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Anyone here post surgery with bouncing PSA?

bdhilton
Posts: 758
Joined: Jan 2010

March 2010-Pre surgery 4.2 PSA.....Post surgery Gleason 4+3 (clinical the same), SVI (right), positive margin (one). No PSA reading until August 2011 (18 months post surgery) which was 0.2. December 2011- 0.15, April 2012-0.2, August 2012-0.3, December 2012-0.17 (yes down from previous).

The only reference I have seen on bouncing PSAafter surgery was a video by Snuffy Myers. My oncologist tells me my cancer is probably “smoldering” at this time with these “bounces” but does not recommend RT (unless I feel I need it) at this stage.

If anyone else has experience here or been told there cancer is “smoldering” I would like to hear about it. My mother was told she had “smoldering” cancer 28+/- year ago and the cancer is still just sitting there doing nothing… Many thanks

VascodaGama's picture
VascodaGama
Posts: 1535
Joined: Nov 2010

Hilton

 

This is the first time I read about “smouldering” prostate cancer. I was curious about this term (flameless form of combustion) and found a reference at the PubMed for Smouldering Myeloma. It seems that it refers to sort of indolent type of cancer. And, the bouncing PSA results you pointed out could come from a tumour that is there but inert.

(http://www.ncbi.nlm.nih.gov/pubmed/12057049)

 

Although, the fact for the existing levels of PSA since surgery (radical prostatectomy) it means that you got metastases but your body is reacting well in controlling its advance. It could well be due to your newer life style, diet, supplements, etc., that is “balancing” things into place.

 

Your case though is not unique. I have read about many guys with cancer behaving similarly to yours. Some doctors also use a definite fixed level of PSA in follow-up tests pos surgery (example; PSA= <0.1), which they use to report any progress of the disease. Some even use higher thresholds (PSA=1.0) and some the term “undetectable” with the same meaning.

In these cases, the PSA could be bouncing back/forwards without knowledge by the patient.

 

You are doing well in being concerned with the positive margins and seminal vesicles described in the path report, but the bouncing effects of the PSA and with such low level of 0.17, one may think that the cancer is indolent. The only aspect that could be worrisome is if your cancer is of the type that produces low levels of PSA.

 

In any case you have not reached yet the threshold suggested by NCCN guidelines of 0.4 ng/ml to declare recurrence. Accordingly, at this time I do not thing that you should start a SRT.

I would though suggest you to add image studies to your periodical follow up tests so that you would be prepared for any future event. I also would suggest you to get a testosterone test and bone density (DEXA) scan to verify for bone health.

 

Wishing you continuous low levels of PSA and a fantastic 2013.

 

VGama  Wink

Keep the Faith

bdhilton
Posts: 758
Joined: Jan 2010

Vascodagama…Thanks for your insight. 

The only references I see on bouncing with PSA is with RT with the exception of a recent video clip from Snuffy Myers clip discussing why oncologist should not rush into RT sometimes at 0.2 based on some factors that that some guys may level off at or under the “recurrence level” of 0.2 that could just be caused by benign prostate tissue left behind…I just love the suspense of PCa (not really). 

If you take my last 12 months of reading it appears my doubling time now is 4.76 years (which can be an excellent indicator for no further treatment with longevity) and I hear you with the concern of aggressive low reading PCa but apparently my medical team does not believe this is my case.  I’m under the care of a renowned surgeon, multiple studies at Northwestern and a great and oncologist (they tell me I can have SRT anytime I want too…but why until I hit their magic number for me at 0.6).  In the mean time, I will continue living life to the fullest and see what the next test result gives me….

As far as testosterone levels and bone density  test, etc….My medical team has never mentioned taking these test but based on my activity they do not believe I have any issues here at the present J

Thanks again and all the best to everyone in 2013-

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

As VGama said: The only aspect that could be worrisome is if your cancer is of the type that produces low levels of PSA.

My psa is very low and the monster continue to grow. MD Anderson told me not to look at the PSA and as my last CT scan in July 2012 showed that at a PSA of 0.3 my orginal tumor's were smaller, but there was some new small tumor's. My psa went to 0.8 in November and back down to 0.5 in December??? Go back to MDACC for CT scan and Bone scan in February.

Good luck and the best

 

bdhilton
Posts: 758
Joined: Jan 2010

Hey Ralph, Thanks for your thoughts and input (your service to our Country too).

Based on what I have read of your PCa, it appears that you certainly had an aggressive form that is under control with surgery, RT and hormones at this stage and that is great and I hope for the best for you with your upcoming appointment in February…

Measuring psa after RT and HT is a different story than initial recurrence or appearance of after surgery…

I am just pleased at this stage from keeping the other treatments at bay until or if I really need them…

From my view point (and my medical team), less is best until proven needed. 

All the best to you-B

To all out there I’m still looking for somebody with similar results as me?

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

Hi, BD

I haven't heard of "smouldering" cancer either but fluctuating PSAs are not unusual.  From the numbers you provided there are single and double digit readouts.  The .15 would actually be a .2 in a single-digit report.  Perhaps "smouldering" is a layman's term for "indolent" although that doesn't seem to make sense with lyour diagnosis.

You're knowlegeable about PSA testing and the nuances but maybe there was a lab change or a different chemical mix in the solvents used for testing.  In any event it seems to have a very slow doubling time which might suggest a less aggressive strain.

Best,

K

 

bdhilton
Posts: 758
Joined: Jan 2010

Hi Kongo…

Thanks for your input and comments.

Good thought/observation on the different labs for sure but in my case the same lab has done my test from day one and they are reviewed by many medical professionals since I’m in several studies.  If my score drops again I will let everyone her know what I am doing….

I asked the question about “bouncing” PSA because that is what my oncologist said along with “Smoldering” but my guess is that the medical community uses this term when they have “no explanation”. 

I also asked the question because I know of no one on this forum that has had only surgery and has gone from a first recurrence reading of 0.10 to 0.30 then back down to a 0.17 and the only reference I have been able to find is a recent video clip from Dr. Myers.

Like many of us here, I have taken an active interest in my medical care and ask many questions.   My mother’s (86 years old) oncologist(s) over the past 28+ years referred to her multiple Myeloma as “smoldering”. 

When she was diagnosed they wanted her to have chemo (told her she had less than 2.5 years to live) but she told the oncologist at the time she would consider this when she started to experience the “signs” of her “illness”.  Long story short-she has never been treated for multiple Myeloma and this experience tells me just because a doctor says to do something you should not blindly do it.  Question, question, question.

In addition, my step-father (a Harvard educated MD, headed a medical school, even has a disease named after him) had PCa at 62.  He radiated and never followed up and lived to 84.  He died from secondary cancer to his liver from the radiation but I mention this because why would an educated MD not follow up after his treatment (never asked him the question and he died 2 months before my surgery)…He lived a very productive life after his PCa treatment accepting his first line of treatment as his last and just lived… There is a lesson there too.

All the best in 2013 to all-B

 

bdhilton
Posts: 758
Joined: Jan 2010

As far as my post surgery diagnosis i.e. Gleason 4+3, SVI, PM I believe the stats say I have around a 30% that I will never have another PCa issue and die of something else…I like the half full view better than the half empty…

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