Diagnosis with prostate cancer, where to go now in this moment !
Hello , All new to this I was diagnosed prostate cancer a few months ago after having a PSA test at 20.1 3 yrs before that PSA 4.5 in 2023. what a shock was that never in my family's history was no prostate cancer. I went through an MRI which didn't show much then came outpatient surgery for biopsy that came back 6 spots on my prostate. Gleason score 3+4=7 . Had to get after that an PET test to see if the cancer spread outside my prostate but no it didn't. My Urologist had two options for me Radiation or Surgery and at this time I find myself in a bind. Any advice ?
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Very sorry to hear your diagnosis but by viewing this site, previous comments and advice that you will receive you will see that your initial diagnosis of a Gleason 7 (3+4) appears favorable. One thing that you will be encouraged to share is your detailed biopsy results as this will help guide many in their advice. Something that you did not mention is Decipher testing for determining the aggressiveness of the cancer. The comments will generally come in three groups, Radiation patients (multiple different types of Radiation protocols) that will take time to get a handle around that will certainly get explained to you. Surgery, less options but extremely important to understand the options and how they can affect possible side effects and quicker recovery time. What is important in the surgery realm, is the Surgeon’s expertise in how many he has done. If your Urologist says he can do the Surgery I would certainly be hesitant as he probably does not have the experience of the number of procedures that you need as he is more likely a jack of all trades(different surgeries) in the urology surgical world. The third area is possibly Active Surveillance. You will likely be asked to share some personal information like age and part of the country that you reside. Age is important in treatment consideration’s and where you live possible referrals to major cancer centers and experienced Radiation Oncologist’s and Surgeons in your area. You will be recommended to get second opinions regarding treatment approaches. I am a surgery case and highly recommend that you research Retzius sparing surgery or a similar procedure that does not cut the Puboprostatic ligament to the bladder. Most of the surgical techniques done by the majority of surgeons cut the ligament in a standard Robotic Assisted Laparoscopic Prostatectomy (RALP). It is important to know which actual procedure that you would possibly want to pursue if you go a surgical route to get referred to that surgeon. It is alot to digest and I could go on and on, but just getting your diagnosis you have time to gather information. Best if luck
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6 ReactionsWheel1 gave you a lot of information. A little more. Given how fast the PSA has risen to over 20 and the 6 positive cores found it seems your disease is too aggressive for Active Surveillance even though that can usually be done for a 3+4 Gleason. Also, because of this you probably want specialists at a center of excellence to provide the treatment if you are not already at one. There are also no good choices for treatment to minimize side effects. You will need to pick the best one that meets your goals. Both RP and RT have about the same long term cancer suppression rate. Provide all biopsy information: Percentage of type 4, how many cores had type 4; was cribriform or other conditions noted by the pathologist? You will be able to get through this. Treated early prostate cancer has a 98% 15-year survival rate for 3+4.
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8 ReactionsAP34426, sorry for the diagnosis, but you are actually in a pretty good position for someone with prostate cancer. You don't have to fret over active surveillance and both radiation and surgery are most often successful.
Now is the time to consult with the oncologists. You'll best see a Medical, a Surgical and a Radiation oncologist.
Be sure and check out the MRI guided five fraction (session) radiation treatment, which my outside guess is the best with gleason 7, but without knowing answers to the questions Jim18 asks or your personal preferences.
Tell the urologist that you want somatic testing. Many here used Decipher, but you might want to check out myriad.com/urology/blog/understanding-the-benefits-of-both-germline-and-somatic-testing-in-prostate-cancer-care/ or Foundation One. The doctor just sends your biopsy sample to the lab. It takes a couple of weeks to find out the gene lines in your tumor.
It may tell you if you'd be advantaged by suppressing testosterone for a few months before treatment.
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6 ReactionsMost important!!!
You need to find can incredible surgeon, Radiation Oncologist, and treatment center.
Where are you located?
You will need to study options and obtain as much auxiliary information as possible.
Some items
1. Decipher test
2. Prostox test for predicting possible future urinary toxicity from radiation treatments.
3. Genetic test to determine if you have inherited factors
4. Outside review of your biopsy pathology
Join the low-intermediate group meetings at Ancan
Your age and health will be factors in any treatment decisions.
Best wishes.
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4 ReactionsLike you, I had 3+4 Gleason. I specifically chose an Mri guided Radiation machine called the Mridian, but there is also another one called the Elekta unity. I had five fractional treatments and finished in February 2023. Every body is different, but my focus was on quality of life and side effects and so far my side effects have been minimal at worst. What they see in real time, they can treat. Also, if you do radiation, consider a spacer like spaceoar to separate you prostate from your rectum.
I agree with others about having the decipher test or something similar, as it is used by doctors to decide what their recommendations are, related to treatment. My decipher score was low.
