At the age of 49 in October of 2013, I had a prostatectomy with 23 nodes taken. I am a gleason 4+5, SVI in both sv's, epe, negative margins, LN0. Decipher test results 25%. I belong to the club I never wanted to join of high risk locally advanced Pca. No erectile dysfunction and 98% urinary continence, with an occasional squirt with a sneeze. All sounds great so far. 3 mos. after surgery psa 0.00 until my psa rose to 0.1 in 11/15 and 0.157 in May of 2016. It won't be long now and it will be classified as a biochemical recurrence. I just talked with rad. oncologist today to pursue salvage radiation of prostate bed and pelvic area. He suggested a course of Casodex for 4 mos with radiation and 28 months of Lupron. No Dx or node involvement at this time. I am not interested in the 28 months of Lupron now, I most likely will have time for that later. But I am considering the 4 months of Casodex with the radiation. I am sold on radiation but not ADT at this time. Have any of you had a short 3-4 month course of Casodex? If so did you have breast enlargement, swelling and tenderness as a side effect? I am in great shape run 25+ miles a week and run half marathons as well as other races every year. I have to think my excercise regime and extremely healthy eating will keep some of these side effects at bay?
4 month Casodex + radiation - Advanced Prostate...
Advanced Prostate Cancer
Everyone is different; however, a small dose of radiation to the breasts, and Casodex did not effect them, for me. Speak to to your doctor.
I had Casodex for a couple of months at one point in my 5+ years of treatment. Had breast swelling...had localized radiation to resolve...swelling gone for the most part, no pain, no recurrence. Been on ADT for all of the 5+ years. Not fun, but I'm still here, going on 68 years old. Not a runner or exercise buff.
I would listen to your doctor and do the ADT with everything else. Hit it hard and fast or you could likely be sorry.
If you go on Casadex, or any other drug, you would need to stay on it till it becomes in-effective. My take.
I did radiation along with Lupron and Casodex. The entire treatment lasted for 6 months. No problems with breast enlargement but had other side effects of hot flashes, foggy memory and fatigue. Daily exercise helps a lot to minimize the side effects.
Casodex did cause some breast growth and increased sensitivity. Once the growth is there you will need to live with it, however you can speak with the rad about pre-radiating the breasts to prevent the growth. However, it is more radiation and since you are planning prostate bed radiation it needs to be approached with great caution and with a complete consult with the rad doc.
As far as your plan to not have the Lupron I do want to make sure that you do know that there is a lot of good evidence that the Lupron does make the radiation more effective and might make a difference in its ability to put your cancer into long term remission. I am not aware of any evidence that Casodex has a similar effect (not saying that it doesn't, just that I am not aware of it).
Joel - Thank you very much for your reply. The Radiation Oncologist did discuss the radiation to the chest area to prevent the breast growth. He was not very excited, as you, about the radiation to breast area. The rad doc referenced a recent UCSF study that looked at patients who had a rp and sometime later had a biochemical recurrence. The patients recieved radiation combined with 4 months of casodex and 24 months of Lupron. The study showed a 16% increase increase in survival over a 10 years. The rad doctor wanted me to participate in a new study where I would take both the lupron and casodex with radiation. There were 2 other groups in the study; one taking Casodex with rad or rad alone. Since my pca appears to be slow growing at this time I will most likely opt for the second group of Casodex with radiation. There are some UK studies that show evidence of Casodex with radiation is "better" than radiation alone.
Thanks again for your info,
Bitittle - Can you please clarify the Decipher test result of 25%. I had the test and received a value between 0 and 1 that they then assign to a low/avg/high risk category. Thanks.
The way MD Anderson as well as UCSF explained the results was as a percentage. UCSF said the average decipher test result was 9%. My result was 25%. The % is the likelihood of metastasis occurring in 5 years after prostatectomy with a 3 year psa rise(psa rise defined as biochemically recurrent). The doctors then clarified with a 25% result I am in the high risk group. I never recieved a number between 0 and 1 as you had referenced. Hopes this helps.
Thanks Bill, appreciate the additional info. I received a score (mine was 0.53), a 5-year metastasis % and a 10-year mortality %. My 5-year metastasis % was 6.3%, which I found surprising given that I had a positive lymph node and a tertiary 5 component to my 3+4 Gleason score.
