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My Boyfriend was diagnosed a few weeks ago with prostate cancer determined to be a Gleason score of 4. Considering the news we could have received, this didn't seem too bad. We agreed to continue with active surveillance and go from there. We also agreed to genome testing, hoping it would just be confirmation that the situation wasn't serious.
Fast forward to today and the results of the genome testing were not what we were hoping for. Until today, I thought we were fairly safe but according to the genome testing, apparently the cancer is a fairly aggressive form and now he has a 4.7% chance of passing away due to prostate cancer in the next 10 years.
To be honest, when the Dr. said 4.7% I thought that didn't sound too bad, but when he put it into the perspective of 1 in 20 I became considerably more concerned.
The Urologist is suggesting either surgery or radiation, neither of which is a great option considering the side effects. Yes, side affects are tolerable considering the potential alternative loss of life, but, how do we weigh the cost and benefit of both options when considering the Gleason number and new stats from the genome testing?
I am here looking for any insight, guidance suggestions, etc. that might help us make an informed decision. I know very little about prostate cancer, treatment protocols, etc., but I have begun my research. I know both surgery and radiation come with some fairly significant side effects, But, beyond that, how concerned do I need to be about this situation? Should I be balling my eyes out at this point, ready for a battle, or what? I don't have a baseline for my reaction to this situation. I generally avoid worrying about things I can't control, but this news has me quite concerned.
We are most likely going to get a 2nd and maybe even 3rd opinion in the hopes that might provide further information and guidance.
Let me be the 1st to welcome you to this website. You will find many ideas and suggestions going forward in dealing with this disease. Let me begin by saying that every guy's prostate cancer is different so it is important that you both do your own research and decide what is best for you both.
If you could tell us a bit more about the situation, we could give more worthwhile suggestions. First, as you know prostate cancer is normally a very slow growing cancer, so a patient's age is a big factor in deciding treatment. For example a man in his late 70's probably would elect a different treatment than if he was in his late 50's. Second, I'm a bit confused about your Gleason score of "4." A Gleason score normally consists of two scores added together. The 1st number represents the grade of the dominant grade of cancer cells found in the biopsy. The 2nd number represents the grade of the secondary number of cells. Prostate cancer cells are generally graded 3 through 5 with 3 being the least malignant and 5 being the most. Therefore a cancer with a grade of 6 (3+3) might be a good candidate for active surveillance, while a 8 (4+4) or 9 (4+5) would, probably indicate treatment of some form is indicated. Also important is the number of biopsy cores actually showed cancer. 9 cores out of 12 is much worse than 1 or 2 cores out of 12, regardless of the Gleason grade.
Genome testing is a new or at least fairly uncommon test as it relates to prostate cancer and during the 10 years I have been reading this site I have never heard it ever mentioned.
The one suggestion I can give you, is stop and take a deep breath. Now exhale. First thing you need to decide is based on age and Gleason score, is treatment really necessary? There are side effects to all treatments. Make sure you understand them. Ten years ago, when I was first diagnosed common thought was if you were less than 85 you needed to choose either surgery or some from of radiation or you were basically committing suicide. Reading articles on prostate cancer today, based on one's age, active surveillance might be the best choice for a great number of men. Do your homework. Talk to people. Join a local prostate cancer support group.
And post your questions and concerns on this website. We look forward relating any insights we might have.
A little more info - my Boyfriend is 68 and healthy, active and fit and has no other health conditions.
I would think being 68 is probably about the borderline for active surveillance vs surgery or radiation. He's not really young but not really old either. So.....
Regarding the Gleason score - While doing a little research yesterday, I noticed there is no Gleason score of "4" and that the Gleason score has 2 numbers. I know the Dr. (Urologist) only gave us the "4" during the initial consultation.
This morning I requested my Boyfriend's medical records from the Drs. office so I can review and verify everything and potentially consult with other Drs. They all have their own opinions on the course of treatment. And, having medical records in hand should clear up the Gleason score question.
I told my Boyfriend last night that the original plan was active surveillance, prior to the genome testing. If we hadn't had the genome testing then that's the approach we would be taking, so let's just go with that for now. He will be coming back here to Colorado Springs at the end of May so we will get another PSA and depending on the results, we will proceed from there.
Finally, just because the standard treatment/recommendation is surgery and radiation, doesn't mean they are the only realistic or practical options. I am searching for and researching other possible options.
I will post again after I get his medical records and/or the next PSA test
I agree with Joe that it is difficult to provide meaningful information based on very little medical data. Do your research and read as many PCa patient histories as you can. You will soon get the gist of the salient factors to relate, in order to receive relevant advice. Whilst this site is a bit of a PCa relic, it's heyday was long ago, thus whilst valuable from a historical perspective, it relevance to current PCa treatment modalities is somewhat limited. May I re-direct you to the UK Prostate Cancer Community which is very active, valuable, and up to date. The website link is here https://prostatecanceruk.org/ Do join, post your boyfriend's story, and a steady flow of valuable information will be forthcoming. Just remember to layout "all" the medical data related to your boyfriend's case.
Thank you so much John!!!
I realize every PCa cancer situation is unique and I'm not looking for someone to tell us how to proceed; just thoughts and suggestions on what to do and where to go for more information.
I also stumbled upon this website in March, when my husband of 32 years biopsy results came back. It is really helpful and I have perused all sections of it, so thank you to the originals and those keeping it alive. I somewhere was referred to a book that has been around awhile, Dr Patrick Walsh's guide to surviving Prostate Cancer, and found it very neutral and invaluable in educating us (my husband's not much of a reader) on this journey. He will be having a RP in a few weeks.