It’s posts like these that make BWI such a great forum.
OT: Pancreatic cancer - Goodbye to my father
- Thread starter wbcincy
- Start date
What tremendous news! So happy for you, your father, and your family! You’ve been through some very difficult times. Savor every day.
Cincy, I’m so happy for you and your family. Having recently lost my father somewhat unexpectedly (and sadly, this time, rapidly) to his cancer returning after almost a decade, it truly does my heavy heart good to hear stories of people beating this most dreadful disease. Enjoy the extra time you all have with him, and please give him a pat on the back from me.
Glad to hear your dad is kicking some ass. You are a good son too. Take care.
My condolences. If you are comfortable divulging, what type of cancer did your father have?
Im so sorry to hear that. It’s so fortunate you got those ten years, but I’m sure that doesn’t make the loss any easier to bear.
I was found to have stage 4 pancreatic cancer back in 2014. Had the whipple procedure at Sloan-Kettering in New York. The byproduct of the surgery was type 3c diabetes (twice daily insulin shots), and a lifelong need to take four digestive enzyme capsules before every meal ($1,963.00 per month, paid mostly by medicare, thank God). But, I'm still around after six years. So, it is possible to get through it. I wish you all best of luck in managing matters. I hope your father's issues don't come to all that.
He had a very treatable form of lymphoma....a decade ago he beat it and was cancer free until only a few months ago. Because he had passed a certain age, they weren’t able to do a stem cell transplant this time, but the chemo was still working. Problem was, it was also shutting down his organs in the process - literally, the cure was worse than the disease. It’s been just over a month now and I just miss him all the time.
I have, from reading these stories, experienced the proverbial roller coaster of emotions. Wb, what a story- I will be retiring in early October but I will be sure to share this story with patients and families when it is appropriate. Every situation is unique as you well know but hope is a commodity greater than any other currency. This has been such a lift for so many, I am certain. Best wishes to you and your family especially your Dad.
Wonderful news! I think of you and your dad often and pray for continued health! My dad had PC so I can relate to your journey!
You really need to take this fight to others. So many people struggle with understanding the incomprehensible medical speak when doctors tell them the issues, diagnosis, prognosis, care plan, etc. Then there is you, a fountain of knowledge, inspiration, and care. I can’t tell you how impactful your posts are even though I don’t know you and will never meet you. I re read each post with diligence, trying to carefully comprehend everything you are saying. What comes through is your knowledge, care, compassion, and love. You will never understand or comprehend the support and encouragement that is behind you.
Now, let’s get to pops. What a fighter. I almost feel like he is the Board father to us all.
Here is what I propose. If @Tom McAndrew will allow and assist, is there something we can all chip in and get something for your dad to maybe just brighten up his day and continue to motivate him. It would be great for all of us here to extend some good cheer to him in whatever capacity you see best.
I am so happy for you and yours. This made my night.
Now, let’s get to pops. What a fighter. I almost feel like he is the Board father to us all.
Here is what I propose. If @Tom McAndrew will allow and assist, is there something we can all chip in and get something for your dad to maybe just brighten up his day and continue to motivate him. It would be great for all of us here to extend some good cheer to him in whatever capacity you see best.
I am so happy for you and yours. This made my night.
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Sorry, player. No words - I just hope time helps sooth it some.
No matter what age. Or how it comes about. Always too soon.
So sorry for your lose.
I probably can allow a good bit, and be of some assistance. Post specifics about what you'd like to do. It can be a group discussion; others can tweak your proposal, or make new and different proposals.
This is very kind, and I truly appreciate it, but I must decline. My father is a member of BWI, but never ventures to the message boards, he’s just in it for the articles. If something were done, he’d wonder why, and I wouldn’t want to direct him to this thread. I’ve shared a lot of my personal thoughts, disappointments (both with him and his doctors at times, and much more bluntly and emotionally than I ever posed them to him because of having to consider the difficulties he was dealing with and trying not to add to them), and long-term concerns (even after this most recent news) that I wouldn’t necessarily want him to see.
So again, thank you for being so kind, but I prefer to keep this private from him.
Understood and I hope you did not view this as being intrusive. Just rest assured that your dad, yourself, and your family and friends are always in our thoughts, prayers, and best wishes. Please keep posting this positive news!
I did not view it as obtrusive in the slightest, I took it as a very nice gesture and appreciate it greatly. But I’ve used this thread (often selfishly) to express things and vent on things precisely because I couldn’t to him directly. You and others have been supportive throughout, and I can’t thank you enough.
