Hi, I was diagnosed with PC in November 2015, PSA of 89 and Gleason Score of 8. I'm 51. My post surgical Gleason Score was raised to 9 and there was metastasis in 5 lymph nodes. I'm currently on Lupron Depot (45mg every six months) and had expected a 8 week course of radiation starting in April. But my surgeon said that he'd like to get the results of a Decipher test first. I had never heard of this test before but in reading about it online, it seems to be a genomic test to determine the best course of treatment moving forward. Has anyone had any experience with this? Also, I'm having a side effect from the Lupron where the joints in my hands are achy and I get trigger finger in 4 fingers at night. Has anyone else experienced this side effect? I'm wondering if it goes away or if i should consider trigger finger surgery to relieve the pain. My surgeon said that he had not heard of that side effect from Lupron.
On the whole, I feel like I'm doing ok. But it's a mental challenge not knowing what's to come and when.
Written by
cfrees1
To view profiles and participate in discussions please or .
Glad to know your doctor is hitting it hard and fast. Genetics is a new field where I'm sure great advances will be made. I wouldn't jump on surgery on your hand just yet. See what the doctors think. My husband has been on Lupron continuously since 2005 and had some side effects, but nothing like that. Joint pain, yes. Zometa infusions were the worst but no more of those. Keep the faith.
He went through a monthly infusion in 2006 for a year. Every month the side effect was different so we didn't know if it was caused by the Zometa or the cancer cranking up again. It was the Zometa. Headaches, joint pains, fever, muscle aches. I took a day off from work on the day of the infusion and the day after. He could barely get off the couch the next day. Was it effective in the long run? I'm sure it was. He had cancer throughout his tailbone. No more bone mets after that.
I inadvertently forgot to mention that it was the doctor who had ordered a year's worth of Zometa. Now, they've changed the protocol and don't give it that frequently. I believe I had mentioned earlier that they threw everything at him since his situation was not a good one. Still here going on year 13 since diagnosis and surgery. Keep the faith.
I'm on intermittent 6 monthly Trelstar injections and have had trigger finger in both hands although I didn't associate it with the treatment. I had an injection in my right hand which helped but it came back. I now do flexing exercises first thing every morning and that really helps. I don't think surgery is a good idea unless things are really extreme.
I have been on Lupron for five years and have found that the one month 7.5 mg injection causes less side effects for me. I had robotic surgery, IMRT and after two years the cancer recurred. For great reference, see the web site theprostateadvocate.com/obs...
Good Luck, Clint
Hi. In December 2003 my lymphandectomy resulted in 2 positive of 9 nodes so prostatectomy aborted. My Gleason 3+3, PSA 32.7, pT2bN1Mx. Plan was radiation.
Went for second opinion, new plan: neoadjuvant hormones, wait 4 months then extended lymphandectomy plus prostatectomy and continued hormone ablation for a total of 23 months. Also signed on with an oncologist at same CCC institution. Controversial plan in 2003. Post surgery pT3bN1Mx, Gleason 4+3, grand total 8 positive nodes, PSA 0.03. Now 13 years later, age 71...after on/off hormone ablation, some IMRT, Provenge, slowly progressing disease M1 but great quality of life.
My goal was to have a chronic situation for as long as possible knowing reality of death by PCa. Strongly recommend getting an oncologist (you really do not need a urologist/surgeon now), be at the best institution possible (a CCC if you are in USA) and count on medical science advances. You have time so have a plan...better than 'good luck'.
That's a good thought, hadn't really considered when it was time to switch doctors. My urologist/surgeon is the Chair of the Urology Department at the University of Minnesota, which is a CCC institution. He was recommended to me by a urologist friend of mine so I definitely trust him with my care. But you are right that there is a point where a transition should happen. I'm just not sure when that is. My next appt with Dr. K is scheduled for May 11, where we will check my PSA after my first three months on Lupron. I will ask him his opinion at that point. My post-surgical PSA was 0.06 without Lupron. It was Dr. K who is pursuing the Decipher so I know he is up to date on latest advancements in the treatment options.
