Looking to be aggressive, but in the right way?

I was dx in Feb, 2016 with advanced pca with a gleason score of 8 and PSA 8.8. My left seminal vesicle was invaded, along with 2 bone mets (femur and hip), and suspected pelvic nodal involvement with two nodes being affected (both approximately one centimeter each). I began treatment March with Casodex and a three month Lupron injection, and in August, replaced the Casodex with Abiraterone (1000 mg daily) to go with my three month Lupron injections. My PSA and Testosterone levels immediately dropped after my initial Lupron treatment and my PSA and testosterone have been undetectable since June 2016. Tumor analysis shows I have TP53 and TMPRSS 2 mutations. I found a surgeon who will do an RP in addition to my current ADT, and am wondering if anyone else with with stage 4, D2 PCA has either gone through this procedure, when standard of care just wants to treat with ADT, and possibly chemo? It seems, and I have read, that the oldest and concentrated cells are in the prostate and just by removing those, it could more effective in fighting this battle. I also forgot to mention that I would plan on having the lymph nodes removed, or radiated along with the bone mets as part of the program. I would so much appreciate any advice from anyone out there and I wish you all a Happy, and pca butt kicking new year!

25 Replies

  • I was Stage 4D1. Had to fight to get the surgery. Glad I did. Recent studies have shown that even with 4D2 there is long term survival associated with removing the primary cancer generator. Everyone is different but if I had 4D2 I would push for surgery.

  • Dr_WHO, thank you for sharing your personal experience and thoughts. There seems to be so much controversy on this subject and the it seems so easy for the onco to just provide ADT and nothing else. Thanks very much again!

  • On ADT, but had RP to reduce bulk and ended pain.... Felt much better after surgery and Now hitting it with Lupron/taxotere/Xtandi mix. Hope to be here for a long time to learn and share..

    Doug stage 4 gleason 9/10

  • Hey Dr_WHO! I was stage4 non op, the horse was out of the barn they said.Rt and Adt ,with great results at this point..You are correct in that Everyone is different.

  • Let’s keep those great results coming!

  • Hope the surgery and ADT works for you. Here's some info I saw from an article regarding the two mutations you mentioned and targeted treatments available for them.

    Gene: TMPRSS2–ETSGene fusion:

    Aberration Frequency: 50–79%

    Pathway: Androgen receptor pathway, epigenetic regulation, DNA repair pathway

    Function: Plays a critical role in prostate cancer progression by disrupting the AR lineage-specific differentiation programme, and mediating invasion. Regulates the epigenetic programme; interacts with PARP1

    Examples of targeted treatment: PARP1 inhibitors: veliparib (NCT01576172)

    Olaparib (AZD-2281/KU-0059436; phase II, NCT01682772)

    Niraparib (MK-4827; phase I expansion in prostate cancer, NCT00749502)

    Gene: TP53

    Aberration Frequency: 3-47% Loss: 2–15%

    Pathway: P53 pathway

    Function: Tumour suppressor and regulator of the expression of target genes, inducing cell cycle arrest, apoptosis, senescence, DNA repair

    Examples of targeted treatment: MK-1775 (Wee-1 inhibitor) [40]

    Patients with TP53 mutations may have better outcomes with bevacizumab

  • Gregg, this is great. Thank you. Seems interesting that I seem to be on a regimen (ADT) that does not seem to be effective in treating the type of mutations that I have! I really appreciate your reply and the date you dug up. Thank you very much and happy new year!

  • Stickingaround, I believe that primary ADT would be the treatment of choice regardless of mutations as long as it's working. It's generally the best treatment for hormone naive PCa. Once you become resistant, I think then you would look at "actionable" genes.

  • Thank you again Gregg. I just read my to reports (Decipher and Foundation) and noticed that i have 4 different mutations and none respond to any approved therapy? Strange that ADT is working wonderfully at this point. Thanks again. I really appreciate you insight. It surly helps.

  • Here's the artcle I quoted from that gives a great overall summery of treatments available, plus targeted treatments for gene mutations. You can check yours against the list here. Also keep in mind that these mutations can change so you might get it tested again down the road.


  • If ADT is working really well right now, it means that most of the cancer is the hormone sensitive variety. So unless and until that changes, you would stay on ADT. If you have significant populations of these mutated cells, you might want to consider adding chemotherapy which will take them out. That way, there is less of them to multiply while you are killing off the homeone sensitive types. Platinum-based chemo works well on some of these mutations. Talk to your doctor about it since I'm not a doctor.

