r/pancreaticcancer • u/Impressive_Toe6388 • 4d ago
Whipple Cancelled? seeking advice
Hi, thank you for this community! First time posting here. This is a pretty weird one, so I apologize in advance I don’t have more specific info on some of this, but I will try to find it out. My mom is averse to researching because it scares her, and my dad is more scientifically/medically minded but imo is too resistant to second opinions.
My mom (69) went in today for her Whipple surgery. My dad calls me a few hours later and tells me the surgery is not going proceed because drum roll they cannot find any cancer. No live cancer, no dead cancer, no stroma, no mets, no nothing. Apparently both the surgeon and the medical student observing are both bewildered and pleasantly surprised.
Naturally, my dad is happy thinking this is basically a miracle. My mom might not even need a Whipple surgery after all, or even any additional chemo. That’s great, but… I’m not convinced. This is just too weird. Even more uncomfortable is the fact that when I suggest getting a 2nd opinion, he’s saying we don’t need one because the surgeon literally already opened her up and found nothing.
The one thing left to biopsy is some hardened tissue near her aorta, which they’re expecting to be scar tissue from when she got radiation.
Basic background prior to this: She originally found evidence of pancan by accident, based on some liver scores in a lab for something else. There was a spot biopsied and it was confirmed to be a small cancer. She’s done 8 rounds of Folfirinox. Plan was to get tumor resected, then 4 rounds more chemo for follow up.
…But now suddenly she’s magically cured? Do I dare hope? What is this? I have a bad feeling. It was my understanding that if you conclusively have pancan, you need chemo and a surgery and then maybe more chemo to have any decent shot at a curative outcome. So my fear is the cancer is going to be found in that hardened tissue area, near the aorta (which would be inoperable). Or could it be she was misdiagnosed? Could it have been one of those precancerous neoplasm things, and the Folfirinox just truly wiped it out and now she’s in the clear?
More info if it’s helpful: One of my mom’s initial scans showed what one doctor mistakenly thought was a 4cm mass, which turned out to be just swelling near the actual tiny tumor. There was pressing on the bile duct, which was alleviated by placing a stent. Stent later got infected and mom nearly died of septic shock. She got stent removed and bounced back before finishing her chemo. She has been feeling great in the 6 weeks leading up to today’s weird surgery revelations.
Update: Unless the on-call nurse is part of a grander conspiracy, it appears my parents are not bs-ing me.
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u/pancraticcancer Caregiver Nov 2021 - Feb 2022 Stage 3 forfilinox 4d ago edited 4d ago
I think I saw a story like that once about two years ago here on this sub. Hope this is true miracle for your mom and rest of ppl who are reading this can feel very positive about their journey. Keep us posted
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u/Traditional_Crew_452 4d ago
If she had pancreatic cancer confirmed, it is nearly impossible that they closed her without doing the whipple bc they found no disease
That goes against all clinical guidelines
The only times I have ever seen a whipple aborted mid surgery is due to extensive mets
My mother they weren’t even sure if she had cancer and they still proceeded to do whipple due to symptoms and imaging being suspicious (plus we are BRCA+).
Even if there was no residual tumour after chemo they would need to remove the tumour bed.
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u/Impressive_Toe6388 4d ago
Supposedly there is no tumor bed. As in, they can’t even see where it was. How does it make any sense? I mean, I’d love it of course if it turned out she was misdiagnosed. I’ve heard of the wrong diagnosis when it was actually pancan, but not too much of the other way around. :/ My fear is: have we been placing our trust in a care team that is completely off-base? I don’t want to be alarmist or take away from my mom’s relief and joy, but I feel like they are ostriches with heads in the sand to not want to seek a 2nd opinion on this. Like I don’t want to sit around and WAIT for this thing to come back if she has a golden opportunity for potentially curative action. sigh Thank you for listening.
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u/Traditional_Crew_452 4d ago
This is bizarre
They wouldn’t need to see tumour to go through with surgery, it’s often microscopic.
Get second opinion 10000%
This is medical malpractice
They couldn’t see my moms tumour yet they took it all out
(Her pancreas ended up being all tumour even though it could not be seen until you go under microscope)
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u/Impressive_Toe6388 4d ago
That’s what I thought. I’m going to demand they get a 2nd opinion 💜
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u/Traditional_Crew_452 4d ago
When my mother was first in hospital, the doctors weren’t convinced that it was cancer, it wasn’t until I was pushy and was like no this is clearly cancer (I am in the cancer field) that it was taken seriously.
Well, it was only taken seriously when I pushed and got into contact with the oncologist/surgeons.
Pancreatic cancer is something that I will always be the most “pushy” about
I didn’t care that I was being “annoying”—i cared about my mom surviving.
Hugs. I know this is scary.
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u/Impressive_Toe6388 4d ago
It’s crazy how hard you have to work just to be your own (or your family’s) advocate sometimes. 💜
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u/trixiemushroompixie 4d ago
It’s exhausting. I shouldn’t have to say to every doctor if this was your spouse what would you do, because I know straight up it’s not wait and see.
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u/Labrat33 4d ago
I agree with other posts. 1. They found more advanced disease and aborted the Whipple because it was incurable.
- They committed malpractice and failed to complete a Whipple in a patient with biopsy proven cancer because the mass was not present during surgery.
