September 21, 2016 at 7:04 pm #93152
Thank you so much for your responses! It is appreciated. I am hoping to post here not only for the support, but also to add our experience as another data point to maybe help others with this.September 13, 2016 at 3:12 pm #93160shelliecMember
First of all congratulations on your engagement and soon to be wedding! How exciting! I know what you are going through my fiance is also diagnosed with CC! Life changing for sure, you are going about it the right way the same way we are one day at a time. Dale (fiance) was pretty much told the same thing your fiance was… SO so hard to deal with, but luckily you found what I did this forum to help you get through this. Keep positive for her and you and enjoy every day and every moment with her. Fight like you didn’t know you could which I know you can! Dale was diagnosed a year ago they gave him 3 weeks so those doctors do not know it all only one person does he is in the sky looking down on us he will ultimately decide when it’s our time. Good luck and HUGS to you both
ShellieSeptember 12, 2016 at 4:10 pm #93159hamptonsarasotaMember
Sounds similar to mine in that it wasn’t spread to the liver at all. Just one single mass in the bile duct pinching it off. I had a plastic stent put in and surgery 2 weeks after finding the mass. I was stage IIB, I think III and IV are when there are lymph nodes involved and it has gotten to the liver. I agree with everyone, 2nd and 3rd opinions are key. I only went with the one because when my wife asked the doctor how I was going to leave the hospital, he said I was going to walk out on my own 2 feet. Definite vote of confidence for sure. Sloan Kettering, Dr. Jarnagin was my surgeon and who I saw last month. Best of luck, use us as resources and as usual, we will help however we can!August 31, 2016 at 3:03 pm #93158jpmskiSpectator
I’m unsure of how much time has past since the diagnosis from all the posts. You need to get your package of medical information together that you’re going to send out to all the surgeons are the country that might be able to do it.
If it hasn’t spread, if it’s a single tumor still…your mission right now is to put this in front of the right people. Do not get put on some path where you are going ‘station to station’. You need to drive the boat. How’s that for mixing metaphors?
If it’s a single tumor, or at least they believe so, you do not stop until every surgeon has said no. I witness two completely different opinions about the same information. One said Yes and they other said No, and they were both absolutely certain of their positions.
Nothing will work faster than surgery. Not even close.
JoeAugust 31, 2016 at 9:37 am #93157middlesister1Moderator
I am so sorry that you are starting off your marriage with CC, but still very excited for you and your upcoming wedding. Mom received her diagnosis on their 54th anniversary, and they thought that would be their last. However, for their upcoming 57th we’ll be celebrating by going back down to Fort Myers Beach in October.
There is hope. Have a wonderful time , put the CC on the back burner (yeah- easy to do) and then come back refreshed with your sleeves rolled up and ready to fight .
Congratulations and best wishes,
CatherineAugust 30, 2016 at 8:56 pm #93155iowagirlMember
I can’t add much to what the others have said thus far. What I can say, is right now, try to focus on your wedding…..treasuring each moment. And….a beautiful moment the wedding will be. . Life…whether measured in days, weeks, months or years…..is to be lived for each moment. Love, when you find the “right” one to spend your days with, makes life worth living. There may be some moments that cause you both to tear up, but just know, that is an expression of just how deeply you care and love each other. May your wedding bring many happy moments that overshadow anything that has recently happened or worries about what is to come. My husband and I have been married 41 years and through this cancer, he has been my rock, but I worry about him also. Caring more about the person than yourself……That, dear Nick, is LOVE!!!! My wedding wish for you, is to both feel this depth of caring and find joy in one another and that it will define your lives together, not the cancer. Happy Wedding…Happy Marriage.August 30, 2016 at 6:48 pm #93154darlaSpectator
So glad that you have found us, but sorry that you had a need to. It sounds like you two are doing everything right. A second opinion is important and also going to those who have dealt with this disease. So many have not heard of it or have any idea of how to treat it. Also going ahead with your plans to get married. Keeping your life as normal as possible in the face of these challenges. Congrats on your upcoming wedding and honeymoon. Enjoy .
Your great outlook and attitude will help you get through this along with all of the wonderful people here. You have found the kindest, most knowledgeable and understanding people when it comes to dealing with this disease. Please keep in touch and let us know how things are going. We truly do care.
