justmatt
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Thank you all for the support and encouragement. I spoke to my supervisor and told her I wanted the day of Virginia’s surgery off (whenever that may be, hopefully first week of April) and she was very understanding. I can’t be there in person, but I will definitely be in touch with her husband that day. Her mass was approximatey 2×3 cm. a little less than a month ago, so I guess(?) that’s good, I’m just hoping it hasn’t spread or grown much since then. Anyway, just wanted to say thanks to y’all for being here, it means a lot to me.
Just spoke to Virginia (I’m tired of calling her “my sister”… lol) today. She talked to Mayo. She sees CRNP there on 4/2, and talks to the surgeon on 4/3. They may be able to operate on 4/4! The surgeon is Dr. David Nagorney. I did a site search and see that several here have used him. Lots of info on him on the net, and it seems he is a very accomplished surgeon who specializes in liver resections in general and CC in particular. He has authored/co-authored several research studies on CC. So… now the waiting game begins. The more I read about CC, the scarier it is – it’s a war, not a battle. I am glad she is going to Mayo.
Some good news: I just called my sister and she said she was about to call me for some advice. She said she didn’t feel like the surgeon was very confident. She was relieved that I called and told her to go to Mayo – Rochester. I told her to call her oncologist’s office Monday morning and let him know that she has decided to go there and needs to get in ASAP. I told her if they aren’t responsive enough, to call her GP and tell him the same thing. Burn up the phones in whatever clinic’s office until she gets what she needs.
She really questioned this surgeon’s abilities after he made the comment that it is on her vena cava “but if we cut it, we’ll just stitch it up”.
First, let me say that this site – the people here – are awesome! As I read the responses, I realized that your concerns are exactly the same as mine. I spent hours last night finding out as much as I could about this surgeon and clinic. Lainy hit the nail on the head – there is very little information about him or the clinic (when it comes to liver resection / cholangiocarcinoma) out there. I did find the a PDF file entitled “Ayman Al Harakeh, 2009-2010 Fellow – Fellowship in Minimally Invasive Bariatric Surgery and Advanced Laparoscopy” that was from the clinic’s website. The best I can make out, he did 124 gastric bypass surgeries that year and ONE liver resection!
I’m not sure how to put this… we grew up very poor in Iowa, our mother was a simple, caring, loving person. And my sister is a lot like her. Dad was very domineering and mom did the best she could not to make waves and to “keep the peace”. My sister has a lot of the same qualities, which has lead to several instances in her life where others took advantage of her. I am going to call her today and let her know what I think – that if it was me or my wife, I would be on Mayo’s doorstep in the morning.
Also… the tumor is basically right on her vena cava. She needs a skilled and ex(continued) etc…. but, she and her husband are very optimistic and got a good feeling from this surgeon. She is being as optimistic as she can, but I know inside she is scared. I am thinking about asking her if she would sign a release so I could talk to her oncologist myself. I just don’t know, still letting it all sink in. Thank you for letting me ramble.
Thank you all for the words of encouragement. wallsm1 – she is 52 years old.
I just spoke with my sister, she just got home from meeting with the surgeon. Surgery is set for March 26. They are going to look around, and if they do not find other tumors, they will take out 1/3 to 1/2 of her liver. I think everyone here knows the other possibilities, so I won’t go into that.
I AM SCARED, AND THIS IS WHY: I / she thought the surgery would take place at Mayo in Rochester. It turns out they are going to do it where they diagnosed her, at Gunderson Lutheran in La Crosse. She is optimistic, but I think the reality of the seriousness of this cancer sunk in a little more today after meeting with the surgeon.
I asked her about Mayo, she said that La Crosse told her they do not want to wait to delay the surgery any longer and that this surgeon has experience with cholangiocarcinoma. I guess that means that it would take more precious time to wait to get schduled for surgery at Mayo?
Is it ok if I name the surgeon on this site? I don’t want to break any rules, but I did look up his credentials. He specializes in beriatrics, general surgery, and transplant surgery. I can find very little about him other than that. Does anyone know of a reputable website that could give me more information on his skills and track record? He received his education and most of his training in Jordan and Beruit. He did a fellowship at Henry Ford in MI. This all makes me very nervous.
I know I can call my sister and tell her she should/could/can demand a second opinion,
Thank you for your kind and supportive words peggyp & Lainy. I’m not sure exactly what kind of surgery it is, I will talk to her tomorrow night (after she meets with the surgeon) and find out. She doesn’t have internet, but I will share with her the support and information that I get from all of you. I will also find out the surgeon’s name; she is going to Mayo (Rochester), and maybe some of you are familiar with him/her. I’ll keep you posted, and thanks again.
