“Bending the rules” surgery scheduled

Hi Suzette – I’m happy to share anything and everything I know and have had done if it is of use to someone. Here is my e-mail: suzannegm@windstream.net. I look forward to hearing from her.

Here is my timeline, all done at Emory:

-July 2008: diagnosed (from the time the tumors were seen on CT scan until biospy and diagnosis was 3 days including the weekend) – left lobe of liver completely consumed by tumors
-August 2008: had a colonoscopy, upper endoscopy to make sure there was nothing going on. then the failed resection attempt – tumors found on right side. they just closed me back up.
-September 2008: started chemo – gemzar & cisplatin
-November 2008: follow up scans showed no change in size of tumors, no smaller but no progression either
-December 2008 – conferred with Dr. Kim regarding radio/chemo embolization. He is interventional radiologist who actually ended up putting me together with Dr. Kooby
-January 2009 – had liver arteriogram (aka shunt study) done in advance of radio-embolization – it’s at this time that Dr. Kim tells me that he went before the Emory tumor board to find a surgeon willing to talk to me about resection. Dr. Kooby enters the picture. I owe a HUGE debt of gratitude to Dr. Kim for doing this.

I then met with Dr. Kooby, who made no promises but thought there was a chance. I then had a PET scan, which along with the liver arteriogram, and CT scan gave Dr. Kooby a good idea that nothing else was hiding inside, but again they don’t know for sure until they get in. He did tell me that if they opened me up and found any cancer outside the liver that they would not resect. I knew going into this there was a chance of another failed resection but I had to try. My surgery was Feb 18, and I was in the hospital for 13 days. I saw Dr. Kooby on March 20 and he says I am recovering ahead of schedule. I had a left lobe resection, a right lobe wedge resection, gallbladder removed, and a small portion of my left diaphragm removed, all with clean margins.

Dr. Kooby is an amazing doctor, and person. He’s soft spoken but very sure of his skill and what he can do. I met Dr. Staley 2 or 3 times in the hospital when he made rounds. He is very boistrous (spelled wrong). Personally, I prefer Dr. Kooby’s style.

Since your sister is in Macon, and Emory (Winship Cancer Institute) is so close, I would encourage her to talk to Dr. Kooby. Also, I see Dr. John Kauh, my oncologist. I get my chemo close to home but it is dictated by Dr. Kauh.

Based on what I’ve seen on this website, and other people’s experiences and treatments, I’ve found that Emory offers the same treatments and care that the Mayo clinic, MD Anderson and Johns Hopkins offers. I feel VERY comfortable that I am getting comparable treatment at Emory/Winship, without having to leave home.

I hope this helps, and if you have any questions, no matter what they are, please ask. Hang in there with your sister, this is a long road, and you will both need each other. Tell Kim to e-mail me whenever she’s ready.

Hi Foodie – Suzanne here. I’m sorry to hear about your sister, our situations seem to be very similar, I’m 43. My surgery was done at Emory, the surgeon is Dr. David Kooby. He’s a surgical oncologist. It’s been a long road to where I am now. I was diagnosed in July 2008, then went through a failed resection attempt and then about 5 months of chemo before I was referred to Dr. Kooby. I was getting ready to have radio-embolization when the interventional radiologist went before the tumor board at Emory to see if there was a doctor willing to try resection, even though I had tumors on both sides of my liver. My left lobe was entirely consumed by tumors, and I had 2 smaller tumors on my right side. This is where Dr. Kooby enters the picture. He agreed to try to resect based on my overall good health (other than cancer!), and that the tumors had remained stable (no progression) since my diagnosis. However he was very clear there was only a 50/50 chance he would be able to resect once they opened me up, also with no way to know if the cancer will come back and/or how quickly. I was left with about 25% of my liver. My recovery is going very well. I hope this helps. Please keep me posted on how your sister is doing.

Well, It’s me, live and in person! I finally made it down to the computer today. I was released from the hospital on March 3. 2 weeks in the hospital was MORE than enough!

I can’t thank everyone enough for the positive posts sent my way after my sister let everyone know the surgery was successful. I don’t know what I would do without her, or without this website.

I’m still having some eating issues. Getting enough protein is a hard one for me. Does anyone have any suggestions? I do have to eat every couple of hours, and I need solid food but I’m having a tough time finding foods that will go down without effort. It feels like I have a small air bubble at the base of my throat. I don’t know if this has something to do with the tube they had to put down my throat into my stomach while I was in the hospital. It doesn’t burn like acid reflux but it is definitely something. I don’t see my doc until March 27, which is when I will get the staples removed.

I’m hoping to not lose too much more weight. I can’t really afford it right now.

My entire family is SO happy the surgery was a success. Now I just have to recover and get on with my life!