I managed to get sophisticated MRI scans back in 2000 (no reliable PETs 

at the time) at the National Cancer Center in Tsukiji-Tokyo. Doctors at this institution know well where 

to find the 18F-CHL PET or 68Ga-PSMA PET (both radiopharmaceuticals require cyclotrons). Look for 

hospitals with nuclear departments. Here is a link that may help you in getting contacts;

https://pubmed.ncbi.nlm.nih.gov/31236776/

You need to move forwards. Do it all coordinately and timely.

Best regards,

VGama

Note: Sorry for the formating but some days this site doesn't allow me to paste text done in the msc Word which I have to use for spell checking.

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Vasco

Very, very good news about Japanese Health Insurance possibly cover treatment overseas. I will definitely research this.

The National Cancer in Tsukiji is an excellent lead to follow. By the way, just last night I found a hospital that does C11 Choline scans for prostate cancer. I actually visited this hospital several years ago. They had run trials, but the scans were not available then. Now the scans are routine. A lot has changed in 5 years!

Thank you for all your kind efforts.

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