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Recently diagnosed with Gleason score of 9

SV
Posts: 132
Joined: Sep 2010

My biopsy last week revealed a few fives and sixes but the ugliest was a score of 9. The strange thing though is my PSA score of 5 about six months ago. Because of the high Gleason score, my urologist suggested the DaVinci surgery and a second opinion. After numerous recommendations and a consultation with Dr. Kawachi at City of Hope we agreed to his soonest surgery date of October 28 2010. When asking him about diets and so forth, along with the suggestions of garlic, tofu, cooked tomatoes, yogurt and so forth, the seemed to emphasize staying slim and active.

I am 58 year old recently retired competing athlete so I am in great physical shape and well aware of the powers of positive thought. Something else interesting is Dr Kawachi pointing to my girlfriend and saying that she is my best weapon. There is no disagreement there as she has not flinched for one second when it came to standing by my side to beat this disease. She also subscribes to the notion, if you can believe it, you can achieve it.

So far, I only know of the horror stories posted on the internet regarding the outcome of Gleason 9 cases and how there is not much to look forward to after surgery. It is my belief that in due time, I will return to a fully functioning man only minus semen. Is there any positive stories out there to support this possibility?

bdhilton
Posts: 788
Joined: Jan 2010

Yes I understand and totally believe in “With the faith of a mustard seed...” from past life experiences… I first saw my mother do this over 26 years ago with multiple myeloma (she is still with us at 85 and is beyond active)…Diet and positive thinking has keep this at bay with no treatments (yes she sees a oncologist 2 times a year)…I am a big believer in believing…

Peace to all

hopeful and opt...
Posts: 2310
Joined: Apr 2009

Many times we recommend that there be a second opinion by an expert of the pathology that is taken, since it is complicated to determine a gleason score........I wonder, did you have a second opinion of the pathology from your biopsy?

Thank you for posting your story of hope and positive thinking

SV
Posts: 132
Joined: Sep 2010

Although I am not certain if City of Hope reevaluated my original G9 score from Bostwick and concurred, but Bostwick is a well known lab specializing in prostate cancer, and them being far off the mark is highly unlikely. Even when biopsies are double-checked by another lab, I have never heard of one being more than one Gleason grade off and that is always upward! Mine went down two points, so think about that.

Equally astounded because my pre-op prophesy came true, my surgeon, Dr. Kawachi, did not know what to say nor could he offer an explanation. But I can. Faith and the power of positive thought combined with actively attempting to control the beast with proper diet and life style changes. (One tool does not work without the others.)

When reviewing this site and others, I am stunned to hear the complaints of guys with prostate cancer pissing and moaning about giving up their ice cream and cigarettes--most who have not even done it yet! It is these men who have all the doubts about how I beat my disease. Once diagnosed, if you are not immediately researching 24/7, your chances for survival will surely just be based on what is typical according to statistics. The choice is ours, stand up and fight or lay down and die.

hopeful and opt...
Posts: 2310
Joined: Apr 2009

...that's what we are.............(by the way, I beleive that the former sec of state under Bush, came up with the phase(I forget his name now))

Bostwick, as I understand is an excellent lab..........but , people make mistakes.

Your right, people moan and groan about life changes, and quite often do not make them...I'm glad that you are making these life changes, which are heart healthy...we are more likely to die from heart disease rather than prostate disease.

By the way, how many surgeries has Dr. Kawachi done now. He and his patner Wilson have a very good rep...........Also what was your opinion of the hospital support staff?

bdhilton
Posts: 788
Joined: Jan 2010

Big believer in diet and exercise…they are the only two things you control with this beast-peace

hopeful and opt...
Posts: 2310
Joined: Apr 2009

heart disease, by far the number one killer of men; diabetics, colon cancer, etc, etc. Also quality of living is lot better among those exercise and eat right than among those who do not.....Like you, I have been eating right and exercising most of my life.

bdhilton
Posts: 788
Joined: Jan 2010

One thing for sure is that we are all in a lottery-the ultimate game of chance, and someday our luck will run out. Everybody dies. There's nothing we can do about it...so in the mean time live well and enjoy...

