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Waiting to begin treatment

eonore
Posts: 50
Joined: Jun 2017

Hi, i am a 65 year old male who learned on Friday that I have prostate cancer.   I was kind of stunned by the diagnosis and did not ask the right questions, so I apologize for not having more information to share.   The Doctor said my Gleason score was 8, and he mentioned another score which I believe he said was related to the Gleason score, of 4.   He has ordered a series of tests, a CT thorax with contrast, an NM bone scan whole body, a CT abdomen with contrast, and an MRI.   The MRI is scheduled for July 19th, and I will be scheduling the other tests on Monday, presumably in July.   He also has scheduled a Cystoscopy for August 29th, after which we will meet and decide on a treatment plan. Therefore treatment will not commence until September at the earliest.

My question is should I be concerned about the length of time before treatment begins.   My doctor said I have an agressive cancer, and I guess I expected the gurney to be rolled right in and treatment commenced.   The waiting is difficult and I would like to get started as quickly as possible.  Do I need to calm down?

 

Eric

FinishingGrace
Posts: 83
Joined: Apr 2017

I'm sorry to hear about your diagnosis. I am helping a neighbor deal with advanced PCa and am rather new to all of this so I am unable to direct you specifically. Based on what I have read here from the excellent men who contribute and share their stories I would advise you to get the full scope on every type of treatment before you proceed.

Each one can have severe side effects and rushing into one type of treatment seems inadviseable. Better to find out your options, gather ALL of the information about the positives and negatives of each option, and then make the decision that seems best based on your research, your instinct, and input from at least one oncologist and a urologist. Better yet to get second opinions from each of those disciplines.

Wishing you the best.

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

We have all been there. A friend of mine had bowel cancer and they had him on the operating table within three days. After my biopsy confirmed prostate cancer, I was told I had to wait at least 8 weeks. The insertion of the biopsy needles causes the tissues to fuse temporarily and will not return to normal for several weeks. During this time, they cannot perform treatment.

Also, keep in mind most prostate cancer is indolent (it is lethargic and does not spread that quickly like other cancers, even a Gleason 8).

A lot will depend on whether your cancer is confined in the prostate capsule or not. This will determine your treatment course. You should also be thinking about second opinions. Use your time wisely. Get to the bookstore and get some books about prostate cancer so you can be ready with questions when the doctor gets the results of your tests. Get busy. You have treatment options at your age!

A friend had a Gleason 9, his tumor was contained, and after removal of his prostate, his PSA is non-detectable today. So, don't start giving up hope now.

Don't panic about the bone scan. We have all had them, regardless of our staging. The MDs need a benchmark scan so they can see changes in case there is trouble later.

Want to get started now? Log into the YANA site in Australia and browse their site:

http://www.yananow.org/

Their short booklet "A Strange Place" is a good place to get started.

Good luck. Others will check in here with you shortly, I am sure.

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

I pair the above opinions. You should get second opinions on the diagnosis and doctor's recommendations and try finding details on treatments before deciding. In my case it took me two and half months from diagnosis to treatment. You surely have time for getting acquainted with the situation with no prejudice to the treatment you may do. Some urologists instigate an earlier intervention as being better but such timing has no specifics. Statistically, also it makes no difference in outcomes if the treatment is started 4 to 6 months later.

You did not provide details on your case but for the number of tests you have been scheduled for (in particular the colonoscopy) and the doctor's comment "an aggressive cancer", I would think that he has more data in hands than just the Gleason score. I believe that the pathologist report (on biopsy) got the information that made your doctor to think of something more drastic. Can you provide us with those details? Do you have a copy?

In any case, after a positive diagnosis for cancer one needs to find details of the extent of the disease. This is via image exams and that is exactly what the doctor is recommending. He will then give you a clinical stage from which you will decide on a therapy. Doctors do not decide. They just inform and recommend. In the end, before intervention, we must sign an agreement reliving his responsibilities. The paper says that we are well informed of the consequences and have chosen what we want. The doctor will only respond for any malpractice.

Gleason score 8 (4+4) is composed by grades 4 which are cells commonly considered aggressive, but treatable. By statistics Gs8 cases, for some reason present more difficulty in being treated, and typically are subjected to a more concentrated examination. I wonder other aspects of your case.

Can you tell what took you to the biopsy? Was there any symptom?

Do you have a PSA histology?

Was the DRE (digital rectum examination) positive?

What about any other illness you have/had of significant value that could interfere with a treatment for PCa (prostate cancer)?

Here are some links that may help to understand about PCa matters and questions to the doctors;

http://www.mdedge.com/ccjm/article/95510/oncology/practical-guide-prostate-cancer-diagnosis-and-management

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

http://www.harvardprostateknowledge.org/understanding-your-prostate-pathology-report

Johns Hopkins useful booklet: Choosing the right treatment for your prostate cancer ;

https://books.google.co.uk/booksid=16TbQ6as4uAC&pg=PA1&lpg=PA1&dq=choosing+the+right+

treatment+for+your+prostate+cancer+johns+hopkins&source=bl&ots=RUO2tcFIuM&sig=

KdfOBDSchbX6w12IDUn8JqvrZRE&hl=en&sa=X&ei=bZ4GVaOdMsWsUfq5hFA&ved=

0CC4Q6AEwAA#v=onepage&q=

choosing%20the%20right%20treatment%20for%20your%20prostate%20cancer%20johns%20hopkins&f=false

I do understand your worries regarding the waiting to treat when you have been already diagnosed and, still more, with an aggressive cancer.  But such gives reason to find all details before commitment. Cure will be the final goal, but one needs to know what is fighting and where to attack. You cannot just depend on guessing.

I would recommend you to consult various specilaists (medical oncologist, urologist and radiologist) and have a family member accompanying you to the consultations, getting notes (even taping) of conversations. You can always call the hospital back to clarify any doubt and should decide only when feeling confident with an option.

Best wishes and luck in your journey.

Welcome to the board.

VGama

ASAdvocate
Posts: 116
Joined: Apr 2017

Here is a useable link for the "Choosing the Right Treatment for Prostate Cancer" that VDG mentioned:

http://www.cincinnatiprostate.com/uploads/1/5/5/4/15543750/jh_choose_treat_2011.pdf

 

 

eonore
Posts: 50
Joined: Jun 2017

Thank you all for your comments, advice and questions.   As I said, I didn't know the questions to ask and will find out the additional information that I do not have.   I have started the process of reading and understanding, and when I have a complete picture I will repost.

Once again, thank you.

 

Eric

 

GeorgeG
Posts: 127
Joined: May 2017

If available try to get a 3T ER MRI with contrast. It is one of the newest scans and one of the first that is actually useful to a surgeon or radiation oncologist in the early stages. Multiple surgeons told me that basic MRI's are of little value. What is your PSA history?

Sorry that you had to find us. Glad that you are getting educated and want to participate in your treatment. While we cannot tell you what you should do, there are a lot of people well educated on the process here that can help get you up to speed. As stated above, the diagnosis is a shock but once you process all of it and are ready to get to work, there are many options and many success stories.

Work the problem, what other reasonable choice do we have?

 

George

 

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