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Biopsy 2nd opinion & radiation oncologist visit

MichaelF1002
Posts: 54
Joined: Mar 2013
May 09, 2013 - 11:19 am

Hi all,

Got my 2nd opinion from Johns Hopkins and it's pretty much the same as my original pathology report: 3+3=6. One core, but where the original says 10% involvement the new one says less than 5% involvement.  It also says something I don't understand except that it probably means it could be cancer or not.  I am waiting for my urologist to get back to me on it: "Separate high grade pin with adjacent small atypical glands where it is difficult to determine whether these adjacent small atypical glands represent outpouchings from adjacent high grade pin or represent associated focal infiltrating adenocarcinoma."  Anybody understand this?

Also had a consult with radiation oncologist yesterday who is recommending CyberKnife radiation treatment.  I am taking the wait and see approach at least until I can decide between radiation and surgery.  I'm not exactly thrilled with either but the CyberKnife right now sounds a bit better as far as possible side effects.  He told me that all three treatments - surgery, Brachytherapy radiation and CyberKnife have equal results and that I'd probably choose which one based on the side effects I feel I can handle.  Any comments/advice?

Thanks,

Michael

 
Kongo's picture
Kongo
Posts: 1167
 Joined: Mar 2010
May 09, 2013 - 11:55 am

Michael,

PIN stands for prostatic intraepithellal neoplasia which is basically a cell that doesn't look much like a normal prostate cell under a microscope but it's not defined enough to actually be classifed as a prostate cancer cell.  Pathologists do not believe that prostate cancer cells spontaneously appear...like poof:  -- yesterday everything is okay but today these prostate cancer cells just appeared from nowhere!  While they don't know exactly what causes prostate cancer after looking at millions and millions of biopsy core samples they figured out that certain types of cell classifications, PIN being one of them, generally are present when prostate cancer is first detected.  In other words its sort of a transition cell evolving from a normal, healthy prostate cell to one that can clearly be identified as cancerous.  So what the pathologist is saying is that there are some cells that look pretty much as if they are evolving into cancer cells but we can't call them that yet.  

As you know, reading prostate cancer biopsy slides is a subjective skill.  Sending your slides off to Johns Hopkins can now give you peace of mind that you really have what you have..  

I think you are prudent to be seeking second opinions and researching your options.  In addition to surgery or some form of radiation, you may also want to learn about active surveillance.  With your very low risk diagnosis why would you risk the side effects of any potential treatment if you don't have to?  I hope you add an oncologist that specializes in active surveillance for prostate cancer patient to your list of experts to visit while you are considering your options.

In 2010 with a similar diagnosis I chose to treat my prostate cancer with CyberKnife after much research and visiting six specialists.  I have had no side effects with any type of continence, urgency, or impotence.  The cancer appears to have been eradicated, and my PSA scores are steady at less than 1.0 ng/ml.  (With radiation your PSA never goes to zero because you still have a prostate which will continue to produce some small amount of PSA).   If you do end up choosing this option I would have some additional recommendations about fiducial placement and frequency of treatment so please stay in touch.

Good luck!

K
MichaelF1002
Posts: 54
 Joined: Mar 2013
May 09, 2013 - 12:04 pm

Thanks Kongo for your response. I appreciate your (as always) knowledgeable advice and will definitely stay in touch as my situation changes.  I will check further into the active surveillance option.  I would prefer that (if I can manage to get around the idea of the cancer definitely growing in my body).

Thanks again,

Mike. 
jerryj080
Posts: 13
 Joined: Oct 2013
Oct 28, 2013 - 2:01 am

I too am contemplating Cyberknife. I have 3/12 cores of 3+3 =6 ... All less than 25%' but 2 others "abnormal". Also T1.

Do you know who might be considered the top doctors for Cyber?

I am in Reno. there's a Dr Kos here who does it. 

Thanks!

 
jerryj080
Posts: 13
 Joined: Oct 2013
Oct 29, 2013 - 12:26 am

I just found out that Dr. Kos does not do cyber knife. He does Calypso. Here in Reno, there's a Dr. Tay who does cyber knife. However, I have insurance problems in that He is out of my network.

Boy oh boy, what a mess.
MichaelF1002
Posts: 54
 Joined: Mar 2013
Oct 29, 2013 - 8:37 am

Sorry, Jerry. I don't know of any doctors in your neck of the woods who do CyberKnife.  In any event, I decided against it and chose surgery instead.

Hope you get the mess untangled so you can make a decision.
mrspjd
Posts: 694
 Joined: Apr 2010
Oct 29, 2013 - 4:17 pm

Jerry,
 
I'm sorry things seem to be such a mess for you. It is complex and agonizing to be dealing with PCa tx decisions, and more complicated if medical insurance coverage is an issue. PJD had to change medical insurance carriers to obtain the tx he wanted (HDRB) because it wasn't offered at the large HMO where he was dx'd. We also paid out of pocket for many 2nd & 3rd opinion consults. Other patients with non-HMO insurance have sometimes successfully appealed initial insurance denial decisions for certain txs. 
 
BTW, Calypso is not a PCa tx. It's the brand name of just one form of motion tracking technology used by ROs to guide radiation therapy (RT) and monitor the prostate position during IMRT aka IG/IMRT. 
 
I think you're doing the right thing by studying all options. If your 2nd opinion expert PCa path report from JH confirms your T1 low risk status of a 12 core Bx, then the odds are in your favor that almost any tx, including AS/M, would be considered "curative." The difference will be in evaluating the risk vs benefit for post tx short & long term side effects that match your QoL priorities. 
 
I hope your consult @ UCSF (http://csn.cancer.org/node/263777) brings you some confidence and peace of mind, as do your conversations with the good & caring folks @ US TOO & the PCa networking meeting. I recommend that you also consider a consult with an oncologist who specializes in PCa. He/she can evaluate your case independently of a surgeon or RO and hopefully provide an unbiased perspective of medical options appropriate for your PCa risk, age, Tumor stage and overall medical health status. Good luck. 

 
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