September 14, 2007 at 9:56 am #16778scragotsMember
Your tumor is about the size mine was. You definitely need to get a second opinion. When I spoke with my oncologist earlier this week, she had a few minutes and we talked about a lot of different subjects. One of them was about the tumors that she has resected for this disease. She actually called mine “fairly small” (5.7x4x3.5 centimeters) and said she has resected tumors of at least 10 centimeters. Now maybe I missed something in your posts. I do not remember there being any specific reason for calling yours “unresectible”, and I am definitely not saying that it is…I just want you to make sure that you get enough opinions to feel comfortable with that decision by your doctors. Exhaust all your resources, just as others have said.
I wish you lots of good luck on this journey and always remember that there are many people on this website with tons of knowledge on this disease. That doesn’t mean we are doctor’s, but we have all had our fair share of experience with this cancer and want more than anything to see another survivor.
Good luck! Keep us posted.
SueSeptember 14, 2007 at 3:01 am #16777billParticipant
THERE IS HOPE. You are young, which is in your favor and you have access to excellent medical care In Seattle. My wife, Kathleen, was diagnosed at age 39 and just had her 45th birthday party on Monday. She has had two surgeries, chemotherapy, therasphere and who knows what else. In all honestly, most of the past 5 years have been very good for Kathleen despite her diagnosis.
I also like the second opinion ideas people have suggested. We are so lucky to have a local physician we trust and like.
Good luck!September 10, 2007 at 2:13 pm #16776evan14Member
Please heed PeterSeptember 10, 2007 at 1:20 pm #16775lisaParticipant
Thank you for your kind words and encouragement!
My boss is great – he will let me telecommute as long as I can. Today I meet with him and the Human Resources boss to see how working part-time would affect my disability.
The choice of words that you use to describe cancer is important… I choose to fight this cancer. My kids need me to do that.
One blessing of the cancer is the outpouring of love and affection from my friends and church.
I do miss doing my normal activities – I used to bike a lot. I want to ski this winter. Just walking a little ways makes me out of breath.September 9, 2007 at 10:45 pm #16774thecdrMember
welcome from a single mom, I literally feel your pain……. Being the practical person i am I won’t go into the medical, there are people who know more about this disease than I do, but, regarding work, get the ADA (American with Disabilities Act) on your side. I am still working and will do so until I can’t physically, I am fortunate that I am able to telecommute, which is a godsend. If your job is such that this is a possibility, try it out. I wish you the best of luck. How are your kids taking it?
BarbSeptember 9, 2007 at 9:26 pm #16773peterMember
Actually there are a few of us who continue to fight this disease still hanging around this website. : )
Most importantly get a second opinion on the surgery! It is the best course for a good outcome with this disease and it requires a surgeon with CC experience in many cases, and there are not a lot of them. Search this site for surgeons and cancer centers with CC experience, just being a good cancer center isn’t always enough when dealing with a cancer this rare and with so little research available.
Search also on my recent posts. I loose track but I recently wrote a response with more details on surgery and the importance of the second opinion. Surgery isn’t always possible but it merits every chance you can find for it.
Have you had a stent placed to relieve the jaundice? One thing in our favor with CC is that it is usually very slow growing. With a stent, often done with a procedure called an ERCP, to relieve initial symptoms you have some time to do some research and consider all your options.
Another key is to have an advocate. Sometimes we can do this for ourselves, often family members or friends step in as evidenced by the many care givers on this site.
I send you prayers, best wishes and courage. Know that you have kindred spirits out here still fighting this disease after a number of years.
ps. Did I mention getting a second opinion on surgery…………..September 9, 2007 at 8:31 pm #16772kate-gMember
Hi Lisa. Well, Kris has said everything so well, I can’t add to it, other than to say, I’m really sorry you have had this diagnosis, and that I really feel for you, being in the position you are, with your kids.
Guess you’ll just HAVE to do the positive FIGHT!!!
Much love to you, and I hope this site will be of some help to you.September 9, 2007 at 6:06 pm #16771devoncatParticipant
YES!!! There is hope. Statistically it doesnt look good, but YOU are not a statistic. Plus statistics come from years of cases. The problem with CC statistics is 1) there are not really many of us around 2) most cases get diagnosed late when there is not many options left and 3) they dont reflect the many new and innovative therapies that are now available that were not 5 years ago when statistics were being formed. STAY POSITIVE.
The other thing I have to say is that although I love this websight and it gives loads of information and encouragement and insight into experiences, it is somewhat one sided. What I mean by that is that most people here are looking for answers and help. Those people that have had successful treatment, whether surgery, transplant, chemo, alternative therapies or a combination thereof, are likely not to be here on this forum. They are “done” and are elsewhere, not thinking or writing about cc. So you dont hear about the perfect success stories (though they are out there so my doctor says!) Remember this, that although this is the BEST place for cc information and support, that this is not the place people in remission visit so you are only getting one side of the equation.
Yes cc does have a high mortality rate-we shouldnt kid ourselves…BUT, I am not planning on going anywhere anytime soon. At 32, I still have too much to do. In fact, I am counting the months (okay years) until I can get the nod to have children. That means a 3 year clear period. I plan on doing it. I plan on so many things. Hope springs eternal and all that. A dr. friend likes to point out that according to some studies, positive thinking is beneficial to overall healing. So I try, like all others…and so should you.
I remember in my medical anthropology class a lecture we had on the terminology of illness. You can “fight” cancer, “live with”, or be “dying of” cancer. The choice of words you use immediately points to your view of life and illness. I am choosing to “fight” cancer now, maybe I will have to change my perspective to “living with”, but hopefully I will never be “dying of” cancer. What I mean by that is that even if in the end cc beats me, that I am not waiting for death, that I am living each day to the best of my ability and basking in the little glorious things that life has to offer.
Anyway, I am rambling, but my point is that there is always hope… some shimmer of light. Do your best to hold onto that as best you can. Read the Good News section. And if you need to vent or are scared, here we are.
KrisSeptember 9, 2007 at 1:55 pm #681lisaParticipant
Hi all – as my subject line says, I’m a 44 year-old single mom of three, dx in August. I have a 3″ x 2″ intrahepatic tumor. I first noticed something wasn’t right when I was on vacation in mid-July. By late July, I was getting very fatigued and had some stomach pains. By early August, I had very dark urine and itched all over.
Using the self-diagnostic tools on WebMD, I decided I had hepatitis. Friends, do not play doctor at home.
I actually did go to the doctor, and when the Hep test came back negative, my doctor ordered an ultrasound. The technician found a mass, so the next day I had an MRC. A couple of days later I had a CT Scan.
I am very fortunate to live in the Seattle area, which is on the forefront of fighting cancer. My family doctor referred me to the Seattle Cancer Care Alliance. An oncologist there, Dr. Philip Gold, referred me to a surgeon who examined the films and decided that the tumor was unresectable at this time.
So in a couple of weeks, I am going to start chemoradiotherapy to shrink the tumor. After 4-6 weeks, I’ll have another CT Scan to see if the tumor has shrunk enough for resectability.
Now, I’m scared because everything I read about CC mentions its high mortality rate. I have three kids, ages 14, 19, and 20 who really need me. I’ve been a single mom for 13 years. Their dad has not been involved in their lives all this time. I have bills to pay and a mortgage. I need to work! I can’t afford to die!
Is there any hope with this disease?
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