80% of pancreatic cancers come back after surgery

This is a statistic I guess I had read before but possibly put it out of my mind.  Like most stats about pancreatic cancer no one wants to hear them, people are afraid of this disease and I guess I can't blame them now.  We found out Friday that my Dad's cancer has come back.  I feel so naive and stupid to think that we would have more time with him. I thought maybe after all of this we could have a few more years together and now I realize that I have been duped.  And so what now? This PANCAN PowerPoint says "Once it returns it is generally no longer considered curable."  What are we supposed to do? I don't want to be a desperate daughter trying to cure my father.  I don't want  people to think "Why can't she just accept that he's going to die of this disease" "He's old just let him live out the rest of his life peacefully, you've done all you can."  I can't do this. I just can't.  Maybe it's pathetic to grasp at straws at this point but we have to keep fighting.  It's hard when you think your loved one is OK for awhile and then you come to find out that it's all a lie.  We thought he was gaining weight and it turns out yes he was. A fact that Dr. Wolfgang noted was a good thing, gaining weight after surgery is great news.  As it turns out he gained exactly zero pounds since his surgery in February, it was all fluid in his belly that had to be drained off this weekend at Johns Hopkins.  4.9 liters of it.  And so now he's back to 156lbs exactly the same weight he was after the surgery and I am heartbroken again. The worst kind of heartbroken involves dealing with a disease you have utterly no control over. 

 

 

Mystic1der, Janemac sent you a prayer.
5 people sent you a hug.
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I am so sorry to hear of this news. I know you and your family are at a loss. I do hope you have contact with PanCan for support. With Pancreatic Cancer being in the rare cancer category it is often hard to find support from others that have been there. Praying for you and your family through all of these trials.
Karen likes this comment
I have been in your shoes with my mom. I understand whole heartedly the fight you have been fight and are now facing. The only advice I can give is always fight for your dad, but at the same time listen to him. My heart goes out to you and your family. Just remember you are not alone in this. We are here supporting you and sending many prayers your way!!
Marcia likes this comment
Thank you Marcia! It has been another rough couple of days but I am still searching to find some clinical trials for him at work....errr I mean in my spare time!! Actually I feel like I do need a full-time person to manage cancer in the family. If I had a million dollars I would 1. Start this non-profit and 2. Start a non-profit where everyone cooks a meal for cancer patients. I feel like it would be nice to cook a nice hearty meal for people on chemo and who probably don't want to cook let alone eat! Anyways, thank you for your kind words. I am sorry you had to go through it too. I would not wish pancreatic cancer on anyone. It is something that will maybe always bring me to tears.
I am so sorry to hear you news. That is a lot of fluid to be drained off...heartbreaking.

When my Dad was diagnosed with Stage IV Spindle Cell Sarcoma, I didn't pray for a cure...I knew there was none. Looking back, I now feel many of the same things you are expressing...I suppress a lot. I prayed for 2 things: that my dad would not have lots of uncontrolled pain and that when the time came, we would not continually seek treatment. His tumor was removed 3 times, and it bought him 3 years of life. We cherished that time.

May God bless you as you deal with what is ahead. I am so sorry you are dealing with the heartbreaking knowledge that your dad's cancer was moving forward.

What does your Dad want to do? When I was going through tough times with my Dad, I had to be reminded that it was not about me, but rather him.

Will keep you and your family in my prayers.

