new cancer patient
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holly, how about running your situation by other surgeons? Dr. Fong at Sloan operates on difficult cases (he operated on my husband’s CC on May 1st of this year), and particularly Dr. Kato at Columbia Presbyterian takes cases that no one else will touch. I think it’s worth a try! Praying for you, and please keep us posted. Also, here’s a link to Laura York’s blog…it’s really inspiring as she was an inoperable case and is doing great: http://thecancerassassin.blogspot.com/
Dear Holly,
I remember asking the same question about crying when my Lauren was first diagnosed. I think in a way the person with cancer and their caregivers go through something like the stages of grief. I remember crying when I went to bed, crying when I first woke up, crying when I heard a sad song, cried when I saw a young mother with small children…just about anything made me cry because my daughter was only 25 at the time and had this terrible cancer. I did get a little better in time, but Lauren had a setback and it happened all over. That time I decided I needed help. I talked with my family doctor and was put on medication. Lauren has found it beneficial to speak with a social worker. Just know there are options that can help. You are fairly new with your diagnosis, right? It is such a major shock to your system. My heart goes out to you. We are all here to help.
Love, -Pam
Dearest Holly, PLEASE get another opinion! You are at a good place and a good ONC but it is your right to have another opinion. We are big believers in that and no one is going to deny you the right to do that. Get copies of LABS and Tests and you can FAX them to another ONC at another Hospital for a 2nd opinion. You might want to also ask your ONC for something very mild just to take the edge off for you. Wish I could take it all away from you!
Thank you all so much for your posts! In my little world full of heartbreak and bad news you are an encouraging and loving bunch! My surgeon at Hopkins is Dr. Choti. My bad news is that there is a tumor 6.7 cm and maybe three little ones, so he will not operate. They still cannot figure out exactly what cancer I have though all bets seem to be on the cc. They want another 10 days to do more pathology work and bloodwork. There is no cancer anywhere else in my body and I am in extremely good health. But the Oncologist, Dr. Azad, says there is little they can offer me besides systemic chemo. I keep reading online about all these other techniques but they do not seem to want to go there. Sorry to go on about it, I’m just frustrated. I have three children and the youngest is 14 and I am basically a single mom and I am so heartbroken. Does anyone have advice on how to stop crying?
Hi Holly,
Welcome to amazing support group. I was diagonosed about 1 year ago. I had resection with neg. margins with no node involved so they decided to do nothing at that point. But sadly it came back about 3 month ago with a new tumor where they resected and few nodes involved. My only option is chemo for now. I’ve been on gem/cis and it helped a little. Thankfully I had a very little side effects with chemo. I try to get blood work every month and scan every 3 months. Sometimes, I ask for sooner if I don’t feel right. Like last scan was a after 3 cycles of chemo even they wanted to wait. I’m not a kind of patient wait for them to tell me what to do. I do my homework and ask lots of questions and demand things if I don’t feel right.
I read lots of post on this site and learned so much from their experiences helps me ask the right questions when I see my onc and knowing that I get so much support from everyone here.
Stay positive and let us know how we can help.
LeeAnn
Holly,
Welcome to this amazing second family. I was diagnosed over two years ago. I have had many types of chemo, radiation and surgery. There isnt one answer for everyone, this is a tricky disease. I will pray that your specialists will come up with the best treatment plan for you. If you want to talk just let me know, I would be happy to answer any questions about my treatment.
LisaDid you go to to Dr. Choti at Johns Hopkins? He’s my doctor and the best. If you haven’t seen him, perhaps you could make an appointment with him. I saw a different doctor first at JH, but Dr. Choti was a better fit for me and so far, it has been the right choice. I’d be happy to talk with you more. Let me know.
Hi Holly,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through right now. But I am glad that you’ve joined us all here as you will get so much support and help from everyone. Keep coming back here as we are all here for you and know what you are feeling right now.
Not much I can add to what the others have said to you already, but how do you feel about seeking a further opinion? I know your surgeon at Johns has ruled out surgery due to the other smaller tumours, but did he/she talk about the possibility of surgery at a later date if chemo now could deal with the smaller tumours? Just thinking out loud here and hopefully others may have some input on this.
There is nothing wrong with being scared, that is natural. But you are not alone here, we are all here for you and will help as best we can, and we care.
My best wishes to you,
Gavin
Hi Holly,
Welcome to this site and I am very sorry you had to find us. I don’t think there are any set answers for what you have asked. It depends on the oncologist and what they feel is best for you. My daughter, Lauren gets scans every three months usually. While undergoing chemo, Lauren has had several tumors disappear. She also had a radioembolization that may have helped as well, but another tumor showed up after it as well. Everyone reacts differently to different treatments. It is up to a trained professional to decide what is best for you. I wish you all the best and if you have any other questions I would be happy to answer them from experiences with Lauren. All the best to you.
-Pam
Dear Holly, welcome to our extraordinary family but sorry you had to find us. We know what you are feeling but once a game plan is set in to place your fright does turn to fight! I can’t help with the Chemo as My Teddy had a Whipple surgery and never had chemo. I can tell you to read up as much as you can as knowledge is so valuable for fighting CC. The other suggestion is that we are big believers in 2nd and 3rd opinions as Percy wrote. It would be up to your ONC about when to have scans. Without chemo Teddy saw the ONC every 3 months at which time they did LABS. He then had a PET Scan every 6 months. Know that you have come to the best site for CC and I know you will hear more welcomes from our amazing family. You are NOT alone! Please keep us updated as we truly care!
Hi,
If I were you, I will get a second opinion from an interventional radiologist from John Hopkins to see whether chemoembolization or radioembo will be an option if no mets to other parts of the body . If your HCC-CCA ( mixed type) tumors only confined in the liver,side effects of chemoembo or radioembolization will be much easier to tolerate . Otherwise systemic chemotherapy recommended by your oncologist will be the logical choice.
I may disappoint you in that being a CCA patient for 40 months and continuing doing research on this cancer, there is no such thing at this moment can be referred to as ” Magic bullet” for our kind of cancer.
; there is also no such thing as ” the best chemo regimen” for CCA.
I donot qualify to answer The last two questions since I am not a doctor, that will be one of the questions you should ask your doctor.
For a list of regimens, please go to the experience forum on this web site, and you will find under ” systemic chemotherapy in general for cholangiocarcinoma “
God bless.Hi! I am Holly, 55 years old and in perfect health, have not even hit menopause yet, low blood pressure, not a single health issue, love vegetables, etc! … except I have been diagnosed with primary liver cancer. They are not 100% positive about the cholangiomacarcinoma, because the AFP markers for hepatocellular carcinoma are very high also – – but no hepatitis, no chirrosis, nothing, and the pathologists are saying it’s the cc or some kind of wierd blend.
I have one tumor 6.7 cm in diameter and mutiple smaller ones. The surgeon at Johns Hopkins says surgery is not an option because there are too many little tumors.
So chemo is the next option. I am so new and so scared. Like all of you, I want the hardest hitting fastest magic bullet in the world! So what is the best chemo regimen? How often do you get scans to see if the chemo is working? Why can’t multiple tumors be removed? Can you freeze out little tumors while undergoing chemo?
Any advice would be most welcome and appreciated.
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