debnorcal
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Hi Elaine,
Welcome to the group. This is a wonderfully caring and knowledgeable bunch of people, with resident experts on just about any CC related topic one might seek advice on. Sounds like you are doing everything you need to be doing to be on top of your situation, especially consulting with one of the major US medical centers that has expertise in CC.
My husband, age 54, was diagnosed in May, 2014, with unresectable Perihilar CC. Both of the second opinions we received (John’s Hopkins & Cedars Sinai) concurred with the diagnosis but strongly encouraged us to work toward becoming resectable via chemo or radiation. While our primary care doctors essentially wrote my husband off – steering him to palliative care, we forged ahead with a positive attitude. The chemo was modestly effective (five rounds Gem/Cis), slowing the progression. However, our third second opinion was the charm. A top surgeon at UCSF proposed a radical, but potentially curative surgery. After a great deal of consideration and research, my husband decided to proceed. He is scheduled to undergo an extended right hepatectomy with portal vein and bile duct reconstruction in mid January. We are not expecting miracles (although that would be nice
As we have from the beginning, we are taking one day at a time, evaluating the best option at that point and proceeding. So far this strategy has worked well for us.Sounds like you have a positive can-do attitude as well. Keep in mind that there are many different options available to CC patients and new discoveries and potential treatments are surfacing all the time. I wish you the very best in your journey with this insidious disease and will be praying for you.
debbie
Dear Carl,
I am so sorry for your loss. When I read your post, my heart broke for you and your family. Your sentiment to your wife was beautiful and touching. I have no words to offer to make the pain disappear. Please know, though, that I am praying for you, your wife and family, as are so many others on this discussion board.Peace,
Debbie
I should have indicated I would recommend contacting top centers in your region (such as you have with the Italian docs), not just within your country.
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
This is a topic I think about from time to time. We moved cross country, from east coast to west, seven years ago, to a less stressful job environment for my husband. My husband expects a lot from himself though, so I’m not sure his stress level was actually any lower
The doctors believe his CC started about two years prior to diagnosis in May 2014. My husband has inherited high cholesterol, and has been on statins for more than 30 years. We followed a heart healthy diet (limited red meat, no cheese or dairy, lots of cold water fish and leafy greens). My husband was about 15 pounds overweight though. I have read that certain conditions, such as diabetes, being overweight, a high sugar diet, etc., can cause a chronic state of inflammation in the body and, with the body trying to fight the inflammation, it may compromise it’s ability to repair cell damage or overcome cell mutations that could lead to cancer. So in our case, I have thought my husband’s HCC may have been due to chronic inflammation or maybe tied to his high cholesterol levels. Or perhaps something in his diet. He also spent two weeks in South Korea 12 years ago, so could have contracted liver flukes – I think pretty unlikely though as it was such a long time ago. The idea mentioned in this thread about statins impacting liver function is interesting. I had not thought of that. However, my husband’s liver function tests were always normal until just before diagnosis. I do think that, because the cc is originating in the bile ducts, it is highly likely that the culprit(s) has something to do with something ingested or is somehow involved in the digestive process. I can’t wait for this mystery to be solved, as it can potentially allow so many people to make choices that could prevent CC from ever starting.Duke,
I am one of the newer “lurkers” and rarely post comments. But I saw your post today and felt compelled to respond. I have learned a great deal from many on this forum, including you. I so appreciate your wry writing style and thoughtful perspective on topics. I admire your spirit and determination and often send positive, healing thoughts your way. We all know firsthand what a bumpy ride CC takes us on and it sounds like now you are on the down side of that ride. Hang tough and I pray that soon you come across the trial/treatment that will work to position you on the upswing. All my best,Debbie
Hi all, I may be posting in the wrong location, but this seems closest to my topic, which is definition of “stable”. My husband’s tumor measured 3.1cm (TR) and 2.0cm (AP) on 4/17/14. His latest measurement, again per MRI, on 11/6/14 was 7.1cm (TR) by 32.cm (AP). The RECIST definition of stable indicates up to 20% growth. According to my calculations, my husband’s tumor has grown 130% (TR) by 60% (AP) in 6 months, which appears to be way outside the parameters of stable. His doctor sends notes such as “good news…it’s stable) along with these results. I plan to pose this question to him today but thought I’d consult our wonderful “experts” first. Thank you, Debbie
Hi Reacher,
I am also new(ish) to this forum. I have been absorbing as much information as possible but have not yet posted an introduction. In reading your description of your husband’s condition, I see many similarities and wanted to share our experience in the hopes that it may offer you and your husband some encouragement. My husband is also young and otherwise healthy. First symptoms appeared 2/17/14. Although in a different location than your husband’s, he has unresectable intra and extra hepatic CC. Like you, we were horrified by the prognosis statistics doctors gave and we read on line. We put all that aside though, and are focussing on the options that are available. We also choose to remain positive and that has helped.
The first thing we did was to obtain second opinions from large medical centers that have much experience in biliary cancers. We received remote opinions from Cedar’s Sinai Liver Center in L.A. and John’s Hopkins. They both concurred that the tumor is currently unresectable and they both encouraged my husband to seek treatment that might reduce the tumor to a size that makes it eligible for resection. We then had an on site second opinion with UCSF Medical Center. We chose to work with them for many reasons, including their pioneering work into research on CC. Dr. Kelley at UCSF also concurred, but advised that we have many options, recommending we start with Gem/Cis, which my husband started in June. He tolerates it pretty well. After three cycles, the new scan indicated the tumor is stable and the Gem/Cis is working. He is continuing this treatment to maximize the benefit of it. While we are being realistic, we are also thankful that the chemo is working and that my husband is feeling well. He actually returned to work in early August! We hadn’t expected that he would be well enough to do that. He has already exceeded the low end of the survival statistics and expects to continue to pass these time frames. We take each day as it comes and do what we can to improve his outcome. Research and clinical trials are rapidly evolving thanks in large part to the CC Foundation and the Bili Project Foundation’s campaigns to raise awareness and fund research into this rare type of cancer. Today there are more effective treatments than there were five years ago. Each day brings us closer to better treatment options. My best advice is to try to stay positive, research your options and deal with each step as best as you can. Prayers to you and your husband.
