PET PSA etc

[spencoid2]

Reading some of the recent posts has me thinking again about a couple of issues. So I thought it made sense to ask the group for confirmation, ideas??? Not sure it I mentioned/asked before but... I have started seeing a medical oncologist as recommended on this list. I do like his "take it slow" approach and am trying to not think too much but that is difficult. My last two PSA tests, three months apart, show a doubling rate of 2.5 months with the last PSA being 29.5. This is after IMRT Brachy and ADT treatments for Gleason 9 PC. So there seems to be "biochemical failure" I had an axumin PET scan and it showed two areas of concern, prostate and hylar lymph node. Then had a prostate biopsy which was negative. Even though it was targeted to the location on the PET scan and was ultrasound guided the urologist said that a biopsy can miss. I think the PET and biopsy were before the most recent doubling. Oncologist is recommending waiting and doing another PSA three months after the last one, then depending on the results, another PET scan and also depending on results repeating PSA at 6 months. That is a lot of waiting but I do like the idea of delaying ADT as long as is reasonable. The oncologist said that some people would want to start ADT immediately to feel they are at least doing something but he did not see any reason to rush into it.

Does this sound reasonable? Is there any additional risk of putting off ADT and waiting for an out of control increase? There has been a continuous rise over the last year, the most recent is the fastest but it is not an outlier. Also no trauma that could have caused a false high reading, no masturbating, sex bike riding catheters etc before tests.

Should I wait the full three months till the next test or sneak one in, ordered by my GP? It is difficult to be patient and not worry.

[Miccoman]

Hi,

I never got the option of watchful waiting -- long story -- they put me on ADT right away. But the first thing I did was find a local lab where a PSA costs $12, no order needed. So I just went and had as many blood tests as I thought I need. I feel that my positive attitude was helped by knowing exactly what was going on. I still get the lab results, from the lab, before I go see my doctors. I do not use my doctors' labs as the local one is closer.

It is important to remember that you are a consumer and doctors are providers. If you feel knowing more through more frequent testing would give you peace of mind, do it. If you are the nervous type that goes into hysteria at each blip in a number, then it would be best to follow your doctor's recommendation. Peace of mind is a quality of life issue.

For me it helps plan ahead for the next treatment and lets me make long range plans. But that's me (I also enter the numbers in a spreadsheet and graph out everything much to some doctor's amusement -- but they always study the graphs closely).

Best of luck with continuing living your life.

5 years living with metastatic disease and looking at 10 more, at least, or so they tell me.

[spencoid2 in reply to Miccoman]

Thanks for the suggestion. I think I have a standing order at the local lab. I can easily have my GP order it. Although waiting the full three months would probably be just fine, I still would like to see some intermediate results. Good to hear that at least one other person does not think I am nuts to want to do so. Good idea on the graph, I love excel (except for the bugs and needed work arounds of a typical microsoft product) Will chart my PSA tests right away. Will be fun to see the graph. Wanna trade charts

[Miccoman in reply to spencoid2]

Actually, not wanting to be a forever client of MS, I use LibreOffice Calc. It works a little differently than Excel in places but for the most part is identical to pre-ribbon Excel. And it is free

I'm fine with sharing graphs. But you should think about how a different person's response to drugs might effect you in view of your experience, perhaps not so successfully, with the same drugs. Geeking out on layout, etc. is always fun, though.

That said, I find trend lines helpful as long as I limit the chart to about 18 months. Otherwise the trend is way over optimistic (I started at 50+ PSA and have been mostly under 2 ever since so the trend from the beginning is always down even though my PSA is very slowly rising).

I do testosterone as well as PSA and use a bar graph as the chart for all the data; a line, with trend line, for each individually (PSA & T) and an 18 month trend for PSA.

Plus I put boxes behind sections of the bar graph to show years and which drugs I was on. Shows me a lot of info in a small space. Albeit that small space, now that there are over 5 years of data, fits best on an 11 x 17 sheet (good thing I have a large format printer!).