Locally Advanced Prostate Cancer, at diagnosis

[ToryCarlisle]

My husband was recently diagnosed with prostate cancer. His gleason score was a 9, grade 5 at biopsy. A PET scan seems to be showing that a near lymph node has been compromised. We're still waiting to see doctors - at first local urologist recommended appointments with surgeons, and after PET scan is now suggesting he see a radiation oncologist. Am curious, for those who had similar scores at diagnosis, what treatments did you pursue, and are you fairly pleased with outcomes?

[TylexGP]

Hi Tory,

I have a similar diagnosis to your husband. I was 56 when diagnosed and am two years into this adventure. You can look at my profile for the specific details. I met with a surgeon, Radiation oncologist and a medical oncologist at a National Cancer Center of excellence. After much reflection I stare set ADT +Zytiga and two months later underwent HDR Brachytherapy followed a month later with 25 rounds of external beam radiation. I have been happy with my decision though the ADT has been tough at times. With the high grade cancer I would recommend Genetic testing. I am BRCA2 positive. Please take a look at my profile and message me here or privately. Currently my PSA is 0.08 and I have a decent quality of life.

[ToryCarlisle in reply to TylexGP]

Thanks for your reply. Your diagnosis are similar. Would treatment be any different if genetic testing shows BRCA2 positive? Thanks!

[TylexGP in reply to ToryCarlisle]

Initial treatment would not be different but gives the option of PARP inhibitors if initial treatment fails.

[ToryCarlisle in reply to TylexGP]

Thank you so much! I will read more on your profile page. I appreciate your response and am happy to hear you're doing well.

[Tall_Allen]

Consider this clinical trial if there is a location nearby:

clinicaltrials.gov/ct2/show...

Outside of a clinical trial, he should be able to get radiation to the prostate and all the pelvic lymph nodes (with a boost to the detected one) and 3 years of ADT with 2 years of abiraterone. The "tried and true" kind of radiation is whole pelvic external beam plus a brachytherapy boost to the prostate.

[ToryCarlisle in reply to Tall_Allen]

Thanks. I've heard the ADT is challenging. :/

[Tall_Allen in reply to ToryCarlisle]

Not necessarily. Everyone is different.

[witantric in reply to Tall_Allen]

TA is right. I have a person in my support group who has been on ADT for 20 years. PCa is like 1000 variants of the same disease. The treatment TA is mentioning is SOC for high risk. Can he get ADT while you decide what to do next? This will stop cancer in its tracks while you plan your next move. Ask your doctor about that.

[ToryCarlisle in reply to witantric]

Will do. Thanks.

[Todd1963]

I have been on ADT give or take a month for 17 years. It’s definitely an adjustment. I wouldn’t call it a walk in the park but it is tolerable. It is just a new normal for me. The trial that TA mentioned is only 50+% full the last time I checked but it may be a good fit. Historically advanced prostate cancer is one of only a few cancers where the primary tumor is not removed. Through abstracts of previous trials it was found that men who had the prostate treated prior to finding out they had advanced disease did better than those who did not. This may be a good fit foryour husband.

[ToryCarlisle in reply to Todd1963]

Will look in to it. Thank you.

[Atdabeach]

My diagnosis was similar: PSA 19.5, 10 of 10 positive cores on biopsy, Gleason 9, a few pelvic lymph nodes. I was told no surgery, because I would need followup radiation anyway, so let that do the work (along with ADT). I started with Eligard and abiraterone w/prednisone, which will last at least 2 years, with radiation to start after 6 months of ADT. My PSA quickly went to undetectable from the meds. I opted for proton, since it was available where I was being treated (Johns Hopkins/Sibley), and just today reached the halfway point in my 44 proton therapy treatments (5x per week).

Side effects from both radiation and ADT have been very manageable for me, but as others have said, every case is different. At this point I have fatigue, weight gain, and no libido (from the ADT) and mild urinary issues (weak stream and increased urgency, managed by Flomax) from the radiation. All in all, better than I expected so far, but of course I don't know if it's really working yet, and the real proof will be in the coming decades!

