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ADT/ ORGOVYX Day 45; Told Radiation Is Next
I was diagnosed with Sigmoid Colon Cancer 26 months ago. I had the resection. The colon cancer metastasized to my right lower lung, and 7 weeks after colon surgery, I had a lung wedge resection.
I got through all of that and then I was diagnosed as having hyperthyroidism and Graves Disease. Still taking meds.
And 2 months ago my PSA was climbing, 6,9,10,16 .
My Urologist sent me for an MRI and I was diagnosed as having an aggressive type of Prostate cancer. The Urologist performed the biopsy and shortly after that had a Prostate PET SCAN.
No good news from any of it.
I had a conference with three Oncologists.
Now on ORGOVYX for past 45 days.
Daily hot flashes, joint pain in knees and hips, leg pain, lower back pain,
dizziness, exhaustion, constipation and diarrhea taking turns,
and I have problems walking from leg, hip, knee pain and balance problems. Some 10-12 lbs of weight gain.
Other than that, I'm doing pretty good. NOT!
I'm told that I should remain on ORGOVYX forever perhaps and radiation is up next in 30 days.
I have no idea what I'm doing??
Male,of course; 74, 190 lbs, RADS 5, GLEASON 9, Metastasizing to rectum is predicted but not quite yet.
I learned a lot about my colon, cancer and lungs; thyroid,too.
I can't seem to get a good understanding and knowledge of what this all means. The radiation Oncologist rushes along to avoid my questions.
Thanks to all ! I wish everyone a recovery miracle!!
PAUL
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Undetectable PSA means that I'm still responding very well to Orgovyx, Erleada, and my radiation therapies from 2021/22.
The cancer probably isn't gone (though there's always a small chance, even with my stage 4), but any cancer cells left in my bones or elsewhere are staying dormant. Other blood tests and imaging confirm that there's no detectable progression, though there's unlikely to be in any case as long as my PSA is effectively 0.
Your mileage may vary, as they say, but there's no reason to feel like you just heard your death sentence. ♥️
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2 Reactions1) My cancer has yet to metastasize.
2) And orgovyx is obviously working.
3) And flomax solved the weak-stream problem.
*) Can I skip prostate radiation for awhile or indefinitely delay it ?
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1 ReactionNo one here should give medical advice ("you ought to…"). For early-stage cancer, some oncologists believe radiating or removing the "mothership" (the prostate) weakens any yet-to-be-detected spread, making it harder for it to grow into a large tumour, while others believe that radiation or a prostatectomy for early-stage PCa are an unnecessary intervention.
Ask your oncologist to walk you through the pros and cons of both approaches for *your specific case,* and also ask them how safe it is to take some time deciding.
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2 ReactionsNO!
Sorry Paul - the damn thing got sent before I was done!
My RO just told me 2 weeks ago that just because the ADT brings the PSA Close to zero does not mean that your cancer is being killed off - It is just not actively growing and producing MORE PSA. You need the radiation to kill it completely.
He said that some men make the mistake of foregoing radiation only to have the cancer come back even stronger and not be as responsive to the hormones. Just my two cents….well, his actually…
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1 ReactionThis is my second attempt to post a reply ....
I get it all composed and when I hit the reply button, it disappears.
The site is especially annoying when I'm doing this while having hot flashes!
Anyway, thank you, Phil.
It was wishful thinking on my part, as I am really. really hesitant and worried about radiation.
I am struggling with my choices and decisions because there's really nothing good to choose from.
The MRIDIAN- LINAC guided radiation seems like a better consideration than others.
I haven't seen much mention of it here??
Thank you, Phil !
I am PAUL in Indianapolis.
I am a patient of Community Health Network/ MD ANDERSON Cancer Center-North.
Hey Paul, trust me - I don’t want it either. As a dentist for 42 years, I hid behind a wall whenever I took x-rays. Not only is it a state law here in New York, but it’s for your own well-being. Now I’m going to voluntarily put myself on a table and get exposed to a massive amount of ionizing radiation. Ironic, isn’t it?
Anyway, if you can have the Linac that is a great option - even better than Cyberknife because it uses
MRI visualization instead of CAT technology to radiate the area. The result is much less damage to the surrounding tissues. Don’t get me wrong, Cyberknife is excellent but MRI Linac even better.
However, it’s not really an option if you have any cells outside the prostate and the surrounding area - for this you need IMRT which is what I will be getting. It targets everything from the head of the femur to perhaps just below the navel. They give a higher dose, of course, to the prostate and involved structures since that is the ‘fort’ the tumor is inside of. Not very technical but I am sure some of our friends here on the board can post some YouTube URLs to give you a better explanation.
You are 74 and have had other issues so surgery might not be what you want but I don’t know your mindset. Just know that the outcomes (successes AND failures) for surgery vs radiation is about the same after 10 yrs or maybe a bit more since the study was done.
Best of luck to you and if I can repeat the sentiments of others, you came to the right place for help!!!
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2 Reactions@paul28 — you can go back and edit a post for a limited time (I think an hour) after you've sent it. Just select the three dots below the message. If "Edit" appears as an option, then you're still inside the time window.
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