Update on Dad

Teresa,

I’ve been in your shoes and I know how overwhelming this position can be. One lesson we learned the hard way is how critical it is for a patient with CC to work with a medical team that has lots of expertise in this disease. In my husband’s case, the doctors we worked with through our HMO health care provider are all highly competent – from GI docs to surgeons. What we didn’t fully appreciate for a while is that they are generalists and have very little exposure to CC. They can diagnosis it and even perform some simple resections, but that is all. They have no experience in complicated resections or even aggressive treatments. They operate from their prescripted “standard of care” which is simply palliative. They told my husband repeatedly that he was unresectable. We obtained two outside surgical second opinions from centers that have far more CC expertise and they both concurred that he was unresectable at the moment but suggested he try to reduce tumor size in an effort to become a candidate for resection. He started the Gem/Cis treatments which slowed down growth but didn’t shrink it. Then we contacted UCSF, one of the few major centers in the US that have expertise in treating CC. We were expecting more effective treatment options, seeking doctors that are on the forefront of research into this disease. Surprisingly, my husband was offered a resection! It was presented as risky, with the biggest risks in our case being serious surgical complications affecting survival or quality of life. Also, risk of not achieving negative margins. We were terrified of the surgery, but researched outcomes extensively to get an idea of likely outcome. We also reached out to Dr. Kato, whom you mentioned above. He recommended proceeding with the surgery. We asked to speak with him directly and he was very generous with his time and willing to answer all of my questions. We have become reasonably comfortable with the idea of surgery and are in the process of scheduling an extended resection . We are hoping for a good surgical outcome. But regardless which way it goes, we know we are doing all that is currently possible to fight this disease.

In your dad’s case, I’m assuming that the two Australian doctors you contacted are not experts in treating CC. I suggest that you seek out the top experts in CC in your country – the ones that see the most cases of CC, and work with them. I would also call Dr. Kato back and ask to set up a time to speak with him directly. You should be able to get all your questions answered by these doctors so that you and your dad can make informed decisions about his treatment.

The upshot of what we learned is not to spend resources (time, energy, money) on doctors that are not on the forefront of treating this horrible disease. Regardless of how well intentioned they may be, they just don’t have the knowledge or experience needed to aggressively combat CC.

All my best to you and your dad. Hope sharing our experience is helpful to you and others.

Debbie