New member, new diagnosis, new to all of this.

I haven’t written in a while, but I went home to Cincy for Thanksgiving as did the rest of my family and it was great to see everyone and hang out together. My dad did well, he seems to tire out a bit easier but that’s to be expected. We all spend lots of time together, and sat around the dining room table after dinner one night, laughing and joking around for hours. It was exactly where everyone wanted to be at that moment and I’m so grateful that I was a part of it.

My dad is still tolerating chemo quite well, all things considered. He’s lost some weight, and looks a bit more fatigued than he did before, but otherwise he still seems to feel pretty decent. He had a kidney infection that he took meds to treat, and as far as I know it is under control at this point.

The onc seems to feel strongly that my dad’s tumor has shrunk (just by feel and touch to my dad’s abdomen) and has ordered another scan to confirm/deny this.

I also sent his history and scans to a few other doctors/specialists/hospitals after reading all of your helpful responses. Karen Marshall, the nurse I have been speaking to at Northwestern’s IR dept has been WONDERFUL. I have never come across someone as informative and accessible. She gave me her cell phone number, called me after hours just to make sure my call was returned, and explained all of the possibilities regarding treatment for my dad in depth and in a language I could understand. She was surprised at how much I knew about IR, which in turn surprised me, but hey, I’ll take it! If only I had put forth this much effort into studying when I was in school! She and I have been playing phone tag but I plan to speak with her tomorrow and have a more in depth conversation as to their findings. From what she left on the voicemail, she (and the Radiologists that viewed my dad’s case) is of the opinion that performing the treatment where they go in and surround his liver tumor with small beads filled with radiation would indeed be beneficial to his situation. She had a sense of urgency on the phone and mentioned him coming up to Chicago as soon as next week to do the initial mapping of the liver in order to figure out the dosing, etc. I tried to call her back, but it was too late in the day to reach her so I sent an email letting her know that at this point she needs to speak with my dad directly, as this is his decision. I am not exactly sure if he understands exactly what the procedure entails, the benefits, drawbacks, etc. and I think it would be much easier for him to get the answers he’s looking for if it comes from someone who deals with this on a regular basis, as opposed to me trying to relay the info from the docs and nurses.

Until now, my mom has been a mostly silent player in the information game. It’s somewhat surprising to me, since she is in the medical world and has been for 20+ years (on the medical records side of things). When I initally broached the idea of securing more opinions, she immediately became defensive and insinuated that I didn’t trust the ONC in Cincy or his opinion on my dad’s current treatment. On the contrary, I think Dr. Crane is a fantastic oncologist. But he is just that…an oncologist. He is not a radiologist nor is he god. I tried to reiterate this a few times, calmly, to no avail. My dad sent me an email shortly after requesting that I continue to move forward with opinions, and that we keep things between us (us meaning he and I) until something worth discussing came to be. Well, after learning of the IR side of treatment regarding ICC, I think that time has come. It seems to me that in a way she is doing exactly what she feels her role is in this scenario…to be my dad’s caretaker and support system. She’s doing an excellent job, and frankly I think she’s too scared and too exhausted to look beyond what’s right in front of her. Her best friend lost her spouse to cancer some years ago, and he tried all kinds of trials when he ran out of approved treatment options. I think she’s fearful that agreeing to something that is not part of the initial “plan” will put my dad into a similar situation and that he will be in pain, or subjected to something that will make his situation worse, given the fact that he is tolerating chemo so well. My hope is that after presenting this info to both of them, that she will open her mind to other avenues and advice regarding possible treatment options and resist new information a bit less. I continue to tell her that we are all on the same team. If he decides to pursue IR, then I will do whatever is necessary to help. If he doesn’t I will be completely ok with that too, as it has been and will continue to be his decision, and his alone.

Thanks for letting me vent! I love both of my parents and am offering whatever support I can to each of them. Some are just a bit more stubborn than others.
I will update everyone when I have a better idea of how this is all going to shake out.

Thanks so much for the advice! My brother said that they met with the nurse practitioner at the last treatment, and from my understanding she essentially told them that they needed to discuss other treatment options with Dr. Crane himself. My dad has the next two weeks off (one because it’s his usual 3rd week off of treatment, and the following Friday due to the Thanksgiving holiday) so he will meet with the oncologist again at the beginning of December when he returns to begin the next round of treatment.

My dad sent me all of his scans, etc. so I will be receiving them tomorrow in the mail and plan to send them to Dr. Chapman, in St. Louis, based on the research I’ve done and also based on the wonderful reviews of him on this site. I’ve also sent preliminary info via email to my contact at the University of Chicago, and she is sending it to the GI oncologist, so once he receives my email, we will go from there. I will contact Northwestern tomorrow and find out how and to whom to send his records in order to receive an opinion/consult, etc.

I will let you know what I hear back from them! Will they offer an opinion based on his records or does he have to physically go in, in order to obtain a consult? Not entirely sure as to the protocol for all of this. I know people on here have said that the doc in St. Louis (Chapman) is willing to look at his stuff without requiring a visit, was just wondering if you know how any of that works at Northwestern, Rush, etc.

I appreciate your help and advice regarding all of this, it’s been hugely helpful. I also appreciate everyone else chiming in with positive thoughts and useful information. This website has been a godsend. My dad is still in positive, great spirits and still continues to be his old self. Chemo this past round knocked him down a bit for a day or two after, but his energy level bounced back to normal after taking it easy for a few days.

Hi! PCL, so glad to hear you live in the Chicago area, I have so many questions! My dad sent all of his scans, records, doc notes etc to me in the mail today, to give to other physicians here in the surrounding areas in regards to additional opinions, etc. Any suggestions as to where to start? I’m not sure how to go about contacting some of these doctors to check and see if they will even take a look at his records, etc. I have a few connections at the Univ of Chicago, but am trying to find a doc who treats this cancer somewhat regularly and who will also be willing to give an opinion regarding his diagnosis/treatment plan/options. I know you’re well versed in all of this so any thoughts or suggestions would be wonderful! Thank you!
Kerry