My first PSA was 29.9 my Gleason score was 4.4.
I was put on Hormone Therapy and had my first injection was in December with the second in January. My next is on 4th February.
I was informed that my cancer was local advanced.
A bit about me, I have type2 diabetes, very deaf and partially sighted.
I am carer to my disabled wife and we live on a narrow boat.
Hello,
The fact that you are receiving injections every month makes me think you are on Firmagon (chemical name degarelix). Thats a good start. No testosterone flare with Firmagon. I am not quite sure about "local advanced". Is your medical oncologist saying your prostate cancer is still confined to the prostate gland but aggressive or is he/she saying it has metastasized outside the prostate. You need a little clarification on that.
A lot of people are confused about Gleason scores and what they mean. There is no period between the two 4s in your Gleason score. It should be a plus sign. The pathologist looking at your biopsy sample assigns one Gleason grade to the most predominant pattern in your biopsy and a second Gleason score to the second most predominant pattern. In your case 4 + 4. The two grades are then added together to determine your Gleason score (Between 2 and 10).
Cancer cells closest to 1 are considered to be "low grade" and tend to look like normal cells. Cancer cells closest to 5 are considered to be "high grade" and have mutated so much that they barely resemble normal cells. With a Gleason 8 you have a high grade prostate cancer and that is why you have been put on hormone therapy (sometimes called androgen deprivation therapy).
Don't despair, I was diagnosed with aggressive, metastatic PCa and my PSA at diagnosis was a little under 1700. I thought I only had months to live. That was six years ago. You are going to have many more happy years living on your narrow boat. Hope that helps!
My injections are of Prostap, thanks for pointing out how to present the Gleason score. They tell me my cancer has spread from the prostate but the scans have shown not far advanced.
Prostap is Leuprorelin (Lupron), a common first step of ADT. It can be given monthly, or 3, 4 or 6 month intervals. I'm on a 4 month interval between shots. Gleason was 4+3 and PSA of 43.1 at diagnosis. First shot on Dec 3rd, on my January 15th PSA test it is 4.08! I have started IMRT on Jan. 3rd and Zytiga so I expect the PSA to be undetectable by March. A 90% drop in PSA # in a month is a good sign the HT (ADT) is working. Hang in there and know that we're all pulling for ya' .
Psa around 1700? Wow. Mine was at 800 one year ago and I too thought that my time is very short. Thank you for your post. I'd love to see 7 years
I had an 840 in 01/2015 and coming up on a Five year survival this October! Old data stated that Stage IV PCa had a 28% chance of 5 years - that was before the new studies with ADT/Chemo, ADT/Zytiga, Provenge, Cabazitaxel et al. Fight on
Where was the local advancement to?
TO SWAGMAN55. NOT BEING FUNNY (AS I USUALLY TRY TO BE) BUT YOU'RE "REALLY IN A BOAT". YOU HAVE MANY ISSUES TO CONTEND WITH AND IT'S GOOD THAT YOU CAME TO THIS SITE. MANY INFORMATIVE PEOPLE HERE WHO CAN ANSWER YOUR QUESTIONS.
I AM TYPING IN UPPER CASE SINCE YOU MENTIONED YOU HAVE "A SEEING" PROBLEM.
WOULD YOU BE KIND ENOUGH TO TELL US YOUR AGE, YOUR LOCATION (I KNOW ON THE WATER OF COURSE) AND WHERE YOU ARE BEING TREATED (NAME OF DOCTOR(S) TOO)? THIS INFORMATION WILL HELP THE PEOPLE HERE IN HELPING YOU. NEXT IF YOU TELL ME YOU HAVE A HOLE IN YOUR BOAT, I THINK I'LL KILL MYSELF.
GOOD LUCK, GOOD HEALTH AND GOOD HUMOR.
J-O-H-N FRIDAY 01/25/2019 6:04 PM EST
John the clown, for a while i thought finally you are getting serious with the use of caps lock only to realise that its for swagman55’s ‘seeing’ problem ayayay!
But seriously, i really want to applaud you swagman55 for being such a loving husband despite your pca condition, i do hope you can get some assistance from your relatives/friends/local govt to help you with daily activities and taking care of your wife... praying for you and your wife 🙏🙏🙏
You are quite something! Managing your own medical issues (before PCa), while also being caregiver to your wife should give the rest of us pause about "whining" so much, Lol. However, while you seem to be some sort of super hero, you might want to consider seeing if you can get home care (if you don't have it now) to help both of you with what ever is too much work, even making dinner, laundry, etc. Folks here may be able to steer you to state and federal assistance for this. Diet and nutrition is also important but having diabetes may have already addressed many of the dietary recommendations for PCa, mainly eating mostly vegetarian, little or no red meats, and low or no alcohol consumption. Others will have more information on this, as well as reputable websites you can visit for more in-depth information.
Lupron does tend to make you fatigue more easily and lowering your stress is a good idea, excluding exercise which is also a good idea. John is right that if you give us more information, more people with similar medical conditions can tell you what they have done and what has worked.
As you may have already gleaned from people's questions, this disease is nuanced. One size does not fit all. Your specific diagnosis: gleason score from a biopsy, where the disease has spread (i.e. local lymph nodes, bladder, bones, etc.), your PSA doubling time (literally how long your PSA number takes to double from one test result to the next - this requires three to five tests about 6 weeks apart) and other factors are puzzle pieces that can help get a sense of how to proceed for your condition.
Right now, it is best to just make sure you understand the disease but try to avoid overwhelming yourself on the google machine. Consider getting a second opinion on your biopsy gleason score and trreatment plan. No good oncologist or urologist will be offended and may encourage you to get the second opinion for your peace of mind and confidence in the treatment plan they are recommending. The best prostate cancer center that I am aware of for second opinions on gleason scores is Johns Hopkins. Here is URL for their prostate cancer webpage: urology.jhu.edu/prostate/ Here is URL for second opinion pathology webpage: pathology.jhu.edu/departmen... (you may have to copy and paste it into your browser if the link isn't working). The second opinion can be coordinated between labs; through Johns Hopkins and your doctor and original pathologist that assigned the gleason score.
Good luck. Keep us all posted.
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