Recently diagnosed with Gleason score of 9

SV

VascodaGama said:

Hi,

Hi,

There have been little advances regarding salvage therapies. Newer radiopharmaceuticals are now used in systemic cases and some treatments using mabs have passed clinical trials phase 3, however the real revolution regards imaginology with PET scans. CT and MRI search for volumes whether PET looks at celular level. Google PET-PSMA for details.

In regards to good hospitals, I recommend you to procure one close to your home because radiation is administered in several sections (about 35) everyday except on Sunday, taking about 20 minutes each time. The facilities should be modern with the latest equipment.

It will save you travel time.

Best

VG

Best equipment

Thanks again. The biggest take-away from my first bout with Prostate cancer nine years ago was that not all surgeons are created equal so would that be similar when choosing a facilty for radiatio treatment? In fact the DaVinci machines themselves varied according to the latest technology and who was using a brand new machine versus one several years old. I live in Palm Desert and it is widely known that we have good doctors here but great doctors in Los Angeles. Would that also be true of technological wizardry?

I just had a titanium spinal implant surgery at Cedar Sinai so I'm already in their system as well as City of Hope but Loma Linda would be closer for daily drives.

Steve1961

Here’s my 2 cents

I did radiation therapy so I know all about it ..for 1 there are organs down around there that also can be damaged  .most likely your cancer will be in the prostate bed ...that being said you have the small bowels and the bladder. And rectum that will receive radiation ....in San Francisco there is a specialist dr david kornguth ..he specializes in radiation for men with prostate only ...men only ..peostae only nothing else ..all hospitals treat all kinds of cancers all day long one after another ...head neck brain next prostate next breast next lung next prostate ..one after another ..some technicians a lot of them are young ...if you can find a place like dr kornguth ..men only relaxing he has reciloners pool table in the waiting room ...and that’s all they do ..you may have different techs everyday at a hospital ..I did it was very unnerving to say the least ...here in ten states it’s monday thru Friday with sat and Sunday off..maybe hard to find  just google prostate radiation and out your zip code in hopefully there is a facility that does prostate only 

VascodaGama

Preparedness - Diligences to be made

SV

I can't help with names of facilities close to you because I live in Portugal. Steve may guide you better; In any case, Loma Linda has been reported here in the past several times as being good. I wonder if their RT machines are modern. True beam seems to be the latest and this can use the same output (computer language) of modern PET/CT machines which would be a plus in regards to accuracy when directing the rays.

The important points you should consider when procuring are:

1) Locate targets for radiation using the capabilities of PET/CT scans. Radiation should be done only one time at the same area so that finding the targets is crucial as the procedure should include whole those metastases. Traditional SRT is done guessing the location of the bandit which logically will be at the area where the prostate was located (prostate bed and close lymph nodes) but cancer could in fact exist at a far place so that image studies are required.
There are various isotopes used in PET exams but the most specific for PCa are tracers with PSMA (prostatic specific membrane antigen) such as 68Ga-PSMA PET or 18F-PSMA PET. Both are perfect for a PSA at 2.0 level.

2) Several RT sections will be done requiring daily drives. Location of the facilities is a matter of concern.

3) The manufacturing of the isotope (radiopharmaceutical) may require cyclotron facilities which does not exist at all nuclear centers. Radiotracers have short half life (20 to 90 minutes) so that the timing of the test depends on the location of the facilities. That may restrict the type of isotope used at certain clinics making them to recommend other types of PET (to fit their interests not the interest of the patient) but these may provide false negatives. You should investigate the type of PET at the place you plan to get the exam before committing.

4) Consultation should be done with Radiotherapists with experience in salvage therapies. You have to inform about any particular in you (titanium spinal implant, etc) that could interfere with the location to be radiated. These guys are the ones that will plan the isodose field.

5) Existing colon issues like ulcerative colitis can prohibit radiation at the area. You should get a colonoscopy in advance. I also recommend you to get a complete lipids panel (blood test) before the radiation. You can do these by your self at the local laboratory where you have done the PSA. Remmenber to include a testosterone which result will serve as a base line if hormonal treatment is included in the RT therapy latter.

