Topic: Hello - I'm new to this board

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!

Re: Hello - I'm new to this board

Dear Satchie,
I saw your post elsewhere, and know you have received some responses.
Sorry you had to join our club, but you have come to a great place for information, experience, and support. We are a great family!
From what I know, there are a number of different mutations of this cancer. I believe most are fairly quick to grow. The tumor in my liver grew from about 3cm in Feb. 2011 to almost 5.5 cm in April 2011. So if that is anything to go by, yes, I believe, unfortunately, most of these Tumors can grow at an amazing rate.
I was also diagnosed because of another issue. I was getting an ultrasound for gallstones and the mass in my liver was discovered, so thankfully you had another health issue. I know, that sounds bad, but it might not have been caught without your other health issue.
Good luck with your treatments. Where are you being treated? I hope you have researched and found someone with experience treating cc.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Hello - I'm new to this board

Satchie....welcome to our site.  I am so sorry to hear of your diagnoses.  I would suggest to you to gather all medical records including, blood tests, scan results, physician reports, etc. and contact UCSF for a second opinion.  The UCSF physicians are very familiar with this disease and that, to me, is the key for accurate evaluation and subsequent treatment protocol.
Much information will come your way, dear Satchie. Given that your family has to deal with the loss of your dear husband too, I can just imagine how difficult it is to have to yet confront another cancer.  But, dear Satchie, this cancer is very individual.  Although, we see many similarities, we also witness numerous deviations in response to treatments.  It might help to think of it as your cancer, your body and your very own prognostic outlook. 
BTW, I live in the Bay Area although my home is located in the North Bay.  So, in a far fetched sense, we are neighbors.
Please stay with us on this site.  Continue to reach out to the fantastic group of people eager to help you navigate this disease.  We are in this together.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello - I'm new to this board

Satchie

I'm sorry to hear of yet another case of cc.   I had a tumour which was 11 x 9 x 6cm and my resection was successful.

Good luck, I will keep you I my prayers for success.

x

.... because I can ....

Re: Hello - I'm new to this board

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.

Re: Hello - I'm new to this board

Satchie....Is it possible for you to contact the HMO provider? 
The questions to ask:
Am I covered for second opinion?
Given my diagnoses, the nearest Hepatobiliary Department is at UCSF, how do I receive a referral to this institution.
You might also request a case worker who will work on you behalf with the HMO.
Please keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello - I'm new to this board

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

Re: Hello - I'm new to this board

Yeah, Satchie.  Great job. The general surgeon may very well refer you to UCSF anyway.  Please keep us posted.  We are in this together.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello - I'm new to this board

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

Re: Hello - I'm new to this board

Dear Satchie, I do understand as in Teddy's last year I was DX with my own rare Cancer. Go know! I never thought about myself as I was so worried about him so I had something else to concentrate on where as your concentration point was not there anymore. I definitely had it easier than you. I wish and hope that you find a CC Surgeon and the best news ever is that you are a surgical candidate! That is the best news anyone can receive. I have a little 'thing' for you here and hope it helps.

                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello - I'm new to this board

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

Re: Hello - I'm new to this board

Satchie,
You are an amazing and selfless woman. I'm in northern CA too (Vacaville). My sister is being tx at Stanford but did not have a resection. I'm really glad you took action to get to UCSF and the ball is rolling to get your surgery done ASAP . Much positivity to you and keep focusing on the laughter medicine as much as possible. I saw a wall plaque last weekend in Mendocino that said "become a possiblitarian"... Loved that!
Willow

Willow

Re: Hello - I'm new to this board

Great news!! I will have everything crossed for a successful resection!! I am so glad for you that you were able to get in to UCSF!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Hello - I'm new to this board

Satchi....I am glad to hear that things are evolving at a rapid speed. Congratulations.  You have done a fantastic job in moving things forward.  Satchel, I don’t think that anyone denies the fact that an anticipate surgery will cause stress, anxiety and even fear.  It helps to listen or read to others sharing their thoughts regarding the process of the procedure, the post-op days and the recovery period.  Although, it is not a life threatening surgery it is however; quite invasive.
Therefore please reach out to the members of this site and ask the questions most on your mind.  We are here to help.

Not sure why we don’t put things in order at any time, but the majority of people are prompted to do so only when confronted with an illness.  Guess we just don’t like to deal with it and push it off as long as possible.  You must feel relieved having put this behind you now.

I know the Oakland Hills well and certainly agree in that your drive has substantially increased.  And, the East Bay Traffic is rather heavy well, virtually at all times.   
BTW, yesterday I finally crossed the new span of the Bay Bridge.  Isn’t it amazing? 

Again, dear Satchi, you have made some great decisions; your children must be so very proud.
Please stay in touch with us.  We care and we are in this together.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello - I'm new to this board

Dear Satchie,
How are you doing?  Did you have surgery?
Healthy Blessings,
Willow

Willow