My sister had surgery March 19th and was told her margins were clear
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Let me guess…she is an older sister?
We are here for you…if you are concerned about your sister finding out…create a new login name so YOU can get the support you need. This cancer is difficult not just for patients, but for family members too. Just remember to take care of your emotional needs too. I think my sister joined a cancer support group in her hometown to help her deal with my cancer. Perhaps you could find a support group too. But let me repeat, we are here as much for you as for your sister.
Kris
THank you all for your prompt replies. Unfortunately I am in Mexico, my sister, the patient, is in Philadelphia and my other sister is in New Mexico.
My sister with cancer gives us sound bites and when I “resuggested” a Pet scan she told me that she didn’t want to know if she had a small cancer in the brain and bit my head off when I suggested she only ask her MD to tell her about the liver:-)
She apparently has one of the top oncologists in the country…that was what was meant by “his practive being one of the best”
She is strong, confident and ging to control the information…so I guess you won’t see me again until she lets me in. I can’t afford to alienate her
Thank you and good luck to you all
Sally Wood Evans
O.K. I am in no way sayng I agree with the Drs that your sister should wait a few months and see what the “small things” are, I too would want another opinion pronto, however, it is my understanding that sometimes if whatever is being detected is too, too small, a cat scan, ultrasound or pet test wont pick it up. Sometimes the waiting the alotted period is to see if they see change in the shape. I know the cells on my dads lungs were just too microcosmic to determine initially, and that was an opinion of 3 different Oncologists. I am wondering if your sisters CA125 levels or billirubin levels are raised as well. Im with Kris, lest hope the “small things” are just imflamation or scar tissue.
Peace
BarbaraHi Sally and welcome. The more you read the posts on this sight the more armed you will be. To be fore warned is to be fore armed and will help you become a great advocate for your sister. Unfortunately with CC there seems to be many answers which is why we pursue 2nd and 3rd opinions until it feels right in the gut. I don’t understand the long wait either. It is not a cancer that should just be waiting for someone to do something. Everyone has their favorite treatment centers but 2 of the best are Mayo Clinic in Rochester MN and MD Anderson in Houston. Another thing to remember is we know nothing for sure about CC except that it does return. Vigilance is most important. I would ask the doctors why they are waiting instead of starting something now and if it can grow considerably while you are waiting. Best of luck to you and please feel free to come here to vent. ask or advise. The most important thing is a winning attitude and tons of hope.
Sally,
Reoccurance is unfortuneatley a big risk with this cancer. I was caught early, in fact my surgeon said he had not seen a better case than mine in 13 years of his doing the surgery, but my cancer came back too.The problem with imaging the liver after surgery is that there is scar tissue and inflamation from the surgery. These things leave traces on the scan so waiting is often the procedure. You can request a PET scan which uses a different imaging technique that will not pick up the scar tissue and inflammation.
As a patient, I too cant imagine leaving my sister. Sisters are very special and I hope yours just has a little inflamation, but please be vigilant.
Kris
Sally,
You may need to be her advocate. There is a search function at the top of this page as a first place to look when specific questions come up. There is a section for Hospitals/Doctors. We always encourage second opinions, especially when the doctor doesn’t seem to have answers. Of course, sometimes, the doctor has more info and the patient is not able to focus because the diagnosis is so scary so going with the patient to the doctor can be important. Please pursue a second opinion and follow your instincts! I agree with you, “small things” that need another look should not have to wait that long for the second look. By then, it could be too late for some of the options. If you read through the comments on this site, early detection is often the best chance people have of getting the care we need. Yes, insurance is a great thing! But be prepared, the insurance companies sometimes need to be fought as well. That is one of the places where an advocate can be really helpful. Ask the doctor how many patients they have seen with cholangiocarcinoma. At the hospital’s web site, check out the credentials of the doctors. Find out if the doctors regularly meet to discuss unusual cases. My dermatologist had not heard of cholangiocarcinoma before, so being with a top group doesn’t mean they know this type of cancer. I’m not sure my doctor had many other cc patients, but she does have a strong background in hematology, reads a lot about the cancers, and has presented my case to liver specialists and oncologists seeking suggestions and help more than once. Yes, this beast is nasty, but it can be fought. Attitude, faith, knowledge, these are ALL important tools. On my first visit with my oncologist, I made sure she understood that I wanted to be aggressive in this fight. I have had the wonderful work Remission twice already! My next scan is next week, and I’m hoping it continues.God bless you and your family!
Louise
Her doctor told her she was cured. She went for a second opinion on follow up cure and was told that although the results wee excellent this type of cancer could come back. Her four month follow up scan was 10 days ago and she got the results Tuesday. The scan was not clear. There were some “smal things” that they want to take another look at in three months.
My other sister and I are scared, disappointed and just plain horrified! Why does she have to wait three months for another scan? She doesn’t talk about this much but I am 99% sure it was an inhepactic tumor with clean margins. She does not have a gall bladder…..it was taken out last year and that’s when they found the “shadow” on her liver and said she should have a liver scan “within the year”
She is not with some group in East Podunk…she’s with a top group in Philadelphia….why wait a year when they saw a shadow? Why say she’s cured cause the surgery had clear margins?
What questions do we have to ask? To lose her would be unbearable
Any help would be incredibly welcomed.
Is there a top Cancer Reasarch Hospital for this type of Cancer? Fortunately, she has medical insurance.
Many thanks
Sally
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