Topic: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Hello,

I live and work in London and currently in India to see through my moms treatment.

My mother is still in the ICU battling some post operative complications from Whipple's surgery.

She went to the doctor on 20th Feb with painless jaundice (probably after a week of minor symptoms appearing). Even though it was a doctor in a small town in India (not Mumbai), they immediately asked for an ultrasound be done. Based on that the doc recommended further testing (MRCP). We then moved to Mumbai and MRCP, CT, Endoscopic Ultrasound and PET/CT Scan showed Distal Bile duct Cholangiocarcinoma. (FNAC was negative during surgery)

Dr. Jagannath is a well known surgeon (probably the best) in India in Hepato billiary  oncology. He figured it was resectable and  conducted the Whipple's surgery on 18th March 2013.

Because she had bilirubin levels around 6 during operation, as no stenting was done, the recovery is taking time.

I saw the biopsy report yesterday. It says stage is PT3N1 - 9/20 peripancreatic lymph nodes are metastatic. The tumor had started spreading to pancreas with mild differentiation seen. Although the margins are free of tumor with closest margin on pancreas 1 mm.

We are just hoping and praying for her recovery from the surgery and then think about the next steps. Not sure what the prognosis is at this stage (statistically very depressing I think) but we will fight till the last option available!

I guess the next steps for me are:

1. Take second/third opinions on all reports
2. Plan for chemotherapy etc..
3. Prepare for the expenses and plan relocation as per 1 and 2..

Will appreciate any comments / information on the above.

Thanks everyone for being so amazing and for the people who put this site up.. it is a relief that I can find knowledgeable opinion from around the world here..

Sushant

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Dear Sushant, welcome to our wonderful family, sorry you had to find us but you have come to the best place to be. My husband had a Whipple and it seems most "Whipplers" do get a complication. Probably because it is the biggest surgery to the human body. Not life threatenting like, heart surgery but a big surgery so there is a chance for some bumps in the road while healing. May I ask what the complications are? Since the METS are small I wonder if the Surgeon would consider Cyber Knife IF it can be done in that area. Teddy had C.K. and it was painless and bought him another 2 1/2 years. You have been doing everything just right and I want to say don't listen to statistics about Mom as we were not born with expiration dates stamped on the bottom of our feet. I like to say we try to be realistically optimistic.
Very wise to get 2nd/3rd opinions if for no other reason than validation then you will never look back with regrets. Does the ONC have a plan for treatment in the future? Try to be very patient as it take awhile to heal from this Surgery. 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: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Thanks Lainey.

There have been quite a few complications:

1. She probably had an oozer in the area joined up after surgery so Ryle's tube showed some bleeding till the last 3 days. Blood transfusion was given, and endoscopy done to clip the bleeding source. Slowly it seems it has stopped. fingers crossed.
2. The drain was high due to hypoalbuminemia. It seems to be getting better
3. Today, I am told there may be some infection (WBCs are high) so they will continue to keep her in ICU. There is no fever and PCT was normal (so no sepsis)

Have not discussed the post op plan with the onco surgeon. He insisted that the first milestone is recovery from Whipples. His other patient next to my mom is already home by gods grace, she took 8 days to recover.. I guess it depends on how well the body responds as well..

Also, dont know about the cyber knife ... havent discussed, read on it.. what is this for and how should I find out more..

Regards,
Sushant

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Hi back at you. Teddy had a small hole develop along the incision on the inside. Took a month to heal. Otherwise he did OK.
Google Cyber Knife, works very well main tumor must be under 7CM which your Mom's is. Teddy had 25 rounds of Radiation to bring his down from 7CM to 5CM which only took a month. Gold seeds are implanted by injection and then the Cyber Knife follows the seeds. Amazing.   
Infections go along with the territory. Teddy used to get "blood infections" 2 X a year.  Chills, fever of 101 to 102 and I knew each time we had to call an ambulance to take him to ER as he would get very weak. A blood culture is needed to determine if that is what it is but they would start him immediately on an IV of Levaquin and he would feel better the next day. The ONC said Levaquin would get rid of anything it might be and it did. Oh, when T had his Whipple he was in the hospital 10 days. I hope your Mom is feeling better now  and I can tell you are an awesome daughter and caretaker! Please keep us posted on your Mom!

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: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Thanks again Lainy. As I wait outside the ICU for the next opportunity to see my mom, your kind words are comforting.

My mom's tumour was 2.7 cm in the distal bile duct and had started to move into the head of the pancreas. I will find out more about whether cyberknife can be useful for her post whipples..

quick one: I am my mom's son (though she tells me she wanted a daughter when I arrived and that I havent disappointed after.. )

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Oh, I am so sorry Son of a Proud Mom! I shouldn't assume as we have so many wonderful sons on here. By the way, Teddy's CC never went to the Pancreas but the Surgeon did have to cut the head of the Pancreas to get where the CC was. Hoping Mom has a better day today!

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: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Hi Sushants,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum as well. But I am glad that you have joined us all here as you are in the best place for support and help, and I know that you'll get loads of both from everyone here.

I'm afraid I can't help with any personal experience about surgery as my dad was not able to have any, but I know that others will hopefully join in and share their experiences with you. That is great that your mum is able to have this surgery and I hope that her recovery from it goes smoothly. Have you looked at the surgery board that we have here on the site?

