Is "de-bulking" the original prostate tumor a good idea for men with metastases?

Tony or Allen
Are you aware of any good articles that discuss progression of prostate cancer without an increase in PSA? I know I have read that and in my own case I know that even with distant mets my PSA was pretty low. I am looking for good data to show to my local oncologist who seems to be a rookie when it comes to understanding advanced prostate cancer. He has assured me that we only need to watch PSA and not other lab values from blood draw. I haven't been able to convince him otherwise, although I haven't tried that hard yet either.

Gunner34 said...
Tony or Allen
Are you aware of any good articles that discuss progression of prostate cancer without an increase in PSA? I know I have read that and in my own case I know that even with distant mets my PSA was pretty low. I am looking for good data to show to my local oncologist who seems to be a rookie when it comes to understanding advanced prostate cancer. He has assured me that we only need to watch PSA and not other lab values from blood draw. I haven't been able to convince him otherwise, although I haven't tried that hard yet either.

Gunner34, I'm not Tony or Allen, but I can comment on your question...

First of all, it's troubling that you feel your oncologist is a "rookie when it comes to understanding advanced prostate cancer." You have advanced prostate cancer. Are you able to find another doctor to work with? A great place to look is to go to a local PC support group, meet some guys locally who are being treated, and ask who their doctor is.

Second, you are correct, PSA is NOT the only marker to watch from blood draws. In fact, you've had surgery, radiation, hormone therapy and chemo now...your PSA is probably not even the most important marker to watch. Here's a short list I've previously shared here of tumor markers from blood tests:

* Chromogranin A (CGA) -- elevated levels in some advanced forms of PC that have neuroendocrine features; normal level <50ng/mL. Useful to detect PC in patients whose PSA is not elevated.

* Neuron-specific enolase (NSE) -- like Chromogranin A, is a marker for neuroendocrine tumors. Not a screening test, but useful in follow-up. Normal levels <9ng/mL. Poor prognosis when both NSA and CGA are elevated.

* Carcinoembryonic antigen (CAE) -- predict outlook in patients with colorectal cancer. Also used in PC; if high at diagnosis, can be used to follow the response to treatment.

* Prostatic Acid Phosphatase (PAP) -- An enzyme measured in the blood whose levels may be elevated in patients with PC that has invaded or metastasized elsewhere. A persistently elevated serum PAP is considered evidence of mets, but only 75% of patients with mets have elevated PAP...Alkaline phosphatase is also made by the liver, so high alkaline phosphatase levels can mean liver problems. Serum PAP noted at the time of diangosis of PC is usually associated wtih extra-prostatic spread (but usually also associated with positive DRE)...helpful in directing treatment towards system as opposed to local therapy.

* Calcium -- Bone metastases can dissolve the bones, leading to a high blood calcium level (called hypercalcemia). Although problems other than bone metastases can cause high calcium levels, if a person with cancer has a high blood calcium level, tests are often done to look for bone metastases.


Hope this helps. I do urge you to find a more seasoned oncologist...

Jordan, Jack and John

First - apologies to Allen. Sorry if this thread has gotten off track a couple times. Didn't intend to hijack your discussion.

Thank you - I will review your notes/articles and share with my oncologist if necessary.
Also, I should have been more clear about my oncologist. I simply use a MO from a well respected oncology firm here in Minneapolis to draw my blood and for Lupron. Unfortunately I have to see him in order to get the commodity work done. His local office is only 5 minutes from my house. When necessary (fir example during chemo treatments, etc) I go to 2 other MO's within this firm, but their office is 45 minutes away. So I go through the frustration of seeing a MO that doesn't seem to know much about PCa just for the convenience while I don't have any pressing issues. If any of the lab values are out of whack there are numerous people (see below) including myself that would begin to ask questions. As a financial professional that is used to charting and analyzing data, I am very anal about trends and changes in my monthly lab values.

In addition, I'm not outside the sights of my team at Mayo, whom I correspond with regularly and see at least semimonthly for management (with my Urologidt there) of my PCa and palliative care (medication, QOL, etc) as well as the various scans that include C-11, MRI's, etc.
My labs are copied and sent back and forth along with doctors notes to my MO's, RO and Urologist.
So I appreciate the concern but I am well taken care of. You guys rock.

