Hi! Well we are now in our 7th week post tx. Lots of ups and downs but moving forward! Off peg fdgs for past 3weeks, wgt up two lbs! Met his goal for having a steak on his birthday ! ( over 4th of July) it was slow, but he did it ! My concern is seems past few days pain is back to being visibly bothersome, and he had been doing so much better. I can tell its a real effort to get food down. Getting a little worried, my guess this will come and go for awhile? We have a 2mo check this week- will get order for our scan... MD told me they do CT and if anything there, then they do PET. Doesn't it just make more sense to do PET in beginning? And isn't the first scan suppose to be at the 3 mo mark? Worried too early,and not a reliable time or scan at this time.... he is back to work part time, finally got voice back, somewhat hoarse at times, even back to his golf league which he is proud his score is not affected! he will not use GT anymore cause doc said he would not remove until he was off enterals completely and showed a wgt gain...he wants tube out ! I know he is frustrated over the recovery phase... He's doing great basically, but just not happening fast enough for him .

Colleen, the PET is known for too many false positives. It will pick up inflammation and make the scan light up. The CT has far less false positives plus is only a few hundred dollars where a PET is several thousand. This is probably why they are doing the CT first.

Recovery cant happen quickly enough for any patient. Recovering from OC can take a very long time. Since your husband is only 7 weeks post rads, he still has a very long way to go before he has more good days than bad. I think from what you described, he is doing excellent!!! Back to work and his golf league already? Thats way ahead of how most OC patients bounce back. Plus able to do without his feeding tube and gaining a couple pounds. Your husband really has come a very long way with his recovery. A complete recovery can take up to 2 full years. He will continue to have ups and downs for the next few months with the downs gradually becoming less and less.

At the check up, make sure you tell the doc about the swallowing becoming more difficult. He may need the help of a speech pathologist. They can do wonders with exercises to help him with swallowing.

Best wishes with the appointment!

Thanks Christine! Thanks for reply. Yes I know timeline, even emailed it to my husband so he can have realistic expectations. I think he's doing great too!. We actually have an appt with Speech MD on weds as well. Set that appt at our last check up 4 wks ago as concerned then about voice/ swallowing .He wanted to cancel that appt, but PA said to at least go to first consult as they will give him exercises and tips etc. I think he feels shouldn't have any bad days and progress only is what he should be seeing. He's been pretty discouraged with the pain issue. Thx

Recovery is a slow process. At our hospital, they tell us to gauge by thinking about how the patient felt a month ago compared to today, and not how he/she felt last week. Hang in there, the good days will come.

Remember everyone can react differently to this treatment so always keep that in mind.

For me post Tx at first I had many bad days mixed in with a few good days and slowly the good days overtook the bad days until the bad days finally went away. I can't remember when that happened but I will say this recovery can and usually does take every bit of 2 years. Obviously the first year is the most challenging and the first few months of the first year are the worst. Tell him unfortunately he HAS TO BE patient.

Re the CT at 2 months, IMO that's a tad early as this treatment can leave inflammation "spots" that can take months to clear and may cause unnecessary concern if scanned before they heal.

One other thing, some of us experience a damaged Thyroid due to radiation damage which usually takes months post Tx to show up so if he starts to feel tired; feels cold when he shouldn't; feels hot when he shouldn't; has night sweats be sure to have his TSH levels checked with a blood draw. May never happen but if it does it's a simple fix.