Mom just diagnosed with CC
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Dr. Richard Schulick at Johns Hopkins performed my mother’s whipple. She is still alive, she is tiny….but she is still here and fiesty as ever. I wish you good luck and stay in touch.
Hugs,
Ronikatelinn…..Dr. Pawlik is “very” familiar with this disease. Good luck with your visit.
All my best wishes,
MarionThanks all! Jim–I actually already sent Dr. Kato all of our info…he is out of the country until Mon, but his office said he’d review when he got back. I did get the call yesterday from Hopkins, so we go Tuesday to Dr. Pawlik and his team. I’m hopeful that they come up with a treatment plan!
katielinn, if Hopkins doesn’t work out, there are three NYC hospitals that may. I was treated at NY Presbyterian (Dr. T. Kato, surgeon), who is fantastic. There’s also Memorial Sloan Kettering (Dr. Fong) and Mt. Sinai Hospital (Dr Myron Schwartz). All have gotten positive reviews from patients here.
Good luck.
Dear Katielinn and Charlene. Here is what Teddy and I practiced. First diagnosis and yes the waiting is almost unbearable. Then the diagnosis and we would look at each other and say, “OK. Now we know let’s get on with living and fighting the CC”. Then the plan gets in to place and honestly, the fright does turn to fight. Of course I was extremely lucky that Teddy had a steel mind and his attitude was always so up! I don’t know if this works for everyone but we would discuss things openly and I always made sure he heard me talk about it to family in front of him. I wanted him to have no surprises and somehow he needed to know what to expect. I would tell him about posts on this site and then let him know his could be worse. My God I don’t know what could be worse but I convinced him it could be worse. I have always said and will keep repeating attitude is everything. You don’t want to look back and say I should have smiled more, joked more, enjoyed more. Better to look back and feel good about time spent and that it was not wasted on downers. You have to be very strong, but you will never be sorry.
Katielinn,
I know what you mean when you say the waiting is the worst part! I love Lainy’s philosophy that once you have a treatment plan in place, the “fright turns to fight!” I hope she’s right, because I’m ready to help my dad take this on. Between second opinions and brushings and all that stuff, I just want a definitive answer so we can begin our fight!
Charlene
Katielinn,
Perhaps, this information can jump start your research into Johns Hopkins.Suzanne Smallwood-Massey
Multi-Disciplinary Liver Clinic Coordinator
Johns Hopkins Liver Tumor Center
600 N. Wolfe St., Harvey 611
Baltimore, MD 21287
Phone: 410-502-2846
Fax: 410-502-2388
Toll Free: 1-877-Liver99 (877-548-3799)
hopkinsmedicine.org/livertumorcenterKatielinn,
Please read my post regarding my father. We also live close to Philadelphia and were discouraged by the information provided to us by U Penn. We chose Hopkins and while my father’s outcome was not successful, the treatment he received for this disease at Hopkins was exceptional.Tim
Well the oncologist was not helpful AT ALL. She wasn’t able to answer any of my questions (many that I’ve gotten directly from this site) besides that mom is Stage IV. We did have one piece of positive news yesterday that insurance is covered! So that was a relief.
Still waiting to hear back from Hopkins to see when we can get in there…the waiting is the worst part. We just want to get started on a treatment ASAP! Hoping to hear from them today….
Hi Katie,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you have joined us all here as you will get a ton of support and help from all of us. We are not doctors, but there is so much information here and please, feel free to ask any questions that you might have and we will do what we can to help in answering them.
Some links that may be of use to you. Major treatment centres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
And this is a list of doctors created by the members here –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
My dads CC was also deemed inoprable from diagnosis and I remember how that felt when we got the news, and yes it was scary. His was deemed inoperable as the tumour was to close to the portal aretry and he had PDT as his treatment along with having a metal stent inserted.
You will find out more information tomorrow when your mum meets with her oncologist and please let us know how this goes. But yes, I do agree that it would be best if your mum could be seen by a doctor who has experience in dealing with patients with CC in a major centre. When your mum was diagnosed, did the doctors talk about other treatments such as chemo, radiation etc?
Please let us know how your mum gets on and keep coming back here. We know what you are going through right now and we care.
My best wishes to you and your mum,
Gavin
Hi All-Star,
Thanks so much for getting back to me! It says that there are greater than 30 liver masses scattered throughout both lobes of the liver, measuring up to 5cm in diameter. They are more prominent in the left lobe of the Liver. Consistent with hepatic metastasis. Once we got the biopsy results, that’s when we found out it was originating from the bile duct. Her blood work came back normal, and I don’t have any of those levels that you asked for as of yet. I’m hoping to know more after our appointment with the oncologist tomorrow. Obviously hearing that this is not a surgical case is very scary as I’ve read that surgery is the best treatment. I’m hoping chemo or other treatments can eventually make surgery an option. Just very scary. Any info you have would be great! And thanks again.
~KatieHi,Katie,
If possible,please quote exactly the part of the CAT SCAN report directly about the”20-30 nodules “so that I will have a better idea about your mom’s condition.
Can your also provide the blood work(inside the BMP report) of ALT,AST and ALK Phos and tol.bilirubin,CEA and CA19-9 and or AFP if you have them?
I am not a doctor,I am just a patient but I think I can help you in understanding your mom’s case a bit more.
Gamzar/cisplatin;Gemazr/Oxaliplatin;Gemzar/Xeloda are systemic therapy to name a few;5FU and bevacizumab or erlotinib are among others.
Depends on your mom’s condition,location of the nodules,other non systemic treatments such as RFA,chemoembo and Sir-spheres are available in the radiology department of hospital.
In the meantime,
God bless.Hello all,
My mom is 57 years old and very healthy. She noticed a lump under her rib a couple weeks ago, and was told it was her liver and that they’d have to do a CT. The CT scan showed ~20-30 “nodules” on her liver but no other tumors were found. We just got the biopsy results on Friday and were told that it is Cholangiocarcinoma and that it is not resectable due to the number of tumors on her liver.We are meeting with an oncologist tomorrow, but I know that we REALLY need to get to a CC specialist ASAP. We live close to Philadelphia and after doing research, the first place I’d like to try is Johns Hopkins. I called and of course they don’t take her insurance
I’m hoping the oncologist can call the insurance company and explain that going out of the network is a necessity.Does anyone have any advice or had similar results (numerous tumors on the liver)? My mom still feels fine but we are obviously very upset and worried about this diagnosis. Any insight you could give me would be so helpful and appreciated.
Thanks
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