Please suggest questions for me to ask
At 20 months post RP,PSA .04 G3+4 pat... - Advanced Prostate...
At 20 months post RP,PSA .04 G3+4 path 1 PSM, interdisciplinary team has handed me to rad onc. Meet 11-3. Help with questions I ask? Thx
Written by
Steve507
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9 Replies
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It is too early. Don't meet with an RO until you've had 3 consecutive rises:
Tall_Allen is right. When PSA rises to 1.0 or higher, it's time to consider radiation oncology...but remember: radiation oncologists make their money by selling radiation services.
But to your request for questions, consider these:
1--I understand that 38 - 40 "treatments" are required. If that would be true for me, what would be my recovery experience and Quality of Life (QOL) after recovery?
2--Is my age and are my previous surgeries appropriate to undergo radiation?
3--Is Xtandi a reasonable alternative to radiation?
4--What is a reasonable expectation for the time remaining to me without radiation and what would it be with radiation?
And a question only you can answer:
5--Would the extra time of life gained by radiation be worth the significantly reduced QOL?
Good vibes to you, Steve.
I was also Gleason 3+4 but with microscopic Extra-Prostatic Extension and microscopic positive surgical margins so received adjuvant RT.
My MO said if I were to agree to get adjuvant RT he would recommend I got RT to both the pelvis as well as the peri-iliac regions as if these were not done and radiation had to be done to these regions later there was difficulty with radiation to the margin of the 1st radiation area .... how close could the RO get as there are lifetime limits to the amount of radiation one might receive to to an area of the body.
Also, my RO was a big believer in the idea of if a radiation recipient had a goal they were working toward during the RT they were less likely to have any RT complications. I trained for an IRONMAN Triathlon (140 miles total) during RT and suffered no complications. I did have to watch my sleep closely and slept more especially toward the end of RT. I completed my Triathlon about 6 weeks after I finished RT.
Finally, be sure to ask the RO about any supplements you might be taking .... some make RT less effective.
Good Luck,
Rick
PSA 0.03
I did not receive ADT .... according to a prominent researcher (Dr. Vogelzang my MO) ADT with Adjuvant RT (begun 90 days after Prostatectomy) is controversial & he felt in my case it was not warranted. I do know of someone who did an IRONMAN Triathlon (140.6 miles) while on ADT but he was not doing RT at the time. I assume you are doing Salvage RT?? If Salvage, I would not be surprised if ADT would be required.
Adjuvant RT is RT given even though PSA is not rising but there are conditions suggesting microscopic Prostate Cancer is present in the pelvis .... in my case both Extra-Prostatic Extension & Positive Surgical Margins on Prostatectomy at Pathology. After a study presented in the late summer of 2019 Adjuvant RT is a bit controversial with some still doing it & others changing their practice and waiting for a rise in PSA.
Salvage RT is RT done after a rising PSA indicates there is Bio-Chemical Reoccurrence (BCR). My MO has told me he would not think about additional treatment unless my PSA rose to 0.1 or above & I believe he would want at least 2 different tests showing this. There are some supplements & foods that artifactually reduce PSA. So far, the list of substances that may interfere with PSA tests, creating false negatives, includes:
----biotin,
----curcumin (found in Tumeric)
----genistein,
----EGCG (tea)
----resveratrol,
----capsaicin,
----saw palmetto,
----pygeum,
----beta-sitosterol, and
----statins
The false negative PSA readings may fool the patient and his physician (who may not be aware of the patient's supplement use) into believing that the cancer is under more control than it really is.
GOOD LUCK,
Rick
Post-surgery my PSA was 0.5 on two tests. I started ADT 2 months prior to full course of IMRT. I've had no additional QOL impact that I didn't have after surgery, maybe a little more incontinence (but I was lazy about doing Kegel exercises.) Post-RT PSA has been undetectable for 17 months (regular test, not ultra-sensitive). Don't know if that reduction is from ADT or RT, I guess I'll find out when I get an ADT vacation next year.
I'm a couple of years younger than you and also active. Hope that helps.