I had surgery in Oct 2012 with a pathology result of pT3a N1 MX. PCa was found in one of the lymph nodes. I've had no further treatments, though I am currently taking metformin. After some investigation I chose not to pursue radiation. I continue to see my surgeon (UCI Medical) and a PCa oncologist in Marina Del Rey, CA. Currently watching the PSADT to determine when I may need to go on HT.
Anyway, my surgeon recently ordered the GenomeDx Decipher Classifier test for me. They will get a tissue sample from the 2012 pathology to perform the genome testing. The test result assigns you a Decipher Score (0-1) which corresponds to a low, average or high risk category. You can find a sample report format on the GenomeDx website. I am told I will get the result in 4-6 weeks. They process the sample in their lab down in San Diego. I am not sure that the result will tell me anything other than that I am high risk, which I already know. It is an independent assessment apart from the surgery pathology though.
Is this the same as other online discussions about trying to determine which treatments (drugs etc.) will work and which won't? Does the Decipher test do that too? Or is that a different test?
My understanding is that the Decipher test is not one of the genetic tests that tells you which particular treatment (e.g. drug) is best for a particular individual. I believe that it is more to get an idea of the risk to determine how aggressively to treat after surgery. I do have somewhat limited knowledge on this test and look forward to hearing from anyone offer more info.
FYI. From the GenomeDx website:
"The Decipher Biopsy test independently and accurately provides better risk assessment for more individual treatment for all patients diagnosed with localized prostate cancer.
The Decipher Biopsy test is based on the patients personal tumor-based genomics, Decipher Biopsy helps determine who:
May be suitable candidates for active surveillance
May be treated with local therapy alone
May benefit from intensification of multi-modal therapy"
Well, I'm assuming that I'm high risk as well and am prepared for a very aggressive treatment plan. If it turns out that I won't need to be that aggressive, that's a bonus. If I do, I guess there is benefit of knowing that I'm not wasting time, effort or risking side effects for no reason. I can't see any downside of this test. I did locate another online source that has a bit more information, deciphertest.com/
Decipher does not tell you what therapy would be better. It determines the aggressiveness of the cancer using a tissue sample of the prostate, post surgery. It predicts the probability of having a clinical metastasis within 5 years of surgery, and within 3 years of successive PSA rise (biochemical recurrence).
In your case, I do not understand the value of Decipher since you have reported that you had 5 positive lymph nodes, unless those lymph nodes were literally next the gland and could be treated by the radiation (pretty unlikely). Even then, I personally question the rational for radiation given what you have told us about your clinical picture. Radiation (salvage radiation) radiates the prostate bed and with 5 positive lymph nodes (and a Gleason 9 with a 89 PSA) it is very unlikely that you don't have cancer cells floating around in your body.
Like all other treatments radiation can have its own laundry list of side effects which can include bowl bleeding and bowl incontinence. Radiation should not be treated lightly. Also, radiation is a local treatment that only treats the targeted areas, it is not a systemic treatment like hormone therapy.
I am not a doctor, so don't make any judgments based on what I say, but do go back to your doctor and have a conversation which might clarify why he wants you to have Decipher. It will not hurt you since you are already on hormone therapy, but it seems economically unnecessary, as I believe that salvage radiation would also be for you.
In other words, a serious conversation with the doctor is in order.
Try an Occupational Therapist who treats "hands" as well. Unrelated to my PC, my OT helped me considerably after Carpal Tunnel relief surgery. (Another member's post about hand stretches and exercises reminded me of this successful Therapy!)
Somewhere, I read you're still under treatment by your urologist and a suggestion that you transition your care. I also transitioned my care to an onc specializing in Pca. I also believe that once your Pca is no longer local, you need a Pca onc to move forward with your treatment.
Yes, it's only been 4 months since my surgery so in May I'll have my 6 month post-surgical examination and PSA test review. I would expect that at that point my urologist might refer me to an oncologist. Since my PSA was at 0.06 after surgery, I don't think that is considered surgical failure yet so maybe that's why? I'm not sure. I'll definitely ask at my next appointment.
It sounds like your Dr. is not affiliated with a major institution such as M D A nderson or Sloan Kettering etc. It would be important to check with them as I they deal with your illness on a regular basis.
