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Just sayiing hello

allin
Posts: 4
Joined: Jan 2017

New member and at this point am not sure waht I have, it has been a long road with a lot of worry and frustration but I hope the questions are answered soon. I will add a little bit about myself and what has happened so far. About 15 months ago is when this all started and it has been a roller coaster of emotion. I just turned 62 this past November and always thought it would be smooth sailing from there.

So about 15 months ago I went to a doctor friend of mine for a physical. Everything checked good except my PSA wich came in at 19. I have  no symptoms that I have read so much about and there is no history of Pca in my family.. My doc referred me to a urologist whom I had never met. He seemed to be a nice enough guy and was spoken highly of by my doctor.First visit he prescribed 30 days of Cipro and did a dre which he said everything felt fine and we would do another PSA in 30 days and see where we were. 

Thirty days later another PSA and it was still at 19. He advised a biopsy and I agreed. The biopsy was done a couple of weeks later and waiting for the results felt like the longest time I had ever spent. No matter how optimistic you are there is still a lot of worry,at least for me. Finally the results came in and I went to his office. He looked at me and said we found no cancer. Being new to all this I am thinking, this has got to be a good thing. Another appointment was set for 6 months down the road.

Six months later I have another blood test and again wait for the reults. All this time I am hoping and praying for the best but trying to prepare for the worst. About 10 days later I went in to go over the test and it is now at 24. His advice was another biopsy which we did the next week. Seemed like for ever but again I went in and he says no cancer was found in the biopsy and all the tissue looked normal that was taken. I am getting a little concerned at this point and asked if there was anything else we could do. His advice was to wait 6 months and do another PSA test. 

I went in 12/13/16 for a follow up visit with another PSA teast that came back in at 27. Now I have been told since before taking a PSA test there are several things tou should not do and I did a couple of them the night before the blood draw. One of the was a stationary bike and we won't discuss the other. He has a look that I have seen very few times on a doctors face and it is like the proverbial deer in the head lights. By this time I am about  to freak out. Both biopsies were 16 core and I am like thinking to myself how did he miss it, a blind hog finds a acorn every now and then.

I looked at him and said there has got to be something else we can do, as I at this point do not want to be biopsied every six months. He said he was ordering a MRI, and now from what I have read maybe that should have been ordered before the second biopsy was done. But at that point it was too late to worry about it. The MRI was done at Cone Health Services on 12/29/2016. They did use a coil and also hooked me to a IV and said they would open th IV 15 to 20 minutes before the test was complete. The tech said it was for contrast,I am  not sure what the drug was. MRI was interesting as I have never had one. We are waiting on the results from it now.

I also decided to change Uros. I have appoinments with Alliance Urology in Greensboro,North Carolina in February. I am going back to the original for the MRI results and I am going to fire him the same day. He closed for a week at Christmas and I have no problem with that but my appointment is set with him on 1/24/2017 because they was unsure how long it would take to get the MRI. When they called with the MRI appointment I called his office and asked to to be rescheduled at was told by his nurse she would have him call. I called his office today and left a meassage with his nurse today about him calling me and apparently it is a bigger deal to me than it is them. I hope I can keep my composure when he does call,at this point I am a little ill.

For the real kicker when his office set the appointment for the MRI they made it with another imaging center. That imaging center called and said we do not provide that type of MRI at this location but they were nice enough to set it up for me with the correct one. The current doc's nursed called the next day to let me know she had messed up,I told her I already knew and was there anything special I needed to do in prepartion. She said no, that all they said was to have a clean bowel. I guess one of the ironic  things is a friend of mine was having the same thing and he gave me copy of his instructions. It is pretty bad when your doctor's staff can't get a MRI appointment right and can not advise you what you need to do. That is just a little vent on my part. 

I don't know what the outcome will be but like I said I am hoping for the best,though deep down I feel like sonething is wrong. I am really frustrated about the second blind biopsy when he has more tools he could have used. I think I may actually call him again tomorrow and let his nurse know that he can either call me or I will see what other action may be availible. The more I think about it the madder I get. Already upset,not eating correctly and can not sleep but 3-4 hours a night. All I want to know is what is wrong. Sorry if I vented too much buy I am so aggravated I could bite a nail in half. Thanks for istening.   