SV
Posts: 132
Joined: Sep 2010

"By the way, how many surgeries has Dr. Kawachi done now. He and his partner Wilson have a very good rep...........Also what was your opinion of the hospital support staff?"

After being recommended by so many other California urologists and asking a staff member that question, I was only told that Dr. Kawachi has done thousands. From what I hear, Dr. Wilson is a good surgeon also.

City of Hope was indeed a pioneer in robotic surgery, even ahead of Mayo on that, but as I was warned, the follow up is not so good. Because Dr. Kawachi is in such demand, he is doing three surgeries per day, several days a week. This means another doctor does his pre-op and post-op, while he does meet clients for initial consultations. But I knew that going in and that is fine with me because as long as I had the best surgeon, I could handle the rest of what amounts to hand-holding.

I also discovered years ago, that specialists only know their field. When asking a knee once surgeon, "What about rehab?" He indicated that he had no clue because his job was only knee surgery. He was also the best man at that time for surgical repairs but I doubt he could fix a broken arm. And that is what I wanted for yanking out my prostate...someone who lives and breathes nothing but prostate removal 24/7. This is why so many surgeons know zero about diet and nutrition, it is simply not their field of study. They only believe in published double-blind studies and so forth.

The power of positive thought is like magnetism and gravity, we know it exists, but no scientist can explain it. For me, I target everything I do and state exactly what I intend to accomplish. That is step one, to be followed by action. I spoke firmly to medical staff that they would discover in my post biopsy report, a lowered Gleason score. I stated that I would be continent when the catheter came out. And the biggest relief was last night when I stated that at twelve days past surgery, I would have successful intercourse (Vitamin V assisted) with my woman. This is after riding my motorcycle the day after catheter removal, a day at the gym (ever so lightly) and yesterday, thirty minutes on the elliptical machine. I decided several decades ago that to be successful in life, I must do everything that I state I will do-- goals large or small.

Sometimes we just gotta bite the bullet...and DO IT!

SV
Posts: 132
Joined: Sep 2010

Since I will be having another urologist closer to my home do my followup, I picked up my own 6 week PSA test results today. My score was <0.1 using Siemens Advia Centaur Chemiluminescent method. (There was also a tiny number one written up to the right of the number one) Is this good news or bad news?

For a little over a month now I have been working out every day and having nightly intercourse with a 3/4, Viagra-assisted, erection. Maybe once a day if I swing a leg around too quick I dribble a few drops but other than that, I am fully continent. Down at the dojo last week I tested myself for wrestling to see if I could hold a two hundred pound man with his weighted knee in my belly. This went well until I asked him to bounce, causing a slight leakage with some lower abdominal pain. I am not positive but I suspect that I might also leak a few drops during intercourse or while climaxing. Is this normal?

SV
Posts: 132
Joined: Sep 2010

After reading conflicting opinions about Gleason scores, until today I was not sure what the difference was between <0.1 and <0.01. My new followup urologist confirmed that they both mean the same...as in none detectable. Whew!

I have discovered though that riding a motorcycle causes me to leak a few drops when getting on and off and sometimes when standing up or sitting down. This did not occur until I started riding for more than an hour at a time so it is a step backwards. Looks like I will have to customize the seat by hollowing out a section to relieve the pressure where my prostate used to be and is now irritating my sphincter.

VascodaGama's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

Hi SV
I read your story along this thread and I do congratulate you. It was a great fight against all odds of treatments and against the negative opinions by some posting here. Your attitude conquered the souls of many here, and it will be inspiring for many new comers.

These symptoms you are experiencing are quite normal after the surgery particularly if you are so active in your lovely nights. It is natural for us RP survivors of ejaculating urine when at the arousing timing. Nerves transmitting the sensation will find a different path to get to the objective and with the lack of the previous ones the nerves controlling the sphincter are used as substitutes, giving that explosion sensation. Hopefully they do not get inflamed and become obstructive when peeing. (I experienced that)

Your PSA results within the brackets 0.1 and 0.01 are normal. Remission is considered in values lower than 0.05. The new third generation ultrasensitive PSA tests give still more accuracy with three decimal places (0.XXX ng/ml), showing still an earlier timing of any progress in the treatment, but you do not need it.

