Shock and augh!
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If you are in Houston and surgery is an option I suggest calling Dr. Wood and his partners (houstonliver.com) they did my surgery in August (tumor on my bile duct, bile duct resection, and gallbladder removal, mine was benign thankfully, but still needed to be removed as they can become cancerous and the negative biopsies are of limited use in these cases).
Ike
Hi! My husband had difficulty with testicle swelling from being in a hospital bed for long periods. Much like they elevate your legs to prevent swelling, they would fold up a washcloth and elevate his testicles…one of the rather uncomfortable side effects that goes along with all this. We did have some laughs over it though!! Good luck and I hope u get good news soon.
Rob…..show it to the suregeon again. It is obvious that it is something and you deserve to be given an answer. Hang in there.
All my best wishes,
MarionHELP I have a new symptom.
During my stay in the hospital last week I noticed by accident that my right testicle was enlarged quite a bit. I showed it to my General Surgeon and he said it was nothing. Now the testicle has grown to 2x the size of the other one. It does not hurt but it is adding to this stress. Does anyone know if this is part of the same problem or is this something else? Is it possible to have testicular cancer at the same time? Wouldn’t the PET scan have picked it up or did they have to look specifically at the testicle for that (I think they did a full body scan). Please if you know anything take a moment and tell me.
Hi Rob….I would like to echo everything mentioned by the others. Remember that this cancer affects people at various disease stages of disease, but this is your cancer, this is your body, and this is your response to available treatments. Although, similarities exist ultimately no one can predict the outcome based on that of others. Much is still to be learned about this cancer and the current statistics do not reflect accurately the current state of disease survival. And, we must remember that someone always is in the top five percent. Why not you? Of course, we become anxious and we become frightened. Adding the seemingly never ending waiting game of biopsy results, physician
Hi folks. I wanted to check back in and let you know the latest. I did not have a Biopsy today. Unfortunately with the VA system it can be a lot of misinformation. I had been told to come in but no one gave me a time so I called in at 7:30 a.m. after some run around I spoke to the Surgeon who said he would have a resident give me a call and try to get me in today… NOthing.
I asked him about my PET scan and he confirmed that the Lymphnodes in my chest (2) are cancerous and there are other areas that lit up as well but he did not want to tell me over the phone (LIkE IT COULD MAKE A DIFFERENCE).
My main tumor is on the Right Lobe of the liver.
I called MD Anderson but they said they will not take VA Patients which only leaves me with the County Health System and that would be even worse. I don’t know if I can get one of their docts to review my case and offer an opinion or not does anyone here?
Thanks everyone!
Robert
Hi Rob,
My name is also Robert but I go by Bob. I just want to chime in with some encouragement. First, let me say that it breaks my heart when a young person with a young family is diagnosed with this evil disease. My prayers are with you and your family.I was diagnosed nearly fifteen years ago (Dec. 18) and even after surgey the prognosis was grim. They felt they bought me two to five years with surgery and chemo and radiation follow-up. By the grace and mercy of God, I survived. I was considered “cured”. Then a little over two years ago, I began having serious liver infections (cholangitis) caused by blockages and stones in the ducts in the liver. This was apparently a result of the radiation treatment. I was hopitalized many times with increased frequency and severity and was told by my Seattle docs that there wasn’t a good surgical solution. While in Phoenix for the winter, God led us to a remarkable surgeon who told me “I don’t know what it is going to look like yet, but I’m going to fix this”. I had surgery in March and haven’t been in the hospital with cholangitis since (knock on wood!!). There is always hope. Early on I had put my trust in the Living God to treat me mercifully and just without knowing the outcome. I too was prepared to see my Savior face to face but continued to pray for healing. It apparently pleased God to spare me and I am again enjoying good health. There is always hope…
Grace and peace to you,
bobHi Robb,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your diagnosis. But I am glad that you have joined in with us all as you have come to the right place for support and help, and you will get tons of both here from us all.
There’s not really much else I can add to what the others have said to you, but I wanted to stop by here and welcome you and say that I also agree with what has been said re a second or even a third opinion if you wanted to get one. And if you have any questions then please ask away and we will do what we can to help in answering them. Please let us know how everything goes for you.
