This is pretty much a copy of our profile update as I can't write it any other way.
Where we're at as a family - both of the kids know now. Son (BoyChild or BD) was told just before we had a week away in Northumberland at start of August. He's 19, just got into his first choice Uni so off on his adventures mid Sept. Coping well with news. Daughter (DarlingDaughter or DD) told a week ago after she'd got home from a months charity work in Ecuador. She's 17, mid sixth form, a worrier but coping ok. Husband, B, is amazing. Nuff said! We're a close family who talk lots & are v close. We're strong, thank god.
Today we got the results of the MRI, biopsies & Bone Scan & tbh my head is spinning.
MRI shows lymph node involvement in the pelvis.
Biopsies had 80-92% of each of 12 cores positive for cancer, Gleason score 4+5 so 9. Spread to seminal vesicles but not bladder etc.
Bone scan was the biggest shock. Mets pretty much everywhere except right arm, most of legs & lower left arm. Pelvis shows symphysis pubis bilateral mets with right upper & lower rami all black. Iliac crest also bad with other mets throughout. Whole spine showing mets inc cervical spine. Rib mets both sides (I keep trying to count them but loose my sh*t each time). Both scapular, both shoulder joints. Clavicals both black on Scan. Concern re left upper humerus as large mass showing so further scans to assess as 'impending fracture' site. Also possible met in head of right femur.
So we're in shock. Kind of expected mets in hip & possible shoulders as he's had what were treated as two frozen shoulders over recent years & hip pain, but the extent of mets has floored us.
Next steps - referral to Onco to talk about chemo. Chest & abdominal CT's or MRI's to look at lymph nodes & closer look at left humerus (naturally, OH is left handed!). Continue with HT every three months, so next lot mid October. PSA levels checked with HT so no news yet.
Had hoped, with admittedly no basis, that HT would be enough for years.
Positives - pain has reduced greatly since HT started & he's more energetic than he has been all year, so not falling asleep at 7.30 every evening. Most of the time he feels absolutely fine so hard to fathom that he has advanced cancer. Not really asking questions but welcome any comments with thanks.