Topic: Still in shock...
Hello Everyone! It's been a while since I've posted and wanted to get this ordeal off of my mind. Somehow I feel that if I do this...I can begin some positive thinking! My husband had his right portal vein embolism May 16th for the large tumor in the right lobe of his liver. Cat scan on June 16th showed that cc had spread to another lymph node, enlarged the one already involved, and also had spread to a few of the bile ducts outside of his liver. The left lobe had not reached the size they had wanted but felt they should proceed asap with the resection. June 26th was the day we thought would give us hope on getting a handle on this horrible disease. After three hours in surgery the doctors called me in to state that that there was a hard "gravel" like tumor encasing three structures outside of the liver. The doctors stated he tried for two hours trying to find a way to remove the tumor surrounding the structures but the tumor was so hard and he felt continuing to try would damage the structures and therefor the surgery ceased. Needless to say I was too upset that I'm not sure that I had asked all the right questions nor am I sure I actually heard what he said. Both doctors seemed as upset as I was. My husband is doing better each day, healing, but needless to say we both are scared and upset about the whole thing. The original plan was to begin radiation with chemo (gemzar) after he had healed from his surgery. When my sister-in-law asked him if this was still the plan the doctor stated that he wasn't sure at this point the radiation would be beneficial but he wanted us to have hope and pursue this option anyway. He scheduled us for a follow up appointment to have the staples removed and an appointment with the oncology radiologist (we have had one consult with him already) on the same day. The doctor stated he had never seen anything like the tumor that has encased the three structures before and has been doing this type of surgery for 25 years. I've researched the liver to find pictures of outer structures of the liver and have only found the bile duct outside of the liver which branches off. Excuse me if I seem uninformed, would this happen to be the structures he is speaking about? I feel absolutely silly not having a good understanding or giip on this! Our plan is to take all the radiation treatments that we have read about with us to the appointment with the oncologist radiologist and make him go through the list with us explaining why/why not each would be an option for my husband. I also wanted to ask him about the latest on the two medications gemzar and "something" (can't think of the other) posted here. I'm having difficulty understanding how radiation works (probably because I need detailed specifics). On the one hand I understand that radiation can shrink tumors and damage cancer cells. Chemo can damage cancer cells as well as kill cancer cells (right?). With all of this said, I just don't get why the *@!! there isn't a more positive outlook on cc! I'm sure it's because "type" of cancer hasn't responded well to what we have on the market at this time...right? If cancer cells are killed...why do they spread? Sorry...I'm a bit confused at this point in wrapping my mind around this entire beast!
On a better note, anyone going for treatment at Cleveland Clinic should ask their social worker to get them on a list to stay at Hope Lodge (American Cancer Society). It's a beautiful place...and it's free. Once your in you can stay for as long as you need/want! They have everything there! For me it was my first time socializing with others in person who are experiencing cancer. I have to say it was a beautiful experience.
You are all in my prayers....
Karen
