this past thursday, i went to meet with my radio onc. he told me that i was his most knowledgeable patient in the area of PCa he's had in a long time. i attribute that to all of you who've been a huge help to me. so, anyhow, i went to discuss radiation therapy in more detail, esp. after i told him john epstein downgraded my PSA to low grade G6, plus the bone scan showed no evidence of spreading. based off of that information we discussed whether or not i should do either AS or brachtherapy alone. once he found out i hadn't been tested for my PSA since last year, he wanted to order another PSA and told me that if it's like a 20, he'd suggest hormone therapy along with radiation.
well, he call'd me back, with the results, he says my PSA 18.67 and bein' this high is cause to put me in the unfavorable intermediate risk category. he recommends a one time injection of eligard, in combination with external beam and possibly brachy-therapy. he said he will talk with some other urologists about my situation to make sure everyone is on the same page. i'm supposed to get back with him wednesday. what do you guys think of eligard? i'm feeling down and sad.
what type of impact will this have on my overall prognosis?
should i consider surgery instead?
is the cancer getting worse, because of no treatment just yet? i have no idea what to think. what R your thoughts? i'm scared U guys.
Below is my signature
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D.O.B. 1973
07/14 PSA 5.5
08/14 TRUS Bx Prostatitis & BPH
07/15 PSA 5.9
01/16 PSA 7.6
03/16 PSA 6.2
07/16 PSA 6.9
10/16 PSA 6.9
03/17 PSA 7.2
05/17 3T MRI Good
11/17 PSA 7.7
11/18 PSA 10.8 Cipro for 2 wks
07/18 PSA 11.9
08/18 3T MRI: 3 per ZN focal ABN, 1 with a PI-RADS 4 lesion & 2 with PI-RADS 3 lesions. No extra PCa disease, pelvic LAD, or pelvic lesions
02/19 MRI fusion biopsy
Bx Findings
A. PROSTATE, LESION 1, LEFT APEX, 3D MRI FUSION BIOPSIES: * BENIGN
B. LESION 2, RIGHT MID GLAND *PCa, GS 4+3=7 (GRADE GRP 3) 3 OF 3 CORES
(95% DISCONTINUOUS, <5%, <5%) * GS GRADE 4 60% OF THE TUMOR
0 PERINEURAL INVASION IS PRESENT
INFLAMMATION.
C. LESION 3, DIFFUSE LEFT MID GLAND, 3D MRI FUSION NEEDLE CORE BX's
PCa, GS 3+4=7 (GRADE GRP. 2) LESS THAN 5% OF THE FRAGMENTED CORES
GS GRADE 4 INVOLVES 5% OF THE TUMOR
2nd Bx OPINION
A. Benign
B. PCa, GS 3+3=6 (Grade Grp. 1) 80% of 1 core
C. PCa, GS 3+3=6 (Grade Grp. 1) 20% of 1 core
Considering options
Written by
Arthro92
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Your fear is understandable. I said a prayer for God to bring you calm and guide your decision making. It is my understanding that all options should at least be considered (including surgery) but, that each persons decision will be based on their specific situation and view of the risks and side effects. I have been listening to Dr Walsh’s book which has been very helpful regarding treatment options but, our doctors should discuss all of the options as it pertains to our specific situation.
What did Epstein say about the findings of inflammation and PNI? If your elevated PSA is due to inflammation, you might not want to treat it as unfavorable intermediate risk based solely on that. Most prostatitis is unresponsive to Cipro. You just have to wait it out if it's that - it often remits on its own.
- ? Second read on MRI(s). (I used Mayo; they dx’d high suspicion of cancer & confirmed with Bx; it would have been missed with traditional Bx because of unusual location). 7 of 7 crossfires were positive, others negative.
Your reactions are completely appropriate and understandable. You're not alone. I suspect all of us have had your feelings and thoughts.
Apart from the medical/physical things you have to deal with, the emotional roller coaster of PC is a BITCH! Our situations sound similar. In a nutshell: 7 yrs on AS at Hopkins; PSA rose to 22; uro recommended treatment; opted for trifecta of ADT (Firmagon x 1 mo and then Lupron for 9 mos - just got last injection, I hope - of 3 mos duration each), 25 fractions/sessions of EBRT (external beam), and brachyboost. ADT as neoadjuvant and adjuvant. Most recent PSA was 0.03 and testosterone was <10.
For me, the ADT was devastating (far beyond what the docs described). In addition to the physical changes and impact, the emotional aspects were awful: depression, despair, crying jags for no apparent reason, emotional volatility, and persistent fatigue. Very difficult to keep telling myself "it's just the drug, it's just the drug." I mentioned physical issues often brought on by ADT. I have had most of them: no sex drive, wt gain, BP increase, bone density issues, aching joints, hot flashes that wake me at night and make general fatigue even worse, shrinking testicles (oh joy), cognitive slowness, and so on.
Despite all of this, radiation was the right decision for me. The procedures themselves were non-invasive and the recovery uneventful (this is not to say that I wasn't an emotional wreck, not knowing what to expect and if and when "the other shoe" would drop). Urinary and sexual functioning have not been a big issue for me. Some urinary frequency and urgency (ditto, bowels), and lack of sex drive affects my erections (just not interested but all parts work). Oh, btw, the MaleCare/U of MN rehab study is worth joining.
So, good luck with your decision making. Might I suggest that you read "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." It provides a very readable explanation of what to expect and coping strategies.
Feel free to contact me if you want to discuss in more detail.
Edin -- I'm from Balt., too, and getting care at Hopkins. I'm curious if you've found a support group that you like. I've been a bit reluctant to join one because, honestly, I'm not ready to hear about life with metastatic cancer. Perhaps there are some groups that subdivide into metastatic and non-metastatic like this terrific site does. Also curious if you've looked for and found a therapist you like. I'm somehow managing this journey but could use a little help. I am now three months post-radiation but face another 18 months of ADT and am experiencing some of the effects that you describe (fatigue, mental fog to name two). I figure some will get worse over time. It'd help to get some perspective from a qualified, skilled therapist. This is hard.
Your reaction(s) are normal, seeing as no one wants to hear this kind of news.
I've gone the radiation and ADT route.
Post treatment (2 years was my Dx) has shown me a lot about what one might expect.
My experience with ADT was awful, to say the least, BUT it was a necessary intervention.
I stopped after 16 months (I'm still in withdrawal) but without that treatment, there's no doubt in my mind that it helped me get to an undetectable state (<0.02).
I've been 'there' for 4 consecutive cycles, so I now watch and wait, or just call it a holiday IF and when it returns.
I have a lot of confidence in the radiation treatment that I had. 'They' told me they got it all, although the RO got pissed off when he found out the 'team' had made such an announcement, as part of my exit interview. Note that I was node positive, so the 'pelvic' bed was also treated simultaneously.
One thing I keep reading about is what was 'missed' post RP, that becomes an advanced case that went too far.
Perhaps the stats aren't so bad, when it comes to RP 'failures', but given a choice, I'd avoid the RP and choose something else.
Congratulations on taking ownership of your health situation, doing the research, seeing your doctor(s), getting appropriate dx testing, etc. I have only one comment/question: have you considered RARP? That's what I had done and don't regret it. It is far from side-effect free, but so is radiation therapy. RARP gets the prostate out of there (and nerves can be spared depending on your situation) and to the pathologist to tell you what your Gleason score and tumor REALLY are.
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My own PSA values over time: 70% drop in just 3 months on Dutasteride and no ADT
PSA rising after salvage treatment
Worrying on my psa result
PSA Bounce, Any Suggestions?
My initial MRI and wait time for biopsy