Geop
I try to avoid giving advice or swaying a treatment decision. That said, I just hope that sharing experiences gives information for others to consider.
I'll try to simplify the approach that I experienced with my own debulking. We first had to resolve the Mets and get the PSA under control. Then, through scans like the C-11 Choline scan, it was determined (an educated guess - not 100% proven) that my PSA was coming from the prostate and/or surrounding area (SV's, etc) and the local lymph nodes. Then we went ahead with surgery, an open procedure - very invasive.
Again - to keep it simple, the idea in my case is to keep getting PSA to zero (and keep other labs in check) through chemo, surgery, radiation and whatever else it takes to keep it there. There is a link to a discussion by a Mayo doc that I will try to find that might be helpful for you. I'll link it in when I find it.
Good luck to you!

Gunner:

I appreciate the advice. I will toss all this to my Onco next month.
I am now going on my 15th month since DX and rightfully nervous that my undetectable PSA vacation on HTx2 could be coming to a crashing end.
Best to take a pro-active approach now vs. when it's too late into the game.
I will also be getting a bone density scan this month to determine if I should at least be on Prolia. Last year all was normal, but that was ancient history. I walk 50 + miles a week for exercise so I want to make sure that I do not fracture a bone during my workout regiment.

I am 56 going to be 57 in April 17th. I was an avid runner for 40 years prior to Dx and gained 30 lbs. since DX and HT. It is killing me emotionally.
Got to cut out carbs as much as I can...Hard to do when HT drugs makes you perpetually hungry.

geop,

I have more questions than answers about it. But I do think that it's worth a discussion with the medical oncologist. Maybe send him the studies in the article and ask what he thinks. I think AKFNomad raises an interesting point - the benefit of at least doing something proactive when one feels victimized by the disease - is a real benefit, even if it is uncertain.

I think surgical debulking is a lot to go through for very uncertain benefit. I would be more inclined to look at radiation - although if the cancer is already interfering with urination, radiation may make that worse (because of the inflammation) before it makes it better. I think that trial in San Diego looks very interesting.

The other advantage of radiation is that it sends a lot of dead cancer cells out into the serum where the immune system locks onto them, and subsequently goes on a search-and-destroy mission to find cancer cells elsewhere. This is called the abscopal effect. If you've followed Nomar Lupron's posts, he enhanced his immune response with Provenge before, during and after the SBRT radiation to his prostate and lymph nodes. For some reason, SBRT seems to evoke a stronger abscopal effect than IMRT.

- Allen

It happens when cancer cells are killed outside of the radiation field. So, for example, if someone has SBRT of one bone met, and a distant bone met shrinks. Radiation throws off a lot of dead cancer cells that switch on a specific immune response to the cancer. The effect may be stronger with extreme hypofractionation for some unknown reason. I don't think it will affect colds or flu - it's very specific to the antigens on cancer cells.

Cicero2K-

Checkpoint inhibitors are drugs (artificial antibodies), like Yervoy or Keytruva, that neutralize the checkpoint proteins on the cancer cell surface (or on the T cells themselves) that allow those cells to evade immune attack. This is why the immune system only kills cancer to a limited extend - eventually, the immune system sees the cancer as "self" and stops attacking. There's an opportunity to augment the innate immune response for a while before the adaptive response kicks in. There are tests of a two-pronged approach with, say, Provenge to augment the innate response and Yervoy to slow down the adaptive response.

- Allen

Gunner,
Sorry for slow response.

Men who have manifesting prostate cancer without rise in PSA are very rare. My understanding is less than 2%. When I cam there there was one such case:

www.healingwell.com/community/default.aspx?f=35&m=1029454

kind of tough to read that thread as two of those men were my dear friends. Gordy never had a rise in PSA before he passed from PCa. War Eagle I spent time with his loving family and friends in Alabama with my wife and those folks are friends forever. But I do miss Mr. War Eagle Walt.

