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Need input and also advice

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Greetings all, I had surgery in Feb of 2011, Final stage was T2C, with PNI present, the first year psa level stayed at the 0.01 level, year 2 is moved to 0.02.

This past year it moved to 0.03 in August. last Tuesday doctor visit and it is now at 0.05. The doctor moved me back to a 3 month rotation for PSA tests and it was indicated that I might need additional treatment. He also said on the last visit that I cannot guarantee a cure.

The treatment will most likely be radation or HRT. I am trying to plan ahead and want to make a decision, I donot want to rush into this next phase if needed.

The PSA test is the ultra sensetive test or it's called the FREE or TOTAL test. I always get my test at the same lab and hospital. I understand the wait but this test is more of an accurate test.

As I understand the 0.05 is a trigger point for PSA.

Kurt

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Kurt,

I believe that the trigger point for classifying a recurrence is 0.2 not 0.05. 0.2 is 40 times larger than where you are now. While the ultra-sensitive tests might give earlier warning that something is happening the problem with them, in my opinion, is that most people tend to look at them as absolutes and totally accurate. The more sensitive the test the wider the potential variations in equipment calibration, sample solution consistency, and so forth. Also, looking at these very small numbers without knowing the standard deviation can give a very inaccurate picture.

The most important thing, as I understand it, is the trend over time. Certainly a very rapid rise such as a 0.1 to a 3.4 is worrisome, but you have nothing like that.

I do think it is a good thing that your doctor is putting a damper on the use of the word "cure." There are many definitions to that term in prostate or any other cancer. Basically, I think we want to live out a natural life and die from something other than prostate cancer (even though technically we may still have it)

Best,

K

hunter49
Posts: 201
Joined: Oct 2011

I also worry about small jumps.  I ran it by my friend at Hopkins and he advised not to even do them.  Basically there is subjectivity on ultra sensative testing.  He ran mine 3 times same day and had it sent to their lab and none were the same.  Same lab.  He insisted worry when you hit .2 and then watch it for 3 more months.  He advised many patients he has have jumps in first 3 years after surgery that never go anywhere.  He had no explanation why this happens.  I switched to doing regular tests.  Case in point in August mine went to .04 then in October to <.01.

 

caseyh
Posts: 63
Joined: May 2002

Kurt

PSA is a pretty accurate test for PCa recurrence, but these results are certainly within he margin of error.  It will take several more tests to attach any meaning to these early results.  Most often, elevated PSA after surgery indicates that the surgeon left something behind.  I was told at a cancer radiation center that they see an increased number of patients with this problem since the start of robotic surgery.  Most of the time, just a little cleanup is needed.   I would start planning my next step now now just to be safe.  Hopefully, there will no need to use the plan.

I am very impressed with the use of Color Doppler Ultrasound for spotting remaining PCa cells in the prostate bed.  Unlike scan technologies, the ultrasound is used to look for blood vessel activity in the margin's of the scar tissue.  Together with the Feraheme MRI, you can be pretty certain that the most likely areas for recurrence are checked.  I would not go blindly for salvage radiation based on a doctor's guess.  I have been down this road and speak from experience.

Very few people with hormonal cancers are CURED.  I know one person that has been in remission for 10 years who had PCa cells found (and still has) in his bone marrow at the time of diagnosis.  Probably the best definition of the word “cure” for PCa patients is for that the patient die from something other than PCa.  93 percent of us fall into that category.  You certainly do.

My best guess is that if this turns out to be a recurrence, it is a cleanup situation.  Feel free to email me with any questions.  Relax, enjoy the holidays.  All is well!

Best wishes for a happy and healthy new year,
caseyh

BLUEpac6
Posts: 34
Joined: Jun 2012

In jan.2009 my psa was 110 and gleason 9 agressive carcinoma.I had radical surgery aug.2009 and psa stayed close to 0 for about a year and then it climbed to .06.Iwas told Ineeded salvage radiation after seeing two different oncolgist who both said I needed the radiation and both said after putting my information of past history of the cancer progression into computer said after the treatments if the cancer came back at all it would be 6 years.In july 2011 I had 35 treatments with no side effects at all and exceot for having to go for the treatments I never felt like I was recieving radiation.My psa has stayed less than .01 for about a year till feb.2013 it dropped even futher to .0003.thats my story.Hope whatever you decide turns out as well.

jwoodie
Posts: 21
Joined: Feb 2013

Is this different from theraputic radiation?  I just had my first Lupron injection and am scheduled to start 3D (5 weeks) and IMRT (3 weeks) in two months.  I am very concerned about future rectal issues and am wondering about their liklihood and any preventative measures.  Any thoughts/information would be appreciated.  Age 65, G4+3, Stage 3a, PSA 60.

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