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Prostate Cancer- After RP, Gleason 9 from 6 and PSA relapse

kejongliu
Posts: 5
Joined: Dec 2020

I have searched and studied a few publications and some literature.  This is my first time posting on this very useful forum, so hoping to help others and/or get some inputs.

I am now 49 years old and have been healthy and very athletic in sports. I had an RP in Sep. 2020 when PSA was 32, and the surgeon thought that I could be cancer-free after that.  5 weeks post-RP, PSA was 0.8 and 9 weeks post-RP it was 1.2.  A pathology report in Nov. 2020 was pretty bad with 1/3 of prostate filled tumours with Gleason 4+5=9.  Five (5) out of 14 lymph nodes harvested have 0.1mm to 2mm invasion.  The rating was T3a N1.  Docs schedule me for a PSMA PET/SCAN in the middle of Jan. 2021 and then will decide what to do.  At the present time, No treatment is offered.  I mean no ADT, no SRT, nothing.  Not really sure why both the urologist and oncologist said this to me.  

I am on a daily 400 mg of itraconazole and a daily 20 mg of melatonin medication which is recommended by my naturopath doc.  I also get twice a week of IVC with 50 grams.  Diet is switched from 50/50 veg./meat to 90/10.  Regular exercises with daily infrared dry saunas.  Twice daily meditation with yoga and tai-chi and of course, a positive attitude.   Some history of my cancer history below:

In 2015, my first PSA was 4.0 and DRE was normal. Then PSA keeps elevating. No urinary and erection related issues.

In June 2018, PSA was 12, DRE normal, 1st biopsy with 10 samples with Negative result. No urinary and erection related issues.

In Jan 2019, PSA was 18, DRE normal, 1st MRI with Negative result.  Due to those negative results, the urologist thought I had BPH. No urinary and erection related issues.

In March 2020, PSA was 24, DRE normal, 2nd MRI with Negative result. This result was false negative as the surgeon can find two bilateral grade 5 tumours upon re-examining the 2nd MRI images in July 2020.  First time noticing a smaller urine stream and delay in ejaculation with fluid coming out not once but about small portions in a duration of 2-3 minutes. 

In June 2020, PSA was 30 and the 2nd biopsy was made with 8 samples with Only One Positive prostate cancer tumour sample with Gleason 3+3=6 at the Apex area.  An open-cut RP was scheduled in July but I opted for Davinchi RP in Sep. 2020 due to those findings.  

In Sep 2020, robotic RP was made, docs had to remove nerve bundles due to some findings during the surgery. and my recovery has been great with about 90% continence and 50% hardness of pre-RP with 50mg of Viagra and some arousals.  No health issues so far.

In Jan. 2021, I will have a PSMA PET/SCAN. In Vancouver, there is currently an open trial on Lu-177 PSMA therapy, but docs told me that it may not benefit my case.  Although wondering why not, I found that most patients taking this treatment has T4 prostate cancer with severe metastatic spreading.

Q1: Why Gleason went from 6 to 9 in three months?  I guess the 2nd biopsy didn't tell the whole story, especially since the tumour was on the apex area.

Q2: If I got an open-cut surgery in July instead of Sep. (two-month delay), would this T3a N1 become T2?  I don't think so as this spreading must be happening when PSA went up from 24 to 29 in March 2020. 

Q3: If the surgeon knew I had T3a N1, would he perform RP?  Definitely not as there is no benefit.  I blame all those false-negative results that now lead to more problems.

Q4: With both nerve bundle recession, why do docs still recommends me to try erectile with ED tablet?  I found a publication indicating about low 30% erectile recovery in my case, but this is not my current priority, especially with itraconazole no ED tablets.

Q5: Will this anti-fungal and melatonin medication, IVC, and self-regulated lifestyle allow my body to somehow limit the progression of cancer?  I don't know but fingers crossed on my next PSA and the PSAM PET/SCAN.  

 

Clevelandguy
Posts: 687
Joined: Jun 2015

Hi,

I will try and walk through this with you to the best of my ability. If it was me I would have done an MRI or PET scan before surgery so the docs would know what they are dealing with.

