Post Op T3A and waiting for treatment plan

Proberta

Thanks for valuable information that the members of this message board provides. I am 1.5 weeks into recovery from RP surgery and trying to come to terms with the information provided by my pathology report. PSA at 26, Initial biobsy indicated 5 of 12 positive with a Gleason score of 4+4 90%. The post surgery pathology report came back with a Gleason score of 7 (4+3), extraprostatic extension, positive surgical margin of 0.5mm, no cancer on lymph nodes or seminalMy urologist, Dr. Ed Schaeffer of Northwestern Medical Center has ordered a Decipher test, and recommends Salvage after he has seen my next PSA which will come in 5 weeks past surgery.

Having researched this decease over the past week I have gotten a little better foundation of the severity. I would like to hear from the members of this message board with similar staging how the have approached their condition. I am trying to get out of denial that this is really happening and into the mindframe that I have to fight this for the long haul.

 

Any input would be appreciated.

Proberta

Josephg said:

Information

Hi Proberta,

Denial is certainly part of the reactive process, but you will definitely come out of it and become proactive, once again.

You have certainly come to the right place for information, and many fantastic folks here will post references to their experiences for your to review.  Your case and mine have a lot of similarities, so I will provide you with a few references to previous postings that I made regarding my experiences.

http://csn.cancer.org/node/299431 - 1 posting

http://csn.cancer.org/node/188931?page=3 - 5 postings

http://csn.cancer.org/node/188931?page=5 - 3 postings

If you end up going down the hormone therapy and radiation therapy routes, I have posted some detailed narratives regarding my experiences with those two therapies in the above links, along with some prior surgery-related side effects.

If you have any questions, please ask.

I wish you good luck and future results on your journey.

Thank you for your note and

Thank you for your note and feedback. very much appreciated 

Swingshiftworker

Follow up Radiation Necessary

I think you should be encouraged by the reduction in your Gleason score from 8 to 7, which means that the cancer is less advanced and should be less aggressive, but you still need to worry about the advance of the cancer outside of the prostate.

Personally, I wouldn't wait for the next PSA results to come in 5 weeks becuase I think the PSA score is irrelevant to the fact that an "extraprostatic extension" and a positive surgical margin" was found.   If the location of these things weren't identified in the pathology/surgical report,  I'd ask to immediately get an MRSI (a spectrographic MRI image) to pinpoint their location and implement a plan to treat these locations radioactively ASAP thereafter.

CK would be my choice of follow-up radiation treatment, but IMRT should suffice if CK is not available.  Good luck!

VascodaGama

Another nomogram

Proberta

My opinion goes to the pathological findings. Gleason score 4+3 is not much different from a score 4+4. The prime grade of 4 (at the downgraded finding) is still for aggresiveness. The presence of extraprostatic extensions and positive surgical margin (of 0.5mm) may lead you to probable recurrence, in need of a salvage therapy. In such regards, the negative findings of "no cancer on lymph nodes or seminal vesicles" is important when juddging were to "attack".Where are the most probable hidaway of the bandit. I would say that to be localized (prostate bed and iliac areas).

The Decipher test is a sort of refined nomogram similar to the ones used by MSKCC (https://www.mskcc.org/nomograms/prostate/post-op). It provides data in reference to the type of cells that may be or not be proper for an attack with hormonal treatment (ADT dependent).
It will be helpfull to have it but may not change nothing from the above. You will be subjected to a salvage treatment.

Best wishes,

VGama

Will Doran

Follow up Radiation and ADT

Proberta,

I was diagnosed with a PSA of 69, Gleason of 3+4--7.  Had Robotic Assisted surgery in Dec 2013.  Pathology showed a very tiny spot in one lymh node.  It hadn't shown up in my MRI's. I had 40% of my Prostste involved.   So, I was put on ADT (Lupron) to knock down any remaining cancer and then had 8 weeks of Radiation.  I remained on Lupron for two years.  As of now, May 2016, My PSA remains at <0.010 and I have been off the lupron for 4 months at this point.  My total testosterone is starting to come back up.  They had my total "T" clear down to 17.  I am now at 134 which is still very low.  However even with the rise of my Testosterone, My PSA remains at "0".  I was treated as if I were a Stage 4.  I was a pT 3b N1.  They told me they were going be aggresive and they were.  So, far, even though the side effects were pretty bad at times, this worked.  My doctors are hopeful that we may be ahead of the beast.  However they keep it real and make sure I don't fall into a false sense of security. 

