Would appreciate Your Thoughts - Advanced Prostate...

Advanced Prostate Cancer

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Would appreciate Your Thoughts

DFL208 profile image
15 Replies

I had a robotic prostatectomy in January, 2019. My highest psa prior to surgery was 9.0. The biopsy showed Gleason 9. The preoperative MRI and bone scan did not identify any lymph node or bone involvement. The post surgical pathology showed Gleason 9, seminal vesicle invasion, EPE and 3 positive lymph nodes. I was put on Lupron shortly after surgery. Foundation One found no mutations. My PSA a month after surgery on Lupron was <.1 as well as a subsequent PSA in May. I had 37 sessions of radiation to the pelvis and lymph nodes May-July 2019. I just has an ultra sensitive PSA and it was <.01 with testosterone of <7. The plan is when my PSA reaches .2 I will go on Xtandi.

My question is, in many of the excellent posts on this forum it appears the MO is being very aggressive and customizing treatment to a specific patient . My treatment is more "by the "book". If I went to one of the major cancer centers is there something more they would be doing at this time? Thank you.

15 Replies
Tall_Allen profile image

It looks good to me. You may want to continue Lupron for 2 years.

Most Doctors go by the book ,in fact they throw the dam book at us . It’s up to you to eat well exercise and find peace in the madness . Good luck .

j-o-h-n profile image

Charging you....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/13/2019 7:21 PM DST

Break60 profile image

You’re on a good track. Keep it up.

rscic profile image

I am going to assume you live in the USA, as I do, so the following comments are with that in mind.

Go to a Major Cancer Center and find out if there is something more that would be done .... 2nd opinion.

When you get to .1 to .2 PSA you are likely to be eligible for a PSMA study. With seminal Vesicle invasion you are at a higher risk for metastasis (often bone mets). Your MRI for bone mets is clear but PSMA might be more sensitive (I am unsure ... I know it is more sensitine than a Bone Scan or Axumin PET) and if there are any mets present it might change treatment approach.

Your best chance for a cure, or if not a cure then longest life extension, is with your 1st round of treatment when you have the smallest disease volume.

See page 34 of the following publication for sites I know of that are working with PSMA :


One of these sites might be a good one to get your 2nd opinion .... should you opt to get one.

Good Luck .... we ALL need that part,


CalBear74 profile image

Rick is right about the second opinion. The Gold Standard in second opinions is Dr. Jonathan Epstein of Johns Hopkins. He is a leading U.S. pathologist. You may also want to see a medical oncologist at Hopkins for a second opinion on your care plan.

in reply to CalBear74

I second this...and add that the Oncoligist to see at Hopkins is Dr. Emmanuel Antonarakis...He works with Dr. Epstein and the pair are cutting edge.

I don’t think so .. The plan is valid .. Live healthy and live longer ..

User8 profile image

I have no experience in your treatment program and have no formal education in biology but do understand how worrying your condition could be.

I have had a radical prostatectomy with a residual PSA of .42. I then took various doses of CBD and THC cannabis having read a clinical report of the biochemical chain reaction that results in the death of prostate cancer cells. The term used was apoptosis.

After about seven months the PSA had risen to 0.64. I understood this in alternative medicine terms to be a "healing crisis". I was not aware of the medical term "flare" at that time but understood how the cancer cells could be retaliating against the attack by the cannabis by producing increasing amounts of the antigen which is used as a marker of cancer cell activity.

Without knowing whether the increase was a spike or a trend, I chose to have hormone treatment with Zoladex LA, concurrent external radiation and cannabis oils taken sub-lingually.

I deeply regret the absence of research into the medical efficacy of cannabis as a direct treatment or cure option. Nevertheless I have found the cannabis not only mitigates the undesirable side effects of radiation and hormone therapies but provides me with beneficial side effects of its own. I have sense of well-being, am physically active and focussed on making the very best of my remaining years.

People tell me I am am amazing and inspiring but I realize I am fortunate compared to others who have co-morbidity and/or more aggressive forms of cancer.

And to think this might never have happened had it not been for cancer!

I hope my story can be of help to you.

User8 profile image

Forgot to mention my PSA is now .02.

gamemaster34 profile image

My story is very similar to yours. The only thing different is that my mo has me on zytiga and prednisone.

DFL208 profile image
DFL208 in reply to gamemaster34

Did your MO put you on Zytiga and prednisone before your psa got above .1?

gamemaster34 profile image
gamemaster34 in reply to DFL208

Yes, I have been taking for 3 months.

tallguy2 profile image

Everything sounds right to me, too. Good luck!

The only other suggestion is to get a second opinion from a major research cancer center. I did this and was put on hold with that center until my situation worsens. This is OK with me. Good to have two excellent specialists watching your back.

Timmer1967 profile image

My situation is almost identical to yours including the treatment plan. Mayo Clinic in Rochester is who I am going to. I think you are on a good plan. Add exercise, nutrition, low stress and good sleep plus prayer and you will be doing all that you can in my opinion. Best Regards.

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