New member – Darlene from Florida
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Darlene…….I do want to mention that the diagnoses of this cancer is rarely suspected. Most physicians never have come in contact with this cancer which very much mimics that of gall bladder disease. Therefore, your story is like that of many others – rare cancer – no one suspects it – physicians unfamiliar with this cancer – mimics other diseases. The good news is that it was found and you have treatments options available to you. Good luck on the upcoming scan.
Hugs,
MarionHi Darlene, I too wanted to welcome you to the site. I too was diagnosed with ICC last July. I started chemo and was told surgery would most likely never be an option. Well I proved them all wrong and had a major resection in January and they removed 6 segments of my liver. It sounds like you got a good team going for you but as others have said second and third opinions are very much encouraged. You just never know what one might say compared to the other. I wish you many blessings on your cc journey and sorry you had to find us. You will find that this group is extremely helpful, informative, and supportive. Many blessings to you.
PorterThank you all for the posts and the information you have all provided.
I know it probably isn’t but I almost feel like my case is so strange because originally I was told that it was cancer of the gallbladder that had spread to the liver and I think that is why they were just going to do surgery to remove the gallbladder and two section of my liver. Then some more tests later it was found that it wasn’t my gallbladder it was the liver and then of course no it ws CC after I had the biopsy.
I found a wonderful surgeon who is a Hepatopancreaticobiliary surgeon who specializes in liver disorders, tumors bile duct and complex GI. Dr. Cohen then brought my case before the tumor board and they felt the best course of treatment was to start the chemo immediatly since I had already wasted weeks getting all different type of scans and that was because one of the scans originally showed a spot on my bones and also they were concerned about something that showed up in the uterine/ovary area. Thank god after further test they found that the CC was a primary tumor and all else was clear.
I am currently being treated at Florida Cancer Specialist at the Good Samaritan Hospital in Palm Beach County, FL After reading some of the posts I guess maybe I should ask the oncologist if they are treating anyone else with the same type of cancer.
it wasn’t until my last visit with the Oncologist that I actually asked what stage I was at and he said well a 4. I know it is in my Bile duct and spread to the liver but it has not gone anywhere else such as other organs or the lymph nodes.
This is my first scan since starting chemo. I have done 6 rounds of two weeks on one week off.
I find that I am learning every day and reading everyone’s posts has been very informative. Thank you all and hugs to everyone.
Darlene……I would like to follow the others and welcome you to our site. Not sure why the oncologist reacted the way she/he did but for this disease in particular you would first want to obtain surgical opinions and that opinion should come from a physician “very” familiar with this cancer. You did what was the right thing to do, Darlene.
Below are the guidelines set forth by the Cholangiocarcinoma Foundation and can be found on the home page: Patients and Caregivers, tab: Newly Diagnosed.“Cholangiocarcinoma can be difficult to both diagnose and treat. If possible, newly diagnosed patients should go to a major cancer center or medical institution that provides cholangiocarcinoma patients the option to have their specific case seen by a tumor board and/or multidisciplinary team before receiving any kind treatment. A tumor board consists of a medical oncologist, surgical oncologist and a radiation oncologist – this team would jointly view your medical records making a recommendation for the best course of treatment for each individual patient. A multi-disciplinary team consists of the above (a medical oncologist, surgical oncologist and a radiation oncologist) plus any or all of the following: Interventional Radiologist, Advanced Gastroenterologist, Cancer Registrar, Genetic Counselor, Clinical Trial Coordinator. It is very important to find a doctor and team who is experienced in treating cholangiocarcinoma. “
Don’t have much to add to the wise responses received from Gavin, Lainy, Julie, Duke and Melinda other than that you are in the right place for support and caring. We are in this together.
Hugs,
MarionHi Darlene,
Welcome to the board. Glad you have found us but sorry you had to. Can’t add much to all the good advice you have already gotten, but I do agree you may want to get more opinions. Hoping things are going OK and that the scan brings you some positive news. Update us and let us know how things are progressing.
Darla
Hi Darlene, I’m so sorry that you are going through all of this as many of us are. My husband had great blood work, cancer markers normal and found the tumor incidentally due to blood in the urine. His only symptom was an unexplained weight loss, no itching or pain. We started with the surgeon as well and was told that he would either do the chemo first or the resection if he was able. My husband was diagnosed in April 19 of this year and had a resection for his 8x6x3cm tumor on May 2. Dr. Singh at the City of Hope in Duarte, CA took on this very difficult surgery which was followed by the gem/cis regimen similar to what you are going through. He had his three month scan on August 4, and is still cancer free. We will go for six months and then have another scan. I would agree with the posters up above to get a second opinion from a hospital that has extensive experience with cc. I think doctors and hospitals that do these resections frequently are better able or more willing to take on difficult cases. I’m not saying that doing chemo to reduce the size of the tumor is the wrong way to go, I’m just saying that some doctors are more aggressive at tackling these tumors that turn your world upside down.
