1 (edited by mphung Wed, 10 Jul 2013 21:38:52)

Topic: mother newly diagnosed

About a week ago my wife noticed my mom who is 66 years had some yellowing in her eyes and immediately we took her to the doctor and her blood was taken. The next day the doctor called her in and a ultrasound was performed. That is when we found out that there is an obstruction in her bile duct and a ctscan was needed. The next day the ctscan results came back and the doctor believed it was a gallstone even though her gall bladder was removed 15 years ago. The next day she had a ERCP and that is when we found out that it wasn't a gall stone but a tumor and a stent was placed in along with a biopsy. The oncologist said the that the tumor could be benign but is waiting for the lab results from the biopsy. The next day the oncologist broke the news to us that the tumor is malignant and that she is diagnosed with cc. My world stopped and after doing some research on the internet I was devastated to find out that this is a rare disease and that the survival rate doesn't look very good. I was very depressed and sad because my mom means the world to me. She would work 7 days just so she can provide for my brother and I. Thankfully I found this forum and the awesome people that post here. The very next day my mom had a MRCP and that is when the oncologist told us that the cancer is in its early stage and that the cancer has not spread into the major lymph nodes. I was so HAPPY and RELIEVED and I was able to sleep that night. Today we had a meeting with the surgeon and that is when he told us that from all the procedures that was done they believe it is in its early stage but they are not 100% certain until they open her up. They also mention that the tumor is 2.5 cm big and that there is a slight chance that the tumor is on her pancreas being so close to it. The surgeon recommended the whipple procedure and the surgery will be 3 weeks from today.

My question is why did the oncologist tell us that it is in its early stage and the tumor has not spread but yet the surgeon said that they are not 100% sure whether or not it has spread until they open her up?  Also with 3 weeks till the surgery my concern is that the tumor might spread.

Re: mother newly diagnosed

mphung....welcome to our site.  In spite of the diagnoses of this disease, you have some very good news hidden in your posting. 
1.  Your dear Mom is able to have a resection - the only possible chance for a cure.
2.  According to the scan results the oncologist believes that the cancer is confined and that it has not metastasized.

Scan plates measure 1cm in thickness hence anything smaller than that is not detectable.  It is for that reason that the surgeon is cautious with his statement because; only he is able to determine the true extent of the disease during surgery. 
A three week wait for surgery does not seem to be out of the norm - not sure whether I would worry about the time lapse. 
In fact, dear mphung, so many things are in your Mom's favor right now that it is o.k. to relax a bit. 
I am sure for others to come around real soon to share their thoughts with you also.
I am glad that you have found us and please stay with us - we care.
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: mother newly diagnosed

Dear mphung, Welcome to our remarkable family but sorry you had to join us. My husband had a Whipple and a Surgeon just cannot commit to what is inside until he see's the area for himself. Your Mom's CC is near the same area my Teddy's was. A Whipple is the largest surgery to the body but NOT life threatening like heart surgery. It is also long...Teddy's was 8 hours. He was 73 at the time and the very next morning I got to the Hospital early and he was sitting up, I couldn't believe it. It is a recovery that can take a few months and you all will need a lot of patience. Food is one of the major changes as their eating habits totally change. Teddy was a chocoholic and after surgery never could stand sweets again. He couldn't believe it himself. But I feel your Mom will be just fine. You all need to provide a strong and confident front. I like to say try to be realistically optimistic. BTW nothing showed in the Pancreas but our Surgeon had to take off the head of it to be sure. May I ask where she is having the surgery? Teddy had his 2 weeks after diagnosis and nothing had changed in that 2 weeks.  Please keep us posted as we truly care and Be Strong!

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: mother newly diagnosed

mphung,

I am new too and I am so blessed I found these wonderful people so you are in good hands. And rest assured i would relax some. my husbands tumor is 8 cm and that is because it actually shrunk some after chemo. And he is getting ready to have a liver resection. So imagine if they feel they can get my husbands out... 2.5 is tiny in our eyes! Everything sounds so positive!! Hang in there, I know for a fact how scary this is but there is alot of good things in your post. Also the docs always want to prepare you that sometimes they may find more when they open you up, its just a chance so try not to worry too much, focus on the positive!! I wish your Mom and your family the best and will be praying for you guys!!

Heather

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: mother newly diagnosed

Thanks everyone.  @ Marion Yes we are very fortunate to have caught this disease early and that surgery is possible.  I am so glad I found this forum and the great people on this board. @ Lainy my mom will be having her surgery at the University of Alberta hospital by Dr. Kneteman. @ Heather, Wishing your husband a successful surgery! Keep us posted!

P.S. I have donated $100 to this cause in the honor  of my mother.

Re: mother newly diagnosed

mphung....I looked up Dr. Kneteman (sorry, can't help myself)
http://www.kmthepatech.com/en/AboutUs/M … teman.aspx
Your Mom has everything in her corner hence I expect nothing but the most exciting news coming your way.
Also, on behalf of the Cholangiocarcinoma Foundation, I would like to thank you for your generous donation.  I promise that it will benefit the Cholangiocarcinoma patient community at large.  Thanks again. Please stay in touch; 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: mother newly diagnosed

I wish we could all just have lunch....I have goosebumps with all the encouragement and support!! I really love this forum!! What a blessing and I reading all these posts and replies to him!! Maybe he will eventually get on too!!!! Just today my wonderful doctor didn't charge me for my doctor visit, a sweet friend sent us money to help with our lodging. And our sons book for his private school were free. Someone told me when my husband was diagnosed to be prepared because everyone you meet from now on will be angels!! well yall are now in that club too!!!! Thank you Im done now!!! LOL

Heather

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: mother newly diagnosed

Hi Mphung,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your mum. But you are so in the right place for support and help and you can expect a ton of both so I am glad that you've joined us here. Thanks for sharing what your mum has been through. I am very happy to hear that your mums CC was caught early and that she will be having the whipples. So many peoples CC, my dads included were not caught so early and that rules out surgery from diagnosis.

I know that feeling of your world stopping when you heard the news about your mum, mine did too when they told us about my dads CC and it felt like I had just been hit in the head with a bat. Take the good and positive news here about surgery being done for your mum. Stay positive about that as your mum will need you by her side. Many people here or their loved ones have gone through the whipples and there are a lot of posts on that surgery. The search forum function will help you find them should you wish to read up on that.

I hope that you keep coming back here and keep us updated on how everything goes for your mum. If you have questions then please ask and we'll do our best to help answer them. And thank you very much for your generous donation as well. That will certainly help so many others in many ways. We are here for you. We so know what you are going through right now and how you are feeling.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.