update ... RU newly diagnosed and confused

NYguy99

Just finished my SBRX MSK Precise (5 doses of radiation) yesterday. Been on orgovyx since Nov 1st, so far no side effects. Blood test for PSA, testosterone, etc done also, awaiting results. Next schedule visit and PSA test is May (three months after ADT is finished). A quick note … for anyone undergoing radiation and is afraid to add ADT due to the side effects, read into orgovyx, daily pill for 4 months. I was hesitant to add it in, but in consultation with doctor, we agreed I could simply stop taking the pill if the side effects were bad. Glad I added it in. Reminder, I was 4+3. When discussing the ADT, my Polaris results recommended single therapy, no ADT. 10 yr recurrence drops from 6% to 3% with ADT. But the main line from the doctor that convinced me to add it in ….. With 4+3, I recommend adding it. I am trying to CURE you, not just put the cancer into remission.

NYguy99

Forgot to add …so far just mildly tired after 4th dosage. Urinary stream a little weaker, told to take advil for 10 days to help with the swelling. No sex drive, but that is mostly mental from going thru all of this. Overall very happy so far.

Clevelandguy

Hi,

First off your title says you are confused? The course of treatment you have taken will take many months/years to determine if your cancer is in remission. You will always have a PSA # due to the fact that you still have live Prostate tissue. The goal should be consistent readings with future PSA tests with non increasing PSA, it will fluctuate some but level out at a average value. The ADT drug will not kill your cancer but weaken it and slow down it’s growth. In my humble non medical opinion you are never cured of Prostate cancer but hopefully very long remission. Even with surgery I do not consider myself cured, I am surprised your doctor said what he said. All of us survivors live month to month year to year waiting for our next PSA test results. Hopefully you will be in remission also with flat line consistent test results, good luck. I don’t try to let my cancer change my lifestyle, keep active and keep on keeping on.

Dave 3+4

NYguy99

https://csn.cancer.org/discussion/comment/1719545#Comment_1719545

Hi Dave. I meant for this post to be an update on my original post. I now realize I didn't use the word confused in my original post. My original post was recap on the misinformation I received during my consultations. I understand exactly what you mean about remission. With my prostate still in, it is very possible for some of those current cells to turn cancerous. The main point of my update was to help people understand ADT therapy. I had read about the bad side effects and wanted no part of it, especially with the Polaris report recommending skipping it. The first cancer center I went to never even mentioned the pill, only the shot. I basically took what my doctor said as meaning lets throw the kitchen sink at this and try our best to eliminate this being an issue in the future. Thanks for your input. Good luck to us all.

Josephg

As Dave indicated above, terms can be very important in setting expectations for folks with PCa, or any other type of cancer, for that matter. The term 'cure' is an illusionary term when applied to PCa in my non-medical opinion, and can cause serious distress in folks with PCa, who take this term literally. For folks who believe that they are cured, only to find they have a recurrence 3 years later, this can be a devastating sequence of events, one that often leads to serious mental and emotional issues, in addition to the core medical issues themselves.

That is why you don't see the terms 'cancer-free' 'no cancer', 'cure', or similar assessments when receiving PSA test results. There is either a non-zero number, or a '<X' or an 'undetectable' connotation noted when delivering PSA results. The same rationale is applied to biopsy, MRI and PET scan results, when they read 'no PCa detected', and not 'cancer-free'.

For most folks with PCa, it is a lifelong journey, which may have one or more recurrences across their lifespans. Of course, we all hope that there won't be any recurrences across our lifespans, and for those whose PCa journeys take that direction and outcome, they are indeed very fortunate. For myself as a PCa survivor for well over a decade, I've had a non-successful surgery, two radiation and hormone treatment cycles with the last one being a diagnosed as a local metastasis, and I am currently in an 'undetectable' status. I have no illusions that I am 'cured', and I won't be totally surprised or devastated if I have another PCa recurrence in the future, as I know that PCa is a journey and not an occurrence.

I wish you all the best of outcomes on your PCa journeys.

Old Salt

https://csn.cancer.org/discussion/comment/1719559#Comment_1719559

Well said! Even doctors make this mistake (using the word CURE); perhaps to put their patients in a better mood. But it's a fallacy.

When appropriate, the abbreviation NED can be used (No EVIDENCE of Disease) for the 'lucky' ones.