Marcia, Susan J like this comment
Karen......listen. Remember over a year ago, you thought it was the end because your Father was bleeding out? You were at the hospital sitting vigil and thought you were saying goodbye. But he lived. And he can live again! Look at Sue and her hubs. And Nan too. Yes, people pass from Pancan, but they also pass from diabetes, MS, SLE, etc. There are many rx's your Father hasn't had to try yet. There are over 300 cancer rx's (this is factual) that are awaiting approval, some on the cusp. No one, well hardly anyone, your Father's age, my age, is disease/condition free. I've been taking 9 rx's since I am 31! Now I think I take 13....haven't counted in a while....lol. And weight? 156 is not too bad at all. Joe is 155 and he's 6 feet tall. You are not a desperate daughter or anything like that; just take each day as it comes....read about new cancer rx's. Cancer cannot frighten you if you don't let it. Study it and the fear goes away. Honest. God bless and love.
DeAnna, Karen like this comment
Karen I understand when you first hear the news it is frightening and now once it sets in you will fight with all you are to figure a way to make this better. You will.. What will be is going to be . But you can do all you can do and that's where you are so great. I know I lived through all the different places with my Dad that cancer brought us. You will do all you can do. No one but God knows the day you will die and from what. Keep the faith, do what you can and mostly enjoy time with your Dad and let God handle the rest. I am not one that knows alot about this part of cancer but I do see people living a long time here on the blog and that is encouraging. I will be praying for you and your Dad.. hugs and love and always prayers Sabina
Karen likes this comment
I'm so sorry Karen. My Dad had the same. Don't feel foolish. You lived these past months with hope and not cynicism. Whatever you all decide, I'll pray for some peace & comfort.
DeAnna, Karen like this comment
Did he have ascites, fluid in his stomach towards the end of his life? I read that it is something that happens during the end of their lives but I don't want to give up.
There were multiple problems that I don't want to write about because it's not good. I don't want to scare you either. The best you can hope for is that you dad remains comfortable and not in pain. If you'd like to talk offline, I'm here for you.
Hi Karen, that is heartbreaking news, especially when you've seen how much better his health improved from a year ago August when he was in the hospital. I suggest talking with Susan and she can share how she and The Hulk have managed to fight this beast for 6-7 years more. You're a great daughter, and he's a great Dad- the bright side is that he technically hasn't lost any weight since his surgery- so you're back to square one, not minus one. I pray that you can get a good oncology team to help guide your family through various treatment options- and never discount the possibility of one more miracle.
MGBY,
John
Karen likes this comment
Where has it come back? Has Hopkins said it is no longer curable? My brother has another very undetermined small spot on his pancreas that they will remove if it gets larger. If it is surgically resectable that makes a difference.
"So sorry to know about your dad. Always post treatment the stomach usually takes too long to empty its contents. After few days of surgery, my husband started taking the Hemp oil in his regular diet or juices and even in salads addition to his prescribed routine. I was not supporting him because he still had stomach ache for few days after the surgery. Then I googled about hemp oil and they say Hemp oil is a powerhouse of nutrition when it comes to healthy fats and it is totally natural. I saw, he was getting better day by day and going back to his routine life. After that I have started using Hemp oil in my daily cooking and it does give a slightly nutty and crispy taste to food. I remember reading in google some studies from Israel or somewhere CBD / cannabinoids has proven to be effective after surgery of pancreatic. My husband found Charlotte's web hemp oil effective for him. I would suggest to give it a try (always the reputated ones) and make sure they have a complete control over their growing and manufacturing process so the product is the same each time.

I wish a healthy and happy life to your father :)"
Yes, pancreatic cancer will undoubtedly return (actually, it never left) if the surgical margins aren't clean and/or lymph nodes are positive for disease. This was what happened to my man after his Whipple. The Whipple was in January 2010 and he had about twenty good months off treatment before his "recurrance" was diagnosed (metastases to lungs) in August 2012. But here's the thing: he's STILL HERE AND FIGHTING more than four years after this recurrance. And more than one year after it metastasized to another place, his peritoneum.
So, there is still hope for additional, quality time with your Dad. Don't despair - and never, ever give up hope! I remember when your Dad was on his deathbed - and look how he defied all the statistics then, Karen. There really is hope for the defiant - and my husband continues to be the living proof and the hope....
Love to your family.......XOXO Sue💪🏽💜
Susan, Karen like this comment
Oh, Karen....I so wish I could help you from afar! A couple of things come to mind: a growth on your Dad's kidneys isn't necessarily pancreatic cancer metastases, so don't jump the gun there. It could be a totally unrelated and easily treatable cancer, or even a benign growth of some sort. Next, while I'm certain you must have had good reasons for deciding the surgeon should captain the ship, I personally think a regular oncologist who is a knowledgable pancreatic cancer specialist would be the most important doc in your Dad's life from this moment forward. They know about all of the many chemo options, and are able to adjust doses to a tolerable level that will allow your Dad to continue actively fighting his disease. Our Dr O'Reilly is constantly adjusting my husband's dose as his metastases increase, then stabilize, then regress, then increase, etc. Also, I've been hearing positive things about some of the newer clinical trials involving immunotherapy and pancreatic cancer, so if the trial in Erie involves immunotherapy and your Dad is eligible - jump at the chance! Just remember this: the cancer has recurred and your Dad now has a chronic disease that will undoubtedly kill him unless he treats it - so you have to do everything in your power to locate an oncologist who will put in the hard work to find a treatment and a dosage that keeps your Dad's cancer controlled: there are more and more drugs in the arsenal against pancreatic cancer. I hope and pray it can be accomplished......and I'm well aware that our incredible options here in the hospital/health care capital of the world (NYC) put us at an incredible advantage. Everytime I read a post like yours my heart breaks a little that everyone can't be treated by our Dr Eileen O'Reilly at MSKCC. Congratulations on your wedding, and I'm so glad your Dad was able see the day, Karen. You are a gorgeous bride and have a beautiful loving spirit. My thoughts and prayers and every bit of hope I possess are headed your way.
XOXO Sue💜💪🏽
I sent my Dad your kind words because you know all to well how it is. Did your hubby continue to take chemo? My Dad's numbers aren't well enough for chemo and so I feel like everyone is giving up on him. At his last appointment at JH Dr Wolfgang told us we need to pick someone to steer the ship (because at this point we had 3 cities involved, 2 surgeons, and 1 oncologist. (Sounds like a bad version of the 12 days of Christmas here!). So we picked him to steer the freaking ship and guess what? He wasn't even there this weekend. I'm trying not to take it personal after all he is probably doing like 3 6-hr surgeries a day trying to save other patients but I know my family feels like they are giving up on him. My mom, the retired nurse, read his paperwork and it says there is a growth on his kidneys. They didn't tell us that it spread or anything so now I don't really know what to think and why they are keeping it from us. He has portal hypertension because the terrible tumor is still pressing on his artery so that's what caused the fluids in his belly apparently. What should we do Susan? I want to try for proton therapy in Philly but should we really travel there if it is in his kidneys now. I'm hoping they will give us some insight tomorrow on what to do. The oncologist gave my mom a hug and told them to look for clinical trials. There is exactly 1 lousy clinical trial in Erie, PA so I am still searching for some around here. I am going to read your posts to catch up with how you have been doing. XOXOXOXO Karen
Next week let's paint this side of the US purple for Pancreatic Cancer Month!!!!
Hi Karen,

