Recently Diagnosed PC

Posted by oskarpr @oskarpr, Mar 15 2:10pm

59 yrs old with BPH, Taking Finasteride 5mg, active, Diagnosed with PC two weeks ago. Lesson 1.6cm right side, PI-RAD 5,
Acinar Adenocarcinoma, GS3+4=7.
Urologist send referral to different doctors to find out about treatments. During appointment he explained all the alternatives. He did not recommended surveillance, and in favor of radical prostatectomy. First appointment next week with Radiation Oncologist, who do
Cyber Knife. Currently reading about All possible treatment, will love to hear the after-day to day experience for the different treatment options, this will greatly influence by treatment decision.
Appreciate any comments, suggestions or information.
Thanks
Oscar-Florida

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@jc76

@oskarpr
Don't want to say welcome but you came to right forum for information. Most of us now have gone through the anxiety of picking what is best for us, getting the treatments, and now recovery.

As I have posted many times it is best to do your own research, then get second opinions from experts in fields. Regardless of which option you chose I would suggest getting a PSAMA, bone scan, and Decipher test. These test will fine tune your diagnosis and help you and your provider the best treatment for you.

I am 76, with heart failure but no restrictions. I did first consultation at Mayo Jacksonville and then second at UFPTI. I also had a bone scan, PSMA, and Decipher test done. All these tests helped me and my provider decide the best treatment for me. I chose 30 rounds of Pencil Beam Proton Radiation. MY PCP and I wanted to have the best chance of keeping damage to tissues and organs.

If you are conteplating RP then these radiation option are not a factor. But please for your sake get second opinions on your diagnosis and treatment options. RP is just what it says Radical Prostrate Surgery and for some good option and for others radiation only, or radiation and hormone treatment. I comes down to what is best for you not what is best for me or others.

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Appreciate your advice., Jc
I will keep you posted
Oscar

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@pjw2

Sorry to hear Oskar about your diagnosis. I am 53 yrs old and had my radical prostatectomy on the 29th of Jan this year, so just about 7 weeks post op at the moment. I only had about 2 weeks between biopsy results and surgery and joined this group in that stub period - you have come to the right place, I have learned much from others whom have walked down a similar path.

You must of course do your own research and determine what is best for you and your family. As for my story, I chose to have the surgery in part due to the suggestion from my Urologist, and second as my Father had the same surgery 19 years before I did. He of course strongly influenced my decision in that he had cancer return around 9 years post op and went through Radiation, and has been with us for 11 years subsequent to radiation and counting. I was keen on the fact that if/when cancer returns post RP surgery that radiation remained an option to again fight off this disease.

As I am sure most would agree, we all have gone through a variety of emotions as we come to grips with our individual situations. I am no different and as I sit here typing this note have been confirmed that there was no cancer found outside of the prostate and expect / hope that future blood work proves this to be true. Unlike the rest of my life, I took the time to slowly recover from the surgery and followed the physicians advice on caring for myself and preparing for the side effects of the surgery. At this time I suffer from periodic stress incontinence, but I am extremely hopeful that this will alleviate in time. Other than that, I feel pretty darn good and have started to get back into eating well and exercising regularly. Where 2 months ago I was very worried, today I am full of hope and optimism for the future.

I wish you good health and happiness in whatever decision you arrive at, and again, please do ask any questions you may have of this group, it is an awesome community! Take care.

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Thanks pjw wish you the best on your recovery, this support group is helping me a lot, already.

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@handera

Oscar,

You in the right place to get the full range of experiences and to learn what were the drivers leading to individual treatment decisions. Ultimately only you can decide if and how anything you learn from us applies to your situation.

The first thing I learned with my 3+4=7 Gleason pathology report was that there was no reason for me to rush into ANY treatment decision….that I had time to do my own research. IMO if anyone (doctors included) are rushing you to make a treatment decision…I would consider that a “red flag” and a clear indication that you need a 2nd and even 3rd opinion. This is probably the hardest thing to get clear in one’s head, because we have all been trained to basically freak out when we hear the word cancer.

