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I am preparing for an appointment with my Oncologist. At times I think my concerns and desire to follow up may be silly and of no importance. Are they?
My situation: I am working on questions of my being Gleason 9 at RP 2 years ago and undetectable PSA since then. With the other findings at RP (see below), I am quite delighted with my low PSA (skilled surgeon?) but also quite confused. My situation is not “supposed” to happen is it?
I recently read the following:
A Primer on Prostate Cancer by Stephen B Strum, MD, FACP and Donna Pogliano, Pg 64 states: “Low PSA levels may be seen despite significantly high tumor volumes in situations where the PC has mutated to an aggressive cell type; this is characterized by a high Gleason Score of 8-10,” He goes on to say that “…obtaining a full baseline of biomarkers in situations associated with such an aggressive picture often reveals elevation(s) in plasma CGA {chromogranin A}, neuron specific enolase (NSE), carcinoembryonic antigen (CEA) and/or prostatic acid phosphatase (PAP). When a progressive increase in any of these biomarkers is documented, there is invariably evidence of mutated aggressive PC.” Pg B5: “Patients with PC who have low PSA levels and progressively increasing CGA levels appear to represent those with predominant AIPC. Such patients would be expected to have no significant response to ADT and, if not treated with therapies directed against AIPC, a poor survival.”
I would be interested in any comments anyone might have on this. I probably just do not understand what it means!!!
I mentioned that I am planning on a meeting with my Oncologist to discuss this and I am accumulating a list of questions for him. Any help on additional questions to ask would be greatly appreciated. (I will not list the questions I already have so as not to prejudice any responses).
History:
7/21/2006 PSA 6.0 @ 65
10/18/2006 Colonoscopy and Prostate Exam
10/29/2006 Referral to Urologist – Antibiotic Regimen for 1 month
1/16/2007 PSA 10.2
1/30/2007 Biopsy. Gleason 7(4+3)
2/7/2007 CT and Bone Scan – negative
3/6/2007 PSA 12.4
3/12/2007 PSA 13.1
3/12/2007 RP Adenocarcinoma of the prostate, bilateral, Grade G3-4, pT3aN1MX, Size 2.5cm in diameter, volume in percentage:20%, free margins, Stage IV, Focal established extra-capsular invasion, Nerve invasion, 4 Lymph Nodes Positive. Gleason 9(5+4).
PSA at three month intervals – the first being 4/24/2007: 0.005, <0.003, 0.007, 0.004, <0.003, 0.003, 0.005, <0.003
(One other question - would 4 lymph nodes positive = N2 instead of N1 as I have been graded?)
Pete,
I suppose the kinds of questions one asks reflect the ways of thinking that one carries, in a broad sense.
For me, the obvious approach is to ask what the doc thinks is the current situation in my body with regard to the cancer. Like please map it out. Where does he think cancer cells are located and how are they likely to progress. Based on that, then what are the treatment options and what outcomes can I expect from each. And maybe ask him about prior patients he has seen who might have been somewhat comparable. How were they treated and what have been the outcomes of that treatment?
On top of that you could ask what is his confidence level (50%, 90%?) in the situation truly being as he has depicted. If not very confident, then what other situation could it reasonably be, and how to treat that and so forth.
If you then go see another oncologist and approach him in a similar way then you'll have a good basis on which to form your own opinions and choices.
I know many doctors would not be particularly inclined to pursue this way of discussing things, they might just say "we really don't know" and go no further. That's unfortunate.
If you go to MAILING LISTS and page down you will find how to join the Physician to Patient - P2P Mailing List. Dr Strum deals with queries posted on that List, PROVIDED you provide your data in the required format.
From my point of view I think that the situation described by Dr Strum in his book as
“Low PSA levels may be seen despite significantly high tumor volumes in situations where the PC has mutated to an aggressive cell type; this is characterized by a high Gleason Score of 8-10,....”
does not apply in your case. You did not have a very low PSA count and you did not have a high tumour volume.
The tests referred to by Dr Strum are ones that he suggests are carried out before making a treatment decision to gain a better appreciation of the extent of the disease. To the best of my knowledge there are very few doctors who agree with him on this issue, categorising the tests as unneccessary and old science.
You should ask for him to recommend an experienced radiation oncologist near your home.....Always remember, urologists are surgeons and like the American Cancer Study proved, those who are trained to cut, like to cut. You must expect he will recommend surgery for he has been trained that surgery is the best treatment for cancer....It's not and a host a men have had their sex lives butchered by urologists who with little training and even less experience claim that they will spare your nerve bundles....oops.
I did IMRT=ADT and have come out of it in fine shape, no leaking, no diapers, no colon problems, no ED, no ejaculating blood or urine, no pain....talk to a radiation oncologist.
Patrick Cape Cod, USA
You should ask for him to recommend an experienced radiation oncologist near your home.....Always remember, urologists are surgeons and like the American Cancer Study proved, those who are trained to cut, like to cut. You must expect he will recommend surgery for he has been trained that surgery is the best treatment for cancer....It's not and a host a men have had their sex lives butchered by urologists who with little training and even less experience claim that they will spare your nerve bundles....oops.
I did IMRT=ADT and have come out of it in fine shape, no leaking, no diapers, no colon problems, no ED, no ejaculating blood or urine, no pain....talk to a radiation oncologist.
Patrick Cape Cod, USA
After removal of my prostrate gland by robotic methody histopathology report was pT3aN1Mx.What exactly that denotes?