Of course he is, the University of Minnesota is a certified NCI facility and they work cooperatively with Mayo (just an hour south of here). My doctor is the Dept Chair of the Urology Dept at the Mayo Cancer Institute. So I do not doubt his credentials at all.
1VUI Center for Outcomes, Research, Analytics and Evaluation, Vattikuti Urology Institute, Henry Ford Health System, Detroit, MI.
Abstract
We performed a systematic literature search to identify original articles and editorials about the Decipher(®) Prostate Cancer Test (GenomeDx Biosciences, San Diego, CA) to provide an overview of the current literature and its present role in urologic clinical practice. The Decipher test, which uses the expression of 22 selected RNA markers (from a total of over 1.4 million), showed a very high discrimination in predicting clinical metastasis (0.75-0.83) and cancer-specific mortality (0.78) in external validation studies, outperforming all routinely available clinicopathologic characteristics. Further, the timing of postoperative radiotherapy (adjuvant vs salvage) may be guided based on Decipher scores. The Decipher test was also the only independent predictor of clinical metastasis in patients with biochemical recurrence after surgery. The Decipher Genomic Resource Information Database (GRID) is a novel research tool that captures 1.4 million marker expressions per patient and may facilitate precision-guided, individualized care to patients with prostate cancer. In this era of precision medicine, Decipher, along with the Decipher GRID platform, is a promising genomic tool that may aid in managing prostate cancer patients throughout the continuum of care and delivering appropriate treatment at an individualized level.
Thanks! I go in to discuss my Decipher test results with my doctor today. I know the preliminary stuff, I'm still in the high risk category, because I am already signed up for adjuvant radiation treatments to start in July. But I should learn more later today.
So, I have an update. The results of my Decipher test came back and I am still considered "high risk". Decipher score will range from 0 - 1.0 and mine came back at 0.88. Translating that into something actionable, the 10-year mortality is 20% if I do nothing. So, of course, I'm going to continue to do something including radiation of the pelvic floor beginning July 5. I have to admit, my expectation was so much worse than that, it came as a kind of a relief that the chance of dying was only 20% within 10 years. My doctor felt that was very high, but I suppose as a urologist, his population does tend to live for a long time after diagnosis. For me, it's given me a new outlook. I could be that 1 in 5, but I could be among the 4. So I have a lot of hope.
Oh yeah, and my PSA is currently at 0.05 after surgery and 3 months of Lupron. That's down insignifcantly from 0.06 after surgery.
I had RP five weeks ago. Gleason 8 and intraductal type (apparently rare and aggressive). No lymph node or seminal invasion, and margins were negative. But extra prostatic indication. So a mixed bag. Anyway, got results back from Decipher and I'm at .91. Not very encouraging. Urologist will likely recommend adjuvant radiation but from what I have read, doing so increases likelihood of no metastisis after 5 years from 52% to 66%. And no overall difference in long time survival. Trade off doesn't seem that appealing, so I am thinking that let nature takes its course. Guess I need to learn more about radiation therapy as don't want to feel miserable for two years just to end up with the same miserable outcome.
I had adjuvant radiation after surgery (39 treatments, 5 days a week for 8 weeks). My Decipher was like yours. I didn't really have any side effects from the radiation. My sexual function was already evicerated by the surgery but i did regain my continence before the radiation treatments started. So, at least for me, the radiation did not lead to anything I would consider "miserable." I just got a call to schedule me for a PET scan upon the suspicion of recurrence. We'll see how that goes in a couple of weeks. Anyway, i would not discourage you from follow-up radiation based on my experience.
Saw my urologist yesterday and he didn't present any options other than aRT and aDT. The Decipher score really got his attention. And I have complete faith in him. So aRT and aDT are a go in a couple of months.
Thanks very much for sharing - very helpful to me. I'm relatively new at this and getting your feedback is oh so appreciated and considerate of you. Best wishes on your PET scan.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Long Strange Journey
New Here
BIOPSY, GLEASON SCORES, mines 4+5=9 or grade 5..............QUESTION?