My surgery was back in 2012. I hit biochemical recurrence some time ago, but am holding off on any treatment (other than Metformin) and just monitoring my PSADT with guidance of my med onc and surgical oncologist.
What you said is confusing because a positive lymph node is a metastasis in the lymph node.
Joel, you are correct. So either the GenomeDx definition of metastasis is a 'distant' metastasis or that particular metric of the test result is meaningless in my case. Probably the latter. Cancer was clearly outside my prostate at the time of my surgery in 2012. All I can say is that the form I received back has the Lymphovascular Invasion box checked and lists the 5-year metastasis result at 6%. I will ask for more info at my next appt with med onc in mid-July. Thanks.
I had the Decipher test as well post surgery. I have the written copy of my results. The way it describes the results is as Jim K described, percent likelihood of 5-year metastasis and of 10-year cancer specific mortality. My urologist used the term "recurrence" when he talked about the 5-year metastasis number. Mine was higher then others on here, 41.8% with 21% 10-year mortality.
Have not heard of this test. Is it something one does when 1st diagnosed?
The test was done after my prostatectomy. You need to have a representative sample from the prostate.
This test can either be done with tissue samples from the biopsy before surgery, or it can be done post-surgery with samples from the tumor. In both cases, the general idea is to gauge how likely recurrence is to happen and whether or not further treatment is advised. It's a pretty new test.
When you speak with the doc please let us know what you learn.
The 28 months of Lupron seems excessive and I believe recent studies have shown that 12 to 18 months results in similar OS stats. A fitness guru like you should have little trouble with ADT side effects. Keep this in mind -- I've often heard that whatever level of incontinence you have before RT will be "locked in" post RT.
Thank you StarlighterLen and all others who have replied! This forum is a great group of guys so willing to share information!
My urologist set my expectations at 36 months of Lupron injections. I'm not sure how they determine how long you will need that treatment. It sounds to me like others online have been on Lupron for far longer.
cfrees1 -- Yes, it's true that if you continue to progress with increasing PSA, you will be kept on some form of ADT forever, but I was referring to those whose PSA is stable, post-RT. Because of cumulative side effects of ADT (especially, heart disease), most med-oncs will want you off therapy after 18 months if you have no radiographic progression or your PSA is not rising.
I have made my decision to proceed with salvage radiation only no casodex or lupron at this time. I start radiation tomorrow with 35 treatments at UCSF. I read countless research studies concerning ADT and salvage radiation. There is no information demonstrating an overall survival benefit of combined therapy's for a guy with an undetectable psa after RP and a slow rise to a detectable level over 3 years. Still not at a BCR level. I am jumping on the radiation early and feel confident I am making the right decision. I firmly believe my diet choices, exercise, meditation and faith have helped curb a faster rise in psa. Actually there are studies that show salvage radiation alone has a chance to cure the disease at low levels of a psa rise.
I know there are many guys who may not agree with my choice but you have to be comfortable with the choices you make. I am not willing to "overtreat" and compromise other important body systems necessary to fight this disease. If my psa does not return to an undetectable level I will start the ADT. I have no other choice. There may come a time when I have to take more risk in my choices for treatment but I am not willing to go there yet.
I guess I am the opposite of you I am not sold on radiation because it limits my future treatment options and thus just not sure about it.
I was diagnosed in 2014 given standard treatment options surgery or radiations. Did not like either so changed diet, tried high dose Vit C via IV, hyperbaric then settled on Focal Laser Ablation with Dr Sperling.
In May 2018 I did an MRI guided biopsy which disclosed an aggressive reoccurrence Gleason 10, however .no Mets has not spread to bone or soft tissue.
Since being diagnosed I having been taking Casodex for 2 months and Metformin. PSA has dropped from 7.5 to 3.2. I will be taking my first Lupron injection tomorrow.
I have had no serious side affects with Casodex. I am taking 50mg once a day. Felt a little tired and some joint pain but moving around eliminates that.your being very active should give you positive outcomes.
I have also started RSO- Rick Simpson Oil and will follow the 90 day protocol. There have been some extremely good outcomes with RSO. RSO sure helped with my sleep managing full nights sleep.
I wish you the very best.