Do some researches on the above and prepare your list of questions as detailed as possible. Latter you can get a second opinion on proposed plan.

Best,

VG   

 

Clevelandguy

Get the best

Like I have always said Best doctors+best facilities = Best results.  If you need SV, don't have a second thought about going to see another doctor or hospital network, it's your life...............

Dave 3+4

SV

Correct testing method

Thanks guys. I will return to my primary doctor immediately for a second PSA test then if necessary head for City of Hope. One problem is that a year and a half ago without my request my primary doctor suddenly switched testing method. Please review a few posts back to one titled Bad PSA Test? I receive my results online through Labcorp and was quite alarmed at those results because I did not know how to interpret them. Upon a visit with my primary doctor he said not to worry the test result was fine and that he switched to this method because it provided him more detailed information for monitoring my PSA. I have also read where switching test methods is a bad idea.

Anyways on my test last week I requested to his nurse to switch me back to my previous testing methods. And that result is posted above. But she did not seem familiar with my previous tests. Test previous test resulting were easier to understand because I just kept an eye for any change from .01

VascodaGama

Test method is correct

SV,

Free PSA  has no utility as a marker  in  guys who did prostatectomy. The total PSA is the marker to check any progression of the disease. According to your previous posts, the PSA of Aug 2018 was 0.4 (0.04 x 10), in Apr 2019 was 0.7 and Jan 2020 is 2.0 ng/ml. It has been increasing in the last two years signifying recurrence. I recommend you to prepare your self for the next meeting as I suggested above.

Best

VG

SV

Are there physical signs that

Are there physical signs that the cancer has come back? The last few months my feet have felt cold even though warm to the touch.

VascodaGama

Neuropathy

Symptoms due to  prostate cancer exist in advanced cases in particular with metastasis in bone. Your symptom seems to be related to neuropathy. It could be due to a moment of stress for the recurrence situation. In any case there are several ways to combat the problem so you need to be positive at this not nice moment of your life.

You should do some research about SRT. Knowing what is happening will create peace of mind. Your urologist will explain things. You need to be confident on the next step.

Do not rush and get second opinions from a radiotherapist. Discuss with the doctors about the tests I listed above as these should be done before any treatment.

Best

VG

SV

VascodaGama said:

Neuropathy

Symptoms due to  prostate cancer exist in advanced cases in particular with metastasis in bone. Your symptom seems to be related to neuropathy. It could be due to a moment of stress for the recurrence situation. In any case there are several ways to combat the problem so you need to be positive at this not nice moment of your life.

You should do some research about SRT. Knowing what is happening will create peace of mind. Your urologist will explain things. You need to be confident on the next step.

Do not rush and get second opinions from a radiotherapist. Discuss with the doctors about the tests I listed above as these should be done before any treatment.

Best

VG

Thanks again amigo. Heading

Thanks again amigo. Heading to City of Hope next week.

Steve1961

Wow 9 years

wow u would think after 9 years u had it beat ..sorry ..what was it doing for 9 years ..nothing ..dormant ..I don’t understand all this ..I pray u will knock it out .

SV

Steve1961 said:

Wow 9 years

wow u would think after 9 years u had it beat ..sorry ..what was it doing for 9 years ..nothing ..dormant ..I don’t understand all this ..I pray u will knock it out .

Thanks I thought that I had

Thanks I thought that I had beat it too. But the result just came in from a second test

Total PSA

1.950 ng/mL

<=3.101 ng/mL<=3.101 ng/mL

Guessing this is bad news?

SV

Steve1961 said:

Wow 9 years

wow u would think after 9 years u had it beat ..sorry ..what was it doing for 9 years ..nothing ..dormant ..I don’t understand all this ..I pray u will knock it out .

c

c

SV

Fresh news

Doctors at City of Hope yesterday seemed alarmed that my new PSA score was not 0.2 as I had told when making the appointment but rather it is actually 2.0

The initial rise was probably18 months ago but apparently when my primary doctor switched test methods back then he did not know how to read the new test results. COH did another PSA test which confirmed the prior test: Prostate Specific Antigen (Total),   Blood1.916 ng/mL

They also ordered an immediate PET scan but the nearest opening is not for two weeks. Doctors said there was a chance that radiation may still be an option and would reevalate with those test results. Then came the shot of Lupron which I don't know much about or what to expect or why they were so insistant to do it right away. I would appreciate as much commentary and information as possible.