I would also get a second, third and fourth opinion from doctors at centers of excellence via Telehealth zoom calls. All of the doctors are making educated guesses but generally, you get one choice for initial or final treatment. The outcomes may be the same, which is what most doctors tell you, but the quality of life and side effects are not always the same.
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2 Reactions(That PSA of 4.5 three years ago should’ve triggered looking into. Never know what that might’ve shown.)
As for never having any prostate cancer in your family history:
> (besides gender), the primary risk factor for prostate cancer is age. (How old are you?)
> do you have a family history of any type of solid tumor cancers (in men or women)?
Regarding the MRI:
> does the MRI report indicate any PIRADS scores?
Regarding your 3+4=7 —> of all possible Gleason scores - 6(3+3), 7(3+4), 7(4+3), 8(4+4), 8(3+5), 8(5+3), 9(4+5), 9(5+4), or 10(5+5) - your 7(3+4) is the second lowest. It’s easily treatable. No need to be in a bind. You’re in a good place and have time to look into this. You’ll be around for a long time.
> of the spots that came up a 3+4=7, what was the % of “4” in each of those samples?
Regarding your PSMA PET scan:
> did anything “light up” at all?
There are always “at least two options.” This is when you have to:
> do research, get additional tests, and understand the Grade and nuances of your prostate cancer.
> ask your urologist questions about treatment options and side-effects.
> ask your urologist for referrals to specialists in other treatment modalities.
> ask each of them questions about treatment options and side-effects.
> understand that each cancer is different; the treatment that might be right for one person isn’t necessarily the right treatment for you.
Also:
> get quarterly PSA tests until you have a treatment plan figured out.
> ask for a biomarker (genomic) test
> ask for a genetic (germline) test
> ask for an ArteraAI Prostate Cancer test
> and perhaps even ask for 2nd opinions on both your MRI image and biopsy tissues; it’s interesting that the MRI “didn’t show much” (whatever that means), but the biopsy found 6 cancerous lesions.
In a few months you’ll have this all figured out.
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4 ReactionsSo sorry for your diagnosis.
The first place to go is whatever you need to do to process this, both alone and with family & friends.
When you feel ready, the next step is to remind yourself of what you're reading from others in this thread: Gleason 3+4=7 is the absolute lowest score that even counts as prostate cancer these days, and if there aren't other concerns like genetic risks, major trials are increasingly showing that in many cases it's just as safe to monitor it ("active surveillance") as to do any medical intervention at this point.
That's not to try to trivialise what you're going through. A cancer diagnosis is a huge, life-changing shock, and it takes time to process it. But I hope it will help dispel any cloud of doom you might be experiencing.
Best of luck!
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3 ReactionsWere the 6 spots lesions? Any mention of EPE? All the best. I’m a few steps behind. Facing my biopsy Thursday. 4 lesions in the peripheral zone, an enlarged prostate 84.4ml, PSA 8.8 and indeterminate EPE.
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2 ReactionsMy husband chose to have his prostate robotically removed by Dr Ward at MD Anderson last June.
All nerves were “spared”. Advil was all he needed after surgery.
He reports that the 10 day catheter was no picnic.
He’s grateful and thriving.
You can self referral yourself.
Museum District Marriott shuttles to and from MDAnderson. Hope this helps.
Just prayed to Jesus for you. Prayed He give you discernment making decisions and full health.
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4 ReactionsAP31126 - Getting the initial diagnosis of prostate cancer is definitely a shock and something most of us never thought we would hear. For myself, the research I did helped me understand my situation and the fact that there are now so many treatment options. I was diagnosed with Gleason Score 7 (4+3) prostate cancer in 2022 (56 years old, healthy, good physical shape). I did a lot of research and ultimately decided on a robotic prostatectomy at a center of excellence (Mayo-Rochester, MN). There are so many opinions surrounding treatment plans, but for me, I focused on the data, common sense, and my life goals. My main goal was to live 30+ additional years prostate cancer free, and be available to my wife, son, parents, siblings, etc... I didn't want to have any complications or side effects from the surgery but this was not an absolute need. In the end - There were no complications with my surgery and I have full continence and erectile function. I realize there is a 20% chance of biochemical reoccurrence, but thus far PSA is undetectable - Praying this will be the case for many years to come. There are so many horror stories out there surrounding radical prostatectomies, but based on my research and personal experience, the outcome you have is directly related to your up-front research in choosing the best possible center of excellence and the most qualified surgeon at that center of excellence. I did not want the department head, best author, best instructor - Rather, I wanted the best surgeon that had done thousands of successful radical prostatectomies (Dr. Igor Frank - Mayo Rochester). Then, you must do the post operation therapy that is prescribed.
There are so many treatment plans out there and you need to pick the one that best aligns with your personal life expectations. If people tell you there is only one option, you probably want to ignore their opinion. For myself, I would definitely recommend a robotically assisted radical prostatectomy at a center of excellence. However, this is based on my person life expectations and experiences.
Good luck with your decision!!
Jim
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