Best of luck to you with your chemo treatments and upcoming scan on the 2nd. Stay head of the nausea with the meds that are prescribed and allow your body the rest that it so desperately craves.
Hang in there.
God Bless,
MelindaWill this be your first CT scan after starting chemo?
There are other platins out there besides cisplatin. I did not take well to cisplatin so my onc changed to carboplatin. I hope your onc is open-minded and understanding.
Was there something that caused your surgeon to jump right in with a port?
Just remember that you can’t change the past, only learn from it. Your attitude and that of those walking this path with you are of utmost importance. You have to have faith that God will provide you the grace to sustain you. There are numerous examples of that posted on these Boards.
Duke
Hi Darlene,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what you are going through right now. But I am glad that you’ve joined us here as you’re in the best place for support and help and you can expect lots of each from all of us here. Thanks as well for sharing with us and I am sorry to hear that the chemo is so tough for you. My fingers are crossed ror you that the chemo works as hoped for and indeed that it does lead to surgery being an option for you.
I know that so many of our members or their loved ones have been through this chemo regime and I am sure that they will be along soon to share their experiences of this with you. Please do keep coming back here and ask questions if you want to and we will help as much as we can. Please know that we are here for you and we care. I hope that the scan on the 2nd goes well for you and gives you some well deserved good news. Please let us know how this goes for you.
My best wishes to you,
Gavin
Darlene,
Welcome to the CC boards and the most wonderful group of people you will ever have a chance to meet. I wouldn’t have gotten through this far without them.
Do you know the size of the tumor? I also had an intrahepatic tumor in my left liver lobe. It was 5 cm x 4 cm x 4 cm when my surgeon at Mayo Clinic in Rochester, MN, removed most all of the left liver lobe. There are a lot of factors though, I’ve discovered, that affect the surgeon’s ability to operate on these tumors. However, some of the top surgeons can do things that local surgeons aren’t comfortable doing or just don’t have the skill to do.
Did you get a 2nd opinion?
Where is your surgeon located….medical center?
I understand about the chemo. My tumor is gone, so I don’t have that awful pain you describe on the 5-6th day. But, all the rest…oh yeah! ….including a lot of dry heaves. Everybody is different in how they respond to the junk. Tomorrow is my LAST day of chemo if my blood work allows me to have the day 8 Gem and I believe it will happen. Then, the 3 month CT scans and waiting begin. There are no guarantees.
I know that there’s another gal on here recently who was originally told her tumor was not operable, but after chemo, and shrinkage, suddenly she was operable, had adjuvant chemo, and now is living her life as fully as she can. There aren’t guarantees, but there IS HOPE.
I will say prayers for you that the chemo has shrunk that tumor and you will hear the good word that surgery will be scheduled.
Hugs…Julie t.
I had severe stomach pains and went to the emergency room. After several tests I was told that I had a mass in my stomach and I should go see a surgeon. Well I thought it would be best to go see my physician and after many tests and a biopsy I was diagnosed in May with Intrahepatic CC. The tumor was on section 4 and 5 of the liver and was too big at this time to remove so right now it is unresectable. You could have floored me. I have always had stomach problems (IBS, Diverticulosis, Cholitis) but this is not something I would have ever thought of. I even had a scan last april and nothing was there. My surgeon immediately put a port in me and walked me over to the Oncologiist and Radiologist to get everything set up. My Oncologist was very upset that I started backwords. Instead of started with an Oncologist I started with a Surgeon. He was upset that I should have been to see him weeks before I actually got there.
I am currently doing chemo 2 weeks on 1 week off with Cisplatine and Gemzar. My surgeon seems to think that after doing chemo to shrink it she will be able to do surgery. That is what I pray for but after reading so much about this type of cancer I don’t know. I have to say my tumor markers have been low, my blood work has been good and not too many of the side effects except the eating and loss of weight. My stomach gets full very fast.
I have to say that the chemo is dreadful. The first day I’m fine, the second tired, the third chemo fuzzy brain and the fourth, fifth and sixth day I have the most severe stomach pains that I can’t take it. Sometimes I don’t know how I will live through this. Maybe by the grace of god. I am so tired of being sick from the chemo but I know I have to do it. I am still working only taking off for my chemo day and sometimes that fourth day when my stomach hurts so bad I can barely get out of bed.
I am going for a scan on Sept 2 and meet with the Dr and do treament on the 4 to see if the tumor has responded to the chemo. I may also do some type of radiation in the future. I just pray for everyone that is going through this.
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