Swingshiftworker
Posts: 1013
Joined: Mar 2010

All of this and you still don't know if you actually have cancer or not?  You obviously have not been well served and it's completely understandable why you'd draw the line at an endless series of semi-annual biopsies and made the decision to change urologists.

Nonetheless, it sounds like you finally got a 3T MRI which "should" identify any suspected sources of cancer.   Of course, the elevated PSA levels could just be due to BPH or a benign prostatis., in which case the MRI could also come back negative for PCa.

Wishing you the best of results whatever they may be.  Good luck!

allin
Posts: 4
Joined: Jan 2017

First biopsy he said it was normal and all dres' are nomal. I think he said the weight was right at 30 grams. At the moment I am in the dark. Last appointment I asked directly if I had cancer and his reply was "I don't know." I think that was the deal breaker after having two biopsies, I guess I will see where it goes

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Allin,

I am enrolled in an Active Surveillance protocol that follows a procedure that would be ideal for you in order to determine what is going on.

There are a handful of institutions that follow this procedure. I think NYU is one of them...there may be others near where you live.

Basically a 3T MRI is taken that identifies suspicious lesions, and and an experienced radiologist ranks them. Then the results are locked into a a three dimension biopsy machine....(in my case it is by Artemis, but there are other manufacturers as well), then the urologist in a biopsy, targets these suspicious lesions, as well as  random ones.......there is more confidence in the results......( I have been doing this in a research setting for eight years)....the urologist, additionally has the ability to go back to a particular area that needs to be investigated at a future time.

There are also other targeted biopies, where it is done in bore...

Most biopsies as you have had are two dimensional and random.

https://www.google.com/webhp?tab=mw&ei=sZxsWNP9E-WC6QTLhJugCg&ved=0EKkuCAUoAQ#q=artemis+guided+biopsy

 

VascodaGama's picture
VascodaGama
Posts: 3008
Joined: Nov 2010

Allin,

Welcome to the board. Your story is not new to some of us here. You are desperate for a conclusive justification regarding the high PSA and, apparently, you got an answer: negative to cancer. However, the constant increase of the PSA become suspicious so that you feel being in the dark. I cannot see any wrong doing by the urologist. He followed the typical protocol for diagnosing prostate cancer, which includes; a dose of antibiotics to rule out an existing infection that could be the cause of the high PSA; a DRE; getting a PSA histology followed by a biopsy. Repeating the above (two blind biopsies) is the common procedure recommended by the AUA.

What surprises me is your comment indicating that the biopsy was a template of 16 needles (mapping almost the whole gland). In such a case, urologists tend to investigate further giving preferences to guided biopsies if they manage to see/detect any suspicious spot in an image produced by the ultrasound equipment (TRUS) or bump felt in the DRE. This is typically done at any urology clinic. However, it seems that he has not seen a spot to aim. The other choice would be the guided biopsy indicated by Hopeful above, using CT or MRI, but this procedure is expensive and not covered by most insurances.
The CT/MRI guided biopsy is also not done at every clinic. Your doctor's clinic may not do it and his stuff has no experience and knowledge on the matter. In the end, this is probably the reason that made him to repeat the 16 cores biopsy.

No doubts that you need to find the reason of the increasing PSA. The data you provide above and if we rule out any infection or peripheral reason for the high PSA, including the prostate size of 30cc (normal), you could be confronting a risky case. The increase of the PSA from 19 to 27 in 15 months provides a doubling of PSAdt = 29.4 months (2.4 years) and a velocity of PSAv = 0.5 ng/mL/mo (6.4 ng/mL/yr) which results are above the limits of low risk.

So far you have not been diagnosed with prostate cancer. I hope that the next tests allow you to celebrate a negative to cancer diagnosis.

Best wishes,

VGama

hopeful and opt...
Posts: 2224
Joined: Apr 2009

I only am aware of an MRI use to  target three dimensional biopsies.....I did not know that CTs are used to  target three dimensional biopsies as well...I would like to learn more , can you post more about the CT use.

