50 yo birthday physical measured PSA at 3.89 May 2019, follow up test at 6 months was 6.44. Referred to urologist had 4k 40% and 3t mpMRI showing 1 PI-RADS 4 lesion right apex 1.1x1cm. Biopsy results today stunned me when they came back all positive cores 4+5=9 and almost entire prostate malignant. Bone and CT scans scheduled for Friday. Going to see urologist/oncologist at Vanderbilt University medical center next Wednesday. Not sure what to expect or how to proceed. Not sure I have a lot of time to get multiple opinions either.
Anyone have any advice? Am I completely screwed?
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Jpl506
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That is a very shocking finding. As far as you know now, it is curable. These low PSA types are tricky. I suggest you get a second opinion on the biopsy slides from Epstein's lab at Johns Hopkins.
What will give you more time is a shot of Lupron after you've had your bone scan/CT. If you opt for any kind of radiation, you will need a Lupron shot anyway (radiation begins about 2 months after the shot). Lupron should stop the cancer in its tracks for now.
Assuming no metastases are found, the kind of therapy with the best track record of success (much better than surgery or external beam radiation) is a kind of radiation where they apply external beam radiation to a larger area and give the prostate an extra boost of radiation with brachytherapy (seeds). This is especially important for a young man like you.
I think Vanderbilt now offers brachy boost therapy. If not, I know you can get it from Gregory Merrick at Wheeling Hospital in WV. I believe that it may also be available from the U. of Alabama Birmingham.
Thank you for your reply and your kind words. My slides are already supposed to have made it to Hopkins for a 2nd opinion although I’m not sure of my chances for a downgrade given the amount of high grade cancer that was diagnosed in the initial path report. Hope springs eternal though!
Vandy does indeed offer brachy, both H and LDR although I’m not sure if one is better than the other.
I’ve read horror stories about Lupron but I’ve also read stories from men who were blasé about the whole experience. Not sure what to expect but if it stops the cancer I’ll deal with it.
I could have gone to UAB or Vandy and UAB is actually closer but I have no way of judging the quality of care I could expect at either place so I went with Vandy because my sister is close by.
Welcome to the group. The weeks after first diagnosis is a really stressful time. You should really think carefully about your options. While not that common in the US, ask about a PSMA PET scan to see if the cancer has spread. Our thoughts are with you. All the very best.
Have the PSMA scan before you have the Lupron as Lupron will effect the scan Learned that here as I had the shot and they will not do the scan
Jumped through all the hoops in the States and came to Europe, Netherlands for second opinion.
Brought my medical records and copies of scans with me
Been here three weeks. Had marker implants yesterday. Have CT scan today to confirm location of markers and sync location to computer for treatments that start next week. Only doing 7 treatments
I would have had to wait until April or May in the States
FYI I am a resident in Netherlands and carry Dutch health insurance
So far my testing in the states, without treatments, has exceeded the total costs of treatments here
Good Luck
As my brother, also fighting PCa says "Be the hammer not the nail.
I've have had similar findings; only good news so far is tha my Abdomen/Pelvis CT Scan and Whole Body came out negative, so there's hope. I am proceeding as Tall_Allen suggested: IMRT+BT+ADT (Lupron) and Pelvis Radiation. I am finding that diet and exercise is recommended to better deal with the adverse effects of ADT.
I did not choose RP because nerve sparing was not a choice, so I was facing perpetual Ed, plus the incontinence associated with surgery - and the chance that I would need radiation afterwards anyways. Did your T3 show EPE?
Thank you for your reply and encouragement. The research I’ve been doing myself also confirms Tall Allen’s approach. I’m meeting for my initial visit with a treatment team next week to discuss my options but they seem pretty limited. I’m also fearful of spending much time getting alternate opinions lest the cancer spread even more.
My MRI was read by the chair of radiology at a comprehensive cancer center and he stated that ECE was “suspected”. I’m having my bone and CT scans this morning and I hope they don’t show any metastasis.
What diet and exercise plan are you following? Has it helped? Any other advice you can offer?
My urologist told me - before my Scan/Whole body - that he did not expect to find metastases with my 6.67 PSA; he was right.
I haven't started treatment yet; I'll get the Lupron in 2 or 3 weeks. I work out regularly at the gym 3 times weekly, and done so for 30 years. 2 hours resistance, 30 minutes aerobics per session. While I may have to modify things if or when I experience the ADT side effects, I plan to keep at it.
My diet is almost Mediterranean; I will reduce carbs and red meat to adjust and keep current weight. Also, I will supplement with Vitamin D and calcium to keep the bones healthy. It is not going to be fun, but the alternative is out of the question. Here are a couple of links I found helpful.
Started with Lupron then External beam followed by low dose Brachytherapy. Last checkup in January and PSA was undetectable and remain on Lupron every 6 months. No major side effects from radiation but have fatigue and hot flashes from the Lupron. Something I can manage and live with. You can handle this.
Bone and CT scans were both normal with no abnormalities detected. Sure it’s not a PSMA scan but since it’s the first good news I’ve gotten on a test result in 3 months I’ll take it.
Thank you all for your advice, thoughtfulness, encouragement, and kind words.
Glad you had good news. Have you decided on treatment? I got my first Lupron shot last week. To my surprise, PSA was at 10.5 - from 6.67 in November 2019, so I am glad I got the therapy started sooner than later. Good luck.
I had originally, and am still inclined to, go with brachy boost, provided I can get the treatment. The rad onc at Vanderbilt recommend high dose IGRT + ADT but I’m not comfortable with that plan. Getting second opinions during COVID 19 seems to be difficult though. I was told that The University of Alabama does a good amount of BBT but they aren’t accepting new patients due to COVID restrictions. Getting the first ADT shot eases my mind somewhat though because at least it feels like I’ve started.
I should start IGRT (including whole pelvis RT) in two or three months at Mass General to be followed by HDR BT, probably at Dana Farber. Can't wait to get going and hope the darn COVID doesn't get in way of scheduling things. In the meantime, I'm working from home and my gym is closed - so bought a rowing machine and dumbells to work out in the basement.
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