DarlaAugust 30, 2016 at 5:42 pm #93153
Debbie, thank you so much for your reply. It is appreciated. Our DF oncologist also advised us to get a second opinion, so we are going to be seeking that from MassGeneral in Boston as we move forward. Molecular profiling – hadn’t heard of that. Will be certain to ask her doc to pursue that. SM is a fabulous fighter with a lot of life left to live, so we are going to be certain to explore every avenue open to us.August 30, 2016 at 5:23 pm #93156debnorcalModerator
Wow, I am so sad after reading your post. SM is so young, and this is both the happiest time of your lives as well as the saddest. I so wish you didn’t need to join our group, but am glad you did find us. I’m hoping you find this group to be a great source of information as well as support.
Before offering any advice, I would first like to comment that I am so impressed with your attitude. You’ve quickly gotten your arms around this situation and are choosing to to focus
on enjoying your upcoming wedding, while preparing to fight this monster soon. You sound like a remarkable guy, and this attitude should serve you well as you move along on this journey.
It is good that SM is being treated by one of the medical facilities highly experienced in treating CC. The Dana Farber doc is most likely saying she is unresectable due to spread to several areas, which makes sense to me. However, chemo may not be the only viable treatment option. I would ask the doc about molecular profiling, as there are a number of treatments and trials that are successfully treating many of our members. Certain treatments are proving to be successful against specific tumor expressions, so it’s important to have the test done in hopes of matching up with an effective treatment. We have some members being treated with immunotherapy, Keytruda, and a host of other treatments. Also, despite being with an expert CC center, it would be a good idea to get a second opinion from another expert center, as docs may have differing opinions and experiences.
I hope you and SM have a beautiful wedding/honeymoon, and I wish you all the best in your fight.
DebbieAugust 30, 2016 at 4:46 pm #12733
Hello! Wish I was not posting here, but thankful to be able to find support. Hoping to share a bit of my story and find others who can relate.
First the good news – found the love of my life two years ago and we are getting married in 10 days! She is the most amazing woman I have ever met in so many ways. She is 38 years young.
Now the struggle (pardon me if I am a bit long-winded) – my Fiancee “SM” was taken to the ER for high levels of biliruben found on a blood test and abdominal pain. Was transported from the local ER to Brigham and Women’s in Boston. Underwent CT and MRCP scans. Constriction or narrowing found on her common bile duct. ERCP procedure was performed (this is about two weeks ago now) which resulted in a metal stent being placed to open her common bile duct, and brushings were taken from the mass for pathology. SM ended up with a case of painful pancreatitis which kept her in the hospital for about a week. Brushings came back from pathology as “inconclusive.”
The next day, we were visited by a surgical oncologist (scary!) from Dana Farber who requested she undergo a PET scan. An ill-defined area around her common bile duct “lit up,” as well as two different areas on her peritoneum. A CT-guided needle biopsy was conducted. SM’s case of pancreatitis resolved, and she is now home and feeling better with some minor lingering abdominal pain.
Yesterday, we had our initial consultation with a medical oncologist at Dana-Farber. We were told that the biopsy was again “inconclusive,” which is not necessarily good news as all other signs and scans pointed to cancer. A blood test for tumor markers was taken, with one marker “inconclusive” and another “slightly elevated.” Not enough to start chemo without more info. SM has been scheduled for a laproscopic surgical biopsy in a few weeks, which should give them a final answer on how to treat this.
We were told that while they can’t say with certainty what exact type of cancer this is, that it is definitely “something,” but they need more info as they will not start chemotherapy without exactly knowing what they are dealing with.
We were told that, based on the likely assumption that this is cancer, that this is non-resectable – inoperable – and that the only treatment is chemotherapy. The chemotherapy will control the cancer “for a period of time.” This is most likely extra-hepatic cholangiocarcinoma. In essence, we were told that she is going to die from this after “a period of time.” Wow. Hard to wrap your head around this. Hard doesn’t even begin to describe it. Has been an emotional rollercoaster.
So, we are going to take things a day at a time. We are getting married next week and going to have a fabulous, happy day! We are going away for a few days, and then start our fight. She will have her surgical biopsy and hopefully begin treatments if warranted. I have no clue what the future looks like beyond this or how long our future will be. We are both so scared but trying to be strong for each other and live in the moment.
I am so happy to have found a community of people who are dealing with this. Before two weeks ago, I had never even known what a “bile duct” is, let alone cancer of it. Glad to see people going about their lives with this. Thank you.
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