Topic: Newly diagnosed and scared

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.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

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.

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: Newly diagnosed and scared

Thank 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.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

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,
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: Newly diagnosed and scared

I am overjoyed with all these readings, care and support. This is exactly what I have been needing. Thank you smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

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!

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Newly diagnosed and scared

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-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

8 (edited by PCL1029 Sat, 20 Jul 2013 19:09:24)

Re: Newly diagnosed and scared

Hi,
If you have time, the links below may be of value to you.

http://www.cholangiocarcinoma.org/punbb … 365#p47365


http://www.cholangiocarcinoma.org/punbb … 198#p57198


God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Newly diagnosed and scared

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.

Re: Newly diagnosed and scared

Thank 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!

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

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/colle … lcome.aspx
Know that a tidal wave of support and love is heading your way.
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: Newly diagnosed and scared

Porter,

Hi, my name is Susie.  I am 33.  I was diagnosed a little over 2 yrs ago with intrahepatic CC.  I had a resection.  I get treated at OHSU also.  I live in Hillsboro.
I don't have kids.  I was trying to get pregnant when I got diagnosed.
Let me know if you want to talk or get together.
Don't private message me on this forum, for some reason, I don't appear to get all the messages.   Take care and just let me know if you want any more details on my story.

Take care,

Susie

Re: Newly diagnosed and scared

I would love more details. I am what they say not operable. Who was your docs?

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

Dear Susie and Porter, I so hope you 2 can get together! I CANNOT TELL YOU THE FEELING YOU WILL DERIVE FROM MEETING EACH OTHER. This family is something else but to meet a member in person is the best!

Porter, wishing you the best on Friday!

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: Newly diagnosed and scared

So, long story.
I went to the ER with abdominal pain and a 5cm  liver tumor was found.
Ct scan and MRI were inconclusive, biopsy recommended.
At this point I called University of Pittsburgh Medical Center, because ironically, I used to work there as a nurse with liver tumor/liver transplant patients.
I got scheduled for surgery at UPMC. They didn't think it was cancer at the time, but I was told it should be removed either way.
Meanwhile, I was also sending my records to OHSU, because I live here now. So, I got my resection in Pittsburgh, they  knew it was cancer as soon as I was opened. I recovered there for 6wks and then headed back to Oregon where I met Dr Vaccaro, my oncolosist,  for the first time.  I had 3 cycles of Gem/Cis. Then 6wks of chemo radiation, Martin Fuss was my radiation oncologist at OHSU, he has since left. Then 3 more cycles of Gem/Cis. I have been done with treatment for about 1 1/2 yrs and get periodic ct scans to monitor for recurrence.

Re: Newly diagnosed and scared

Susie...I was hoping for you to chime in.  So glad to see that you have done so.
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: Newly diagnosed and scared

Porter,
My wife Lisa was diagnosed with unresectable, stage 4 ICC on May 30, 2013.  We too have small children (ages 1 and 4), so I can definitely relate to the added anxiety and stress of battling this disease and raising young children.

We also live in the Portland area -- Lisa is being treated at OHSU as well.  We are very happy with our care at OHSU and our oncologist, Dr. Lopez.

Many on this site stress the importance of second opinions and I definitely concur with this advice.  We have obtained multiple opinions from some of top cancer centers in the country.  So far, all of the experts have concurred with the initial treatment plan outlined by the team at OHSU.

Please let me know if you have any questions.  I would be happy to share any information that I have regarding our journey as well as local resources that may be helpful for you.

Warm Regards,


Matt

Re: Newly diagnosed and scared

Matt....you were the other person I was hoping for - thank you, thank you. 
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: Newly diagnosed and scared

Wow what a story. So I have been referred to dr vaccaro. 3 years ago I was diagnosed with a 5cm with a liver hemangioma with 6 month scans. Went to er in may for pain and 2 months later I have been diagnosed and they say my liver mass is 16cm. I am not seeing anyone having masses this large and feel beyond hopeless. Does this mean that the bile duct cancer has metastasized into my liver and I've lived with this mass for over 3 years and they are just now telling me its cc. I am not ready to leave my children I lost my mom who wa not blood to cancer but she raised me since birth. I am young and I will fight this as much as I need to. I am otherwise healthy bloodwork normal liver tests normal only symptom is slight tolerable pain. First biopsy showed mass was benign and was ordered the second biopsy and that is when I was diagnosed. I have so many mixed emotions and I am so mad that this appears to be a mis diagnosis 3 years ago when it probably could have been removed. Sometimes I feel like screaming!!!!
What do you think of Vaccaro? I was first seen my dr Orloff.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

I apologize for all they typing errors and such not too familiar with my phone smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

Matt I just saw your post. Thank you for sharing. And again I am very glad I have found this site and able to talk to people who are going thru the same thing!

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

I like Dr Vaccaro.  My complaints about OHSU are it's hard to get appointments and there doesn't seem to be a ton of communication between specialists.  This unfortunately seems to be common, though.
I would recommend another opinion. This cancer is just too rare not to seek another opinion.
I got 3 regarding my post resection aka adjuvant therapy, UPMC, Mayo and OHSU.
You have a right to be frustrated. 
Has anyone mentioned liver transplant?  It is not commonly done for IH CC, but it seems to be happening more frequently.

Re: Newly diagnosed and scared

No bc I don't think I'm there yet. I have my first pet scan Friday and first appt with vacarro after the scan.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Newly diagnosed and scared

Porter,
For what it is worth, Lisa's primary tumor is nearly as large as yours (15x12x13).  The primary tumor has comprimised the portal vein and hepatic artery.  She also has 3 smaller tumors and positive lymph nodes near the aorta.  Despite the advanced stage, which I believe is somewhat similar to your case, we are very hopeful and optimistic.  Lisa has completed two cycles of chemotherapy (gem/cis) and has tolerated it quite well so far.  She will have her first post chemo scan in another two weeks.

There are many cases of patients with similar size masses that begin as unresectable and become resectable after chemotherapy and other targeted treatments.  We are very hopeful that resection will become an option in future.  Even for non-resectable patients, many have had success at shrinking the tumors, managing symptoms, and preventing further growth for several years. 

As for Dr. Vaccaro, I have heard many positive comments.  I believe that you are in very good hands at OHSU. 

I am sure you are still in shock after the diagnosis, and after almost two months the shock has still not worn off for us.  Please rely on the folks on this board for support, it is an unbelievable resource.  Don't give up the hope, and please let me know if I can help in any way.

Warm Regards,

Matt

Re: Newly diagnosed and scared

Matt just hearing your story and being similar gives me hope. Thank you and everyone for sharing. I'm signing off for tonight. Much strength faith and care to you all. Ill be in touch with you guys very soon.

Hope, love, strength...2013 and for the years to come, Porter.