Advice for Pt3b N1

hjk123
hjk123 Member Posts: 8 Member
edited May 13 in Prostate Cancer #1

Hello all,

I am so grateful to have found a community during this time. This is all very new and scary for us.

My dad had a radical prostatectomy, and we are scheduled to have a radiation appointment in a week. He has pt3b (cancer in one seminal vesicle) and in one of the ten lymph nodes. His PSA levels are good as of now, and testosterone is normal. They recommended radiation first and then, in 70 days, meeting with a hematology oncologist for hormone therapy. I wanted to know if anyone has had a similar kind of prostate cancer and what you would recommend for treatment. We are currently at Kaiser Permanente. Any advice would be greatly appreciated, thanks so much.

Grade: Grade Group 2 (Gleason score 3+4=7), Minor Tertiary pattern 5 (less than 5% present), percentage of pattern 4 present (6-10%)

pT category: pt3b

pN category: pN1

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member

    Hi,

    I always thought they did the hormone therapy(ADT) first to weaken the cancer then did the radiation last to kill the weakened cancer.

    Dave 3+4

  • hjk123
    hjk123 Member Posts: 8 Member

    Oh I see. I will definitely ask them at our next appointment. Thank you, Dave!

  • eonore
    eonore Member Posts: 185 Member

    I was in a similar situation as your Dad. I had salvage radiation and hormone therapy following removal. I am now five years post treatment with undetectable PSA. Keep your chins up and you still have a good chance of cure. Make sure the radiation field is wide enough to include the entire pelvis including the seminal vessel and node. Also, as Clevelandguy said, the ADT usually starts before the radiation.
    Good luck,

    Eric

  • hjk123
    hjk123 Member Posts: 8 Member

    Also, along with ADT, they are also going to give him Abiraterone; not sure if anyone is familiar with this drug as well. Our doctor said it was fairly new.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member

    Hjk,

    Welcome to the board.

    You got good advices from above survivors.

    I wonder about the need of Zytiga (abiraterone) and this early stage. This is a drug typically recommended in castration resistant patients, particularly to those with M1.

    Your dad has extraprostatic extensions at the seminal vesicles and nodes (N1). This is usually treated in a protocol started with an antiandrogen plus an agonist (ADT) followed two months later by a protocol of radiation (SRT).

    Zytiga together with prednisone (a nasty medication) would be reserved for future recurrence in case of SRT failure.

    How about getting second opinions from another institution. 🤔

    Your dad has time. Advance wisely and coordinately.

    Best of luck 👍

    VG

  • Josephg
    Josephg Member Posts: 455 Member

    I was on Lupron/Zytiga/Prednisone for 2 years, and I am not yet castration resistant. My Oncologist recommended this cocktail, based on ongoing experiences in Europe, where this cocktail produced substantially positive results, and even some instances of potential cure (5+ years with non-detectible PSA).

    To be sure, this cocktail does have increased side effects and intensity, as compared to my first ADT cocktail experience of Lupron/Casodex many years ago.

  • hjk123
    hjk123 Member Posts: 8 Member

    Thank you all for your help, it means so much!

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member

    Joseph,

    In my post above I meant to say an antiandrogen like Xtandi, Erleada or Nubeqa that works directly on the androgen receptor (AR). Zytiga stops the synthesis of androgens from pregnenolone and progesterone (adrenal glands) circulating in our body.

    Surely, Zytiga can substitute one of those androgen receptor signaling inhibitors, but it needs to be paired with prednisone incrising the risks from the side effects. After all, HJK's father is an hormone treatment naive patient, different from our cases (pretty similar) on a second term regime of HT.

    I highly respect your experience with Zytiga in view of the bone metastasis. Probably I should have followed your protocol but the NHS oncologist has different ideas.

    Best wishes for a faster recovery from chemical castration. 🙏

    VG

  • Josephg
    Josephg Member Posts: 455 Member

    Hi VG,

    Yes, I was advised that Zytiga alone would cause very negative effects, ranging from low potassium to high blood pressure and irregular heart beats to toxicity in the liver/kidneys, and that is the reason why Prednisone was prescribed to be part of the cocktail to minimize the occurrence of these negative side effects.

    I had to monitor my blood pressure daily while on this cocktail, and I have continued to do so since then. I did see blood pressure increases, and my PCP prescribed and adjusted dosages of Amlodipine and Losartan to keep my blood pressure within acceptable limits and stable.

    15 months after the end on the 2 year cocktail protocol, I suddenly experienced irregular heart beats, atrial fibrillation, ranging from my normal pulse of 58 to pulses exceeding 120. My PCP prescribed Eliquis to minimize the risk of stroke, until I can have my first appointment with a Cardiologist, scheduled for July 1st. Is this related to the 2 year protocol of my cocktail? Who knows…..

    To quote the Grateful Dead song lyrics, "What a strange trip it's been.". Let's see what comes next on my PCa journey. MOST important, though, I still have a great overall quality of life, and that it TRULY what is most important.

  • hjk123
    hjk123 Member Posts: 8 Member

    Thank you for y’all’s comments. An update: My dad’s radiology oncologist said we should start hormone therapy in July to let him heal from the prostatectomy in early April. Then they said he may start radiation only till next year. This made us nervous that radiation is starting only next year. Is this normal protocol for this? We are working on getting a second opinion but don’t know how Kaiser will let us go out of network but maybe it will be worth it to pay the fees

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member

    Hi again,

    Something is missing in your descriptions that doesn't make sence.

    I wonder if you are talking about a salvage treatment due to a failed prostatectomy, or if this discution on hormonal and radiation makes part of the initial treatment protocol (RP + HT + RT).

    Can you provide his PSA histology and also confirm that the prostatectomy was done in April 2024?

    Has anybody informed about recurrence?

  • Old Salt
    Old Salt Member Posts: 1,505 Member

    That sequence makes sense (hormone therapy first, then radiation). The hormone treatment is supposed to stop the cancer from advancing and sensitize the cancer cells to the follow-up radiation. There is no particular reason to be nervous about this.

  • hjk123
    hjk123 Member Posts: 8 Member

    Thanks all for your advice! It has been invaluable in this process. My dad started his Lupron injections about a month ago and and begin Zytiga with prednisone on Monday. The side effects do concern me with Zytiga and prednisone (diabetes and blood pressure) but I understand it is needed for him. Is it normal for them to lower his statin dose when starting Zytiga? They lowered his statin prescription by 5mg.

  • Josephg
    Josephg Member Posts: 455 Member
    edited August 10 #16

    They did not lower my statin dosage, when I started Zytiga, though I had a low statin dosage to begin with. They did have me start monitoring my blood pressure daily, which I have continued to do ever since. I also had blood work done every 3 months (in addition to PSA and Testosterone monitoring) to watch for any negative trends for my kidney and liver functions (the Prednisone completely protected me from any harmful effects from Zytiga in this area).

  • hjk123
    hjk123 Member Posts: 8 Member

    Thank you so much, Joseph for letting me know your experience. I have reached out to our doctor to understand why they lowered the dosage. And the doctor said they would do labs every 3 months but I will make sure they include what you mentioned. Thank you so much again.