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Father with PSA 477.4 ng/ml

t3zureislnz
Posts: 12
Joined: Mar 2019

Posts: 1
Joined: Mar 2019

Mar 28, 2019 - 1:19 am

Been researching since I saw my father’s dxs couple of days ago. He has nuclear med appt nextweek and CT Scan the week after.

We’re all in shock bec my father is healthy, does not smoke, drink and no other vices. Don’t know where to start ;( 

What treatments, survival rate, cure??? We’re all heart broken esp he just retired from work lastmonth. We threw a surprise party for him, and we’re all excited that he can finally spend more time with is ;(

Georges Calvez
Posts: 279
Joined: Sep 2018

Hi there,

Can you give us more information?
I guess that he has had a PSA test and needle biopsy.
His case could be anything from fairly serious to very serious.
Wait until you have the scan results.
I had a PSA of 144, I thought I was a dead man walking but I am looking good for five and maybe ten years or more.

Best wishes,

Georges

t3zureislnz
Posts: 12
Joined: Mar 2019

Thank you Georges!!

Per his medical record, he has BPH. Makes us upset because his previous doctor never ordered him tests such as biopsy, ct scan  etc. 

He had the same doctor for 17 years!! That’s negligence!! I switched him to Kaiser and he immediately got all appts. Hope all tests are ok nextweek. 

I read consuming fruits and vegetables high in lycopene could lower PSA level so I am making him juices/smoothie. 

Do you follow special diet?

 

Georges Calvez
Posts: 279
Joined: Sep 2018

Hi there,

I was very lucky insofar as I had a very large but very localised cancer that was confined as far as anyone can make out to my prostate and sorrounding structures.
I have had a prostatectomy with radiation and hormone therapy and I have a PSA of zero for the moment.
A PSA of 477.4 is very high indeed and would be associated with metastases but he has a very low Gleason score so the cancer may respond to hormones for some time.
It is very hard to tell with prostate cancer, all cases are different and some are very different.

Best wishes,

Georges

t3zureislnz
Posts: 12
Joined: Mar 2019

I appreciate your response Georges :)

VascodaGama's picture
VascodaGama
Posts: 3018
Joined: Nov 2010

t3,

I understand your family worries as you are now confronting an issue with the unknown. We all have had the same experience after being diagnosed positive.
I was then 50 years old, healthy, professionally successful and without any kind of symptom. It was a big shock when after the biopsy the doctor told me “… you have cancer.” My mind blanked out. I recall leaving the hospital but still do not know how I got home, a place distant about 5 subway stops from the hospital. I only waken up when at home I heard my wife whispering me “… are you OK?”
It hit me hard and my all family suffered with the news.

In the beginning we know nothing about the cancer, and become curious on how it emerges, how it is treated or for how long more we will be living. I though in death and it took me more than 24 hours to start thinking positively. The first thought was in denying the diagnosis. I mimic the fact as being a mistake of the hospital in testing the samples of other patient thinking them to be mine. One week later the doctor confirmed the results and brief me on the issue, recommending me to do some investigations. At the time he gave me a clinical stage of T2b which was a number with no meaning for me. That is when I and my wife decided to explore the pitfalls of prostate cancer. We bought a book and took copies from extracts in the net and took notes on every detail, making it into a thick file.
We discovered what PSA was and the meaning of Gleason score (2+3) 5 in my diagnosis. The clinical stage was dubious and I decided to get second opinions with extra two biopsy needles at a separate institution to confirm if in fact I had cancer and if the Gleason rates matched the diagnosis.  This thick file of copies we made in 2000 is now being recycled to copy my daily Sudoku puzzles. Interestingly I read some of the contents and noticed that the diagnosis processes and treatments recommended back then (19 years ago) are still the same today. The only difference is the use of better image exams and a more comprehensive understanding on the results in timings and combination of treatments. No wonder as now we have a huge number of 20 years of similar cases to serve as examples when judging and recommending modalities in diagnosis and treatment. Particular cases get now more assurances of success.

Radical treatments continue to be those that can provide cure; namely, Surgery and Radiotherapy. Improvements in these therapies along the 19 years, regarding the elimination of cancer, could be seen in the outcomes from radiation with newer modalities in delivering rays and Hypofractionation. Surgery became sort of robotic to shorten the time one stays in the hospital to recover. Less cutting quicker recuperation of the patient but the treatment continues to be a success if the bandit is whole within the gland. Removing it whole provides peace of mind but if cancer has escaped out of the gland, then one will confront permanent side effects caused by the surgery which will add the side effects from addition therapies required to hold the bandit.

Proper image exams can facilitate in the decision of a therapy (surgery for contained and radiation to all others). Without identified targets radiation would also be throwing arrows in the dark. No one can expect hitting the bull’s eyes by chance. In this respect, PET scans are the best as they manage to identify specific cellular targets (smaller in size). MRI and CT provide structural anatomic images that can be identified as lesions, which locations leads to consider them as tumors. However, these anatomic finding have to be over 7 mm in size otherwise they are missed and invoke false negatives.
The tracer used in PET scans should be made up of substances that are absorbed by the prostatic cells. The best is the PSMA (a protein existing in all prostatic cells) followed by choline (18F or C11), fluciclovine (aiming the amino acid in prostatic cells) and glucose (FDG). The most common tracers in PET exams are the ones used as ligands in radionuclide Gallium 68 and the Fluorine-18. Please refer to the following links for details regarding PET scans and capabilities;

https://www.insideradiology.com.au/pet-scan/

https://pubs.rsna.org/doi/full/10.1148/rg.2017170035

https://www.urotoday.com/journal/prostate-cancer-and-prostatic-diseases/107274-the-use-of-pet-ct-in-prostate-cancer-full-text-article.html

http://jnm.snmjournals.org/content/early/2018/11/01/jnumed.118.218495

In your shoes I would read past threads in this forum, get a book on prostate cancer (PCa) and prepare a list of questions for the next meeting with the doctor. In any case, the full diagnosis that include the image exam results and any other health condition of your dad, his age and his preferences in terms of risks from therapies, should be considered in future decisions. The doctor is just helping with suggestions based on his experience, without any responsibility in the outcomes. You should procure second opinions from various specialists.
Daughters and sons sharing the same genes in the family are now fourfold higher in risk of contracting breast cancer or prostate cancer too. They should become more vigilant with periodical tests.