I'm curious, you had stage 4 but they performed the Whipple anyway? I was under the impression they generally won't perform the Whipple unless it's curative, and stage IV can't be cured. Obviously I'm also then very interested in how you've managed for 6 years with stage IV when that has about a 1% five year survival. You'll see why I'm interested in my next post...
The rollercoaster continues. Today was my father's first 3 month follow-up. As he was waiting for his meeting with the oncologist, his CT scan results came in. Lower abdomen clear. He texted my mother the good news, she texted around to the family the same. Just a couple minutes later he called and told her she should sit down. The upper scan showed a couple spots on his lungs. There is also a spot where his pancreas and artery meet. This happens to be the most likely spot for recurrence.
At this point, the lung spots (largest is 6 mm) are too small to biopsy. The pancreas spot can't be biopsied because of the artery.
His CA19-9 (the PC tumor marker) remained normal at 35. I had long anticipated we would know if it was back by the CA19-9 rather than the imaging results because typically the marker precedes the image. So I was very confused by these results, how could his CA19-9 be normal if the image showed potential lesions? I did a little research, and a study I found showed that 60% of people experiencing a recurrence had it show up in the CA19-9 before it was visible on a CT (so I was right to expect that). Another 30% had the elevated CA19-9 and image of a lesion show up at the same time. That does leave 10% who have a lesion show up before the CA19-9 elevates, which could potentially be my father's case.
Now, it isn't a done deal yet. They just can't say for certain at this point. The oncologist believes this does mean it's returned and has metastasized, but they can't say for sure and can't biopsy yet. He will go back for another scan in early January. But the oncologist isn't suggesting chemo again yet since they don't know.
I'll try to hold out hope based on a few things: (1) maybe the spot by the artery is just scar tissues from the surgery, (2) maybe the lung spots are unrelated, and (3) the CA19-9 isn't elevated. I'm just grasping at straws at this point though. The reality is that it's likely it is already back and spread. But until there's no legitimate hope, I'm not going to give it up.
He told me he's taking it well, that the rollercoaster of the past 14 months has just kind of numbed him. I can say the same. I've yet to simply take a moment to accept this and weep as I know I will at some point. Maybe I'm just a couple beers away from that. But there's also the reality that I've already mourned his passing for a year. I've already gone through all the emotions and come to acceptance. It doesn't make what's to come any easier, but the trauma of this kind of news is long passed. I'll be forever thankful for the past three months where I had the chance to believe he might just be ok and life was normal again. And I've known too many people who lost loved ones, much younger, and much more suddenly, to not at least be somewhat grateful to have the time I've had with him, and the time we will have to say goodbye, if this is what they think. My mother's best friend had two daughters the same ages as my brother and I, so we were together a lot as young children. She got breast cancer and died around 40 when we were in 5th and 7th grades. My best friend from when I lived in NE PA died of a brain tumor when we were in 9th grade. One of our BWI colleagues lost a PSU student son to cancer this past year. I know and have seen how much worse it can be. My father is 69, and with any luck will still see 70. He got a full life. I got to be part of it for nearly 40 years so far, and I'm immeasurably blessed for that. So I don't want to pity myself. But I'm obviously still heartbroken to watch this happen to such an incredible man. And I have to fight bitterness with every fiber of my being.
Any prayers for what may come in January would be appreciated. We'll need them now more than ever.
At this point, the lung spots (largest is 6 mm) are too small to biopsy. The pancreas spot can't be biopsied because of the artery.
His CA19-9 (the PC tumor marker) remained normal at 35. I had long anticipated we would know if it was back by the CA19-9 rather than the imaging results because typically the marker precedes the image. So I was very confused by these results, how could his CA19-9 be normal if the image showed potential lesions? I did a little research, and a study I found showed that 60% of people experiencing a recurrence had it show up in the CA19-9 before it was visible on a CT (so I was right to expect that). Another 30% had the elevated CA19-9 and image of a lesion show up at the same time. That does leave 10% who have a lesion show up before the CA19-9 elevates, which could potentially be my father's case.
Now, it isn't a done deal yet. They just can't say for certain at this point. The oncologist believes this does mean it's returned and has metastasized, but they can't say for sure and can't biopsy yet. He will go back for another scan in early January. But the oncologist isn't suggesting chemo again yet since they don't know.
I'll try to hold out hope based on a few things: (1) maybe the spot by the artery is just scar tissues from the surgery, (2) maybe the lung spots are unrelated, and (3) the CA19-9 isn't elevated. I'm just grasping at straws at this point though. The reality is that it's likely it is already back and spread. But until there's no legitimate hope, I'm not going to give it up.
