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(21 replies, posted in Good News / What's Working)

This is absolutely fantastic!  Thanks so much for sharing this good news.
Best regards for Mark's future!

Marion, I'm writing to let you know that I was able to get a consult with Dr. Carlos Corvera yesterday at UCSF and I want to thank you so much for suggesting getting a second opinion there.  Dr. Corvera does an average of 1 CC liver resections a week vs. the other surgeon my oncologist recommended that does 1-2 per year which is a huge difference.  I have to change my medical group from Alta Bates to Hills Physicians and it's a considerably longer drive from the Oakland Hills to SF but well worth it.  UCSF has been very helpful in assisting with the process of expediting my switch of medical groups.  I was very impressed not only with Dr. Corvera but his staff and how well regarded UCSF is.  I need a new MRI done since my last one was in July and that has already been arranged for Oct. 7th.  My surgery will be scheduled fairly quickly after that.  As we all know, this is very scary and we are faced with dealing with our own mortality in ways we never had to before our diagnosis.  It's forced me to get my affairs in order (which I had been procrastinating about before).  Hugs from family members are longer and more meaningful and I'm trying to do my best to stay upbeat not only on my own behalf but to help my family deal with me being given this diagnosis so soon after their father and grandfather passed away.  I'm also doing my best to remember that laughter can be the best medicine!!  Thanks again for your input about UCSF.  My best wishes to all of you.  XOXO

Thanks for your advice Lainy.  I actually feel very comfortable with my oncologist, it's the surgeon that I am worried about since ultimately, that is where the expertise is most important.  The surgeon I've been referred to is not a CC specialist but is "just" a general surgeon.  My children know about my cancer diagnosis (but my grandchildren do not at this point).  I feel like they have already been bombarded with their father/grandfather's recent death so my natural instinct as their mother is to protect them from more heartache and stress because of what is now happening to me.  It's very hard to stay positive and upbeat about my own diagnosis when I am still grieving for my husband.  At least I found out about my CC by accident and am a good candidate for liver resection and am otherwise physically healthy.  Thanks again to everyone here for this inspiring and wonderful place to share feelings and concerns.

XO,
Satchie

Thanks so much for this info Marion.  I called my oncologist's nurse who has been very helpful.  She explained the procedure to me as to what I need to do to get a second opinion at UCSF and I will follow through with that.  My appt. with the general surgeon (through my HMO) is this coming Thursday afternoon so I need to be patient and proceed with obtaining a second opinion afterwards.  It's very comforting to know this forum exists and thanks again. 

Best wishes and hugs,
Satchie

Thanks for all of your kind words.  My insurance is an HMO through Alta Bates Medical Group and I believe I cannot go to UCSF because of being locked into my HMO.  My surgeon is supposed to be Ajay Upadhyay of First Surgical Associates who is listed as a general surgeon and cc is not listed as a specialty of his.  I live alone and my children have very busy lives so I don't really have an advocate to help me figure all this out and feel like I have to just accept who my oncologist sends me to based on insurance company approval.  Sandie, thanks for sharing the size of your tumour and the fact that your resection was successful.  That is such good news for you.  As you all know, this is very scary and I was still mourning the death of my husband in late March when I found out about my cancer in early June.  It's very hard to concentrate on what is best and I'm trying to minimize the impact on my children especially since they recently lost their father.  There never is a good time to find these things out but it's especially hard when I went through my husband's chemo and subsequent death so recently.  I have no choice but to try to be as strong as I can.  Thanks again for your responses.

Hi - I'm new and I may have posted my introduction in the wrong place but I'll get the hang of this.  Just found out I have cholangiocarcinoma but luckily PET scan came back negative for any spread at this point.  All my blood work is "ok."  This was caught by accident due to a CT scan that was done for another issue.  It's taken 3 months to get to the point of finding an oncologist so it's been nerve-racking for me and my family - especially the waiting!  My tumor has increased in size from 1.9 cm on June 7th to 4.5 cm on Sept. 4th.  I'm told a liver resection is the best thing to do but now I have to wait for that to be scheduled.  I wrote this question in another area (sorry, I don't mean to be duplicative, but I'm brand new to this site).  I'm wondering if it's your experience that these tumors are fast growing.  My husband passed away last March (from cancer) and my family and I are still dealing with his loss and now we've got my diagnosis to deal with.  I'm doing my best to keep myself calm on behalf of myself but also my children and grandchildren but it's very hard.  Thanks much for any input you can provide me with.  Best wishes to all of you!

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(45 replies, posted in Introductions!)

Hi - I'm new and I may have posted my introduction in the wrong place but I'll get the hang of this.  Just found out I have cholangiocarcinoma but luckily PET scan came back negative for any spread at this point.  All my blood work is "ok."  This was caught by accident due to a CT scan that was done for another issue.  It's taken 3 months to get to the point of finding an oncologist so it's been nerve-racking for me and my family - especially the waiting!  My tumor has increased in size from 1.9 cm on June 7th to 4.5 cm on Sept. 4th.  I'm told a liver resection is the best thing to do but now I have to wait for that to be scheduled.  I wrote this question in another area (sorry, I don't mean to be duplicative, but I'm brand new to this site).  I'm wondering if it's your experience that these tumors are fast growing.  My husband passed away last March (from cancer) and my family and I are still dealing with his loss and now we've got my diagnosis to deal with.  I'm doing my best to keep myself calm on behalf of myself but also my children and grandchildren but it's very hard.  Thanks much for any input you can provide me with.  Best wishes to all of you!

Hi - I'm a newbie so forgive me if I don't post this in the right place.  I was recently diagnosed with cholangiocarcinoma which was detected accidentally on a CT scan for another problem.  It's taken 3 months of insurance company approval delays, my PCP being on vacation, etc. but I finally saw an oncologist who recommended a liver resection.  I had an ERCP biopsy done but was told the pathology lab said my tumor is "undefined" but the oncologist still recommends a liver resection.  All my blood work including tumor markers has come back "negative."  I've had a PET scan that determined no other parts of my body are involved which was great news so this is apparently in the very early stages.  I am concerned because back on June 7, 2013 when this was originally detected, my mass was 1.9 cm.  The PET scan I had last week indicated it has grown to 4.5 cm.  Is it your experience that these types of tumors grow rapidly?  Any info would be much appreciated.  I'm so glad there is a forum for us to communicate.  I wish all of you much success with your cancer ordeal!