They provided a sheet showing possible side effects but that is not always the reality. What should I expect with Lupron?

VascodaGama

Was expecting that

Well Amigo SV,

I was expecting that to happen. A shot without previous blood work or exams and a decision on a treatment without preparedness. You may think that you are in good hands and that is what you should feel. I have my doubts.

In any case, Lupron could well be the step to take. This drug makes part of the hormonal treatment protocol (ADT), if such has been chosen or it may be aplied to reinforce the benefits of a radiation treatment (SRT). The shot causes hypogonadism which symptoms vary from individual to individual, being the most noticed fatigue and mood changes.

I wonder if this doctor has given you any opportunity in obtaining a second opinion.

In this link you can read about hormonal treatments;

https://www.cancer.org/cancer/prostate-cancer/treating/hormone-therapy.html

Best wishes and luck in this journey.

VG 

 

 

SV

VascodaGama said:

Was expecting that

Well Amigo SV,

I was expecting that to happen. A shot without previous blood work or exams and a decision on a treatment without preparedness. You may think that you are in good hands and that is what you should feel. I have my doubts.

In any case, Lupron could well be the step to take. This drug makes part of the hormonal treatment protocol (ADT), if such has been chosen or it may be aplied to reinforce the benefits of a radiation treatment (SRT). The shot causes hypogonadism which symptoms vary from individual to individual, being the most noticed fatigue and mood changes.

I wonder if this doctor has given you any opportunity in obtaining a second opinion.

In this link you can read about hormonal treatments;

https://www.cancer.org/cancer/prostate-cancer/treating/hormone-therapy.html

Best wishes and luck in this journey.

VG 

 

 

Thanks again amigo. I too

Thanks again amigo. I too wondered why the doctors put me on Lupron so quick but in retrospect, given the dramatic PSA rise from .1 to 2. within 18 months my guess is they wanted to apply the brakes ASAP. I'm on a wait-list for the PET Scan and already got moved up a few days to January 26, 2020. I've been warned that what we eat and do prior to the PET scan is critical to avoid getting sent home on scan over eating the wrong foods. And that different labs have different rules. Can anyone advise me on this?

Clevelandguy

Pet scan rules

Hi SV,

If it was me I would be talking to the facility that is doing the Pet scan or my Oncologist to find out what foods you should avoid and when to fast.  There is a lot of dos and don'ts on the internet but your doctor or facilty should tell you how to prep.  Good luck................

Dave 3+4

VascodaGama

PET scan

I also think that you should inquire the clinic about the preparedness for the PET. "Dos and Don'ts" are different depending on the type of the radiopharmaceutical used in the exam. In my 18F CHR PET I had to fast but in my 68Ga PSMA PET I could eat (coffee and cake was served to me by the nurse while waiting 60 minutes between the pictures).

I really wonder what type of PET have they scheduled to you, when considering that they have administered a Lupron shot already. As far as I know, only the FDG PET is recommended in ADT guys but this exam is not appropriated for recurrences cases from prostatectomy. PET scan using PSMA is the best and it should be done before any ADT.

Please read this;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182397/#!po=0.714286

I recommend you to be more inquisitive and proceed after knowing the details of what has been suggested by the physician and after second opinions. You are the solo responsible on the outcome of the treatment you will accept to receive.

Best

VG

SV

VascodaGama said:

PET scan

I also think that you should inquire the clinic about the preparedness for the PET. "Dos and Don'ts" are different depending on the type of the radiopharmaceutical used in the exam. In my 18F CHR PET I had to fast but in my 68Ga PSMA PET I could eat (coffee and cake was served to me by the nurse while waiting 60 minutes between the pictures).