Q1: From what I know and I'm no doctor but you could have 3+3 in one area and 4+5 in another biopsy sampled area.

Q2: The agressive cancer 4+5 can spead quicker than the less agressive 3+3. The cancer could have already been outside the Prostate before your surgery.

Q3: Thats a question for you to ask your doctor.  Most folks here think if its agressive there is a greater chance that it could have spread  outside of the Prostate capsule. Once the cancer leaves the Prostate capsule most people choose radiation to kill the cancer.

Q4:  If it was me I would take the Viagra type drug to go from your current 50% hardness to maybe 75% or 90%?  Its worth a try in my opinion but that's up to you.

Q5:  The two medicines you are taking have nothing to do with preventing the growth of your cancer from want I can find.  The itraconazole is for fungal lung infections and the melatonin is a sleep aid? Good diet is alway a perfect way to stay healthy and help your body heal.

Hopefully after you meet in Jan. to dicuss your PET scan your doctors will recommend your treament path.  If you feel its needed a second opinion might not be a bad idea.  With the best doctors and the best facilities you can to get the best outcome.

Dave 3+4

kejongliu
Posts: 5
Joined: Dec 2020

Thx you for sharing, Dave. I did get both tissue and bone scans before the RP. Both indicated no matastasia. Again, due to the low sensitivity of regulare CT or PET Scan, small tumoura out side of the gland is very likely. i read that PSMA PET-SCAN has a sensitivity of 90%. However, this advanced machine only is available in few large cities. Vancouver just get one in December this year. 
FYI, Both itraconazole and Malotomin have found to work effectively against tumour growth.  

Clevelandguy
Posts: 687
Joined: Jun 2015

Well I wish you the best of luck in your journey.

Dave 3+4

UKMax
Posts: 4
Joined: Aug 2020

Q4: With both nerve bundle recession, why do docs still recommends me to try erectile with ED tablet?  I found a publication indicating about low 30% erectile recovery in my case, but this is not my current priority, especially with itraconazole no ED tablets.

 

The 30% figure came from a Meta study 2 or 3 years ago. People with non-nerve sparing can recover erectile function. Though recovery is less likely, failure  is not the pre-determined outcome many suggest. My Urologist said by far the biggest predictor was the quality of erection pre surgery. If it was spontaneous, rapidly developed and durable, then likelihood of recovery was better. Any small erectile deficit pre surgery is amplified many times.

Persevere - Neurological system function and recovery is not well understood. Erectile function definitely can work again even with non-nerve sparing and anyway  you'll know soon enough if it doesn't.

 

kejongliu
Posts: 5
Joined: Dec 2020

Thx you for sharing your thoughts. Indeed, the paper indicated that people can recover erectile function without nerves are those with good erection pre-surgery and less than 60 years old. Without those, the recover rate was almost zero. My body reacts well with ED tablets but due to the intake of itraconazile I cannot take any ED tablet. I tool it because docs dont give me any treatment and I want to be proactive. 

Old Salt
Posts: 802
Joined: Aug 2014

I will speculate that no ADT is offered right now so that the January scan will better identify cancer-positive sites.

I will also go out on a limb and hypothesize that ADT will be prescribed after the results of the PSMA scan are available.

PS: I am not enthusiastic about the medications prescribed by your naturopath doc. You should discuss them with your medical oncologist after the scan results are available and a therapy has been developed.

 

VascodaGama's picture
VascodaGama
Posts: 3355
Joined: Nov 2010

K,

Welcome to the board. False negative scans due to bad interpretation by radiologists are not common but possible to happen. It seems that your young age (45) has also affected the judgment done by your doctor at your first PSA test of 4.0 ng/ml. I wonder if you have relatives in the family who had positive tests for prostate or breast cancer.

I concur with the opinion of Old Salt above. You should stop immediately the medications/vitamins recommended by your naturopath as these may interfere with the effectiveness of the PSMA PET scan. You may risk again another false negative.

Regarding your questions, I wonder if Gleason rate 5 had been present from the very beginning, probably as far as from when you were 45 years old. Gleason rates 4 and 5 tend to form solid tumors (small in size at the beginning) where Gleason rates 3 tend to form micrometastases colonies. These are hard to find with traditional scans and small tumors (1 to 2 mm size) can easily escape being stricken in biopsies.