[ToryCarlisle in reply to Atdabeach]

Hope it is working for you! Thanks for the info. We'll see an oncologist next week. Glad things are moving forward. Has been slow going getting appointments, which has been frustrating. But feeling better now that we're rolling!

[KAgolf]

Hi Tory--my hubby's dx was similar you yours. His was caught very early I think even though it was GL9, grade 5 and dx was Stage IV advanced, aggressive high-risk Pca. His PSA was in 3's for years then suddenly at 5.15; urologist wanted a 3 mo. wait and PSA was 8.15; had biopsy 3 weeks later, all 6 cores on 1 side positive, other side all negative. Started on ADT 2 weeks later and PSA was 10.43. SO, it was obvious that it was aggressive and caught early....PSA tripled in 4 months!

Auximen PET and 3 MRI's showed 3-4 enlarged (at high end of normal size range) iliac lymph nodes--never biopsied so don't know if malignant or not--enlargement could have been because of biopsy or his COVID vaccines. However, the RO treated them as malignant for Proton treatment. An MRI 3 months after proton ended said NO SIGN of those lymph nodes!!

I begged the medical oncologist (MO) for months to order genetic testing--finally did; main thing that showed is a total loss of PTEN. EVERY MAN WITH PROSTATE CANCER SHOULD HAVE GENETIC TESTING RIGHT AWAY.

Really ticks me off that we can't order these tests ourselves and have to get doctor to order. It took almost 1 year to get MO to order and then he ordered it on the year-old biopsy sample. A few months later I convinced him to do a liquid biopsy to see if any mutations as result of 1 year of ADT and Zytiga. This MO doesn't have a clue what to do with the info.

My hubby had 8 weeks of Proton therapy -he tolerated that great, except for fatigue. Look into your husband getting the Space Oar inserted for any radiation as it protects the rectum.

The ADT and Zytiga+prednisone have wreaked havoc on his body. He has lost ALL muscle mass--arms and legs like sticks--his 2 arms together might be as big as 1 of mine. He lost bone density while on Boniva for 18 months-now has osteoporosis--on Prolia now and hope it helps.

GET A DEXA SCAN as base for bone density and then have another after 18 months to see if he is stable--ADT and Zytiga can cause bone loss and muscle mass loss as well as dementia. He is tired all the time, sleeps more than he is awake, fatigued, weak, and worst of all perhaps is the effect on his cognition. He started with what I thought was just brain fog and it wasn't too concerning; however, after we both had COVID 1st of January, it accelerated. He has also been diagnosed with polyneuropathy which neurologist believes has been caused by these meds.

After 2 years on ADT and 18 months on Zytiga, hubby decided to stop these meds; he feels better and has more energy, even though it's still not much energy, it's more. Stopped Zytiga 5 weeks ago and will not have the ADT injection scheduled for April.

We are keeping our fingers and everything else crossed that the Proton did its job. His PSA has been >0.06 for over a year but testosterone never stayed very low--below 20 but never way down--actually only 6 after stopping Zytiga which makes no sense.

Wishing only good news for you and your husband--IF Proton is available near you, we would highly recommend it. Best of luck in this journey

[ToryCarlisle in reply to KAgolf]

Thank you so much for your response. It's all so confusing right now. I kind of wish docs would just say, "Do this." Hope your husband continues to have good PSA scores and feels well. Take care, and thanks again!

[KAgolf in reply to ToryCarlisle]

how did oncologist app't. go? IS proton therapy available near you?

wishing you both the best and remember, you have to be your own advocate in everything medical.

[ToryCarlisle in reply to KAgolf]

Thank you. He had a prostatectomy a few weeks ago. (Proton therapy was a no go for him.) Results mostly positive. Downgraded the Gleason from a 9 to 7 (4+3), margins clean, no lymph node involvement. But report did note cribriform glands and intraductal carcinoma, so waiting to learn more about what that means moving forward. Follow up with surgeon next week. Thanks.