4 years out from the j-pouch procedure, living happily ever after. I thought.
Last CT scan showed a lesion on the pouch. PET showed no activity. Phew. Pouchoscopy followed. Found polyps and one large lesion on the upper part of the pouch, potentially inside and outside, of course on the underside where they can't get to laparascopically with the pelvis in the way. Biopsies taken, MRI ordered.
1. Two complex, multiloculated lesions closely associated with the
J-pouch anastomosis and surgical scar. These correspond to non-FDG avid
foci on prior PET/CT. Appearance is most concerning for implantation of
indolent, mucinous tumor. Correlation with histology is recommended.
Chronic postoperative collections are also considered in the
differential. Fluid/tissue sampling should be considered.
Biopsies come back negative but possibly precancerous adenoma structures visible. Surgeon recommends to take the pouch out and leave me with a perm ileo as "you seem to grow these polyps out of nowhere". So I asked him what the chances were they would come back even without a pouch but with the perm ileo as that is the same tissue. He didn't have the answer. I had been tested neg. for FAP and Lynch a while back.
So here is the 64.000$ question. What to do. After my hesitance to the pouch removal, he suggested to try to scrape the mass out from the inside with another scope and hope to get as much as he can. Then keep MRI'ing the outside of the pouch on a 3 month basis to 'see' if it grows outside. And if needed keep scoping... (Drill baby Drill !!!)
To throw some more drama into the equation... I have to make a decision -literally today- whether I stay with my current employer where I have a ridiculously stressful 24/7 on call job but that employer stood by me 6 years ago during my cancer. Or move to a new employer that gave me a job offer for a non-on-call job that will reduce my stress and anxiety by 80% in the first week and pay more but that I don't know what the employer would do if I have another "C" scare. Health insurance is covered by both.
What to do ??? Sorry to vent...