As Lainy has said, infections with this cancer are very common and that is something to keep a very close eye on. If we can help in any way at all we will, just ask and we'll do our best. And please keep coming back here and keep us updated on how things go with your mum.

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.

8 (edited by randigb Wed, 27 Mar 2013 16:43:13)

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Hi Sushant,

Welcome to the site and so sorry you had reason to find us.  You sound like an awesome advocate for your mother and I am impressed with the way you've presented your mother's symptoms and treatment.

I had Whipple surgery in 2009 (age 53).  While it was not a speedy recovery, I did recover well.  I had ECC with some pancreatic involvement.  As you know, the Whipple procedure removes the head of the pancreas.  I did not have any lymph node involvement.  I got several opinions about my case and ultimately decided to have adjuvant chemo...Gemzar 1x week for 3 weeks with a week off for 6 months.  I am doing well and go for frequent scans.

So, while the statistics can be daunting and depressing, there are those who have survived this cancer and have done fine.  Someone has to be in those small statistics and I am hoping that one of them is your dear mother.

I hope that your mother recovers quickly from her setbacks. I also hope that your second and third opinions give you a path forward to treatment. 

I would be happy to answer any questions you have, however, I have not had any experience with complications from the surgery.

Take care and best wishes to your Mom.
-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.

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Hi,

"I guess the next steps for me are:
1. Take second/third opinions on all reports
2. Plan for chemotherapy etc..
3. Prepare for the expenses and plan relocation as per 1 and 2..
Will appreciate any comments / information on the above."

Are you planing to get 2nd opinions in UK or The States ?

Mostly nowadays ,if the surgery went well,6-8 weeks after the surgery, adjuvant chemotherapy will be initiated , followed by chemo-sensitized radiation is the most popular choice of course of treatment in the States.

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: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Thanks everyone for your kind words.

@Lainy - the surgeon has removed the head of the pancreas during the surgery like they do in Whipple's I guess. as for my mom's condition today, it has not improved with high WBCs and fever (which is down after medication).. the intensivists are exploring the cause of infection and changing the antibiotics etc.. praying my mom can feel better soon

@Gavin - thanks. I will look at the surgery board for more on this..

@Randi - your story is very inspiring and thanks for being a source of hope. Pray, I will explore every possible option  to make sure my mom beats all the stats. Thanks for your offer for help, I guess post recovery, I will have questions related to  adjuvant chemotherapy.

@PCL1029 - I live in London and will try and find out doctors to reach out to once I am back there.. Although I am planning to relocate back to India in a couple of months to be around my mom..

My brother lives in California (Cupertino), he will be able to reach out to Oncos in the US with my moms case history and scans etc once we have a complete file (post op scans etc)

My plan is to take opinions from the US and the UK and India and get the therapy in India based on the decision (will work out quicker and affordable I think as she will not have insurance etc abroad)

Please let me know what you guys think about my plan of action..much appreciate

Best,
Sushant

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Dear Sushant, I think your plan is a good one. Between you and your brother you will have your bases covered. By the way I am sure I heard a couple of months ago that some of the best CC ONCs are in India. Please correct me if I am wrong...Board.
You might want to ask if they did a blood culture and also ask if they use Levaquin where you are. Wishing for a better day tomorrow for Mom.

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: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Dear Lainy - Yes, my research shows that the top Onco surgeons in India are world class. They are well connected with the renowned centres in the US with some having worked there for long before relocating to India. Tata Memorial hospital (Public Pvt Partnership, non profit, economy thus crowded hospital)  in Mumbai is the Hub of treatment in India and is the learning ground of surgeons who get to see a vast variety of cases and complications. From there the famous Oncos move out to Private hospitals (Lilavati is one of them where my mom is admitted).

Also, there are a few CyberKnife centres in India with one called HCG - across different cities in India. Will do a detailed research later..

They have sent samples for a culture, apparantly the report takes a few days.. The doctor will do a CT today to look for any "collection" of fluid that may be a source of infection..  Will ask about Levaquin.

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Sushants....the below link explains the various types of radiation used in the treatment of cancer.  You may find that depending on the particular center, one or the other type of radiation treatments will be offered. 
http://www.cancer.org/treatment/treatme … on-therapy
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: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Thanks Marion - this will be valuable as I explore all the available options..

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Hi All,

Good news regarding my mother - she was shifted out of the ICU yesterday evening and doctors say she is doing fine now...

I took her out of the room for a walk and she is able to tolerate soft diet as well..

Thankful to god that she is improving. The fight will continue!

Best Regards,
Sushant

Re: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Dear Sushant, There is nothing better than waking up to see a post like yours. Hurrah for Mom! The infections are bad enough without being right on top of a surgery. Glad to hear all is much better and please keep us updated on Mom's progress!

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: My Mother age 55 diagnosed with CC - PT3N1, Mumbai, India

Hi Sushants,

That is great news about your mum getting out of ICU and doing better as well. Yes she is improving and I am sure that she will have been very glad to get out of that room for a walk with you! I hope that her recovery continues to go smoothly and yes, the fight will continue!

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.