My husband is stage 1, cancer he wait 5 months for second opinion.

@keithl56 I hope you get into the trial.
We got notice today that they sent the records to Johns Hopkins. Hopefully, they will triage my husband and he will get in earlier.

@jim18 he is interested in finding out more about Brachytherapy and the focal treatments. All his urologist said was that he does surgery, or he could send him to a radiologist. That’s when my husband said he wanted to go to JH.

@jneylon

Thanks. They can take a while to get an appointment, but once you have biopsy results it is more likely to get in sooner. What impressed me was that at my first visit they said "we aren't going to treat your cancer, we are going to cure it". They are at the forefront of technology and can provide many treatment options with their team approach. I may have had a little help getting in since I already had a cardiologist there.

I got another blow this Tuesday when I got a positive colon cancer test, and now have to see a gastroenterologist next Tuesday to simultaneously handle both situations at once. My doctors said that it is unlikely that the prostate cancer metastasized to the colon, and there is a 10% chance that colon cancer test may be a false positive. Fingers crossed.

Good luck.

@keithl56 crossing my fingers for you, and hoping the colon test is wrong.

@jneylon

With PNI, it might be helpful to contact any center of excellence for a faster Telehealth second opinion. I never felt time lapses benefited any patient as doctors cannot predict growth rates for YOUR husband and timing of further perennial invasion.

@bens1 the PNI has me concerned. The doctor just sent all my husband’s records to JH. Hoping we hear from them Monday with an earlier appointment.

@jneylon
A high percentage of prostate cancer cases have PNI. I find that more common than anything else.

I had that 16 years ago when mine was detected.

The NCI said that they pretty much ignore that, It does not cause aggressive cancer, in the vast majority of cases.

@jeffmarc thank you! That makes me feel better.

I have stage 3 Gleason 8 had radical prostectomy initially told they got all cancer but right away said I should see radiation oncologist and medical oncologist which surprised me because they said they got it all. Saw medical oncologist she recommended Lupron therapy gave me very little info about side affects very minimal things, fatigue, low sex drive, hot flashes, breat tenderness, and change of moods, and I thought I could deal with those things. My advanced prostate cancer as they described would need six months of hormone therapy followed by three months of radiation, I had a tumor in my spine of unknown origin and didn't offer me any medication like Bicalutamide (which prevents tumor flare) or didn't offer other hormone treatment that doesn't cause tumor flare which Lupron is known for, never told me about any of the horrible and life threatening side effects especially for someone like me with a known tumor in my spine. I without knowing anything about tumor flare caused by Lupron agreed to have Lupron therapy and within two weeks I was in severe pain begging for help and the medical oncologist basically ignored me told me to see my P.C.P. which shocked me but I did and she tried to help and prescribed pain meds but the pain was to severe the spinal tumor was growing and spinal compression was getting more serious, I called medical oncologist many many times looking for help I live in Maine had cancer treatment in Boston and she told me to go to Maine Medical Center which was hour and forty minutes and I didn't feel confident going there thats why I had treatment in Boston, finally my son came to Maine and brought me to Massachusetts General Hospital where I was received Lupron therapy, went to E.R. had B.P. of 260 over 145 severe pain my medical oncologist never reached to me or did anything to help me, she could have administered Bicalutamide even at that point which would have shrunk tumor and help mitigate some of the damage but she chose to ignore me even though I was in hospital where she works for eight days, ended up having spinal fusion and in I.C.U. for ten days and still never heard from oncologist after the fact I found out that had she stepped up and said she didn't give anti flare medication and that the tumor would shrink back to the size it was before Lupron, also it was Asymptomatic and was bothering me it had grown ten millimeters in fifteen years yet it grew six millimeters in thirty eight days following the Lupron shot, the surgery ultimately wasn't needed but I had it because nobody at MGH told me tumor was shrinking as proven by several MRI'S and other testing I had to delay the radiation treatment for advanced cancer and now suffer severe pain, difficulty walking and many other problems. I suspected the oncologist was trying to pawn me off on to other Dr's so she could say that I left her practice and she's not responsible for my condition and the reason I believe that is because she goes on trial in Middlesex Superior court starting in September of 2026 for the wrongful death of a 22 year beautiful young woman. There is much more to this story but I know I've already been to long winded. If anyone else had Lupron therapy and was NEVER told any of the serious side effects maybe this is helpfu

Once you’ve had Lupron getting a Casodex isn’t gonna help you. The flare would’ve already happened and settled back down after a few weeks.

If you were to get a second drug because you have an aggressive case They would give you an ARPI and it would probably be abiraterone.

If they didn’t tell you about needing Casodex before the Lupron shot, they are not competent to handle your treatment.

If you wanna find an Oncologist who would really care about treating you you need to go here and see this doctor. You will find a totally different type of treatment.

Atish D. Choudhury, MD, PhD GU Oncologist
Dana Farber Boston

You don’t mention anything specifically about your prostate cancer case.
What was your Gleason score? What was your PSA diagnosis?.
Did you get any tests like a decipher test, ArteraAI or Prolaris To find out your chance of reoccurrence.

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.