I wish you the best in your journey.
VGama

SV
Posts: 132
Joined: Sep 2010

correction

Ken H
Posts: 1
Joined: Dec 2010

SV,

I am a 57 year old male and was diagnosed last August. My PSA went from 2.3 to 9.7 in 13 months. Biopsy was a gleason 9 with 11 of 12 samples containing cancer. Pre-surgery bone scan and MRI did not indicate any spread of the cancer. I had surgery (DiVinci) on 7 Oct and all lymph nodes were clear of cancer. My 8 week PSA was none detectable (<0.05). Other than a second hospitialization for a staph infection my recovery has gone pretty smooth. I am back in the gym and increasing my strength and endurance every day. I plan to see an Oncologist after the first of the year to discuss additional treatment options. I'll post additional information when available.

Hope your doing well. Ken H

VascodaGama's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

Hi Ken H
Welcome to the board. Thanks for sharing your experience. I cannot understand your comment regarding your plan to discuss “additional treatment options” with your oncologist. Your status is just fine and hopefully it will hold for a long time.
Do not be anxious, enjoy the season and have a good New Year.

VGama

SV
Posts: 132
Joined: Sep 2010

x

SV
Posts: 132
Joined: Sep 2010

Glad to hear that you are doing well amigo. I too, am back in the gym with full strength recovery, that is, I am as strong again as I was the day before surgery 10/19.

I leak one or two drops when lifting maximum loads and sometimes when climbing off of my motorcycle. We have cut out a 2" strip of the foam seat padding to relieve pressure where my prostate used to be but now likely is where my sphincter is located. Something in that area compressed uncomfortably but now it is less so.

I am still using vitamin V but graduated from 3/4 erections to full on towel rack able to cut diamonds. Trouble is that it fades slightly after beginning intercourse but less and less every night. Sex and orgasms in general seem to improve and grow longer with practicing Kegels.

And two weeks ago I had surgery to laser a 15mm uric acid kidney stone. There was some complication so the doc only blasted about a third of it. We are now trying to dissolve the rest by neutralizing my pH with Uricet.

Best of all, the positive attitude and rock solid belief system combined with a full on organic diet free of sugar and dairy makes me feel like a million bucks. Even when I eventually die I'll have a smile on my face.
Happy New Year my brothers

SV
Posts: 132
Joined: Sep 2010

Hi guys. I just received results from my third PSA test and it continues to be a <0.1. Although my sex life is nearly returned to normal, about three months ago I experienced a regression in erection firmness. That temporary mysterious step backwards has ended along with nearly zero dribbling, even when lifting free weights and motorcycle riding for long periods.

To be safe, we've also remained on a healthy diet of fresh organic vegetables, organic chicken and wild caught cold-water fish. We're still zero sugar but do use very small doses of honey or agave on our organic oatmeal. Dairy is mostly off the table too except once in awhile on a cheese pizza.

With all of the pros and cons about Pom juice, just for the heck of it I take a few swigs a day along with lots of fresh organic berries and two aspirin. If I had to guess, I'd bet that I'll be on vitamin V for life but at age 59 that is not so unusual, with or without prostate problems.

And most of all, I want to thank all of you who contribute such valuable information and encouragement to all of my fellow cancer warriors. The debate will likely go on about the best treatments and so forth, just remember that after you've adequately researched all options that relate to your case, believe, believe, believe. It's the power of positive thought that will always give us the vital edge that can save our lives.

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VascodaGama
Posts: 3329
Joined: Nov 2010

SV
Glad to read about your continuous “remission”. It wouldn’t surprise me if you report improvements in your other health indicators too. Continue those cautionary actions trough diet and physical fitness and you are back-to-the-begining.

Wishing to read more of those <0.1 in your posts.