  • Gregg this is absolutely great. Thanks for finding. Leaving my chemical urologist last week, he kind of left us with the impression (as well as the Foundation report) that thee is no treatment. it looks like there actually is. Thank you again. - Rick

  • You have to be your own advocate in this fight. No one cares more about your life than you do. Many doctors out there just follow the minimum standard of care with this attitude of "oh well, we all have to die someday".

    It's up to you to be the director and decision maker regarding your treatments.

    That said, treatment for some of the genetic mutations is very new. Some of the treatments are not approved by the FDA (if you live in the US) such as the WEE1 inhibitor used for the TP53 gene mutation. And others would have to be used "off-label" for PCa at this point such as Bevacizumab, currently approved for Ovarion and some other cancers, but not Prostate Cancer.

    These are things we have to do our own homework on and not rely on the doctors. Would also recommend you get a Medical Onolcogist who specialises in PCa, glad you are ditching your urologist.

  • As always ,right on the mark..sage advice...

  • I am realizing that more and more every day. Funny thing, my onco is a chemical uro/onco who is at UCSF. The foundation report I am referring to was ordered after several requests by us. finally on October 27, and received back to the doctor on November 7. With that, we were unaware that the report was back until our doctor sent an email on the portal in late December letting us know the report came back and we would discuss when we came in the very end of December. He neglected to mention that he had it in his hands for almost two months prior. After our limited discussion,it became very clear that our chem/uro/onco really did not review the report prior. Yes, definitely looking for a new doctor in Northern California. Thank you again!

  • I'm in Northern California too. Do you go to any support groups?

  • Be aware about the potential side effects from radiation to the lymph nodes (or at least be sure to discuss this in depth with your radiation oncologist) - potentially lymphedema in the feet, ankles, legs. Also cellulitis. I've had both. Cellulitis apparently caused due to the slowing ('stasis') of the lymph fluid which in turn may be due (I'm told) to either tumor blockage or the side effect of radiation (my radiation oncologist said that the radiation 'dosage' wasn't strong enough to cause any damage however the specialist physiotherapist disputes this and says it is possible). Cellulitis is an uncomfortable surprise but is treated quickly with a short course of antibiotics.

  • I had 75 grays to all pelvic lymph nodes by Dr Dattoli in Sarasota an expert RO who treats only PCa . No recurrence, no side effects. He’s done this for decades.


  • Very fortunate indeed!

  • Radiation won’t do any damage? Ho..ho..ho...and they believe in Santa also!

  • I was diagnosed stage 4, Gleason 9, mets to spine, ribs , sternum, pelvis and nodes. I decided to take an aggressive approach to battle aggressive G9 cancer. Started triple ADT, had my prostate and several nodes radiated with 75+ greys, had chemo per CHAARTED. PSA has been undetectable for 3+ years, recent Axumin scans show no active mets.

    I remain on triple ADT - Lupron, Xtandi and Avodart. Have also taken Metformin since right around the time of DX per Dr. Myers. Myers once told me having my prostate radiated was one of the best things I could have done - kill the mother ship.

    I realize things could change, but hope to keep on clicking along.


  • My prostate was thoroughly shrunk with ADT & RT.. only . No surgery, no Psa now no signs ..We are happy to win any battle as we know this is only one battle in an ongoing war on PC.

  • EdBar how long ago were you diagnosed? Best wishes to you.

  • Sorry I am not a Doctor. But if I was in your shoes---and this is not a recommendation, I would get that sucker out of there--Dr-WHO, and I have the same pathology--not good. I had to urge nicely for the RP--as my age was an issue. The thinking is debulk the cancer, as much as you can---take the Lymph nodes that are suspicious, and some that are close to the source. Neuroendrocrine PSA refractive cells, that act like Small Cell Cancer, usually stay behind, they are lazy, or late to go towards angiogenesis. They later try to kill you. The Hormone Sensitive Pca cells, go out looking for landing spots first--in most cases. So I would want to debulk the cancer--I had my Prostate, 4 lymph nodes which were negative, for cancer--but we took the closest ones, because tests cannot pick up micro-metastasis, also a Seminal Vesicle had to go---and the surgeon cauterized the hell out of the margins in the prostate bed---to use his words, to kill the bastards, by frying them. I went directly to a Special ADT Combination. Many go to Radiation, or chemo, and then ADT. I was a little different---because we knew where the escaped Pca cells were-they were in the blood---so we hit them hard with ADT, and I added a supplemental list[the kitchen sink], at them in the blood---so that everyday, those bastards in my blood had to come in contact with, some or all of my attack agents. We saved or put Chemo on the Shelf--to be used if needed. We did not want to tax my body--with Chemo, after a big surgery. Age does play a role in choices.


  • I agree ! Kill the bastards every way possible! Some will escape the mothership and hit later but later means more years on Mother Earth! How can leaving the mothership in place be helpful?


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