Oh man....I'm so see this update. As I read each word, I could FEEL what you must have been feeling as you typed out your post. I, too, have been down this road and endured similarly crushing news. As a daughter and a former caregiver, I can tell you that hope is something that is more powerful any disease. And though it doesn't always yield a cure, it does help you hold on to the strength that you will need to get through the toughest days.

My heart goes out to you, my friend. Wish I could give you a hug. :(
Karen likes this comment
Karen, Your dad and you should not give up the fight!! This is a setback but can be managed. Look at Susan's husband and how he has pushed through his setbacks. I will continue to pray for your dad and you.
Susan J likes this comment
Karen, I am so sorry! Your dad has such a great daughter, and I am sure his spirits are lifted by your constant presence. And I am thrilled he was able to be at your wedding. I am not going to tell you what to do. This is such a terrible predicament. But I do know you are doing what's really important, being by his side and letting him know you love him. He is truly blessed.
Susan J likes this comment
Karen, I am so sorry to hear about your Dad. Do not worry about your attitude., my girls are constantly playing the fight song for me. Their energy and love have given me the strength to get through some difficult times. I have surprised all the doctors because I have not had the Whipple and I am still here (knock on wood). Hold on to your hope, encourage your Dad and take care of yourself There will come a time when he will tell you what he wants to do but know you have been giving him a reason to fight this monster just as my daughters have done for me. The love you have shown your Dad has given him the strength to get this far. What a treasure you are.
Susan J likes this comment
I am so sorry Karen!! A miracle can still happen and I pray for one in your dad's life!!! Hold your head up and keep the faith!!!! XOXO, Lenae
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Karen's Dad

May 1, 2017

Vital Info

Posts

May 5, 2015

Cambridge Springs, Pennsylvania 16403

May 1, 2017

Cancer Info

Pancreas Cancer

Adenocarcinoma

April 17, 2015

Stage 3

2.1 - 3.0 cm

Yes

I hate the pancreas! Who thinks about the pancreas??

Cherish every moment of your life and being around your loved ones. Have patience in all you do especially with your family (sometimes we are the least patient with them because we know eventually they will forgive us!)

Eat your own cruciferous veggies! They can help prevent pancreatic cancer.

Not to organs, arteries are involved: hepatic and celiac axis

Field and Stream gift certificates for my Dad!

Primary: Erie Regional Cancer Center Surgery consultation: Hillman Cancer Center Surgery: John Hopkins Baltimore

Walk your puppies. Dogs give me a happiness that humans cannot. If you have dogs you understand. If you don't, you have been missing out.

Take a deep breath and if you can't take a deep breath, find something to laugh about!

Prior to stent: extreme nausea, fatigue, weight loss (15 lbs), back pain, jaundice, loss of appetite (unable to finish meals), abdominal pain, needing to take several anti-acids daily Present: back pain, feeling easily full, abdominal pain, increased appetite for potato pancakes!!!!!!

Extreme fatigue, some dry heaving, hair loss, neutropenia

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