VG

SV
Posts: 132
Joined: Sep 2010

I am happy and relieved to report that my sixth 90-day, post-surgery PSA test is still <0.1
Although my sex life has mostly returned to normal thanks to Vitamin V, when lifting heavy items at awkward positions I occasionally continue to squirt a drop or two. As confident and positive as ever, for some odd reason the day of PSA testing, and especially the day after when I go to pick up my results, my stress level rises dramatically. Even after the nurse hands me the results I believe will reveal <0.1, I am so shook up I have to sit down for a few minutes and catch my breath. What's up with that?

hunter49
Posts: 210
Joined: Oct 2011

Great news very happy for you. Keep pulling a zero

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VascodaGama
Posts: 3329
Joined: Nov 2010

We all love the Zerrrros.
Congratulations
VG

SV
Posts: 132
Joined: Sep 2010

Although i don't post here much anymore, I still check in occasionally to see what's new. Last November, I completed the required two-years of 90-day PSA tests and since I was still pulling zeros, I graduated to six-month PSA testing--to which are still zeros.Next November when I continue with zeros, my doc says only once-a-year for life.
Here are a few comments regarding what has occurred since surgery.
1. Unfortunately, the love of my life who so graciously helped me through this process, chose to move on a year after surgery. I suppose the strain of the battle ultimately took its toll.
2. I continue to remain very sexually active with the help of a 100mg Viagra. BUT--no Viagra, no sex. This of course, nearly eliminates spontaneous sex but we do get creative.
3. During one out of ten sexual encounters, I squirt a few drops while erection is growing--none during climax though as before. This is embarrassing but I have become skillful at concealing this.
4. In experimenting with and without doing Kegel exercises, for some odd reason, I discovered that doing Kegels had become counter-productive in controlling those erection dribbles.
5. Even with my anatomically-correct motorcycle seat, with the two-inch strip cut out, riding for long periods is something I should not do anymore as it appears to irritate those nerves. More riding equals more dribbling.
6. At sixty-one, I still wrestle in Jiu Jitsu three times a week and do Yoga three times a week--making me feel twenty-one. No dribbling during either workout.
7. My diet consists of almost no red meat, mostly chicken and fish, with lots of organic fresh fruit and vegetables. I do take Vitamin D supplements, DHEA, and Glucosimine for my worn out joints.
8. Every morning, after an 8 ounce green smoothie of spinach, apples and oranges, I practice breathing techniques and mediation. (three smoothies a day.) One recommendation for all is to march on down to Costco and spend $375 on a Vitamix.
9. With heart disease in my family, I get checked regularly and just to keep my cardiologist happy, take the recommended daily dosage of aspirin.
10. I had my testosterone checked last year and it was in the low six-hundred range and then recently, to discover it had dropped to the low fives. Missing the feel-good experience of Testosterone Replacement Therapy, I am tempted to go back on it. Any opinions on this?

SV
Posts: 132
Joined: Sep 2010

It's been eight years of post surgical bliss with the ability to have a normal sex life and very sporadic urine leakage if lifting something at an awkward angle. All of my blood tests over the years  have come back perfect until today. It's been a year since my last test can anyone tell me what the next step is?

Roche ECLIA methodology.
According to the American Urological Association, Serum PSA should
decrease and remain at undetectable levels after radical
prostatectomy. The AUA defines biochemical recurrence as an initial
PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory
PSA value 0.2 ng/mL or greater.
Values obtained with different assay methods or kits cannot be used
interchangeably. Results cannot be interpreted as absolute evidence
of the presence or absence of malignant disease.
PSA, Free 0.04 ng/mL N/A ng/mL
Roche ECLIA methodology.
Free PSA/PSA Ratio 10.0 % %
The table below lists the probability of prostate cancer for
men with non-suspicious DRE results and total PSA between
4 and 10 ng/mL, by patient age (Catalona et al, JAMA 1998,
279:1542).
% Free PSA 50-64 yr 65-75 yr
0.00-10.00% 56% 55%
10.01-15.00% 24% 35%
15.01-20.00% 17% 23%
20.01-25.00% 10% 20%
>25.00% 5% 9%
Please note: Catalona et al did not make specific
recommendations regarding the use of
percent free PSA for any other population
of men.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3623
Joined: May 2012

SV,

I may be quite wrong on this, but I do not think that mainstream recurrence criteria pertains to the Free PSA form of PSA testing. I know that is certainly not what most doctors use in the US.  My Urology Group (around 15 surgeons) virtually never uses Free PSA testing at all, even in the initial diagnostic process. I do not see any Total PSA Result in your post above, only a free PSA result (that is how it is labeled).

I have always viewed the free PSA process as a form of hand-wringing for pre-confirmed PCa patients; a way to worry more about interpreting results instead of just getting a biopsy, which is the only authoratative way for determining PCa anyway.

