Hi, I’m Tedd; I live in Denver, CO and was diagnosed with aggressive prostate cancer last August at the Urology Clinic of Colorado. I have been on Lupron for the past nine months and completed 45 radiation treatments.
The biopsy found cancer in 11 of the 12 core samples, which put me at 10 on the Gleason scale. After the bone scan, no cancer was found except on my prostate.
I am now scheduled for Labs on 9/11 and to meet with my Oncologist on 9/25 to get results. Do I stay on the Lupron and add a cancer fighting drug? I am worried and wonder what is the next step and if I have years to live or months.
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Teddski
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What was your PSA at diagnosis and what is it now? To ease your mind there are a lot of other treatments out there. You probably have years of good quality life. Relax and enjoy.
After 10 years of active severance with psa at 4.0 it shot up to 15.4 last August. Three months ago as I started the radiation it had come down to 0.83.
How many mpMRI-targeted biopsies did you have in those 10 years of active surveillance? What were the results of the last one? Why do you characterize your prostate cancer as "aggressive?"
Two - one in 2008 - described as minimal amount of cancer - 3 out of 12 cores and one in 2018 - 11 out of 12 cores. The doctor told me with that many cancer cores, he described it as aggressive. But in the bone scan last fall, no cancer was found outside the prostate.
Aggressive means higher stage (T3/4) or grade (Gleason 8-10), which you didn't have. It's hard to see why you would need ADT with your radiation at all with your Gleason 3+3 cancer.
I was told with the number of cancer cores, my Gleason was a 10 . so I am on ADT and finished my 45 radiation treatments a month ago. Both Denver Health - in a phone call and the Urology Center - in office told me the cancer was aggressive. That is why I am wondering ifI have years to live or months.
You didn't mention your Gleason was a 10 - that's different. It's the Gleason score that makes it aggressive. Hopefully, you will be cured after you finish your Lupron.
I'm in a similar position: Gleason 9, "aggressive" cancer but with no evident metastasis; 40 radiation treatments (completed) and two years of ADT. I'm on Zoladex shots (similar to Lupron). My oncologist initially prescribed Casodex as well, but took me off that drug in hopes of improving my sleep, which has been pretty bad since ADT was initiated. My sleep has not gotten any better, and I worried that the withdrawal of Casodex would compromise my therapy. However, I am now seven months into treatment, and my PSA has sunk from an initial 16 to 0.1, and my testosterone remains extremely low. Oncologist says there's no real evidence that Casodex improves one's survival odds, and so she and others tend to give it just for good measure. From everything I've heard, it sounds like you're on the right course, and I hope you continue to have good lab results.
I’ve read the reply threads and still don’t know your latest PSA (indicator of cancer growth if no mets detected). If you have steady at <0.1, then you’re at manageable state, HOWEVER if it never get that low, and quarterly lab test indicate rising PSA, you need a more aggressive treatment. Your primary therapy was IMRT in April/May? (2019) so that and Lupron should have knocked it down and within 3-6 months. If it doesn’t, I think the Onc should consider chemo + second generation antiandrogen such as Zytiga or Xtandi, or third gen Apalutamide (Erleada).
To be clear, there are two PSA stats that lab works can do. My first Onc ordered standard resolutions for his patients, thus a number of <0.1 is considered “undetectable”. others including brand new Onc uses high precision PSA test (only have one so far) and the numbers are to hundredth of a decimal. So to me, your 0.83 means that the beast is till alive, albeit in a lower quantity and producing detectable PSA. I hope I made that clear. In my own case, a cocktail of chemo (not just docetaxel) + Lupron knocked my PSA within 3 months to <0.1 (from 15+).
Thanks for the info.My labs are scheduled for 9/11 and i meet with the doctor on 9/25. I know it is two months away, but i am to freaking out as a true pessimist.
Teddski relaxski forget the year/months in your headski. You'll be around for a very long timeski. Pcaski is a slow growing cancerski so enjoy your selfski and laughski.
It's natural to feel some anxiety and foreboding. My moods fluctuate from optimism to pessimism and back. Nobody can tell you what to feel. You just have to fight despair by doing the things you enjoy and just trying to live your life. I've had a long stretch of good days and am now on what I hope is a short stretch of bad ones. My condition hasn't changed, just my mood. But I'm trying. I like to say that I'm not fighting my cancer because there's not much I can do about it except be the best patient I can -- through diet, exercise, and rigid adherence to doctors' orders. But I can fight depression by getting up, moving, and doing the things I enjoy.
Thankski. All kidding aside... we all went through what you're going through. PLEASE do not let this time in your life be wasted on anxiety. Try to laugh as much as you can.
The doctor is talking about another one to two years of Lupron so the cancer does not come back. He will be monitoring the PSA at three month intervals.
Your anxiety and fear are completely understandable. PC IS a big fucking deal. There's a lot of grief - loss - with PC. Your life IS different.
I wonder if some of your depression and anxiety is because of the Lupron?? Although many here seem to weather the emotional storm of Lupron well, I did not. A true roller coaster of emotions - depression, sadness, fear, grief - they'd rear their ugly little heads without warning. Often, I just had to tell myself, "it's the drug, it's the drug."
But, I agree that it's not time to bring out the funeral garb. There are many other resources available to you.
And, since you're on Lupron for another 1-2 yrs, it's extremely important to do penile rehab. I'm the "Loop guy", btw.
I've offered a document detailing instructions for my device, and my experience so far with it in 16 months of ADT to anyone who wants it. This device you make yourself is saving my erections during ADT, to the extent that libido is "surviving" -- i.e. active. I encourage you to try any or all of the three ED devices that some guys have already ordered and are still waiting for: Giddy and Xialla. These two FDA-tested devices can actually work together, since they don't conflict positionally.
Tedd - it's been a while. How is your PSA holding up?
Since we've had basically the same treatment and disease - hopefully yours is undetectable or nearly so. I've had 4 PSA reads since the radiation was completed last March, first was <0.1 (undetectable) second and third were 0.1, last one was back to <0.1.
It's important to note - these are considered normal, as are the small variations. That's because we still have a prostate, even if it's mostly cooked. Men who go for removal are much more candidates for the super-sensitive testing. Radiation guys - we can expect the number to bounce around a bit until it reaches a "nadir" - a steady state.
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