Unidentified Pain

**HopeinTN** · 10-09-2013, 02:20 PM

I made it thru waiting 3 more months for the follow-up CT. Unfortunately, the area they are watching has indeed continued growing. I had a PET scan today to make sure nothing else is going on and I will get the results tomorrow when I meet with the surgeon. He is recommending we go ahead and schedule another open lung biopsy. He’s not comfortable with the growth rate over the last 15 months. Keep in mind, I’m still on CTX, and on month 24.

I’ll have more news tomorrow.

Take care All!

**annekat** · 10-09-2013, 02:26 PM

I'd been wondering how you were doing, Katrina. Sorry to hear that thing is still growing and that they think you need a lung biopsy. That is such a long time to be on CTX... I hope what they find will shed some light on whether that is still justified. I'll be looking forward to hearing what more you find out.

**Alysia** · 10-10-2013, 04:38 AM

Hi Katina,
I am sorry to hear about the growing of that area. I hope your docs can handle it asap. good luck tomorow !

**Debbie C** · 10-10-2013, 12:49 PM

Katrina, I have been wondering where you have been. This is just ridiculous that you have been on CTX for 2 years and things are getting worse. Are you able to go to another dr or even up to the Cleveland Clinic for another opinion on your meds ? Good luck tomorrow,I hope you don't have to have another biopsy ( had one too and it's no picnic )

**HopeinTN** · 10-11-2013, 11:30 AM

Hey gang! The place that is getting bigger lit up on the PET Scan along with lymph nodes in my chest. The surgeon for sure what’s to go in an get a look. Apparently inflammation or infection lights up and not just cancer. He’s not worried about cancer but we need to know what’s going on.

The surgery is 10/29. He will first remove the lymph nodes in my chest with a small cut at the top of my chest and if they do not show any signs of cancer he will go into my lung thru the same scar. It will be first with the camera and if scar tissue doesn’t allow that to work properly, the a small cut. This all sounds familiar, but I hoping the difference this time is I keep the remaining lung I have.

I did see Dr. SEO at Johns Hopkins back in February and he said he thought I could stop the meds but talked with my docs and they decided to stay on the treatment plan. I was set to get off the meds about 8-10 months ago but the spot on the right lung started showing up and has since, more than doubled.

I can’t help but think that it’s disease activity and time for another plan.

Thanks all!

**Debbie C** · 10-11-2013, 02:02 PM

Katrina, I'm so sorry to hear you have to go thru that. Does Dr. Seo know whats happening now? I am just so surprised that they have not done anything different with you in so long and now this. If inflamation lights up has your sed. rate gone up ? Maybe there is no infection just inflamation. How much of your lung did they take the first time. When I had mine done , it was a partial right middle lobectomy. Hopefully they can go into the same spot. And thank God its not cancer. I will keep you in my prayers and hope by removing everything ...the lymph nodes and the nodule things will start getting better.

**HopeinTN** · 10-11-2013, 02:31 PM

I haven't followed up with Dr. Seo and may consider doing that. The first surgery was a rt middle lobectomy and partial upper and yes, he can go in the thru the scar. My SED and CRP have been elevated but I've been told that could be many different things causing that.

Thanks Debra.

**drz** · 10-11-2013, 06:26 PM

Originally Posted by HopeinTN

I made it thru waiting 3 more months for the follow-up CT. Unfortunately, the area they are watching has indeed continued growing. I had a PET scan today to make sure nothing else is going on and I will get the results tomorrow when I meet with the surgeon. He is recommending we go ahead and schedule another open lung biopsy. He’s not comfortable with the growth rate over the last 15 months. Keep in mind, I’m still on CTX, and on month 24.

I’ll have more news tomorrow.

Take care All!

Thanks for the update. Keep us posted.