rae

Hi Patti,

I’m sorry to hear about your CT results, but don’t give up hope. I agree with Jeff – the surgical opinion should come from a GI surgeon with a lot of cc experience.

I wanted to clarify my earlier post about the biopsy slides. I dont think they would have released the slides into our possession. I think there were 2 reasons the slides weren’t sent. My Dad’s primary doc requestd a surgical appointment, not an oncology appointment. The surgeon didn’t need the slides, so Mayo did not request them. Second, the primary doc and the GI who did they biopsy were at two different facilities in different towns. I’m sure that didn’t help.

Once you reach the point of having a second opinon lined up, that would be the time to make sure the slides are requested and sent.

At that point in the process, we did not understand the difference between surgical and oncology appointments. If I had known, I would have requested both before we arrived at Mayo. But we didn’t ask for the oncology appt. until our meeting with Dr. Gores, the surgeon. At that point, it was too late for slides to be requested and sent, without us staying another few days in MN, which my Dad did not want to do.

Patti, keep pushing for the second opinion – the squeaky wheel gets the grease. Perhaps surgeons associated with university teaching/research hospital would have different payment options than Mayo for those without insurance. It might be something to look into.

Best of luck, you are in my prayers.

Rae

Hi Patti,

My dad also had intrahepatic cc, and like Joyce’s mother, did not have jaundice or pain until very close to the end. In fact, he never complained of pain and never took the pain meds until the very end, when he was sedated. His cc was discovered at his regular check-up. When the doctor pressed on his abdomen over his liver, he felt mild pain. This prompted a CAT scan, followed by a needle biopsy. He was diagnosed by a gastroenterologist in the Quad Cities.

My mother asked his primary care physcian to arrange a second opinion at Mayo Clinic in Minnesota (she specifically asked for Mayo MN), before he even met with a surgeon locally. His Mayo appointment was 5 days later. We took a CD with his CAT scan pictures and copies of all his lab results. One thing we did not have were slides with his biopsy. If you get a second opinon elsewhere, make sure these are sent so you can see an oncologist wherever you go. We met with the Mayo surgeon (Dr. Gores or Gore), but were not able to meet with the oncologist because the slides had not been sent. We didn’t know to request them.

In my father’s case, this did not really matter, because it was inoperable – (the tumor was against and partially surrounding the vena cava), relatively symptom free aside from weight loss and fatigue, and elected not to do chemotherapy. He never saw an oncologist, even locally.

I would urge you strongly to seek a second opinion. My dad was comfortable with his decision not to seek chemo, and we were able to support him, because we went to Mayo. That decision is such a personal thing – but that visit to Mayo was really a comfort to my mother and I, even though they essentially said there was no hope in my dad’s case. If it were me, I would have kept seeking a third or fourth opinion, but it wasn’t me, it was my Dad. And he was able to make a better decision for himself because of that visit.

I don’t post often here, because it makes me cry sometimes, but I visit regularly and can answer questions you or anyone might have about my Dad’s experience, either here or privately through my e-mail at rwojdylo@semo.edu.

My prayers are with you, and everyone on this board.

Rae