Make sure and study all you can about your treatments so you know what to expect.  It's a rough battle, and there were times I wondered why I went through all of this.  But since we are coming up on 3 years post diagnosis, I'm glad I did what I did.  I feel that agressive treatment, if needed, is the only way to deal with this battle.

All of our cases are different and thus treatment that works for one of us, might not work for another. 

Best of luck and Fight like the Devil.  It's the only way to go at this.

Peace and God Bless

Will

Josephg

Information

Hi Proberta,

Denial is certainly part of the reactive process, but you will definitely come out of it and become proactive, once again.

You have certainly come to the right place for information, and many fantastic folks here will post references to their experiences for your to review.  Your case and mine have a lot of similarities, so I will provide you with a few references to previous postings that I made regarding my experiences.

http://csn.cancer.org/node/299431 - 1 posting

http://csn.cancer.org/node/188931?page=3 - 5 postings

http://csn.cancer.org/node/188931?page=5 - 3 postings

If you end up going down the hormone therapy and radiation therapy routes, I have posted some detailed narratives regarding my experiences with those two therapies in the above links, along with some prior surgery-related side effects.

If you have any questions, please ask.

I wish you good luck and future results on your journey.

Proberta

VascodaGama said:

Another nomogram

Proberta

My opinion goes to the pathological findings. Gleason score 4+3 is not much different from a score 4+4. The prime grade of 4 (at the downgraded finding) is still for aggresiveness. The presence of extraprostatic extensions and positive surgical margin (of 0.5mm) may lead you to probable recurrence, in need of a salvage therapy. In such regards, the negative findings of "no cancer on lymph nodes or seminal vesicles" is important when juddging were to "attack".Where are the most probable hidaway of the bandit. I would say that to be localized (prostate bed and iliac areas).

The Decipher test is a sort of refined nomogram similar to the ones used by MSKCC (https://www.mskcc.org/nomograms/prostate/post-op). It provides data in reference to the type of cells that may be or not be proper for an attack with hormonal treatment (ADT dependent).
It will be helpfull to have it but may not change nothing from the above. You will be subjected to a salvage treatment.

Best wishes,

VGama

Another Nomogram

Thank you

Proberta

VascodaGama said:

Another nomogram

Proberta

My opinion goes to the pathological findings. Gleason score 4+3 is not much different from a score 4+4. The prime grade of 4 (at the downgraded finding) is still for aggresiveness. The presence of extraprostatic extensions and positive surgical margin (of 0.5mm) may lead you to probable recurrence, in need of a salvage therapy. In such regards, the negative findings of "no cancer on lymph nodes or seminal vesicles" is important when juddging were to "attack".Where are the most probable hidaway of the bandit. I would say that to be localized (prostate bed and iliac areas).

The Decipher test is a sort of refined nomogram similar to the ones used by MSKCC (https://www.mskcc.org/nomograms/prostate/post-op). It provides data in reference to the type of cells that may be or not be proper for an attack with hormonal treatment (ADT dependent).
It will be helpfull to have it but may not change nothing from the above. You will be subjected to a salvage treatment.

Best wishes,

VGama

Decipher test

http://urology.jhu.edu/prostate/prostate_cancer_genomic.php

 

VascodaGama

Genomic testing

Proberta,

We have discussed before in this forum about the role and capabilities of genomics in prostate cancer’s prevention and treatment. I am a believer in the value of genomics to lead researchers to the “manufacture” of the most wanted Silver Bullet to kill the bandit.

Loads of researching have been done to identify the genes (and genomic materials) involving cancers and some laboratories advanced with projects to make use of the knowledge already at their hands. This is the beginning of the Oncotype DX and Decipher tests that become popular and turned into an added toll for physicians to interpret the status of a patient, or to identify probable failing treatments to a particular type of cancer (a unique protocol made to fit a certain patient). Thought, still limited at the present I think genomics will substitute the existing nomograms as much data is collected, interpreted and filed (to be used in future interpretations).

The Decipher was presented in 2013 by their “fathers” at the annual “assembly” of ASCO and since then it received some “respect” from oncologists. But it serves only as an added toll to the other data used in the judgment of a patient status, in particular the pathologist’s findings. Gleason grade and score play a big role and extra prostatic extensions lead their views.

I think you doing very well in having your cells tested now not just as a simple gathering of data but because it will help you in the future to evaluate a series of treatments that could not be useful to you. All this information must be gathered before any therapies that “destroy” (interfere) with the DNA of cancerous cells. Radiation and chemo act as treatments exactly by disrupting/breaking the DNA strands.

Genomic testing should become a common practice in cancer prevention as much as it is the PSA.

Best wishes for full recovery and luck in your journey. Hopeful for remission levels in your next tests.

VGama