Here is an idea for your List of Questions;

https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html

Here is a compendium on prostate cancer care and issues;

http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

Here is a link for books on PCa;

https://csn.cancer.org/node/311252

Here is a link on nutrition;

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

 

Best wishes and luck in this journey.

Welcome to the board.

VGama

 

t3zureislnz
Posts: 12
Joined: Mar 2019

Thank you very much for sharing.

Georges Calvez
Posts: 279
Joined: Sep 2018

Hi there,

As we have discussed in the other thread his skeleton is clean of major metastases, this is very good news.
We have to wait for the CT scan now to see how much cancer is outside the prostate.
There is really no guessing at this.
He has a very low Gleason score, 3+4, mine was a 4+3 so there is a chance it has not got far.
Fingers crossed.

Best wishes,

Georges

t3zureislnz
Posts: 12
Joined: Mar 2019

He went to see His Urologist this morning. He has Stage 3 and CT scan showed it spread outside prostate. Good news not in his bones or other organs. Dr said he can’t do surgery anymore. He is starting casodex and lupron.

eonore
Posts: 47
Joined: Jun 2017

I heartily recommend a file review and second opinion at a cancer center of excellence.  Also, was radiation discussed?

t3zureislnz
Posts: 12
Joined: Mar 2019

The doctor said radiation won’t work, and will cause unnecessary discomforts; therefore, he is doing casodex and lupron. He goes to Kaiser Permanente. I think they got their Cancer of Excellence.

kidclutch
Posts: 49
Joined: Oct 2017

There has been a recent development about not treating the prostate with radiation after it has spread— my dad is stage 4 and they just did radiation on his prostate at our wonderful cancer center because of the newly discovered benefit. 

eonore
Posts: 47
Joined: Jun 2017

My previous doctor and hospital told me that radiation was off the table.  I got a second opinion at Dana Farber, and transferred my treatment there.  I am now three weeks into an eight week course of radiation, with the hope of a cure.  Getting a second opinion at a major cancer center was the smartest thing I have ever done.  You really should consider doing the same.

 

Eric

Georges Calvez
Posts: 279
Joined: Sep 2018

Hi there,

How far has it spread?
I was diagnosed T3b, I had a prostatectomy plus removal of the seminal vesicles, etc.
I would certainly seek a second opinion on radiation and surgery.
His cancer may not be curable but hitting it hard might give him a lot more time.
Hormones with all the tumour in place may not offer the same advantages.

Best wishes,

Georges

SantaZia
Posts: 64
Joined: Apr 2018

T3 sorry your Dad and family have to deal with this.  You might want to get an understanding of Adaptive ADT where you start on Lupron and add or subtract other treatment as needed.  Here is an exerpt from a recent Wired April 2019 article on the subject (A Clever New Strategy for Treating Cancer, Thanks to Darwin)

In 2017 a doctor in Oregon, inspired by Gatenby’s pilot study, started a prostate cancer patient on a modified version of the approach when he refused the standard continuous dosing. She has since started treating a second man using adaptive therapy. Other oncologists might be doing the same. It’s nearly impossible to know for sure, because adaptive therapy doesn’t require government approval. The protocol uses already-approved medications, and the US Food and Drug Administration doesn’t police specific dosing schedules.

Experts urge caution, however. The prostate cancer study was very small, and without a randomly assigned control group the results aren’t truly reliable. While the majority of the men in the trial remain stable, four more saw their cancer progress since the paper came out. “This is an approach that now needs to be carefully studied in prospective clinical trials before it is adopted into clinical practice,” says Richard L. Schilsky, chief medical officer for the American Society of Clinical Oncology. Years could pass before a large-scale test of adaptive therapy takes place. Len Lichtenfeld, interim chief medical officer of the American Cancer Society, echoes Schilsky’s concerns. “Is it intriguing? Yes,” Lichtenfeld says. “But there is still a long way to go.”

Gatenby agrees that adaptive therapy needs rigorous testing. He conveys a kind of humility you don’t see very often in the upper reaches of medical science. He told me multiple times that he is not an interesting subject to write about, and more than once I heard close colleagues mangle the pronunciation of his name (which is pronounced GATE-en-bee); apparently he had never corrected them. But when he believes in something, he doesn’t relent. And he believes in adaptive therapy. “He’s like a teddy bear, but underneath that soft exterior he’s made of steel,” says Athena Aktipis, who studies theoretical and cancer biology at Arizona State University and has collaborated with Gatenby.

t3zureislnz
Posts: 12
Joined: Mar 2019

His PSA went down significantly!!! He started with casodex, but switched to zytiga. 

We also make sure he continue to eat healthy ( less red meats, egg, sweets). Also, my mom started juicing every morning before breakfast ( mix of celery, carrots, ginger, tomatoes).

PSA results:

5/2/19 = 54.1

4/15/19 = 506.6

3/13/19= 477.4

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