my twin sister and bile duct cancer- advice

Ron, Teddy had cyber knife in December. We swear by it. 3 days of treatments and you are done!!! It will depend where the CC is and the size. It is amazing.

Heather,

One other topic to put in front of you as you begin this journey with your sister .. and that is wellness. Fighting any cancer is just that a fight and the wear and tear on the body can be significant. As you learn about treatments and options – also spend time learning about how to maintain wellness through the process. I think Duke offers some integrated health programs – I would look into those right away.

The things that come to mind right away though are diet, especially maintaining the gastro-intestinal tract and supporting liver health through supplements and even accupuncture.

As an aside my dad’s interventional radiologist was a strong believer in the mind-body healing realtionship and he suggested that dad read this book:

http://www.amazon.com/Love-Medicine-Miracles-Self-Healing-Exceptional/dp/0060919833/ref=sr_1_2?ie=UTF8&s=books&qid=1249314790&sr=1-2

Bz

Hi, Heather,

If you use the search forum above and put my name in as author/writer but do not put a subject in, it should pull up all the posts I’ve written, and that is one way to hear about what I’ve been through. Basically, I was diagnosed May 29, 2007 with a pathology report from exploratory surgery. I have since had 2 different sets (6 to 8 months each) of chemo, 28 days of radiation (Feb. to April, 2009, daily M-F), several procedures to insert/change stents, a hysterectomy, a jujenostomy, numerous scans and scads of blood draws, I have a port, my prayer chain keeps growing, and the hardest thing for me right now is that my Mom has taken a different path in dealing with her own cancer in the same family. She was diagnosed in Nov. 2006 at the age of 85-almost 86 and chose not to have surgery, radiation, or active chemo. She was on a low-dose pill of at-home chemo. Her oncologist did not expect her to last a year. A few weeks ago, he saw her again, amazed she lasted this long. Her latest scan showed metastasis to the lungs + and he referred her to Hospice. At initial evaluation most of us were thinking she might have another 6 months, but she took a fall Thursday. Still not interested in trips to the hospital/ER. She’s beginning to have fun visits from my Dad, who passed away in ’05 after 60 years of marriage. She is so ready to go and has been saying goodbye to everyone. After her fall, a hospice nurse estimated that Mom might have 2 weeks. Most of us are no longer comfortable with her being alone for long at all. So you might say a death-watch has begun. Of course, if I had had all the visitors she had yesterday, I would be exhausted. (4 of her kids, 7 grandkids, 6 of my cousins, a couple of my aunts, and daughter-in-law with her mom that I know about, could be more).
Throughout my journey with cancer, I have maintained my full-time job as professor at a community college, but I’ve come close to using up my sick-time a couple of times. I have my next scan on Wednesday this week. Ask me anything, I’ll respond. I’m a teacher with 6 kids of my own, most are grown, 2 still in high school. God has been very good to us. In some ways, this cc is a roller coaster ride. There are ups, downs, and bumps. Some people get a short intense ride, others have a lower, longer one. No way to know what her ride will be like, but best of luck as you share what you can of it. Does your sister know you are visiting this site? Is she interested in what you learn here?
Gotta go, hubby wants help and I’ve grading to finish. Summer school is over ang drades need to be posted by tomorrow evening.
Louise

Heather,
So glad you found us! As a twin, you’re probably scared for her as well as for yourself. You are right, this disease is random, unpredictable, and not well known or studied. As for what to expet, explore this site and you probably won’t see any 2 stories from different people that are the same, so expect some surprises.

Some of the questions you might want answers for include
a. Exactly where is the tumor(s)?
b. What size tumor(s)?
c. What other names could this cancer be called?
d. How often have you seen/treated this kind of cancer?
e. What treatment plans are being considered in this case?
f. Advantages/disadvantages of each?
g. If this patient were your daughter/sister/wife/mother, what would you want to see done next?
h. What would an aggressive treatment plan look like?
i. What resources are available to cancer patients/caregivers here?

There are probably at least a dozen other questions you might want to ask, but they don’t have to be asked or answered all at one visit. One thing we do know is that things will change. I chose to tell my oncologist at the first visit that I did not want to hear any probable timeline or prognosis because I did not want it to be self-fulfilling prophecy. My oncologist has called me a statistical outlier–what is expected does not happen and what happens was not expected. If anyone tries to outline what wil happen for your sister, they’re guessing or basing their expectations on history, which is not a precise predictor of the details in the situation.
So what can you do? Encourage your sister to take the lead as much as she wants to. Support what she wants; none of us have guarantees of life or can truly feel anyone elses’ pain. Learn as much as you want. Visit this site, ask questions, use the “search forum” function above, ask more questions, don’t be afraid to seek second (or third, fourth or fifth) opinions from the doctors. If you believe, seek other believers to pray for your sister. We’ve seen marvelous gifts from God!
Hope, attitude, fight–they make a difference!
Louise