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Newly diagnosed prostate cancer

Larry1970
Posts: 7
Joined: Aug 2018

So I was recently diagnosed with prostate cancer and the doctor is being vague regarding what exactly is going. I’m hoping I can get a few questions answered. I fully trust my doctor and he does want to sit down with me in person and explain. This is what is going on so far. I am 47 years old with no family history of prostate cancer. I had a blood test and my psa was high. My doctor then sent me to a urologist who redid the test with a free psa and it was still abnormal. From there I was sent to have an mri done that came back as some suspicious spots. Doctor then sent me tohave a biopsy. After those results came in he said a few areas were cancerous and now I need to have a bone scan done. After my wife probes the doctor a little bit he did answer some questions as it is high grade and has the potential to be aggressive and spread. So I would have to have some sort of active treatment within the next 6 months. He has not told me my Gleason score is but what is the purpose of a bone scan. Can anyone help me to get clarity or thoughts please

Terrified Wife
Posts: 4
Joined: Aug 2018

A lot the same with my husband - no history.  He is 60, his PSA was 24 - Gleason Score was a 9 - it has metastisised to other areas.  This all since May 23, 2018 - quite a shock.  He feels good is the craziness.  They started him on hormonal therapy - Casodex  -  Lupon - and a bone shot XGEVA.  No chemo or radiation at this time due to a retest of the PSA after 30 days and the PSA came down to a 7!  We are going back every 30 days for labs - wonder what is ahead of us as well.

Larry1970
Posts: 7
Joined: Aug 2018

I hope all goes well with your husband. That happened pretty quick. ☹️

MudMan's picture
MudMan
Posts: 23
Joined: Jul 2018

I'm not sure how your Urologist can say your biopsy samples indicated a high grade cancer without knowing the Gleason numbers and volumes.  Has your doctor even received the pathologist report yet?  With all the available information you can provide about your cancer the experienced members here can help you with a lot if not all questions you will have along with the current.  They have helped me tremendously.  I am a new member to this club that you and I didn't want to join. 

Good thoughts for you and Terrified Wife.

Larry1970
Posts: 7
Joined: Aug 2018

Yes he has received the report but it seems like he is being very vague until the bone scan comes back. I go on the 21st of this month then we will sit down and talk on the 28th. I just don’t u derstand why he would not tell me all the info. 

 

MudMan's picture
MudMan
Posts: 23
Joined: Jul 2018

Not understanding to me has been the one thing that keeps my stomach churning and mind going to dark places where it doesn't need to go.  I suppose one of many possible reasons your Uro wants to paint an entire picture for you (which what a bone scan kinda does).  The veterans here will help when you get a better picture of what you are dealing with.  Then you can move to the next issue of choosing what treatment should your Uro offer more than one.  And then there is the second opinion you might want to get. 

The 21st seems like a long way off, I know because I go in the following week for my treatment of choice, Robotic RP.  It took me 4 months to get this far including a second opinion.  My advice for you at this point is to stay positive, more information without speculation is coming soon.  I will follow your progress.

Larry1970
Posts: 7
Joined: Aug 2018

Thank you I will be following your posts as well

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Larry,

I would call the doctor's office and require them to email me the biopsy results.  They are obligated to do so, but protocol may have caused the doctor to prefer seeing you face-to-face. But then the issue becomes the wait, which is excessively too long to be reasonable.  Doctors vary a lot in "bedside manner," and he may simply want all the results before giving you his assessment.  My hospital group puts all diagnostic results online as soon as they are evaluated, which I can log in and see without ever even hearing from the doctor. Your facility might do the same thing.  In fact there have been times when I looked at my medical results and then called my doctor, who said she was awaiting results. I then told her that the results were back, that I had already looked at them.

Another common "doctorism" is that some will talk around the patient, rather than to the patient.  That is, in a meeting with the doc, he will sort of speak as if he is talking to the ceiling or the air, but not you.  In cases like that, you have to demand clarity and a straightforward summation of what he thinks. Tell him that his vague generalities are not sufficient.  He will remember that the next time.  I was in ICU once for 25 days (not cancer related) and the doctors and nurses virtually never talked to me. They spoke back-and-forth as if I was not even in the room.

What was your PSA ?  

I suspect that when you request the results, he will hurry your visit up.  Good luck with all of this. As Tom Petty sang, the waiting is the hardest part... Virtually all PCa (prostate cancer) is highly controllable, and often can be put in permanent remission, or what doctors used to refer to as a "cure."

max

Larry1970
Posts: 7
Joined: Aug 2018

Thank u. The doctor who originally did the biopsy was out on vacation and should be back in the office this week. I’m not sure if he has to be the one to release the results because I can see all my results online. My urologist I see usually will call before posting but I had called him to see if he could get the results because I did not want to have to wait for almost 3 weeks. I feel like I am bugging my doctor but at the same time I have a right to know. As I know more I will post an update. 

Larry1970
Posts: 7
Joined: Aug 2018

i have 3 psa tests. 2 were 4.56 and within a month it jumped to 5.76 with a free PSA of 9. Doctor said this is high considering my age. That is why it prompted for an mri. 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Larry,

Welcome to the board. The series of tests and exams you describe above are typical and make part of the initial diagnosis for prostate cancer. After the bone scan your doctor will provide you with a clinical stage from which you will be requested to decide on a treatment.

So far he has inform you that they found cancer in the biopsy and that the MRI has detected some abnormal areas. The most important in these tests is to confirm that cancer is contained whole within the gland. That would assure cure 100%. If spread is found then the chances for cure are lower but still possible. Lets hope that it is contained.

I would collect copies of all reports and test results as these will be important to formulate a decision, get second opinions and guide you in your journey. We will help you understanding things if you request.

Best wishes,

VG 

Larry1970
Posts: 7
Joined: Aug 2018

Yes. That is what I would like to know as well. I will be contacting the doctor again. I get the feeling he would rather just talk face to face but this process from start til now has been over three months. What i thought would not be cancer at all turned out to be cancer and I would just like more clarity. 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

What you need is the relevant data that the doctor gathered from the tests. You can request copies from his office today as this information belongs to you not the doctor's.

You should know how many positive cores were found and their location in the gland and the Gleason rate. The PSA histology and the results of the DRE are also important. All these is in your file at the doctor's office.

 

  

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

You need to have a hard copy of the results of all tests, which you may need for opinions by specialists and others. 

We are here for you....please contact the office ASAP....doctors permission not required.

Best luck.

lighterwood67's picture
lighterwood67
Posts: 221
Joined: Feb 2018

Well, Larry, guess what you are still Larry.  You just know a lot more about yourself.  By all means you need to get your hands on all documented assessments of your case.  You will need to read, to study, and to understand.  This will be invaluable to you, making a decision about your approach and deployment to this cancer.  This is a great site with many inputs.  There are many treatment approaches to this cancer.  The treatment option will be your decision to make.  Wish you the best in your journey.  

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