New to the Group, G9, CHEK2c.1100 inherited, suspected but unproven de novo oligometastatic with inconclusive staging work-up

[Milkweed]

Hi all,

Sorry to be here but grateful that you are here to support and inform me. I’ve been reading posts every night for a while. I’m a generally fit and healthy 62 year old guy, was diagnosed in January after 3 months of unfortunately misdirected management on prolonged antibiotics as prostatitis. G9 (4+5 in 2 cores, 4+3 in 9, 12/12 positive adenocarcinoma. PSA 9.2 at diagnosis, was 7.6 three months earlier when I presented with acute urinary urgency and frequency, 2.5 at well check December 2017, 0.25 a year before that. DRE was T2c at diagnosis, prostate 32-38ml size, much more disease on left side. I was immediately and concurrently started on bicalutamide and given a 6-month depot shot of Lupron.

Staging work-up has been inconclusive but worrisome. Bone Scan showed a circa 1.2cm bright signal R sacrum, tiny less bright signal L 11th rib. CT didn’t call either of these (though they are there if very carefully looked for), found a defined, relatively dense, 0.7mm nearly round lesion at the L ilium. F18 Axumin to clarify staging was done after I had been on ADT for 3 weeks: no bone uptake, L side of prostate lit up like a fire. Two pelvic lymph nodes were initially read as positive, then on review by more senior radiologists over-read as all normal with no uptake or enlargement. I don’t know what my PSA was when the Axumin scan was done, but it was 1.3 after 5 weeks on ADT, 0.25 after 2 months. Then Multiparametric MRI was done at 6 weeks s/p the biopsy, and all lymph nodes looked normal, no abnormal signal from the left ilium lesion which is felt to be a benign bone island and will be watched, unable to locate the right sacral lesion. Hemorrhage in the left seminal vesicle was found. Decipher Biopsy Score very high risk, luminal adenocarcinoma, relatively high mRNA expression of PDL-2 on the GRID report. Prolaris Biopsy Score concordat at very high risk. Invitae Prostate Panel (blood, genetic) found heterozygous for CHEK2 c.1100 del DNA repair mutation. Case presented at local Tumor Board, I subsequently met with two local medical oncologists, one of whom was present for the presentation. His conclusion was not sure enough of metastatic disease to advocate for or prescribe abiraterone, docetaxel, Radium 223, or other, nor to qualify for oligometastatic de novo clinical trials. Needle biopsy of the anterior sacral lesion was recommended but declined as too dangerous by interventional radiologists. The other oncologist said to blow-off the Decipher and Prolaris information and assume the sacral lesion to be a met, start docetaxel the month after concluding the Brachytherapy. I don’t really get where that advice and timing comes from. The rib lesion is 3mm of slight thickening of the cortex and multiple radiologists think it is an old traumatic incidental finding too small to reliably biopsy but given the context it was treated x 5 with SBRT. Serum calcium and alkaline phosphatase were normal.

I am now in the middle of 28 courses of IMRT TomoTherapy, inclusive of the pelvic lymph nodes, seminal vesicles, and also the sacral lesion as it is in the field adjacent to nodes. Prescribed dose 7240 cGy. I am still taking the bicalutamide but have had conflicting advice on continuing vs discontinuing it at this point. Shortly after I finish the external beam treatments I am scheduled for High Dose Brachytherapy, 2 rounds per day on two days a week or so apart, in May. My radiation oncologist says this will bring the biologically-equivalent dose to well over 8000 cGy.

And then I don’t know. I plan to consult a medical oncologist out of state, feel especially with the CHEK2 mutation I should be on something more systemically, maybe there are clinical trials or off-label possibilities. I am happy to travel, have friends or family at or near UCSF, U Minnesota, Johns Hopkins, Duke, Dana Farber, maybe others. Any thoughts and advice from you here is sought and appreciated. In the meantime, I feel like I am doing pretty well. I have absolutely been all over the place emotionally but am not depressed and am feeling pretty good. I am taking vitamin D3, a broad probiotic supplement since I think the long antibiotic course likely didnt help my gut microbiome any, turmeric, am trying to be mindful of including dietary calcium. I have been vegetarian for 30 years. I am less tired if I hike and get some exercise, have lost a few pounds and a little muscle mass. Zero libido for the past 2 months but I can live with that now, and live is what it’s about for me. I do have recent recurrence of urinary symptoms similar to those I initially presented with, maybe secondary to the radiation therapy? And I have had persistent discomfort at what seems to me must be the prostate/rectum just left of midline ever since the biopsy. Not enough to take ibuprofen for but there. Let me know what you all think!

[Drcrunch]

Wait six months, redo scans and look for increase in signal or size of lesions. Follow alkaline phosphatase for increasing values. I also have Chek 2, but different variant, along with Brca 1. Good response to all standard treatments so far.

[Milkweed in reply to Drcrunch]

Thank you. Seems like the right plan.

[monte1111]

Hi. Too much for me to follow. But I'm easy to confuse anymore. So early into the game best bet is relax and enjoy and see how everything shakes out. Sounds like you are trying to do that. I used to love to hike before I got sucked into the big city. Things will become clearer in a while. Watch out for rattlesnakes, lions and tigers and bears. Enjoy.

[Milkweed in reply to monte1111]

Haha, too much for me to follow, too! All the scans and the different findings and not knowing what that all means is hard. I feel pretty good so far, find that I am getting deeper joy out of every day and have rekindled some meaningful old friendships. I will keep my eyes open for trouble on the trail : ) All the best!