Newly Diagnosed Agressive PC

Old Salt said:

Welcome to the group

I hope that the scans will not show significant disease outside of the prostate. Once you have those results, please report back to us; we have other Gleason 9 patients who may be able to give advice and hope.

In the meantime, please be aware that Gleason 9 prostate cancer can be treated successfully.

I am sorry for your diagnosis. All of us  are depressed and experience all of those negative feeling for the first few months after Diagnosis.

Gainingknowledge about this disease will help. Also if you can associate with upbeat individuals, so  if you attend services make sure that the clergyman is upbeat .

The side effects of different treatment modalities are cumulative so since the cancer is outside the prostate having surgery that can have major side effects is not advised by most doctors since a combination of radiation and hormone, or possibly hormone treatment only will get the job done with less side effects. Surgery is a local treatment only 

You want to find the very  very best medical  oncologist the first that  to be lead doc for  your medical team.....with this in mind please share where you live. We may have a referral for you.

Take someone with you to your medical appointments. Also get copies of all medical records. Ask permission to record medical appt

Foamhand,

The biopsy results you posted above would frighten any living person. We all cry when diagnosed. They indicate high risk disease, with aggressive behavior. You may have to counter attack the bandit with an aggressive treatment too.

My recommendation is for you to consult various specialists, get second opinions on any proposed treatment and do not give preferences to anything solo based on a "famous" doctor's recommendation, in particular if you are unsure of the consequences and benefits. Doctors will suggest their preferences which may not match the ones of their colleagues. It is therefore important that you gain some knowledge on the matter before deciding.

At the moment you should get as much info of your status as possible (image studies, bone scan, etc) and get a clinical stage. You are young and fit but hidden status is always illusive (such as your case with PCa). While waiting for the results you can also add some tests/exams in regards to lipids and other situations that could put into jeopardy the choice of a treatment. I always suggest our comrades to get a testosterone test as reference marker in future hormonal therapies. A bone density scan (DEXA) will verify the bone health which is the "place" cancer likes best to spread. A colonoscopy can check for any existing ulcerative colitis that in certain cases/locations would prohibit an attack with radiation. Future medications to treat PCa (now on trials) can best suit some patients (more than others) if one have certain genes. A genomic test can help in differentiating treatments that would work better. Etc, etc.

You need to read about our problem (PCa) and get informed to the maximum you manage to absorb. Take notes when in consultation and prepare a list of questions before the meeting with the specialists will help you to understand the matters. Your case is pretty bad and doctors will suggest intervention the soonest but please note that even high risk cases can delay treatment a couple months without prejudice to its outcome.

You should be aware of treatment risks and side effects. Most probably you will benefit mostly from a combination therapy (two or three in one protocol). Urologists typically recommend surgery to debulk the big tumor (the gland), though one would not get cured if the cancer is not contained, and risk a series of added side effects. Radiation with an ADT protocol (hormonal) is typical for aggressive types with metastases (high probabilities of your situation per the data posted above).

I think you should choose a therapy considering the quality of life. You are young and got many years to live and should have that with quality not just quantity.

Here are some links that may help you now and along your journey;

A practical guide to prostate cancer diagnosis and management;

http://www.ccjm.org/index.php?id=105745&tx_ttnews[tt_news]=365457&cHash=b0ba623513502d3944c80bc1935e0958

List of Question;

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

All about ADT;

http://www.cancer.gov/cancertopics/factsheet/Therapy/hormone-therapy-prostate

Diet and a change in live tactics become important to counter the treatment effects. Physical fitness programs and proper nutrition are important when dealing with prostate cancer;

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Best wishes and luck in your journey.

VGama

Sorry for your diagnosis, but even the most severe cases often live for years.  However, there is a lot more to this disease than just the disease itself. And one of the most unpleasant may be loss of testosterone.  When T is removed from a male, really undesireable side effects may occur, and may be worse than you can imagine.  I do not intend to scare you, but I do intend to inform you that some patients (me included) can suffer far more from the side effects of treatment than from the disease itself.  Do not underestimate the problems that removal of T can have and be prepared to deal with them as they arise.  Changes in diet, exercise programs, and meditation will be necessary.  

     I thought, "It wont happen to me", but it did happen in spades, and the first year was a nightmare because I was not prepared for the side effects nor did I imagine that they would or could be so severe.  For me, it was the same as having a new disease to deal with.  The cancer was one problem, but not nearly as severe or as problematic as the removal of T.  Now, not everyone suffers as I did, but, on the other hand, many others do.  This is just a word of warning that you cannot imagine the future.  It may be a lot better than you think, and it may be a lot worse than you think.  In my case, after one very difficult year, I received almost three years of wonderous health and the gift of high quality life.  With this disease and treatment, there is just no predicting the future.  My suggestion is to celebrate every moment of life, and make the time you have left the most valuable time of your life.  Good luck for your future.  What steps you take to stay positive and loving will greatly effect your quality of life.  Any negativity that you allow yourself to get into will be greatly to your disadvantage.  In the meantime, we are all rooting for you and available. 

love, Swami Rakendra

Family members are more likely is develop prostate cancer so it is important to notify other family members such as brothers, sons, uncles and even cousins.

These men can have a Baseline PSA test at age 35 as well as a digital rectal exam. At age 40 start annual visits to the doctor for testing.A correlation has been shown among family members of Prostate and breast cancers.So women in your family need to get those mammograms.

All need to eat heart-healthy since heart healthy is prostate  and breast cancer healthy