So, here is my question: Boyfriend w/ Stage IV BOT, HPV +, diagnosed 12/11, no distant mets, teeth out, 35 RT begun Jan 2012 concurrent w/ cisplatin x 3, neck dissection May 2012. Lost more than 70 lb despite PEG, which has been out x 4 mo. PET clear. Undergoing PT to improve mobility / function after surgery & leading to some pain while regaining function, now eating well, energy level maybe 85% of pre-CA, working physically demanding job, has only regained 4 lb. Had occasional issue with erectile dysfunction prior to diagnosis but sex life generally lovely. Now, despite dramatic gains in past 3 months in all other arenas, ED is constant. Have reviewed all meds (some ibuprofen, levothyroxine, Trental, Vit D.) which don't seem to be contributors. Suspect this is mainly profound weight loss plus body image issues related to weight loss & CA diagnosis, plus stress of re-entry to post-CA life. Fear of permanent loss of sexual function for both of us. Me feeling rejected despite intellectual understanding that ED doesn't reflect on his attraction to me, but emotional experience of feeling unwanted. Wondering if anyone has had a similar experience. Not sure how to approach / support...

Welcome to OCF! Many members will take a full 2 years to recover fully. Some will never return to their original pre-cancer state. Your boyfriend still has a heck of alot of recovering to do. If he is able to work a full time strenuous job then all his energy is going into that. He had massive weight loss which means he lost alot of muscle, not just extra weight. As a fellow survivor, I can say he has gone thru heck and its probably taking everything he has to appear like he is back to normal. His calories should still be high, 2500 a day with high protein to help rebuild his body. He needs this to recover, maybe even more since he works a physical job.

Many oral cancer patients will have thyroid issues after going thru radiation. From what has been discussed on the forum previously, some men will also have low testosterone issues. I would suggest your boyfriend talk this over with his family physician.

Many caregivers will need their own support after taking care of their loved one. Its a long road for both of you. Some seek out therapists or support groups. We even have a special tab for caregivers here so they can open up and talk about their experiences and problems. Some caregivers will need anxiety meds to get them thru the worst of it and some will need them for a longer period of time. Maybe one of these options would be beneficial to you.

Best wishes to you both

In addition to the good advice from Christine , it is not uncommon for post Tx oral cancer patients to suffer from depression so it may be worth while, after eliminating medically caused possibilities, to consider seeking counseling. While this topic is not discussed very often on this site, I have had a similiar discussion with only one other patient with the same complaint in the time I've been on this site. I would start with a blood workup and see where that leads.