He told me he's taking it well, that the rollercoaster of the past 14 months has just kind of numbed him. I can say the same. I've yet to simply take a moment to accept this and weep as I know I will at some point. Maybe I'm just a couple beers away from that. But there's also the reality that I've already mourned his passing for a year. I've already gone through all the emotions and come to acceptance. It doesn't make what's to come any easier, but the trauma of this kind of news is long passed. I'll be forever thankful for the past three months where I had the chance to believe he might just be ok and life was normal again. And I've known too many people who lost loved ones, much younger, and much more suddenly, to not at least be somewhat grateful to have the time I've had with him, and the time we will have to say goodbye, if this is what they think. My mother's best friend had two daughters the same ages as my brother and I, so we were together a lot as young children. She got breast cancer and died around 40 when we were in 5th and 7th grades. My best friend from when I lived in NE PA died of a brain tumor when we were in 9th grade. One of our BWI colleagues lost a PSU student son to cancer this past year. I know and have seen how much worse it can be. My father is 69, and with any luck will still see 70. He got a full life. I got to be part of it for nearly 40 years so far, and I'm immeasurably blessed for that. So I don't want to pity myself. But I'm obviously still heartbroken to watch this happen to such an incredible man. And I have to fight bitterness with every fiber of my being.
Any prayers for what may come in January would be appreciated. We'll need them now more than ever.
The big problem with it, it is one of those cancers that by the time they catch it, its to late.
You don't notice symptoms like some other cancers.
No cancer is good (and I have been thru it) but despite all the advancements made the 3 worst are brain, Pancreatic and stomach.
Pardon my ignorance on this, but the image he received was by CT alone, not a PET, or PET/CT. You are suggesting he needs the PET/CT for a more clear understanding of what's being dealt with?
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Heartfelt thoughts and prayers for you and (especially) your dad, Cincy. He and his health situation obviously occupy us here on this Board. The fact that this thread is now six pages long is a testament to that. It also causes me, at least, to regard the present election fiasco in a somewhat different perspective. Some things are certainly more important than others. I hope you will tell him that he has a whole lot of people rooting and praying for him.
The sun will likely rise tomorrow signaling a new day...perhaps a great day for you, Dad and your dogs to go for a quality walk. You two seem to do your best conversing and thinking while strolling.
just my $0.02 worth.
It all depends upon the size of the abnormalities and whether it fits into the Oncologist’s protocol For following up on the treatment. A fusion PET/CT is a combination CT scanner and PET scanner in one unit. It has the benefit of the CT providing attenuation correction for the PET scan and superimposing the PET image on the CT image so there is direct correlation of any PET abnormality with the associated anatomic structure.
Thank you for the input, I appreciate it. I haven't checked, but I thought PET/CT's were pretty rare as far what hospitals have them. I'll take a look and see who might have one locally, thank you.
As my father said this afternoon when I talked to him and he told me the news: "It's not going to take me today, so I'm going to appreciate today."
Don’t be angry. You are right, it is tough to watch a man struggle in his last years. Still you were there with him to share his fight and some of his burden.
My Dad died when I was ten. At 46 he died not knowing what would happen to his family.
Fortunately your father knows he will eventually leave you, a good and caring man. Promise him something I was not able to tell my father, that you will take care of anyone else or anything he leaves behind. If you do that he will have peace. That is the best gift we can give anyone.
Great message. Sorry you lost your father so young. Had to be very difficult. My father’s father died when my father was six.
Dave I'm so sorry to hear your story. That's exactly what I mean when I say I shouldn't feel sorry for myself. You experienced true tragedy, I'm just experiencing the normal sadness of life. It makes me feel pretty silly to say all this when your experience was exponentially worse.
I can tell you that your advise is well taken. I told my father very early on that regardless of what happens, he doesn't need to worry about anyone. My mother (his wife) and my grandmother (his mother-in-law who lives with them) will be taken care of. I've been fortunate enough to be successful enough to care of all of his family, something I couldn't have said as recently as 5 years ago. That's a peace your father didn't get but deserved. I will say my father has said since I was a child, younger than the 10 you were, that I was born older. I suspect your father knew the same of you, and despite your youth, knew what you'd become which is obviously a fine man.
wb, you don't have to ask for prayers sir.
This board and I will pray for you and yours by the boat-load!
Come on board. Let's offer up some prayers.
Thank you!
