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Doctors Scratching Their Heads. Ideas

Esqeddy
Posts: 3
Joined: Mar 2016

I insisted on a biopsy in September of 2015 after a couple of elevated PSA tests. (6.4 followed by 5.4). To the surprise of my urologist, one of six samples came back with 2mm of positive tissue. It was graded a Gleason score of 3+4=7. A routine post diagnosis pelvic CAT scan was performed to check for any signed of lymphatic change that might be indicative of metastisis. No signs were found but a 1cm leasion of some sort was noted in my L2 vertebrae. This was already known to me as it was detected 5 years ago in an MRI for lower back pain I was experiencing from bulging disks. That not withstanding, in October 2015, a bone scan was ordered which came back positive for potential leasioms on various ribs and my left shoulder blade. (The L2 leasion showed no additional uptake.) 

i had already selected and scheduled CyberKnife radiotherapy. The Neuclear Oncologist read the bone scan report and reviewed the images and thought the radiologist had over read the scan. I went forward with the radio therapy which was completed on the 20th of Nobember 2015.  Because of the positive bone scan, a Flourine PET/CAT scan was scheduled and performed on the day before my last day of radiation. The PET scan went from my head down to about mid thigh. The results identified the same potential leasions plus additional areas of concern. All areas of concern were located in bone. This prompted conventional X-ray studies of the suspect areas that demonstrated no signs of any bone changes indicative of bone mets. The X-rays showed nothing. As a result, no one wanted to do a CAT scared guided needle biopsy and a surgeon declined to do an open bone biopsy feeling that there wasn't enough there to find by blindly taking rib sample(s). As a result, to date, doctors have delinded  treat me for PCa bone mets. This is most understandable since my PSA has continued to decline since the radiation therapy and is 1.41 as of this day.  The Drs want a definitive diagnosis before treating me  

Since the initial bone scan and PET scan, I have had another of each scan. Both show the same results but for the most part, the areas of concern remain unchanged.  However, in the last PET scan, which was from head to toe, a very intense location of update was noted at the lower most location on my right tibia.  Before the scan results came back I started having a little pain in that location which I discounted as the likely result of me bumping my ankle on something in the middle of the night during one of my many trips to the bathroom. However, the pain has gradually worsened and become more persistent. After I saw the radiology report for the last PET scan, I had X-rays done of my ankle which the radiologist read as a small area of possible new bone growth at that very spot. 

I am hopeful that I can now persuade someone to biopsy this location and give me an answer as to why I have positive scans despite an increasingly low PSA. We have already ruled out multiple myeloma. Likewise, since the scans are essentially unchanged over a 3 month period, it is unlikely that I have the rare small cell low PSA producing variant of PCa Bone mets. That type of PCa is hyper aggressive and kills in about 12 months  

At this point I'm receiving no treatment. The doctors are all scratching their heads. Most don't believe it is PCa bone mets. The Oncologist says it looks like it from the scans but won't say for sure.

Any ideas? I'm very frustrated and depressed by all this uncertainty.

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I cannot comment on your medical condition, but I can comment on your mental condition.  Lets just pretend that you were told this would be fatal, and now you are depressed and scared.  You become negative and depressed about a situation over which you think you have no control.  Your atitude not only has huge negative effect on you and the progress of your desease, but also on those who love you.  YOu worry about what is going to happen.  YOu lose all the valuable time you have left with your loved ones and your mind is continually busy with questions and answers.  Your loved ones become affected and worried by your negativity.

Now, on the other hand you understand that you cannot CONTROL your life, but you can MANAGE IT.  So, you deicide to make the time you have left the most valuable time of your life.  Your atitude becomes positive and loving as you spend wonderful, positive moments with your loved ones.  You are positive and loving in each moment accepting that all that comes into your life is for your benefit.  Your immune system profits from this atitude as you vibrate every cell of your body with loving, healing energy.  You learn meditation, and take control of your wandering, negative mind.  Your life becomes renewed by your cancer as you learn to see Who and Why you are in a totally new light.

   The choice is yours.  This can be a rebirth of spiritual growth, love, and oportunity, or it can be.........................................................   The choice is yours.

         Love, Swami Rakendra

Esqeddy
Posts: 3
Joined: Mar 2016

Thank you for the encouragement.  Believe me when I say that I understand the value of a positive attitude.  Unfortunately, the u certainty of my medical condition is what is eating me up. I can deal with and wrap my head around whatever is facing... As long as I have some idea what it is.  However, life isn't black or white. In my case this especially true. I'm a solo practitioner trial lawyer.  If I have a year left, I need to wrap up my practice now and enjoy my wife and children.  If I have multiple years left, I have to continue practicing and make very different plans.

 

i will get a diagnosis if I have to biopsy myself. Then I will wrap my head around whatever it shows and move forward with a smile. 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Eddy,

Congratulation on completing your SBRT treatment; the decline in your PSA, so far is indicating that the treatment has been successful to date.

The American Urological Association does not recommend bone scans for those with Gleasons under 8 since it is highly unlikely for there to be metastisis to the bone.

As you are aware there  are reasons other than metastisis, for there to be a postitive bone scan.

The rest of this post is beyond my pay grade, but here are my laymans thoughts.

First, I would look at the glass being half full, and have the PSA monitored, as you are, and consider not take any action as long as the PSA declines.

I would inquire about a bone density test as a bench mark, in case you are prescibed a hormone treatment.

If you wish take this another step there are various PET Scans that available....I am not an expert  on PET Scans, but there is a new advanced one that is not covered by medical insurances, and cost about three thousand dollars. It is a c11 pet scan for prostate cancer. I don't know where you live, but this is Arizona. You might wish to call  Dr. Almeida, director of the Arizona Molecular Imaging Center in Phoenix ,and inquire from him if this  C11 scan will add any information to your situation. .

https://www.youtube.com/watch?v=WfzVi9mlMtM

I wonder if you have spoken to your Internist to do a full body work up, and make a referral if necessary. What ever is going on, if anything may be totally unrelated to prostate cancer.

 

 

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3363
Joined: May 2012

With Hopeful, my sense of your scan results strongly suggests that whatever the issues PET scans have shown in various bones, it is not PCa.

Second, if you are at present receiving no treatments, it also seems the doctors are not scratching their heads; rather, they do not currently detect an addressible problem.

I have dealt with a multiplicity of deadly problems my whole life -- run over by a car, various cancers.  Life is full of infirmity and hardships.   Every human being has anomalous things that would show on scans if they had them, they just haven't had them.  Many, possibly most, are inexplicable.   If your doctors are not worried, neither would I worry.   

When my doctos give me 'bad' or suspicious results today, I yawn.  My attitude is ,'OK, we'll deal with it.'.  When I went in years ago to learn that I had late stage lymphoma, my doctor was on vacation. A young new doctor, just out of residency, gave me the results.  She actually teared up, got upset.  I went and comforted HER -- told her it would be OK.  Eventually, it was.   

I have been told in ICU I had an hour to live, even was conscious and heard myself being coded over the intercom system.  That was 29 years ago.  Two years after it happend, I could walk again.  Humans have amazing resilience, an ability to carry on.  Trust that the PET issues will be figured out and resolved in time.

Swami's post is well worth rereading.

max

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