VascodaGama's picture
VascodaGama
Posts: 3008
Joined: Nov 2010

Ira,

I do not know specifics but CT guided prostate biopsy is done, in particular in cases when rectal access is not possible by TRUS type. CT involves radiation so that the access of phisicians at the room (nearby) should be avoided. In any case, CT is used to biopsy many parts of the body which would involve the same problem. Maybe you can inquire details calling the clinic of these links;

http://www.riainvision.com/exams/image_guided_biopsy.aspx

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Imaging-Center/For-Patients/Exams-by-Procedure/CT-Scans/CT-Guided-Biopsy.aspx

Best,

VG

allin
Posts: 4
Joined: Jan 2017

I just had the MRI done and am getting the results this afternoon. As far as the uro there has been no sense of urgency on his part and I asked after the  biopsy if there was anything that can be done. Some people may be happy with my treatment thus far but I am not. Fortunately I have excellent insurance and this wait and se approach lust doent fit what I had in mind. I am not willing to go through a biopsy every six months with a doctor blindly stabbing my prostate. At this point I am very dissastisfied with what has happened so far. Anyway a new doctor at a proven cancer center is on the horizion. There have to be better days ahead. And it is not a comment about sixteen needle biopsies it is fact unless the doctor lied. He is familiar with the MRI as he referred a friend to the same people I made the appointment with, which is where I should have gone to start with. My family doc made two appointments Alliance was first but they were like two months out,this is when it all started. The uro I am seeing now had a cancellation and called my regular doc, he advised me to see current and cancel the one that was 2 months out.

allin
Posts: 4
Joined: Jan 2017

Dont know how I did the double post and I do apologize. Met with the Uro that ordered the MRI today and he said according to the reports everything is perfectly normal. He stated that he would not do another biopsy unless it went up 10 points and wants to check it again in 6 months. Alsoo told me again today that some guys just have a high PSA and I am in that club. I want to believe but there is too much at stake to throw caution in the wind. Next appointment with new uro 2/24/2017 and to be honest I can not wait.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

US News and World Report, each year publishes, and ranks the top hospital for oncology, the world class hospitals, where the medical staff and facilities outshine other hospitals...this is the listing

http://health.usnews.com/best-hospitals/rankings/cancer

 

 

VascodaGama's picture
VascodaGama
Posts: 3008
Joined: Nov 2010

Allin,

I am curious about such high PSA club you belong to. In fact the concern is not the level of the marker but its constant increases, the doubling and velocity. These matters and you should find a justification for their worsen status. UTI or BPH are typical causes apart of cancer, however the size of your prostate is normal at 30cc ruling out BPH. 

I wonder what kind of MRI you have done and the type of contrast agent?
What we have been discussing is about a guided biopsy that uses computer's image data to define targets for the needles. The MRI alone is not sufficient to define the problem/cause. In fact traditional image studies commonly give false negatives when the tumour (if any) is small in size (< 0.7 cm). I would recommend you to pull in additional tests/markers typically used in the prediction of prostate cancer. You can discuss with your doctor in your next consultation about:

PSAf (free PSA)
PCa3 (genetic analysis of cells in the urine)
PAP (prostatic acid phosphatase)
CEA (Carcinoembryonic Antigen)
NSE (Neuron Specific Enolase)
CGA (Chromogranin A)
PHI (Prostate Health Index–pro-2PSA)

It seems that you will be travelling this journey for a while, so that I would recommend you to get and file copies of all tests and exams (biopsy pathologist's reports and image studies, etc) that are required in all consultations.

A note on your previous comment on the "...things you should not do ....... the night before the blood draw..." for the PSA test; is that the increase of the PSA under such influences is brief, it doesn't last more than 3 days. If worried, you can confirm the level at any time of your choice at a local laboratory. It costs about $35. Steroids manage to increase the testosterone in circulation and this is fuel for prostate cancer activity. Even a small colony of cancerous cells could produce your PSA levels if ignited.

Best wishes,

VGama 

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