From a Korean case study:

Progression of Prostate Cancer Despite an Extremely Low Serum Level of Prostate-Specific Antigen
Dong Kil Lee, Jeong Hyun Park, Jae Han Kim, Seung Joon Lee, Moon Ki Jo,corresponding author Myung Cheol Gil, Kang Hyon Song, and Jong Wook Park
Author information ► Article notes ► Copyright and License information ►
This article has been cited by other articles in PMC.
Go to:
Abstract
A 61-year-old man who had been diagnosed with prostate cancer 9 years ago and had been treated with pelvic irradiation and intermittent androgen deprivation therapy visited the emergency room because of back pain and weakness in both legs. Spine magnetic resonance imaging showed a lumbar epidural mass and spine metastasis. The whole-body workup revealed multiple metastases to the lymph nodes, bone, liver, and lung. The serum prostate-specific antigen was 0.02 ng/ml. He underwent laminectomy, posterior fixation, and epidural mass excision, and metastatic adenocarcinoma from the prostate was diagnosed. The patient underwent 1 cycle of docetaxel-based chemotherapy. More chemotherapy could not be done because of his general weakness. The patient died one month later of multiple organ failure.

Keywords: Disease progression, Multiple organ failure, Neoplasm metastasis, Prostate-specific antigen, Prostatic neoplasms
The serum prostate-specific antigen (PSA) level has been used since the 1980s to monitor patients after treatment for prostate cancer. The kinetics of PSA after the treatment of prostate cancer make it a sensitive marker for the activity and status of this disease. Many studies have suggested that PSA may be the most valuable factor for predicting the activity and volume of prostate cancer .

Almost all patients with metastatic prostate cancer present with a high serum PSA level. However, progression of prostate cancer can sometimes occur despite a low serum PSA level. Those patients with metastatic prostate cancer and a low serum level of PSA account for less than 1% of all patients with metastatic prostate cancer . There have been only a few reports about these patients. In these cases, androgen deprivation therapy (ADT) is relatively ineffective, and the prostate cancer progresses very quickly . Therefore, the prognosis is generally poor compared with the usual metastatic prostate cancer. Here we report the case of a patient who had multiple sites of metastatic prostate cancer and a low serum level of PSA during intermittent ADT. We also review the related literature.

Tall Allen said...
geop,

...

The other advantage of radiation is that it sends a lot of dead cancer cells out into the serum where the immune system locks onto them, and subsequently goes on a search-and-destroy mission to find cancer cells elsewhere. This is called the abscopal effect. If you've followed Nomar Lupron's posts, he enhanced his immune response with Provenge before, during and after the SBRT radiation to his prostate and lymph nodes. For some reason, SBRT seems to evoke a stronger abscopal effect than IMRT.

- Allen

I can't tell you any thing more about abscopal effect than what you can find by googling it.

I can tell you I followed my mentor Tall Allen;s advice on the topic and saw several medical oncologists, radiation oncologists and urolgists to find the right combination of Lupron, Zytiga, Provenge and SBRT.

Not sure any one of them would have prescribed all of it.

The finalists were medical oncology from Dr Jeffrey Turner an associate of Dr. Mark Scholz and Dr. Richard Lam in Marina del Rey CA and Dr.Chris King at UCLA is my RO. I relied on Dr. Fabio Almeida at AZ Molecular Imaging for C-11 Acetate and F-18 sodium scans.

Along the way I had numerous consults from Univ of FL & Shands Dr. Bruce Stechmiller (MO) and Dr. Robert Zlotecki (RO), plus two reach with Dr. Mack Roach at UCSF and Dr. Brian Moran at Chicago Prostate center.

I live in a rural area of west central FL but fortunately have a son in San Jose CA and a daughter in Chicago area that allowed me to combine family visits with PCa consults.

Feel free to use my contact info for more detail.

BTW if you have never met Gunner34 in person, his slightly out of shape is more fit than many professional athletes.

As beneficial as all these medical experts were I benefit as much or more from Tall Allen and many more of you on this forum and from semi-annual in person meetings called GFMPH Good For a Man's Prostate Health than you can find out more about with a Healing Well forum search rather than diverting the excellent discussion in this thread.