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PSA the only indicator treatment is working

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Posted 5/23/2013 5:58 PM (GMT 0)

Just to give a brief background my Father was diagnosed August of 2012 with Stage 4 , PSA of 32 at the time of Diagnosis, Gleason 10 Prostate Cancer with mets to the lymph nodes, hip bone and spinal T11. He was admitted into the hospital due to extreme weight loss of 20 pounds, rectal bleeding, and bone pain. My Father is 61 years old, was in Vietnam has since been confirmed that Agent Orange caused this. Prior to diagnosis he ran 3 miles a day and is a vegetarian. Doctors diagnosed his Prostate cancer as rare and aggressive and believed prior to final biopsy that is was a sarcoma. They found cancer in all 16 cores of his prostate and labeled it as a Necrotic Carcinoma.

 As of February of this year my Father's PSA level has gone from 0.004 to 0.22, 0.17, and now is 0.13.

He is also experiencing shortness of breath, when he speaks it sounds as if he is breathy, runny nose, and and a periodic cough?

The doctors at NIH are mainly focused on his PSA level, and he was informed to today that if they see a spike in his PSA again then they will put him on Provenge?

My question is as far as his PSA should the doctors only rely on this as a measure of the disease, and should they request more scans due to his latest symptoms I described earlier?

Once again thank all of you for your comments and suggestions.
Posted 5/23/2013 7:33 PM (GMT 0)
Ascott, first off, wanted to welcome you to our little corner of the world. I'm sorry you have to be here but glad that you found us.

Necrosis means the death of cells or tissue due to permanent damage, and it can occur in any organ. Since your dad's last biopsy confirmed the presence of prostate cancer, regular monitoring of his PSA through blood tests makes sense. However, when was the last time your dad had any scans done to check the status of his condition and monitor how the HT was working? I am concerned about your dad's shortness of breath and coughing (the runny nose may just be allergies and a post nasal drip will cause coughing as well). If I were you, I would talk to his doctor at the NIH and see that his lungs are checked if for no other reason than to make sure there's no infection setting in.

Hope you and your dad get some answers.
Posted 5/23/2013 8:34 PM (GMT 0)
Thank you so much for replying to my message. It is very rare that I see anyone that has his results online, as a result it has been difficult to get responses.

My Father has not had any scans since August of last year? The Doctors are strictly monitoring his PSA and if it spikes again then they will run scans.

He also experienced dizziness when bending over during yard work a few weeks ago.

Is this normal to have these type of symptoms with Zoladex?

Please advise.

Thank you,

April

Posted 5/23/2013 8:54 PM (GMT 0)
April - I am very sorry to hear about your dad's illness. My dad passed away from prostate cancer, so I might understand a little bit about what you are dealing with. There are some other markers or tests that can be used, in addition to PSA, to evaluate cancer progression, including carcinoembryonic antigen (CEA), prostatic acid phosphatase (PAP), circulating tumor cells (CTCs), as well as various scans and organ biopsies that can be used to evaluate metastatic disease. On the other hand, not all of these tests are necessary or even useful for every patient, and I have to assume that NIH doctors have a good handle on all this (at least a better handle than some random guy on the internet, like me). So I guess what I would suggest is that you talk with your father's doctor about whether any other scans or tests or markers might be useful in evaluating the extent of the disease and measuring the progress of any treatment -- but utlimately if you and your dad trust that his doctor has substantial expertise in advanced prostate cancer, then I would probably defer to his judgment. (If you don't trust that the doctor he is seeing has the requisite expertise, you should find a different doctor -- at least for a second opinion; if you are in the DC area, which I am guessing you might be because of the NIH reference, there are oncologists at Johns Hopkins and at Georgetown who have substantial experience with advanced prostate cancer, and some others in the area too). Best wishes, Medved
Posted 5/23/2013 8:58 PM (GMT 0)
With his original stats/findings you have to concerned about the biology of the disease. In case you didn't know or realize PSA is not the only marker to follow the disease and could even be highly misleading, some forms of PCa get so aggressive they don't give off normal looking psa levels, and so an oncologist would be monitoring many things in blood work and urine, etc. Alkaline phostaphase level should be followed, a urine test like UnTx (Pyrilinks-D) or other can test for bone mets break down (thus red flag), there are others to check too. Zoladex and LHRH type drugs can give patients a list of possible side effects.

CTC test might reveal amount of circulating tumor cells and can be used to monitor progressions, a blood test thing, maybe $600-900 range. PCa can invade lungs and is somewhat common, like 17% of (mets) patients or such, the good news is it doesn't seem to thrive there (rare if it does), could effect breathing volume perhaps???? You want more tests, psa alone is not enough.

I am going to guess that if you get a proper panel markers testings, you will have some things way out of normal limits, which is somewhat telling information. 

Post Edited (zufus) : 5/23/2013 3:02:28 PM (GMT-6)

Posted 5/23/2013 9:16 PM (GMT 0)
HI,

I want to thank you all for responding to my post. Yes I am in agreement that PSA in his case is not enough.

Considering what I have researched and reviewing his Pathology report his Prostate is necrotic.

NIH/ Walter Reed works in a team environment and they have the Patient consult with a Physicians Assistant.

I just get the feeling that they treat the Patient like a number and base your case off of your PSA.

His PA this week replied in all the years I have been doing this I have never seen a case like yours.

This is very alarming to me and My Mother. My Father is in a great deal of denial and avoids going to the Doctor at all cost other than his 3 month PSA test. 

Thanks,

April

Posted 5/23/2013 9:34 PM (GMT 0)
Maybe your dad should seek a consult from another medical oncologist. In the DC area (where I assume you are located, based on the references to Walter Reed and NIH), you could try Nancy Dawson at Georgetown (Lombardi), or Mario Eisenberger at Johns Hopkins. Some people also recommend Charles "Snuffy" Meyers, who has a private practice near Charlottesville, VA (but, as I understand it, does not accept insurance). There are others, but those are some names. Best wishes, Medved
Posted 5/28/2013 4:57 PM (GMT 0)
Hi,

Once again thank all of you for your advice and input, I am just curious are there any Men here that have a High Gleason Score and Metastasis?
Also has hormone therapy caused wheezing or heavy breathing?
Please advise.

Thank you,

April
Posted 5/28/2013 5:44 PM (GMT 0)
April,

I am  G9 (4+5) with suspected (but as yet not confirmed) mets.

I have been on HT (Lupron), but have not had wheezing or heavy breathing as a result. I walk 4-6 miles per day in an effort to keep down the HT-induced weight gain, so that would likely counteract any such side effects should they exist for me.

The HT has made it very difficult to be motivated to do any exercise, much less even crawl out of bed after a sleepless night due to constatnt hot flashes. If I were to give in and exercise less, I suspect I would be in much worse physical condition.

Dizziness when stooping over or getting up quickly is for me a known side effect of my blood pressure medicines.

Posted 5/28/2013 6:56 PM (GMT 0)
Hi 142,

Thank you so much for responding. This helps me a great deal with my Father's side effects because he also has dizziness when bending over.

He walks 3 miles a day, he used to run that very same distance prior up until he started experiencing symptoms of advanced prostate cancer.

I see that in 2009 you had the Davinci surgery? Unfortunately for my Father his cancer was very advanced by the time he was diagnosed in August of last year. The Doctor's at NIH have never seen a case like his.

Just last night my Mother told me that shortly after eating dinner and having a glass of wine my Father was breathing very heavily she could hear him.

He is in so much denial that is hard to get him to agree to any more scans or xrays I am uncertain of what to do?

He's always been so brave and strong.

So how are you coping with all of this?

April   

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