The Probability Chart you show also includes DRE data, which suggests to me that it is not intended for post-RP patients.  (A guy with a bad DRE following R.P. has way bad problems one would suspect.)

 

 

VascodaGama's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

Max's opinion is correct and I think you meant to write "Total PSA = 0.04 ng/mL". The free-PSA is usually expressed in percentage to have a meaning in PCa issues; however, this free PSA marker has no utility in guys without the gland in place (RP).

The 0.04 value is low and it alone doesn't provide you any relevant information too if not in context with other PSA results. Can you describe the PSA histology since operation?

Best,

VG

 

SV
Posts: 132
Joined: Sep 2010
PSA, Total 0.7 ng/mL 0.0 - 4.0 ng/mL
Roche ECLIA methodology.
According to the American Urological Association, Serum PSA should
decrease and remain at undetectable levels after radical
prostatectomy. The AUA defines biochemical recurrence as an initial
PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory
PSA value 0.2 ng/mL or greater.
Values obtained with different assay methods or kits cannot be used
interchangeably. Results cannot be interpreted as absolute evidence
of the presence or absence of malignant disease.
PSA, Free 0.11 ng/mL N/A ng/mL
Roche ECLIA methodology.
Free PSA/PSA Ratio 15.7 % %
The table below lists the probability of prostate cancer for
men with non-suspicious DRE results and total PSA between
4 and 10 ng/mL, by patient age (Catalona et al, JAMA 1998,
279:1542).
% Free PSA 50-64 yr 65-75 yr
0.00-10.00% 56% 55%
10.01-15.00% 24% 35%
15.01-20.00% 17% 23%
20.01-25.00% 10% 20%
>25.00% 5% 9%
Please note: Catalona et al did not make specific
recommendations regarding the use of
percent free PSA for any other population
of men.

 

SV
Posts: 132
Joined: Sep 2010

I just received latest test results. How bad is it?

PSA, Total 2.0 ng/mL 0.0 to 4.0 ng/mL0.0 - 4.0 ng/mL
Roche ECLIA methodology.
According to the American Urological Association, Serum PSA should
decrease and remain at undetectable levels after radical
prostatectomy. The AUA defines biochemical recurrence as an initial
PSA value 0.2 ng/mL or greater followed by a subsequent confirmatory
PSA value 0.2 ng/mL or greater.
Values obtained with different assay methods or kits cannot be used
interchangeably. Results cannot be interpreted as absolute evidence
of the presence or absence of malignant disease.

 

VascodaGama's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

SV

PSA=2.0 ng/ml means recurrence. You need to think in a salvage treatment. Typically it involves radiation therapy with or without hormonal drugs. You can visit the same hospital that treat you in 2010 or a radiology clinic closer to you. Everything starts with a consultation but you should get an image exam to try locating the bandit's hideaway. PET scan is the best in recurrences from surgery.

I recommend you to do some research on salvage therapies before the consultation so that you will be prepared to question the physician.

Best wishes and luck in your continuing journey.

VGama

SV
Posts: 132
Joined: Sep 2010

Thanks amigo. I was hoping that there had been some medical advances for prostate cancer in the last nine years. I was happy with City of Hope but is there a better hospital anywhere that we could consider "the best."

VascodaGama's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

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

SV
Posts: 132
Joined: Sep 2010

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
Posts: 301
Joined: Dec 2017

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's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

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
Posts: 664
Joined: Jun 2015

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
Posts: 132
Joined: Sep 2010

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's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

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
Posts: 132
Joined: Sep 2010

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's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

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
Posts: 132
Joined: Sep 2010

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

Steve1961
Posts: 301
Joined: Dec 2017

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
Posts: 132
Joined: Sep 2010

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
Posts: 132
Joined: Sep 2010

c

SV
Posts: 132
Joined: Sep 2010

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's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

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
Posts: 132
Joined: Sep 2010

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
Posts: 664
Joined: Jun 2015

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's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

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
Posts: 132
Joined: Sep 2010

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's picture
VascodaGama
Posts: 3329
Joined: Nov 2010

 

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
Posts: 132
Joined: Sep 2010

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?

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