Gleason 10 - Further treatment options after first PSA confused

Hi I am confused with docs opinions and need your advise whats best for me now.

I had surgery on 04/11/2016 and catheter removed on 14/11/2016 and the same day I had my pathology report which shows gleason 5+5 and positive margins, 1 in 21 lymph nodes positive and seminal vessels positive. And final grade pt3b n1 mx.

My current surgeon team which includes surgeons, oncologists and radio oncos suggest that wait for 4 weeks for 1st psa and then 8 weeks for the next and then to decide based on the psa values whats the treatment plan. However they did mention radiation is must in my case and all they are trying to figure out is when is the right time???.

I’ve been for 2nd and 3rd opinions with medical and radiation oncologist and both agreed that radiation should start straight away after 6 weeks (for recovery)based on high gleason.

Now I’ve decision to make as my current team knows what they are dealing with, they are experienced as well, however my opinions/forum readings suggest to take next course of action and leave my old team.

I am not ready for the radiation yet and need another few weeks before I can think of any further treatment as this will give me time to recover.

One of my friends also told me to try RSO – CBD oil. Any opinions???? should I give a go? any benefits.

I would like your opinion based on your experience as you all are being so helpful.

Thanks.










Nov 2015 – Urination issue prescribed urimax for next few months
Jan2016 – Postarate size 28gm
Jul2016 – After taking urimax urination still persist
Jul-2016 – PSA 6.9 doc advised to wait for 8 weeks and retest
Aug-2016 PSA 12.44
--MRI DCE No enhancement ‘heterogeneous signal in peripheral zone’(report attached)
Sep2016 – trus biopsy 12 cores (I’ve attached the report copy as well) 30% area.
Gleason score 5+4.
Sep-2016 Bone scan – As per the radiologist scan is negative
Sep-2016 FDG PET CT Scan negative.
Da-vinci date – 04-Nov-2016
Catheter out – 14-nov-2016
Final Pathology – pt3b n1 mx.
!!!!!!!!!!!!!Waiting to decide whats next!!!!!!!!!!!!!!!!!!!!!

Jack, Ok, you had surgery back in April. That's 7 months ago. What is your PSA doing since the surgery? I assume you've had a couple of readings. Please do share with us where you're located, and where you're getting treated. Yeah, it does sound like both RT/HT is in your future. Have you had any scans since surgery to see where the mets might be hiding?

Hi Jack 1954,

Very sorry to that you find yourself here but the guys here on this site are great and have a ton more knowledge than me. As far as I can surmise, when a Doctor recommends salvage radiation after surgery, the belief and hope is that the disease is still regional (has not spread to distant sites) and there is hope for a cure. That was the plan for me if my PSA rose after surgery but it ended up that my medical provider would not approve salvage radiation stating that my disease is systemic.

If your disease is regional, it is quite possible that you could knock the rest of the Pca out of your body and live a long and happy life disease free. However, my understanding is that salvage radiation has the possibility of some severe side effects and this is what you want to discuss with your medical team. I wish I could add more to this but don't want to influence your decision any more than I already have. Making a treatment decision should be personal and based upon what your overall health is combined with your quality of life goals. Wishing you all the best.

Hi jack1954 -

Welcome to our community. Sorry you need to be here, but glad you found us!

We have a thread that has run a long time now for those with high risk cases, the G9 Crew. We have only a few with the G10 score, and since the risk profile is so similar we include them as well. Here's a link to the thread, and I've taken the liberty of adding you to it. Welcome to the least popular chapter of the club no one wants to join!
www.healingwell.com/community/default.aspx?f=35&m=3182035

Anyway, I initiated that thread and its predecessor to provide a gathering place for those facing these serious situations. Our interests tend to be unique, often seeking advanced treatment options. If you peruse the thread, you'll find others with such diagnoses, most still doing pretty well. You may find the decision processes used by others to be helpful, too.

Please stay with us. We're here for questions, options, concerns, venting, whatever.

Jack,

Congratulations on getting past your surgery and please take some time to feel that you've made significant progress in your treatment. Perhaps they wish for your tissue to heal and get some more data before going forward with any additional treatment.

I am 4 years post-RP now and I think that sometimes physicians understate that PCa treatment is a long journey that lasts the remainder of our lifetime. When I first met with my physician after diagnosis he talked about "steps". Those steps keep going on and on and the emotions that accompany treatments are mixed with uncertainty, grief and hopefulness and faith. My father died at age 84 this last year after PCa treatment beginning at age 74 and T4 disease. At age 76 a scan revealed that the cancer had spread to his bones and that he had only 6 months to live. He began HRT and lived another 7 years most which time he had a normal life. He vacationed up north and then came home just a couple of months before he died. I miss him he was a man of great tenacity and an example of the capabilities that God provides the human spirit with which to live.

I am sorry that it seems like you are in limbo and waiting. Hopefully the wait won't be too long. In any case, please reward yourself for getting through your RP and please take stock of the good things you enjoy in life and continue to love the people around you. There is hope no matter what the test results say.

Rust