Towards this end I have attached a study that involved >8500 men with PCa and their 10 year outcomes after making various treatment decisions AND a list of the side effects they were experiencing one year after they had their selected treatment. Of course, the percentages reported will not necessarily define your individual response, but they are helpful when attempting to COMPARE treatment options according to the average response found in a large population of PCa patients.

There has been some excellent advise already written, so I won’t repeat.

My doctor and I decided on active surveillance (AS) after obtaining a 0.22 Decipher score (low risk) and coupling it with the information in my pathology report.

AS simply means I am waiting to see how things progress before make any irreversible treatment decision.

I decided to practice “aggressive” AS and have lost 25 lbs (BMI is now 22.5) by implementing a whole plant food diet and a vigorous running exercise program. My PSA dropped 25% at my 3 month mark after diagnosis, so I’m continuing my AS program.

I am older (67), so you have the age difference to consider.

IMO after you get through the first decision (to give yourself enough time to do your research) the second most important decision is to have a Decipher test of one’s cancer cores to determine the aggressiveness of one’s particular cancer.

The Decipher Prostate Genomic Classifier has just received a Level 1B evidence rating, the highest rating among molecular tests. This test is independent of all other clinical factors and can significantly impact one’s treatment decision for those with 3+4=7 Gleason.
https://www.urologytimes.com/view/decipher-prostate-test-receives-high-evidence-rating-in-nccn-guidelines#

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Thank you handera, next week as mentioned previously I will have an appointment to see a Radiation Oncologist to discuss
treatment option, also my urologist ordered a genetic test
but don’t know the details.
I will contact the office on Monday to find out more, right now I am reading information on radiation treatments, and for sure will have “laundry list “ of questions to ask.
Oscar

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With a 3+4=7 you can consider Active Surveillance watch the many you tube videos from Dr. Sholtz from the Prostate Cancer Research Institute, I have a 4+3=7 which is unfavorable Intermediate, the medical community is geared towards TREATMENT don't be in any rush, I had the PSMA PET which showed mine was contained to the prostate, and my Decipher score was 0.38 in the Low Risk for metastasis category. My PSA is 6.62 I'm 70 years old, the Parametric MRI I had showed 1.2 cm lesion, my prostate is 50.4 cc so very low volume, my PSA density .13
I have researched all the treatments, met with surgeon & urologist at Mayo, meeting next week with Radiation Oncologist. All treatments I have researched have serious side effects, including Hifu, Brachytherapy, Tulsa Pro etc. Look at the ProtecT study, 1600 men with Intermediate risk PCa 1/3rd had surgery, 1/3 rd had radiation and 1/3rd Active Surveillance, no difference in mortality after 15 years. I am seriously considering AS even with my 4+3=7 Even if the serious side effects of ED and Incontinence are 10-20% I will not take that chance of destroying the quality of my life

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In March '22, I got my diagnosis. My Urologist gave me names of a Radiation Oncologist and of a surgeon; I spoke with both.

I read the highlighted section of Dr Walsh's book, then read the entire chapter if it seemed to pertain with me.

I had a PSMA scan that showed the cancer was fully inside the prostate. Good news!

I did lots of research at reputable websites, like Mayo Clinic, Johns Hopkins and others, and put all these articles into a notebook, which i carried to all my appointments for referral when necessary.

I did read that, after surgery, radiation is still a viable treatment option. But, after radiation, surgery is not such a great option.

I did have one Lupron injection, and this caused the dreaded and miserable Hot Flashes. I found an article concerning a man my age, with Hot Flashes, who took Venlafaxine 37.5 mg twice a day to relieve those symptoms. My PCP switched my anti-depressant to this med.

Pelvic Floor Physical Therapy was recommended to me. I did several weeks of this PT prior to my surgery, and more after the catheter was removed.

I opted for the RALP, In one day and home the next. I had NO PAIN! My surgeon recommended Tylenol or Ibuprofen if I hurt somewhere.

I was COMPLETELY CONTINENT! My PT lady was working with two men who, about 4-6 months after their surgeries, were still not continent.

Now, 18 months after my surgery, I am feeling great and my PSA is undetectable.

Through all this, you can feel run-down and lethargic. You must power through this. Go walking, then go running if that's your habit.

But, you have come to this forum where many are happy to share our experiences as you begin the same journey that we have taken.

Be positive, be strong!

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