Diagnosed with unresectable bile duct cancer

Reacher,

When Mom was diagnosed last October, we were also told that most survive only about a year and chemo extends life only about 3 months on average. I am very thankful that she didn’t decide to not do the chemo becuase if it was only going to give her a few more months.

Her 3 rounds of chemo shrunk the tumor about 25%. Then she had SIRT (radioactive seeds) in Feb. The radiation also shrunk the tumor more and killed many of the cells. She was tired for 4 weeks after the radiation, but since then she has been living and feeling fine (3 vacations since March). Her tumor is still stable, but when it starts to grow, we’ll go back on the chemo. As others have indicated, many more people are living longer and better lives than would be indicated by the older statistics.

The chemo was not only to either keep the tumor stable (or hopefully shrink it), but to give a treatment that would kill cancer cells that may be present in areas beyond the tumor.

Treatments like radiation target the tumors directly.

The only “cure” I am aware of is when they are able to do a resection and get clean margins. We had hoped for this, but when they went in to do the surgery, location made it not possible. So, even if it can’t be cured, goal is to treat as needed and approach as having a chronic condition.

On the main Cholangiocarcinoma Org homepage, under the “Cholangiocarcinoma” heading, they have a section on treatment options.

And- welcome Debbielax! I am impressed how quickly you were able to reach out and get the second opinions. Returning to work is wonderful.

Good luck to you both.

Catherine

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.

Reacher,

I hated statistics at uni and I hate them even more now!! My advice would be to ignore them and just don’t read them! Much has changed for the better since many of these stats were collected and there is much more happening now that is very positive. And remember, politicians like stats as they can be used to prove or disprove anything, ignore them!!

My best to you and your husband,

Gavin

Reacher,
All the information on the web can be so scary and overwhelming. Each person is different and I don’t believe for a second that we have an expiration date stamped on our feet. In the past almost five years that I have been fighting this disease I have never once asked “How long?” I have never wanted to know….because I feel strongly that none of us know how long. Each day is precious and a gift. I know it brings sadness and that is normal…nobody plans for this. You will find much support here…..prayers for you and your husband.
Melinda

We are happy to have you on board.
Hugs,
Marion

Hi Reacher,

Welcome to the site. Sorry that you had to find us all here but glad that you’ve joined as you’re in the best place for support and help and you’ll get loads of that here from everyone. Sorry to hear what your husband is going through, but it sounds like he is getting some good treatment and is in good hands as well. Please keep coming back here and let us kno how everything goes. We are here for you and we care.

My best wishes to you and your husband,

Gavin