just diagonosed and need help with questions

mhelton, please feel free to call my mother to ask any questions you may have her name is susan dinkes 516-764-1647.

mhelton, let me share a few thoughts. My wife and I had a conversation many years ago about what we should do in the event either of us should be faced with a serious medical issue. The conclusion we came to: convenience should be way down the list of criteria. We decided a serious condition would be faced with a serious hospital and doctor(s) (i.e. only large, teaching hospitals). Unfortunately for my wife, I have been the most frequent user of the policy! In 2001, I had a severe heart attack, which resulted in 35% damage and requiring an immediate surgery. At the time, we lived in central NJ and had a cath workup done there. Once we had the bad news, the next choice was where and who. Since this was not a routine cardiac surgery, I opted for NY Presbyterian Hospital and asked my wonderful NJ cardiologist who the best surgeon at NY Presb was. His response was Dr. Mehmet Oz (yes, the very same you might have seen on TV). Several days later, I was there and had surgery, which was completely successful.

On to cancer topics. We have now moved to Maryland. My wife had a routine breast cancer screening done at a small local hospital. They found some “attypical structures” which required a needle biopsy, which was inconclusive. At this point, we did some investigation and found that there’s a small number of NIH recommended cancer centers on the east coast, such as Mass General, Sloan Kettering, NY Presbyterian, Johns Hopkins, etc. We ended up going to John Hopkins. My wife had a surgical biopsy done by a surgeon who did nothing but breast cancers. Results came back negative, but we go to Hopkins once a year, where my wife participates in a high risk screening program. This is not terribly convenient (Johns Hopkins is in Baltimore, about three hours drive each way from home, but makes my wife confident she’s getting the best care.

My choice for my CC care was NY Presbyterian, even less convenient, but again a NIH cancer center. I realize that choice of doctors and hospitals is very personal, but with something like CC, you want the best care you can get that doesn’t grossly inconvenience you and the caregiver.

My point is, if you are not totally confident in the diagnosis or any other treatment aspect, I would get a second opinion from a teaching hospital. You can find major cancer centers from the NIH website. Good luck.

Jim

Hi Aggiemom,
Welcome to the site.. I agree that you need to get to a large cancer center – where are you located?? The fact that you have a visible mass on a CT scan and an elevated CA 19-9 is concerning but a combination of factors is what diagnoses this type of cancer. I know the Mayo will not do needle biopsies for fear of seeding the cancer, but they do test via FISH staining, which is another indicator for Cholangiocarcinoma. The combination of these 3 ( Fish, visible tumor and high CA 19-9) gave us the positive diagnosis for my mother.

Best wishes to you and please keep us informed about your second opinion.
Ashley

Hi Aggiemom,

Welcome to the site. Sorry that you have needed to find us all but thank you so much for sharing your story with us all. And as Marion says, please do not worry about making long posts. All posts are most welcome indeed and I personally like long posts, I’ve made quite a few long posts myself since I joined here!

I agree also with Marion about seeking a major cancer centre and being seen by someone who has a lot of experience in dealing with CC patients. I’m guessing that you live in the USA and as I live in the UK, I can’t really help you with this but I am sure that others will come along soon that can help you here.

I’m glad that you’ve joined us all and I do hope that you keep coming back here as you will get a load of support from us.

My best wishes to you,

Gavin

I have been reading posts for almost 5 months, this is a very informative site and I appreciate all the people here. I have finally decided to register. On April 2, 2010, I had radiating pain in my right side, nausea, vomiting and diahrrea. I thought I had either something caused by the procedure I had 2 days earlier or food poisoning. On March 31, 2010, 2 days earlier I had a flexible sigmoidscopy dialation to stretch a anastomic stricture that I have had for years. This is due to surgery for Crohn disease that I have had since 1965. I am 63 years old, and active. I have been seen by a gastroenterologist for the last 6 years, so I called the GI, and the GI that was on call said you have Crohn disease and called in some Prednisone. At that time I was taking azathioprine and entocort for the Crohn’s, so I was severely immunocompromised. So 4 days later I made an appointment with my regular GI because I did not feel 100%. I was sent for an ultrasound to rule out bilary colic and they found a left liver mass of about 5 cm in size. I then had a CT scan confirming a left liver mass of 5 cm and a small 1 cm lesion that was anterior to the large mass. I had a normal CEA, normal alpha fetoprotein and a CA 19-9 of 4435. A liver biopsy was performed revealing adenocarcinoma, but they could not determine if this was metastic. The test revealed no cancer anywhere else. I have been taking Liver Function Test for the last 6 years because of the azathioprine I was taking, and they have always been normal.

I am sorry this is so long, I saw a oncologist and surgeon, was retested for everything, and am now being treated for cancer of unknown primary, presumably cholangiocarcinoma. I have had only 1 biopsy. The surgeon did not think resecting was possible due to suspicious nodes, however the oncologist is not sure that these nodes are suspicious. I am taking gemzar and cisplatin, until last week, when the test showed possible kidney damage, so they took me off cisplatin temporarily to recheck my kidneys.

I do not have bilary dialation. I have bilirubin total of 0.3. I have had no pain since the original pain on April 2 and 3rd, 2010. My liver function test is still normal with small variation since I am taking chemo. I do not itch. I am concerned that I am being treated for somthing that I do not have. I have not lost weight, in fact I gained about 15 pounds, I was so hungry. Does anybody have any suggestions? I really would like a definitive diagonosis. I know this is a reach and a stretch, but what if I have something else? Does anyone know a great diagonostician, or liver specialist. Sorry this is so long, but I feel stupid for doubting my diagonosis, and would appreciate any help.

Welcome!

Here are some tips for you:
*Always get a second opinion and make sure that you have a doctor/team of doctors that you trust. I take my father to Cleveland Clinic and to a local cancer center near his home and we’ve had great success. We went for a second opinion in Pittsburgh and were not happy at all with the doctor and his eagerness to help my father.

*Research everything! I always constantly research everything that his doctors tell us and prescribe him.

*Keep a notebook with notes from every doctors visit, document everything while staying in the hospital (i.e., every medicine administered, everything doctors report to you, etc.), keep all test results, and list all doctors used during your treatments and how to contact them. My notebook is growing constantly, but every doctor I meet says you are the girl I’ve heard such wonderful things about and I can’t wait to see your notebook.

Best wishes to you and your family!

mhelton, all i can say is if they don’t find cancer in your nodes and even if they say they have clear margins, REQUEST CHEMO. I have read so many posts and many people who didn’t need chemo, got cancer back. So Chemo is your insurance policy to knock out any bad cells that are not detected at surgery time. If you see an oncologist that won’t give you chemo in this sceanrio, find another one that will. That is my suggestion from all I have read from people. My husband had a whipple, had nodes infected, got treatments (radiation and chemo) and he was good for 3 months but then he had nodes infected again, It has been a battle to manage this and all his labs come back perfect like someoen normal so the only thing that tells us he has cancer is what is seen in the catscans!! How frustrating is that!!! So we have to wait 3 months to just find out good or bad news. This darn cancer is differnt for everyoen and so is the treatment process. Stay positive! We had a great surgeon for the whipple, he is head of the transplant institute in Memphis, he recommended our oncologist so we knew we were going to a doc that got the most cases like ours. We are comfortable with this plan and never felt like we needed a second opinion. You need to be comfortable but I will say that we started with an oncologist of our choice, a Christian one, then switched to the one the surgeon recommened and there was a huge difference in care and attention. If you can find an oncologist who has had more patients sent to them for this cancer or cancers in pancreas and liver etc, then they should be your best doctor choice.