Living with Prostate Cancer: Meet others & introduce yourself

https://www.abc27.com/local-news/gettysburg-doctor-patient-first-in-the-world-to-try-new-cancer-treatment/

I am stage 4 prostate cancer survivor 20 months on this journey. "Learning How To Live With Cancer" is transformational. The first 14 months from diagnosis to radiation, chemo, hormone therapy were painful and emotionally devastating. My normal daily thought patterns included tension, anxiety, depression, and suicidal thoughts. No way to live. I'd address this with my Oncologist and he'd respond with "Your sick, very sick, you can never be cured only treated." Then it happened.

Our prostate cancer community is wonderful. One of my prostate cancer buddies suggested getting a second option from a teaching hospital. I did. It worked great. I shifted my care to them. My new oncologist suggested I hire a wellness coach with experience working with cancer clients. I found one and within a few sessions my life's turned around. We've worked really hard at transforming my mind to "Learning How To Live With Cancer."

My daily routine now includes lots of exercise, eating smarter, enjoying friends/family, lots of reading, mediating, and appreciating the moment we are living in.

My husband was diagnosed in DSM, Iowa with prostate cancer about 3 weeks ago. He had a PSMA and it showed the cancer has spread to one lymph node right by the prostate. And he has a Gleason score of 9 (4+5). We have an appointment at Mayo Rochester on Tuesday, Sept 6th with a urologist. My question is when do an oncologist and radiologist get involved with the direction of his care. DSM recommended removal followed by radiation. Thanks

Mayo should include a radiologist in your visit to Rochester. That individual should discuss the radiological treatment plan - what is the total dose, how many treatments, whether to include the entire PLNs and how how high the treatment field they recommend, boost and margins around the lymph node identified...

Others may have different thoughts about including an oncologist at this point since it is advanced PCa. In my journey, I didn't bring an oncologist onto the medical team until it was time to include chemotherapy. I felt my urologists were more than capable of handling the ADT portion of my treatment.

Kevin

Your husband's journey is similar to mine back in 2019. My pathology report following my radical prostatectomy indicated a Gleason score of 9, and I was diagnosed with T3b-N1 level cancer. Immediately following my surgery, my surgeon at Mayo Clinic, Rochester, put me on Lupron for 24 months, and once I dealt with my incontinence, I underwent adjuvant radiation. All along my journey at Mayo, the Urology team members were in communication and my treatment moved forward very quickly. My surgeon is still my "quarterback" for my care, but I also meet annually with my radiation oncologist, which will be the case for the five years following my radiation treatments, which were in 2020. The good news is that my PSA levels have been undetectable for three years.

You need consultation from all inputs. Then, with that information, you make your choice of treatment. If surgery then no immediate need for radiology. If radiology then no need for surgical advisement. You now have a decision to make and you need all the input you can gather.

I had/have a Gleason 10. I opted for Proton Beam, 1) for it's pinpoint accuracy and 2) to eliminate the trauma of surgery. The Proton Beam is totally painless, you feel nothing at all. You lay down, get prepped, get treated, get up and walk out in about 15 min. What's not to like?? With Proton Beam the cancer in prostate and lymph node should be accurately targeted and dealt with. If I recall I had 28 treatments.

I still now have a prostate gland. Granted it's been thoroughly radiated, but it's still there.
Be careful, take your time!! Good luck with your decision.

How long ago was your treatment? Was it just in lymph node? And prostate?

My treatment finished Thanksgiving 2021. I gave thanks!

No lymph node treatment, just prostate and seminal vesicles. As of today there is no detectable testosterone. I've been chemically castrated successfully and my prostate fried in place. Sweet huh?

Plan is to use Lupron for 2 years then assess and see what's going on and available. Lupron started June 2021. Lupron was initially used to curb tumor growth enabling Proton Beam to have maximum benefit. Looks like the plan is working. Hopefully somewhere down the road prostate tissue regeneration will take place and we'll build a new active prostate. Regeneration is currently used elsewhere. I'll also need seminal vesicle repair/replacement. No one has brought that up it's just on my wishlist.

I have been sent to an urologist by my family doctor in 2001, but after a superficial check, I went home happy that no issues were found.
An year after, I’ve been diagnosed with prostate cancer with a Glison score of 7. In February 2003 I had the prostatectomy and a glison score of 8. Six months after surgery I started radiation therapy for about 34 days.
Everything was fine after that for three years. Then I started the Lupron! Still doing it. Next year it will be 20 years! Unbelievable lucky 🍀!
But it’s not all. Five years ago my bladder started bleeding 🩸 and unbelievable pain and blood clots. Radiation! Now I have a Supra pubic catheter and the pain is on and off, depending on the nurse.

There is an operation that plugs up the bladder connect with prostate and gets you off catheter Two friends are fine now for 6+ years

I am back on Zolodex injections 3 months PSA 1.2