I really wonder what type of PET have they scheduled to you, when considering that they have administered a Lupron shot already. As far as I know, only the FDG PET is recommended in ADT guys but this exam is not appropriated for recurrences cases from prostatectomy. PET scan using PSMA is the best and it should be done before any ADT.

Please read this;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182397/#!po=0.714286

I recommend you to be more inquisitive and proceed after knowing the details of what has been suggested by the physician and after second opinions. You are the solo responsible on the outcome of the treatment you will accept to receive.

Best

VG

Thanks again amigo. This is

Thanks again amigo. This is the only information I have so far regarding the PET scan:

Pet CT Fluciclovine F18 (Prostate) Eyes To Thighs

VascodaGama

Axumin PET

 

SV,

The 18F-fluciclovine (trade name Axumin) uses the amino acids metabolized in cells as the pathway to reach the cancer and identify neoplasia. The 68Ga-PSMA uses the membrane antigen of prostatic cells to identify and locate those prostate specific cells that should not exist after prostatectomy.

The Axumin requires that patients rest on the days previous to the exam to avoid metabolism and accumulation of amino acids in muscle tissues. The 18F radio-isotope requires patients to fast (food and drinks) for at least 6 hours before the PET scan. In contrast to this, the 68Ga PSMA is not so restrictive.

Axumin has been approved by the FDA and is the PET most used in the USA. However, the 68Ga-PSMA used in Europe, is also available in the US and is recognized as better than the Axumin. My opinion is that both are good for a case like yours with high PSA levels of 2.0 ng/ml, but the uptake of the tracers in both PET systems (fluciclovine and PSMA) will be affected by the hormonal shot that will cause the prostatic cells to lose activity and metabolizing lesser. In any case, the shot influence will be most evident by the time one reaches castration levels which usually occurs one month from the shot’s date.
Your PET schedule may have been moved to an earlier date for the reason above.

I hope the exam identifies those targets for the radiation.

Material on the above;

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30415-2/fulltext

https://www.accessdata.fda.gov/drugsatfda_docs/label/2016/208054s000lbl.pdf

http://jnm.snmjournals.org/content/59/supplement_1/1470

Good luck.

VGama

SV

VascodaGama said:

Axumin PET

 

SV,

The 18F-fluciclovine (trade name Axumin) uses the amino acids metabolized in cells as the pathway to reach the cancer and identify neoplasia. The 68Ga-PSMA uses the membrane antigen of prostatic cells to identify and locate those prostate specific cells that should not exist after prostatectomy.

The Axumin requires that patients rest on the days previous to the exam to avoid metabolism and accumulation of amino acids in muscle tissues. The 18F radio-isotope requires patients to fast (food and drinks) for at least 6 hours before the PET scan. In contrast to this, the 68Ga PSMA is not so restrictive.

Axumin has been approved by the FDA and is the PET most used in the USA. However, the 68Ga-PSMA used in Europe, is also available in the US and is recognized as better than the Axumin. My opinion is that both are good for a case like yours with high PSA levels of 2.0 ng/ml, but the uptake of the tracers in both PET systems (fluciclovine and PSMA) will be affected by the hormonal shot that will cause the prostatic cells to lose activity and metabolizing lesser. In any case, the shot influence will be most evident by the time one reaches castration levels which usually occurs one month from the shot’s date.
Your PET schedule may have been moved to an earlier date for the reason above.

I hope the exam identifies those targets for the radiation.

Material on the above;

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30415-2/fulltext

https://www.accessdata.fda.gov/drugsatfda_docs/label/2016/208054s000lbl.pdf

http://jnm.snmjournals.org/content/59/supplement_1/1470

Good luck.

VGama

Wow that is some cutting edge

Wow that is some cutting edge information. Thanks. I think that I am experiencing "testosterone flare" from the Lupron at the moment. Any idea on how long that lasts? Given that my PET scan is one week from today I'm thinking that my testosterone drop will be somewhere around the PET scan date. So maybe MY PSA will still be high enough for a good reading?