Newly diagnosed and scared
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Porter….Although the scan information is one of the most valuable tools for diagnoses, it is accompanied with what we call: scananxiety. It is one of the more common maladies on this site. But try to stay hopeful because; too much still has to be determined by the physicians. Also, being that you are in the “vicinity” of Colorado you may want to consider a second opinion with this physician:
http://www.ucdenver.edu/academics/colleges/medicalschool/departments/surgery/Pages/Welcome.aspx
Know that a tidal wave of support and love is heading your way.
Hugs
MarionThank you so much for your support. I am so confused about this diagnosis as I feel fine in general. The mass on my liver 3 years ago was 5cm over the past 3 years it grew steadily but they were not concerned. I went into er and found out that this thing is enormous. I find myself being very angry! How could they let this happen? I am now not operable and I am terrified I will go in on Friday and be told that no treatment is available. Some days hopeful the last couple of days I feel hopeless. At this point I don’t know what’s going on and awaiting my first pet scan Friday. I look at my two kids and just break down and cry. I still can’t believe this is happening. But thanks to this site I don’t feel so alone. I appreciate and send out all my faith care and compassion and admire you all!
Hi Porter, I’m just emailing to say to you that you are not alone. My mum is in the same boat as you and was originally diagnosed with a benign liver tumour and has recently received a diagnosis of ICC. She’s had pain in her liver area for years. We’re all in this together and I am holding hope for both you and my mum. Always here for support. Best wishes, Jules.
Hi,
If you have time, the links below may be of value to you.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=47365#p47365
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
God bless.
Hi Porter,
I want to welcome you to our family and I am so very sorry that you have a reason to be here. I know that reading all the statistics, especially when you don’t know much about your own situation yet, can be be so scary. Remember, that statistics are just that and you are not a statistic! I am a 3 year 7 month survivor of extra-hepatic CC so there is hope. Someone has to be on the good side of statistics and why not you!!
Please keep us posted about your situation. We are here to support you in any way we can.
Sending positive thoughts your way!!
-Randi-Hang in there sweetie!!! This forum is amazing and has helped us we have a little one too and its so overwhelming to read the stats that this only happens to older people but it does happen to my husbands age and even younger. My husband goes to MD Anderson and see Dr. Javle. We are so thankful we did because we did find out Gordon can have surgery. In Austin Texas we told it couldn’t be done. So now guess what? We have hope!! When before we felt like we didn’t. We too have a strong faith and there is no way we could have gotten through this. Research, ask advice and get 2nd or even 3rd opinions!! I will keep you in my prayers!
I am overjoyed with all these readings, care and support. This is exactly what I have been needing. Thank you
Porter….I too would like to welcome you. Support, education, and an experienced medical team comprise what is of most importance when touched by this disease. We are strong believers in second and even more professional opinions hence I would advise you to gather all medical records. (This includes everything and anything pertaining to the diagnoses including, blood tests, physician reports, etc.) As a patient, you are entitled to it – everyone should have it in his/her possession. I agree with Lainy, try not to look at the worst rather try to understand that now you are dealing with a disease that can be conquered or – as it happens in many instances – a disease that can be dealt with similar to a chronic disease. So, hang in there, dear Porter. Let’s await the PET scan results and the consultation with the oncologist. Please keep us posted – we care and we are in this together.
Hugs,
MarionThank you for the encouragement and support. Fortunately I have a lot of support around me but something about joining this forum and being around others who are going thru it or have been is sad yet comforting and encouraging. I live in Oregon and now going through OHSU.
Dear Porter welcome to the best little club in the world that no one wants to join. You have every right to be scared and that is normal besides feeling like you were hit with a baseball bat to the stomach! I promise you that once treatment is begun your fright will turn to FIGHT! There are 3 things we stress here #1 we have had miracles on this Board and we always have HOPE #2 Knowledge is the best tool we have for fighting this disease and #3 We are big believers in 2nd and 3rd opinion so please keep all this in mind. As for the youngsters I always feel honesty (without scare) is the best policy. Kids are resilient and also need to know Mommy is sick and they will become your little soldiers. I believe it is important to let them help you. My kids were 8 and 9 (many years ago) and I had a hysterectomy and could not do steps. The laundry was downstairs and I actually taught them to do the wash. Joy of joys they just kept on for years until they left home. Just an example.
Where are you going to be treated? Try not to get caught up in bad prognosis stuff. My goodness. we have had quite a few Members at Stage IV and doesn’t always mean no hope. BTW you wrote a great post so don’t worry about that either. Before you know it you will be giving others advise here. We all learn from each other. Wishing you the best on your PET Scan and please keep us updated as we truly care.Hi my name is Porter and I am a 34 year old mother to two beautiful wonderful kids 8 and 6. I am not quite sure what to say or how to start. Back in 2010 due to some abdominal pain I went in and started having tests done. I was diagnosed with a liver hemangioma at the time and they have been monitoring it for the last 3 years. During this time it has increasingly gotten bigger. Back in may I went to the ER for pain thinking my hemangioma had burst. They did a scan and told me to follow up with my GI to once again be sure it was indeed a hemangioma. Well after 2 biopsies first one came back benign with a diagnosis of a rare hemangioma called sclerosed hemangioma I was disgnosed last week with this bile duct cancer. At this time I don’t know what stage and meet with an oncologist next week to receive my first pet scan and consultation. I was told by my liver specialist it cannot be removed or respected due to where it is placed and its enormous growth. My emotions are running like crazy. I don’t know what to tell my children. Everything I research seems to read very from with poor prognosis. Most my blood work is normal having very little symptoms aside from some pain and otherwise healthy. I am learning to find my faith on this new journey and would like just a little ounce of hope as I feel scared and hopeless and afraid.
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