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Also - Just Diagnosed

MurrietaJimmy
Posts: 2
Joined: Apr 2016

Geez, and I thought I was healthy and it couldn't happen to me - uh, wrong!  Anyway, had my annual checkup with my doc and she found that my prostate was enlarged so she scheduled a PSA test.  It returned at a 5.4, so she scheduled me with a urologist and he scheduled me with that wonderful biopsy (so much fun).  Well, about an hour ago I left his office with the horrifying news that my Gleason Score came back as an overall 8 (4+4); Tumor involves 9 of 12 cores.  Hmm, great news.  So, now I'm scheduled for a CT and a Bone Scan to see if it's spread.  Gosh, I hope not, but if so I suppose I'll deal with it.  What else can one do; what's the alternative.  Everything I read on the internet that folks have put on, their studies, etc., have been disappointing to say the least and quite depressing.  Hopefully, I can find others on here who are in the same boat or have been that can at least throw an olive branch or two my way.  Make me feel the love.  Okay, that's enough from me.  Hope all are having a great day.

Josephg
Posts: 168
Joined: Jan 2013

First......................................................................

Take about 5 deep breaths, and continue doing that every two minutes, until you feel the panic subside a bit.  Everybody goes through this initial shock and panic.

You have come to the right place to share your initial experience and get advice and personal experiences for LOTS of fellow PCA survivors.  We are not doctors, but we have lots of accumulated real life experience, and we do a lot of independent research.

Please give us as much information that you have available, so that we can better undestand your history and current situation.  PSA history, the full details of your biopsy results, etc.

I can assure you that the folks on this forum will be more than willing to discuss your situation with you, and offer you their perspective, as soon as you have posted all of the information that you currently have available.

I was in your situation a few years ago, and I found, and still do find, the information and friendship and mentoring offered by the members of this forum to be absolutely invaluable.

Again, to the extent pssible hold back on your panic and try to maintain a rational demeanor during this extremely initial difficult period for you.

Help is here for you.

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

Jimmy,
 
When we are diagnosed, all of us are shocked and go through all those negative feelings. This generally lasts a couple of months. So I strongly recommend that you follow Josephs advise to take a minute to breath.
 
It will work out for you, but you will have to proceed with knowledge, making good decisions to determine where you stand,  andbest treatments. We, although not doctors, have either gone through what you are going through, or have done research.
 
As a So Ca resident near Long Beach, I ask that  when you mention Murrieta, does that mean that you live in So. CA.
 
First make sure that you have a copy of all your medical records, so it will be available for consults at various specialties, and discussion.
 
 
Did you have a digital rectal exam( finger wave)? What were the results of this test.
 
Is there a PSA history other than the the 5.4 that you reported.
 
Any other diagnostic tests, or any medication for your enlarged prostate.

 

As Joseph asked what is your PSA history.

What other diagnostic tests have you had? results?

A bone scan is recommended for patients who have a Gleason 8 and above, so that this test that your doctor recommended is appropriate

Your doctor recommended a CT test.........There is a better test that measures extracapsular extension...the T3 multiparmetric MRI.. There is greater definition than the Cat Scan. Also consider the right Pet Scan test, Does your medical plan allow for these diagnostic tests?

Here is a quote that Vasco wrote about image testing,

" would recommend you to get an image study (ies) done with high sophisticate equipment to have a more reliable exam so that your doctor can get better information of cancer location and then attribute you a proper clinical stage. Once with this in hand you would be then ready to look for a treatment that would satisfy you. PET scan and 3t-MRI are the best ways for an exam you could demand."

Generally with extensive Gleason 8 diagnosis as you have , there is high probability of extracapusular extension, that is that the cancer has escaped the prostate.

A prostectomy is localized treatment. Most likely there will still be cancer outside the prostate, and other treatments such as radiation and or hormone treatment will still be required. The side effects of having various treatment types are cumulative.

A combination of radiation and hormone treatment is generally recommended. The range of radiation can be expanded so that some area immediately outside  the prostate can be radiated, and is generally more effective for large volume/aggressive cancers. (This does not happen with surgery to remove the prostate.)

Quite often a patient such as you is first administered a hormone such as Lupron for a couple of months, then receives a radiation treatment such as IMRT or SBRT, while continuing with hormone treatment.

check this thread out     https://csn.cancer.org/node/290156

It is important to research, attend local prostate cancer support group(s), (USTOO is an international organization that can give direction to a local support group.) .

Feel free to ask questions. We are here for you.

H

Will Doran
Posts: 207
Joined: Sep 2015

Jimmy,

Sorry to hear about your diagnosis.  When we are diagnosed with this "beast", it is a shock. 

I was diagnosed two and a half years ago, at the age of 67.  I had a PSA of 69. My Gleason Score was (3+4) 7.  I had had no symptoms that I had a problem.. I had a Robotic Assisted Prostatectomy in Dec 2013.  My PSA went to <0.010 in two months.  I had 8 weeks, 5 days per week, of Radiation and have been on Lupron for two years.  I am now off the Lupron and so far my PSA is staying "0".  There was 40% involvment of the prostate, and one lymph node involved.  So, I was diagnosed as an early Stage 4.  My MRI's are still clear and there has been no involvent of bones, at this point.  So, there is hope for help fighting this disease.  The fight is hard and some times very frustrating.  But don't give up. 

So, Please hang in there and do all you can to fight this "beast".  Study and learn as much as you can about treatments and all of your options.  Know all the side effects of the treatments and be sure and understand every thing that will be offered to you as treatment.  You will find that your head will be so full of information that you will feel confused.  Don't give into that.  Make sure and look for the simple things in life, that you enjoy.  Nature, Family, Baseball, Football, (whatever you like), Drives in the country with your partner, Sunshine, Rain, Lightning & Thunder and even Snow, Trees, Birds, Wild Life---you get the picture.  Make sure and be strong mentally and by all means physically.  Eat Healthy, and Exercise as hard as you can.  My doctors have been very "puzzled" (their words) at my recovery, since my PSA was so high and my cancer was listed as aggressive.  I do Spinner Bike, Treadmill, Weights, Physical Therapy Exercises, and Work Out twice a week at the gym.  There are times that I don't feel like doing all this stuff, but my wife has been and is a great "Cheerleader" and keeps my spirits up and encourages me every day and every step of the way.

Fight Like Hell.  You can do it as many of the rest of us have and are doing now.  Don't give up or give into this "beast".

Know that you are in my, and all of our Thoughts and Prayers

Best wishes and best of luck

Peace and God Bless

Will

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

M Jimmy,

Welcome to the board.

I also wish that the cancer has not spread out of the gland, but you shouldn't trust much the CT results to get proper confirmation. The bone scan will tell if lesions exist in bone, turning your case into a stage IV (if any). In any case, the Gleason 8 and voluminous cancer (9 positive out of 12) is highly "risky" and leads to think that cancer may be out, probably localized (at prostate bed and near lymph nodes). The treatment choice should consider to cover the gland in addition to these areas and the best seems to be IMRT which could be done solo or in combination with other forms of radiotherapy (ex; Braky plus IMRT or CK plus IMRT). Hormonal treatment administered neoadjuvant provides some improvements in the radiation outcome results.

I would recommend you to get second opinions from the various specialists. You also should reasearch in regards to treatment choices, their risks and side effects.

The survivours above have given you excellent advices. I wish you luck in your journey ahead.

VGama

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