jim-wilde
Forum Replies Created
-
Posts
-
Mark, regular scans (MRI or CT) are a normal part of the post op deal. For the first two years, most doctors want scans done every three months. There’s certainly ‘scanxiety’ along with the scan, but your father will relax a little when he gets a few more normal ones.
I’m hoping for lots of normal scans for your dad. Good luck.
Great news … I’m ~ 2.5 years out from a resection at NY Presbyterian, and still get ‘scanxiety’ when the CT’s come up.
Keep the good news coming!
Byron, I had none of those conditions. My CC was discovered as a result of a routine liver function test (done quarterly BC of high statin and triglyceride reducer meds). Other than cardiac issues, I was pretty healthy and had zero CC symptoms when the diagnostic process began.
You asked in your other thread about whether my dad loved NM. Well, he was moved there in 1947 by the contractor employing him, and a few years later they wanted to move him to Tulsa and he declined. He stayed in the SF area until he died in 2001. He was always fond of saying “NJ is a good place to be FROM” (He grew up in South River, NJ).
mustangmort, my dad lived in Santa Fe, NM for many,many years and understand that a 6.5 hours drive is nothing in the SW and Rockies. BTW, we don’t talk miles here, it’s hours! We just happen to have a number of superb cancer centers in NYC and Balt (NY Presbyterian, Memorial Sloan Kettering in NYC, Johns Hopkins and U of MD Medical Ctr in Balt). I landed at NYP largely due to prior contacts there in cardiology, and in fact my dear cardiologist Dr. Sun Hi Lee acted as our ‘tour guide’ at NYP, a hospital with over 20,000 employees. Dr. Lee was involved in all aspects of my care, including lobbying the surgeon to take me on, given some significant cardiac issues.
I would ask Huntsman Cancer how many cases they see a year. I doubt the major cancer centers see more than 50 to 75 patients a year as new CC patients, given the national total, and maybe fewer. BTW, other cancers don’t count (and are all more numerous). I relied on NYP for my post surgery adjuvant chemo also, although the infusions were local to where I live. All of the post surgical followups, CT’s and PETs have been back to NYC as well. 2.5 years out and still making lots of trips to NYC for followups.
Have you had an ERCP yet? It’s a diagnostic endoscopy and also used to place stents in the case of billiary blockages. It’s often done early on to confirm the nature of the cancer and extent in the bile ducts. Time may not be your friend here. Some cases of cc progress slowly, others very fast. My doctors all assumed it was a fast mover in my case, whether or not that was true.
Do you have an advocate (wife, friend, etc.)? Very helpful to take notes and maybe recall stuff you don’t. We still refer to notes from more than three years ago.
I don’t think NYP and Dr Kato have any charge for a long distance consultation. Many hospitals do charge for such services.
Where someone goes for treatment is a very personal choice. I wish you well again.
CC is rare, with ~ only 2000 cases per year in the US, so only the major cancer centers have the experience and skill sets necessary to diagnose and treat this horrible disease. I live on the Eastern Shore of MD and traveled to NY Presbyterian in NYC (no where near where I live) for diagnosis and treatment. There were plenty of hospitals and doctors in between, but in my opinion, none had the experience and resources that NY Presbyterian (and several other NYC hospitals) had. I put convenience way down the priority list and don’t regret the choice I made one bit. I had a successful resection in 2009 and so far, am still clean. Additional opinions are almost always a good thing with a possible CC diagnosis. In my case, I had an ERCP done at NY Presbyterian and the doctor (Peter Stevens) had seen enough cases of CC, that he didn’t need to take a biopsy sample (increases risk of spread), knew immediately what the cancer was, and pointed us to Dr. Tomoaki Kato, a brilliant young surgeon. There was never any doubt about the diagnosis or how to proceed, just an assessment of the risks.
All I can suggest is to find the very best care you can find. Good luck and I pray for a good outcome for you.
Kate, didn’t receive anything … my email address is wilde1j@hotmail.com. That will work. Looking forward to hearing from you.
Kate, I assume you (your Dad) are in reasonable proximity to NYC. Have you seen Dr. Tomoaki Kato at NY Presbyterian? He performed a successful resection on me a little over two years ago and has a reputation for taking the most difficult cases that others deem inoperable. I can’t guarantee a miracle, but he is one of the very best in the world. There is complete contact information in the link below my name under “Hospitals”. I can promise that Dr. Kato will give you an honest assessment.
Good luck.
Well, now I’m really puzzled. Thyroid test came back normal, as did everything else, but CA 19-9, which came down from 133 to 73. Something’s going on, just not clear what. Talk to the doctor Monday.
Rachael, so sorry to hear of your mom’s diagnosis. I would second getting opinions from Cleveland Clinic also. This is a rare disease {around 2000 new cases per yr. in the US), so even the major cancer centers don’t see huge numbers of cases, but they are more experienced than the smaller regional hospitals. Good luck in getting treatment for your mom. Effective advocates are a patient’s best friend. My wife was mine, so I speak from experience.
God bless you.
Marion, the hair deal is only small amounts at a time, so there’s no appearance effects … just a nuisance. And yes, it was great to finally meet dear Kim, even if if had to be at the hospital. We’re working on a lunch in Philly soon, which will be a more fun setting.
Gavin, we’ll see if it’s definitely the thyroid mischief at work. If the blood test comes back positive, there apparently are other blood tests and Dr. Siegel said I would get a PET of the thyroid area next in that case also. The docs at Presbyterian are unbelievably thorough. I mentioned to Dr. Siegel that I had a soreness deal on one of my ribs and she immediately had a radiologist reexamine the CT’s to make sure nothing was going on there. Turns out it’s likely a bone bruise of unknown origin.
Just had a bit of a scare. Had a series of CT scans 8/16/11 as a result of two elevated CA 19-9 tests (1st was 88, second was 133 after several years of normal [< 37]). The scans were totally clean (we were expecting very bad news)! So the onc Dr. Siegel has ordered a thyroid blood test. I'm still learning about some of this stuff. Apparently, an inflammation can cause CA 19-9 results to be elevated. Also, learned another piece of information I was previously ignorant. Dr. Siegel's PA told me that hair loss (which I've had for some time) is consistent with thyroid issues. The good news is that thyroid issues are generally pretty easy to manage; cc not so much. While at NY Presbyterian, I met my dear friend Kim, for the first time. She was there for a procedure, which had yet to begin when we parted. A very special occasion for both of us. So, I have dodged another bullet and approaching 2.5 years clean. Going to celebrate very soon with my long suffering medical advocate, dear wife Janis, very soon. Sometimes I can’t believe how lucky I’ve been. I hate cancer with a passion!
It’s not much different than any major abdominal surgery. A week or less in the hospital, barring any major complications. A few months for things to get back to close to normal. Almost all patients survive the surgery. For me discomfort was minimal. They gave me a Rx for pain killer, and I think I used two or three, just to make sure I got a full night’s sleep.
Be glad you’re a potential surgical candidate.
Good luck.