Independently of the status of a patient, urologists tend always to recommend surgery as much radiotherapists recommend radiation. Both therapies have limitations in systemic cases and both can be considered recommendable if the diagnosis is trustful without false negatives. Urologist's decisions depend much on the several test results (scans, DRE, biopsy, symptoms and age of patient). In your case history with so many negatives any one could fail.

Fortunately to many survivors, ED is recoverable. It seems that constant sex or masturbation or pills after RP leads to fast recovery. The importance is focus on oxygenating the penis cavernous area forcing blood flow at the area. Our body will find ways to replace the lost nerve bundles too by its natural behaviour. This takes time to occur but it will eventually happen.

I wonder since when you have been taking the naturopath medications. The Itraconazole can interfere in the advancement of the cancer as it avoids the manufacturing of dihydrotestosterone that is much procured by the bandit. It is similar to Ketoconazole (ADT drug) that was used by famous PCa medical oncologists before Zytiga appeared in the market. The Melatonin on the other end is prejudicial to PCa patients as it tends to raise growth hormones levels in the blood which directly influences the advancement of prostate cancer. ADT affects the results of the PET scan. I recommend you to stop taking these till you get the exam, but you should inform your doctor in advance as these medications may interact with any future treatment. Snake-oil type of medications has no room in PCa therapy.

Best wishes,

VGama

 

kejongliu
Posts: 5
Joined: Dec 2020

Hi VGama,

Thank you for writing your comments. 

For the two medications that I currently take, I do believe that Melatonin is prejudicial as publications are limited while itraconazole has many publications available.  Most studies found 25-50% reduction of PSA in two months of trials with doses ranging from 200 mg/day to 600 mg/day. All results show neither reduction nor increase of testosterone levels; unlike ADT or Zytiga.  But for sure, I will let my surgeon and oncologist know about this medication before the PSMA-PET-SCAN in the middle of January. 

For now, I am still now sure why the docs not giving me any medication or treatment until the scan.  They could've given me ADT/SRT (salvaged) right after RP.  One reason I could think of is that they may prefer tumours to grow bigger for targeted treatments instead of just blind shooting and leave me with some side effects.  

I do believe an often happy mood, quality sleep and rest, supplement vitamins (B, C, D, E), more veg. diets, regular exercises and infrared dry sauna are effective to bring up my defence system to somehow minimize the progression if not curing those tumours.  

I will post updates after my next PSA and Scan results then.  Thank you again. 

VascodaGama's picture
VascodaGama
Posts: 3355
Joined: Nov 2010

K,

You are right, Itraconazole does not decrease the levels of testosterone circulating in the body but it avoids the “fabrications” of dihydrotestosterone which is produced by the cells from testosterone. It is classified as an antiandrogen drug in the group of ADT. Typically its use is recommended by medical oncologists. Rarely do you see an urologist prescribing these sorts of drugs to PCa patients. Zytiga has been FDA approved to treat PCa and works similarly in preventing the “fabrication” of dihydrotestosterone but it is very expensive. Itraconazole (or Ketokonazole) is cheaper but it causes more side effects.

ADT drugs that lead to low levels of testosterone are the famous LHRH agonists (Lupron, Eligard, Zoladex, etc) and antagonists like Firmagon, which forces the pituitary to stop ordering the “fabrication” of testosterone by the testis.

I was caught with prostate cancer when I was 50 years old (20 years ago). At those times image studies were lesser reliable in detecting PCa so that doctor’s decisions and procedures principles (guidelines) were based on past experiences, which differ from those used today. With the newer means in scans (particularly PET exams), doctors tend now to rely more on the results from imaging science if these have lesser probabilities in false negatives. They also do not recommend blind SRT if cancer is found at far places which case is then considered as systemic, requiring sytemic type of treatment.

