I am a 64-year-old retired Army man living at Delhi in India diagnosed purely by chance…was taking meds for Rheumatoid Arthritis and the doc suggested getting an ultra sound to see if my liver was okay. It was but also showed a mildly enlarged prostate, so got a PSA test for the first time in my life - 4.3. Since it was a little above the norm went to the Urologist who did a DRI and then the story started. I have been on listening watch on this site for a little more than a year now and the kind of inputs, information and moral support which one gets are hugely beneficial to our clan. Stories of great courage abound and the treatment options and advice come with a wealth of personal experience and are valuable to newbies like me.
PT3bN1Mx, RP in Dec 2019, As per initial PET Scan and Biopsy post RP - Gleason 8, 3 of 15 lymph nodes malignant, 30-35% of prostate, closest bladder margin 1mm, perineural invasion, seminal vessels affected and mets to left common iliac node. On Zolodex (3 monthly) and Bicalutamide 50 mg from Jan 2020. IGRT for six weeks completed in Jun 2020. In Sep 2020 second PET scan indicated no mets, Dexa T score 0.3 and Z score 0.1 and Testosterone 12. PSA throughout has been less than 0.01
Tolerated above pretty okay with minor issues which continue to include getting up 4 to 5 times at night to pee, once a fortnight especially after a late night have had incontinence issues, hot flashes four five times a day, developed slight anemia with low levels of RBC, Hb, Lymphocytes, some boob development and 10 percent increase in weight especially around the midriff but overall not very eventful
No dietary changes except cutting out red meat and adding more fish and less sugar and do a medium level workout with a 6 Km walk and some Resistance Band exercises. I have my evening drink daily mostly 60 ml of a good whisky and an odd beer maybe once a week.
Firstly based on whatever I have read on this group site I have largely understood that for advanced cases its best to combine Abiraterone and Prednisone with Lupron/Zoldex initially for long term benefit. My doctor, a Radiation Oncologist insists that Bicalutamide is fine for me presently. It seems to be working okay. Would welcome views.
Secondly he is suggesting that I go for another PSMA PET Scan since its been a year since the Radiation therapy finished. The last scan was in Sep 2020 three months after the radiation terminated. Since my PSA remains undetectable do I need to get the scan and is it harmful in any manner. Please advise.
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Tally111
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You do not have bone mets therefore you can continue with Bicalutamide. Check your testosterone to make sure it is below 0.2 ng/ml or 0.7 nmol/L.
I get a PSMA PET/CT or MRI almost every six months and noticed no harms yet. It is more important to observe the tumor but to worry about possible side effects. Because you are on ADT you can get it done at a low PSA value.
Tally111, I agree with what GP24 is saying that you can stay on Bicalutamide and monitor your PCa closely. If Bicalutamide is working for you .. like it is working for me for last 18+ months ..I see no reason to upgrade the treatment . It will only increase toxic side effects.Discuss with your Doctor If he would add Finasteride 5 mg a day to Bicalutamide. This combination is called "Peripheral Adrogen Blockage) A 2004 study by Harward University and a very recent June 2021 small study from Johns Hopkins found that Peripheral Androgen Blockade delays progression and castration resistance by 37 months and 49 months respectively. Bicalutamide is least toxic of all lutamides and Abiraterone. You are lucky that Bica is working for you. Jai Hind !..
Johns Hopkins Study: Peripheral androgen blockade in men with castrate- sensitive biochemical recurrent prostate cancer.
Diane K Reyes, Kenneth J. Pienta of Johns Hopkins School of medicine, Baltimore, USA.
Published in June 2021 in Journal ..Medical Oncology (2021) 38.80.
I was able to get both full research papers. My decision to stop Lupron+Zytiga and go for Bical+Finasteride 18 months ago ..was based on 2004 paper from Harward. I am glad that I chose that path. This new 2021 article from JH convinced me to continue the same treatment i.e. Bical+Dutasteride as long as it works. I know these are based on small number of patients but if it is working...It is working.
Regardless some negative remarks about bicalutimide, I am going to stick with it as long as it works. I am in year six. In the meantime: keep killing the cancer. Elmo, a friend, living in Springs, SA, is now 20 years on Bicalutimide, and it is still working for him.
You are taking the Lupron as an adjuvant therapy to help with the radiation. You will be taking it for 2-3 years in the hope of a cure. Bicalutamide may add slightly to its usefulness. There is a clinical trial adding abiraterone and apalutamide too, but that is experimental.
What you've read about others taking abiraterone on this site is as a permanent therapy (until it stops working). You are using hormone therapy for a different purpose.
There is no need to get a scan unless your PSA rises.
Thank you TA. I am a little befuddled on this. As I understood from the Doc who did the first PET CT there were mets in the common iliac node which was a little distance away from the prostate and contributed to my being in Stage 4A or Advanced Prostate Cancer . Initially there were clashes of opinions between the Urologists' who recommended RP and the Onco Radiologists who all felt RP was unnecessary and I should be managed by Radiation Therapy. I elected for RP and thereafter, I am, as per the clinical note, on ADT plus Adjuvant Radiation Therapy. So how is this different from permanent therapy and what exactly is the prognosis when we say hoping for a cure? Can I take an ADT holiday after 24 months for instance?
The goal for you is a cure. The common iliac nodes are still within the standard whole pelvic salvage radiation treatment area, which I assume you received when you got salvage radiation. (If not, you should find a new radiation oncologist).
The ADT is not permanent, but should be continued for at least 2 years. When you end it, it is not a "vacation," it is the end of your ADT (hopefully).
Hi Tally. The first question is to have your RO show you the distribution of treatment doses ( of radiation in Gy) in relation to the highest node: the left common iliac node. If it was not treated at a high dose within the treatment field for the pelvic lymph node fields, then it should be “spot” targeted to destroy it with SBRT promptly. If it did already receive adequate RT coverage, something approaching 60 Gy, and there is no evidence of any mets above and beyond that, then you have at least the possibility of cure. Excellent.There is no reason to get another PSMA scan at this time. The treated prostate bed and PLN nodes will likely still light-up as it can take 2-3 years for them to die and disappear after effective Salvage RT. And any new mets, which is what you are most interested in, would not likely be seen until you are off of ADT. Only then will you know. Following PSA off of RT and 6 month or annual scans. Best of luck to you.
Has the COVID-19 devastation begun to settle down in Dehli yet. Am eager to return to India again. Paul
I have had IGRT to the entire pelvic area with a dosage of 66 Gy in 33 fractions @ 2Gy per fraction to the post op bed and hopefully that should take care of the common iliac too. Thank you all very much for the excellent suggestions which make things a lot clearer for me in terms of the way forward.
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