Asking for advice

[ventusbella]

Since I first diagnosed with PC (T3bNx, GS 3+4)last February, 2023, I’ve been through RP, ADT and IMRT continuously. I had Firmagon shot twice before RP and switched ADT to Eligard. Then I started 25 sessions of IMRT.

All the treatments was done within 3 and half months. Now I am exhausted. I am going to have second 6-months Eligard next week.

My first question : Is it normal this kind of intensive treatments?

Second, I am exhausted and suffering from various SEs. I really need some break.

Today my PSA is 0.06. The meeting with my Dr. is scheduled to next week. My doctor suggested 2 years of ADT. Is it possible for me suggest to stop or to shorten the duration of my ADT? Or is it dangerous?

[Tall_Allen]

It is not normal to have hormone therapy with a prostatectomy, and it is not normal to have a prostatectomy knowing you will have radiation. In the US, you would have had hormone therapy and radiation without the prostatectomy.

[ventusbella in reply to Tall_Allen]

My initial PSA was 69.1 and there’s something suspicious in one of my pelvic lymph nodes. The doctor thought I was a dangerous patient. He believed RP is eventually beneficial even in case I was metastatic. IBRT was for the pelvic lymph nodes, not for the prostate. Nothing’s found from the post RP biopsy though.

Thanks for your reply!

[Dannyboy48 in reply to Tall_Allen]

Well, my friends I am not a doctor and I do know everyone’s cancer is different

After about seven years, I got off of the Firmagon and I am now on a three month Eligard shot. I have no side effects from it and I take the shot in the belly. I took ellagard ones in the butt and had a sore back. Zero side effects in the belly.

My PSA has never gone down to zero, but it stays at 1.3.To 1.7 for the past eight years or so. I have never had radiation but I did have.xgiva for about two years until I got dead jaw syndrome which did clear up the three meds in my pelvis.

happy to say all of these years later, the cancer has not progressed I do have some side effects but nothing that is anything like being dead. I lost my sex drive but it’s 75+ years old that really doesn’t matter. I do not have as much energy but then again I am not 21 years old.

I live every day to the fullest that I am able to do and enjoy myself immensely.

Don’t go crazy worrying and enjoy life to the fullest and always remember you could get hit by a bus tomorrow and all the worry it will be over 😂keep dancing, keep smiling, and do all you can do🥃🍷⛳️

[Nusch]

I’ve also had ADT and RP concurrently. Just wonder about IMRT so close to RP. I’ve had Docetaxel instead. Now, as it’s done, focus on healing and regaining strength. You can add to it by proper diet and exercising. Start slow, but try to do something daily. Especially weight training is important. I started too late and lost my muscle mass. It was hard, to get my muscles back (but finally worked out, even under ADT). Also walking is important, to get rid of fatigue. Try to walk one hour a day, preferably in fresh air. Take a rest whenever needed. You will see the benefits rather quickly.

[Hailwood]

I had an RP, and then ADT, but only after a PSMA PET scan showed multiple abdominal lymph node metastases. It will be 3 years this November, and I remain on the Lupron/Erleada combination with the usual se's, but my PSA and T remain undetectable, and so I'll continue on this train until things change.

[Brokedown_Palace]

Here is a quote from the excellent medical expert resource, UpToDate:

"LYMPH NODE INVOLVEMENT. For most men with pathologic lymph node involvement and an undetectable PSA following surgery, we suggest adjuvant androgen deprivation therapy (ADT) with or without radiation therapy (RT). The optimal duration of ADT is not established; we aim for 24 to 36 months of therapy. (See 'Adjuvant androgen deprivation therapy' below.)

For men who have an estimated life expectancy of at least five years, we prefer adjuvant ADT with RT. However, individual values and preferences are an important component of this decision, and many individuals decline RT, particularly if the PSA is undetectable after surgery. If RT is chosen, many clinicians, including some of the authors and editors associated with this review, delay initiation until 6 to 12 months postoperatively. (See 'Adjuvant radiation therapy' below.)

Although National Comprehensive Cancer Network (NCCN) guidelines suggest observation as an option in this setting, we do not favor this approach for most men. However, men who place a higher value on quality of life issues and are willing to accept the uncertainty of oncologic outcomes might reasonably choose close PSA monitoring and deferral of ADT and RT until a biochemical recurrence develops."

This may or may not pertain to your situation; in either case, it sounds like your treatment may be consistent with this approach. Hope this helps, and I strongly suggest discussing any questions you have with your doctors and obtaining a second opinion if you think it is warranted.

Good luck.

[ventusbella in reply to Brokedown_Palace]

This is exactly what I want. I appreciate your kind reference. In my case the doctor had suspicion on one of my pelvic lymph nodes together with worries on my initial high PSA(69).

Actually MRI just before the surgery and post RP biopsy didn’t find any abnormal lymph nodes. But the doctor firmly believed the invisible cancer cells spread already to my body due to my initial conditions.

That’s why my doctor set the basic treatment standards I mentioned and I don’t want to agree with him especially for ADT.

There will be some arguments with the doctor I guess, but your reference helped.

If I choose QOL I should accept the consequences.

[tsim]

Were you ever offered the option of HDR Brachytherapy?

[ventusbella in reply to tsim]

In my country Urologists have the absolute power over prostate cancer. All the other treatments except RP are subsidiary.

Most of the patients just told what to do by the urologist. Because of this forum I realized our system is very absurd.

[ventusbella in reply to ventusbella]

They execute ADT treatment, decide which drug they are going to use for ADT and ask cooperation for radiation therapy.

[tsim in reply to ventusbella]

That's a shame because they are the least qualified to treat prostate cancer. They make a lot of mistakes.

[ventusbella in reply to tsim]

Is that so? I wondered to see someone mentioned in this forum that not to go to urologist and suggest to visit oncologist. Now I understand. Maybe different situations in my country.

[Brokedown_Palace]

This paper is older (2011) but may still be relevant to your situation:

Adjuvant Androgen Deprivation for High-Risk Prostate Cancer After Radical Prostatectomy: SWOG S9921 Study

ncbi.nlm.nih.gov/pmc/articl...

If you are open to considering the course of ADT that your doctors are recommending, you may want to talk with them about different ADT agents and doses, which may make a difference in tolerability.

From my personal experience, I was initially opposed to ADT. However, I decided to give it a try, and after finding the combination of Lupron and Erleada intolerable, I discontinued Erleada and I am now finding Lupron's side effect to be tolerable after 3 months. I am even considering the 24 month course of Lupron or Orgovyx that my medical oncologist is recommending.

That said, I totally support (for whatever that is worth) you in making your own decisions, though hopefully after obtaining all the information you want and need.

Best wishes.

[ventusbella in reply to Brokedown_Palace]

You give me inspirations! Thanks.