The guidelines based of past experiences would recommend SRT to those recurring post RP with PSA levels above 0.2 ng/ml. The procedure was done in the dark so that achieving cure could be judged as a case of luck. Nowadays luck is also required but at least one knows that one is not systemic and that the aiming targets will strike the identified bandit killing it for good. Radiotherapists depend on the professionalism of radiologists in interpreting the films so that getting the tests done at modern facilities involving experienced physicians is a step forward for a good outcome. You are doing well in preferring quality diets and better means of living.

Best wishes in your continuing journey.

VGama

kejongliu
Posts: 5
Joined: Dec 2020

Hi VGama,

Just want to share my findings since the last post in Jan. 2021.  The novel and expensive 68Ga-PSMA-PET-CT scan in Vancouver didn't find any lesion in Feb. 2021. Several articles have stated that there is still a 5%-10% chance that the scan result could be a false negative.  A conventional bone scan was done in March 2021 with no positive lesion.  Doctors suspect that multiple tumours must reside and grow at lymph nodes.

 

PSA is still going up crazily at 7.0 mcg/L (March) from 3.4 mcg/L (Feb.), 2.1 mcg/L (Jan) and 1.2 mcg/L (Dec.) This 105% monthly PSA increase was too much and clueless.  I still have good diets, exercise and sleep.  

I have tried multiple supplements such as MCP, DIM, Quercetin, mushroom extract, garlic, antioxidants and even weekly high-dose vitamin C via IV.  None has worked.  I stop taking Itraconazole as its effectiveness is questionable.  I started the 21 days daily oral Bicalutamide (50 mg) and the Zoladex injection (10.8 mg per every 3 months) this week. Both medications should be able to knock down PSA and testosterone levels pretty fast.  This will give me some relief but I know some side effects may come up soon. Not sure what else can I do to balance quality of life and ongoing... 

Kevin

 

VascodaGama's picture
VascodaGama
Posts: 3355
Joined: Nov 2010

Hi,

The increase of the PSA is exponential. If my calculations are correct, it has increased from 0.8 to 7.0 ng/ml (7.0 mcg/L) in just 5 months. Cancer may exist in the blood stream, probably in the lymph nodes as commented by your doctor, which is a very bad prognosis.

Your pathological stage T3a N1 signifies that the pathologist identified cancer at the bladder neck (base of the prostate). THis is an area where the images from the PSMA-PET are usually blurred and malignancy is unidentified. In other words, the whole bladder (and probably the ureters) is seen with radiotracer uptake which is expected to occur due to the natural urinary excretion of the tracer but the radiologist by norm will not describe it as cancer. This could well be a false negative in your PET exam results. There are standards to interpret and report PET results. Some areas in the body where the tracer accumulates are considered negative by default. For instance at the mouth and parts of the bone marrow. The timing of the photography and excretion of the tracer influences the reading. In Europe it is possible to get the same PET scan but using the 18F-PSMA radiopharmaceutical which is not influenced by excretion as the 68Ga-PSMA.

Nonprostatic diseases on PSMA PET imaging: a spectrum of benign and malignant findings | Cancer Imaging | Full Text (biomedcentral.com)

I wonder how many lymph nodes have been dissected at RP and their location. Robot type of surgeries has limited access to lymph nodes (short robotic harms) so that the operator tends to dissect the closer inguinal nodes. The lumbar nodes are deep inside and could escape the radiotracer if the image of the area is taken too early into the test. The iliac nodes are usually the route taken by the bandit to travel to far places.

Can you provide us copies of the PET report and the Pathologist report? I would like to see more details on the findings.

I believe that your doctor is seeing you as systemic even with a negative BS. ADT will arrest the PSA but you may also want to stop for a while taking those vitamins. These are good to all body cells inclusive those malignant that we want to kill.

I will wait for your update on the effects of ADT.

Best,

VGama

Old Salt
Posts: 802
Joined: Aug 2014

I concur that it would have been likely, considering your PSA, that a PSMA scan would show something somewhere. But the result appeared negative. Vasco gave a possible reason (good for him!).

I (a medical nobody) tend to agree with the interpretation of your oncologist, pointing to the lymph nodes. But why didn't they 'light up' in the PSMA scan?

Considering the rapid rise of your PSA, I also agree that ADT is necessary. Hopefully, the side effects will be tolerable. 

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