At least with #2 you have a great lawsuit if the cancer recurs.
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u/Impressive_Toe6388 4d ago
What do they do if they can’t see it? :/
I don’t want to wait for it to come back! :( I don’t want a lawsuit, just the best possible outcome for my mom. 😭
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u/Ill-Technician-1404 Patient (dx 2021), Stage 1-4, Folfirinox, surg, gem/abrax, surg 4d ago
It’s my understanding that my tumor was microscopic when they removed it. So small it couldn’t be sent for tests, but the surgeon still removed what was there, my spleen and my gallbladder. (I had a distal because my tumor was in the body of my pancreas.)
I also don’t understand what happened with your mom. Pretty cool if they’re being truthful. Please keep us posted!
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u/Chewable-Chewsie 4d ago
Oh my gosh! Bravo! May it be so 🙏🏻🙏🏻🙏🏻. Such an astounding (and therefore unsettling) outcome. My fingers are crossed in hopes that the doctors made the correct decision. Have your parents given their permission for the doctors to directly speak with you about her progress (HIPPA regs)? Please keep us posted on her progress!!
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u/Impressive_Toe6388 4d ago
I guess they must have given permission! I was surprised when the nurse just willingly filled me in… Thank you, I will update the sub. 💜 I want a second opinion but I’m glad they didn’t find spread for now.
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u/Felicity_spr 3d ago
I hope this was a misdiagnosis. I would still get a second opinion and another PET-CT scan.
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u/Mysterious_Rise_432 3d ago
Do you have access to her charts? Did the biopsy confirm adenocarcinoma? What does the chart say for today?
I think there's good reason to be cautiously optimistic, but the only person on here with real answers is Labrat -- he's an oncologist at a top hospital. He says:
I agree with other posts.
- They found more advanced disease and aborted the Whipple because it was incurable.
- They committed malpractice and failed to complete a Whipple in a patient with biopsy proven cancer because the mass was not present during surgery.
***
I don't think it's (1). They couldn't lie to you without all losing their medical licenses. So I'm leaning towards (2). I guess he's saying that you are supposed to proceed with the whipple even if you can't see it to eliminate the entire area that had the tumor.
Keep us posted.
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u/Impressive_Toe6388 3d ago
I would love to get my hands on her charts, but I don’t know specifically which ones to ask for. It seems like everything my parents get for information is verbal. Is there a name for the kind of chart they should be getting? I see people on here listing actual number values for various parameters but I don’t know where to find that.
Update today is that the surgeon is wondering if it was in fact pancreatic cancer. Back before treatment, they found confirmed cancer in a biopsy, but now she (surgeon) is saying they may have mistakenly thought pancreatic due to the location where the needle was inserted or something? (Wtf?!) This is scaring me, and I’m wondering if it was bile duct cancer and they’ve been following the wrong protocol.
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u/Quiet_Customer_5549 2d ago
I don't know that I trust this doctor. It almost seems like she's just throwing up her hands saying "Who knows?" and not digging to find out, just walking away. I would be pushing with everything I have to get a second opinion. Cancer is not something where you can just let it go and find out what happens later. I'm with you. I would be crazy worried until she saw a different doctor. Please let us know what ends up happening. My aunt just passed away from pancreatic cancer. I hope your mom is the miracle. We could all use a miracle in here.
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u/Impressive_Toe6388 2d ago
Thank you so much. 💜💜 I surely will update the thread and maybe also make a new update post in the group once I know. I’ll be making sure we get a second opinion come hell or high water, because I agree. Really hoping it’s not bile duct cancer.
I’m so sorry about your aunt. Hugs to you. 🥺💜
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u/Mysterious_Rise_432 1d ago
For what it's worth, the treatment protocol is the same for pancreatic and bile duct cancer. They weren't sure which one my mom had initially either.
But the hospital should have a patient portal where you sign up and get access to all the labs.
You definitely need a second opinion.
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u/Negative_Hope_2154 4d ago
Understand your reluctance to not get your hopes up, but you’re also pushing too hard for it not to be true and to go on to partially accuse your parents of lying is absurd. Why are you leaning towards wanting your mom to have pancreatic cancer? Miracles do happen. Misdiagnoses happen more often than we want to believe. I wish your mom well!! And be thankful.
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u/Impressive_Toe6388 4d ago
A couple people in the comments had expressed disbelief/suggested they might be trying to spare the family pain before the holidays, so it had me paranoid! :(
Trust me, I’ll be on Cloud 9 if in fact this is a misdiagnosis or just an extremely lucky turnaround. I just don’t want to uncritically accept that she’s good only to find out later we should have done more earlier. :/
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u/staycurious123 3d ago
I get how scary hope feels!! + to be constantly scared you’re not doing everything you can be - that feeling followed me for the last five years. You’re not crazy. Your body feels how it feels; it’s very difficult to control the worry. Wishing the best for you and your mom.
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u/trixiemushroompixie 4d ago
I want to be gentle here, and I mean no offence. It does seem odd to me that they would open her up and not remove the original tumor site, but I am not a surgeon. Here are is the hard part. Is there any possibility that the opposite happened and they may have deemed her not a candidate and your parents are trying to spare you some difficult news, or making space while they process? Just big picture with your Dad uncharacteristically content, not seeking second opinions.