Best wishes,
Gavin
Hi,
please keep us informed.
and make sure exactly where the location of your cc is.
It will be helpful later in our discussion.CC is a long and winding road that requires courage,patience and knowledge.
Try to treat CC as a chronic disease like diabetes or high blood pressure and you will feel much better in dealing with the disease.
God bless.Dear Rob, it certainly is a roller coaster and no one ever wants to buy that ticket. My husband used to say, “it is what it is, now let’s do something about it”. Oh, I know it’s not that easy but that is how he used to steel his mind. I guess the key is to try and stay realistically optimistic. Your collecting a whole cheering team on this Board to add to your own. We care.
Thank you everyone. It means a lot to me and it really does help. It’s such a rollercoaster of emotions right now. I am recieving treatment from the Houston VA Medical center as I live in the Houston area. I would rather go to MD Anderson but unfortunately I am one of those uninsured types. I did listen to one of the Anderson docs on here give a lecture on CC in advanced stages and it was very informative. My PET scan was on Friday at the end of the day. I was staying in the hospital (had been for all of last week) and they rushed me in to the procedure. But with the weekend and the Holiday on Monday I have to wait, hopefully something will come today. Also, I am praying I get my bio today. They told me that the Cancer board for the hospital meets on Wednesdays and while they did not think they would have all of my results this week they plan on presenting next wednesday so I know the Bio has to be done with time for them to get the results.
I don’t want you to get the idea that I don’t face this with courage. I do, but I also read so many negative things about the disease it begins to cloud my mind. I am so glad there is a resource like this on the net. Your stories help me “believe”.
Lainy, Bazel, PCL and Peggy I will pray for you and your families.
Hi Robert,
There is always hope; attitude plays a major role in fighting this disease. My husband, John, was diagnosed just over 3 years ago with Stage IV intrahepatic CC. He had no symptoms other than a small pain in his right side. He had a resection and his tumor was the size of a softball. They took 70 percent of his liver, right kidney, gallbladder, part of stomach, and part of colon during his surgery. The surgeon thought he was just going to be removing the large mass in his liver. Boy, was he surprised! Long story short, within seven months he had multiple tumors in the part of liver that was left. He has been on chemo treatments since March 2009. We take one day at a time and John continues to make himself do as much as he can each day. We are scheduled to see a specialist at Georgetown on October 17 as John’s scans in August showed the disease is progressing, but we aren’t ready to give up the fight. We also have two kids at home that we are raising (our grandchildren); a very active 8-yr. old boy and a soon-to-be 14 yr. old girl. Everything we do is centered around them. In fact, I believe they are what have kept John here this long besides the grace of God. He loves them so much and wants to make sure they get to experience things he feels they might not get to if he wasn’t here. So draw strength from your family and try to stay positive; and may God bless you and your family during this trying time. PeggyP
Hi,
You are only 42 years old,therefore the age factor is on your side.BTW I am 61,and is a patient of CC for 30months and I am not a doctor.
PET scan will determine if the cancer have metastasized to other parts of the body. If not, surgery will be an option for you;but you need a very experienced surgeon,not just any GI surgeon .
I am strongly agree with others to get a 2nd opinion on your diagnosis and stage etc. You said 6 months ago ultrasound of the liver found nothing but 6 months later you were diagnosis of cholangiocarcinoma(CC) of the intrahepatic CC type instead of peri or hilar extrahepatic CC or a combination of both types. please ask the surgeon where the tumor is actually located because the treatment plans is different.
Where do you live? Mayo Clinic in the mid-west,MD Anderson in Texas and John Hopkins in the East and UC San Fran in the west are the best choices for consultation for CC.
God bless.Hi Robert,
Sorry you had to find your way to this site, but you will find lots of support and great information here. You will get multiple comments, but here are some basics for a newcomer.
1. If you are ultimately diagnosed with cc understand that it is a rare disease and many oncologists have little to no experience treating patients with cc. You are strongly encouraged to find an ONC who has experience treating patients with cc. This website has resource to help you find an ONC with cc experience.
2. Second opinions are strongly encouraged. Because of how rare this disease is and the lack of experience in treating cc, a second opinion is encouraged. While you may or may not be in an area with a Dr. who has significant cc experience, most of these Dr.
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