Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Profile picture for joealp1 @joealp1

@rosebella
My tumor did affect the SMA and SMV. My understanding is that the ultra sound target is precise, and they avoid the SMA and V. Subsequently there's some daylight emerging between what's left of the tumor and the SMV, and it's a continuing process.

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@joealp1 That is very good news that it can be utilized near the vessels since so many have vessel involvement by the time of diagnosis and there aren’t very few options. I am cheering for your continued progress. 🙂

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Profile picture for joealp1 @joealp1

@rosebella
Hi: The cost, I'm certain, will vary by location and the provider's status: for profit, non profit, etc. I had found a quote on line for histotripsy of the liver, around $17,000. So that was the number I had in mind when I expressed my interest. It was finally higher, but in that ballpark. Hope that helps.

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@joealp1 Thank you for that information. I was thinking in that ballpark given all that is involved. I think it’s great you are pursuing options and sharing them with the group.

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Profile picture for rosebella @rosebella

@joealp1 That is a large tumor. Has the tumor affected the SMA or SMV (artery or vein)? I was curious if histotripsy could be used near the blood vessels.

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@rosebella
My tumor did affect the SMA and SMV. My understanding is that the ultra sound target is precise, and they avoid the SMA and V. Subsequently there's some daylight emerging between what's left of the tumor and the SMV, and it's a continuing process.

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Profile picture for rosebella @rosebella

@joealp1 It is so great to hear that you have had such a positive response! Thank you for sharing your experience. It gives hope to others. You mentioned paying for it. Can you share the ballpark cost?

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@rosebella
Hi: The cost, I'm certain, will vary by location and the provider's status: for profit, non profit, etc. I had found a quote on line for histotripsy of the liver, around $17,000. So that was the number I had in mind when I expressed my interest. It was finally higher, but in that ballpark. Hope that helps.

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Profile picture for joealp1 @joealp1

@californiazebra
My procedure was done "off label", in other words, not covered by insurance. Histotripsy for the pancreas is in a clinical trial in Barcelona, but it's a procedure that can be performed, just needs a surgeon trained in the procedure and with access to the equipment. My surgical oncologist is Dr. Mark Bloomston, with Lee Health, 239-343-7400. He's in Ft. Myers, FL. By his estimate, the tumor was shrunk by about 50%, and it's possible that what's left is dead.
The procedure took a little over an hour in the operating room. My tumor was large, 6.9 x 4.8 x 4.2 cm. Doc had to reposition the device for three separate applications; normally, it's only a single set up and the time in the operating room is closer to 45 minutes. Hardest part was the prep, much like prepping for a colonoscopy.
Hope this answers your questions.

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@joealp1 That is a large tumor. Has the tumor affected the SMA or SMV (artery or vein)? I was curious if histotripsy could be used near the blood vessels.

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Profile picture for joealp1 @joealp1

@tomrennie
Histotripsy for the pancreas IS still in trial, I believe trials are necessary to amass data for the FDA to eventually allow insurance coverage. Meanwhile, the procedure is available, just off label. Means you have to pay. It's safe, and it does what it advertises--reduces size of/kills the tumor it addresses. I've had no ill after effects. Based on post treatment CT and PET scans, and after 9 months of chemo, my doctors have paused chemo, waiting to see what happens next. I'm looking forward to a few months of getting back closer to pre-treatment form.

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@joealp1 It is so great to hear that you have had such a positive response! Thank you for sharing your experience. It gives hope to others. You mentioned paying for it. Can you share the ballpark cost?

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Profile picture for joealp1 @joealp1

@lhlawrence
I'm an 87 year old man, diagnosed in Feb. 2025 with adenocarcinoma in head of pancreas, non-resectable. I've been on chemo, gemcitabine and abraxane, since March, every 2 weeks, so far no metastasis. My surgical guy, Mark Bloomston, with Lee Health in southwest Florida, introduced me to two potential procedures for shrinkage of the tumor: nanoknife and histotripsy. The latter is non invasive, using high energy ultra sound to generate gas bubbles in the tumor that burst, destroying the tumor in the process. It's new for the pancreas, has been approved for use in the liver by the FCC. I had the histotripsy procedure done in December, as an outpatient, recovery a piece of cake, and significant impact on the tumor. Final results await the next scan, but Bloomston very pleased. Your doctors should be aware of these options, nanoknife has been around for a while. Histotripsy for the pancreas is new and wasn't covered by my insurance. Could be a problem. I've learned a lot from ChatGPT, recommend it as a surrogate doctor for general advice and options for discussion with the real gdoctors. Hope this helps.

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@joealp1
It does, thanks

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Profile picture for Zebra @californiazebra

@joealp1
Very helpful. Thank you for your response. Yes, that is a large tumor. I’ve been following histotripsy for the liver and love the idea. I’m hoping it will be approved for the pancreas and other organs sooner rather than later. Great that you haven’t had any ill effects from it. Love how quick it was especially given other pancreatic surgeries are so long and brutal. I pray you’ve seen the last of your cancer. 🙏

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@californiazebra
Many thanks for your prayers, they can only help. Good luck on your journey.

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Profile picture for joealp1 @joealp1

@californiazebra
My procedure was done "off label", in other words, not covered by insurance. Histotripsy for the pancreas is in a clinical trial in Barcelona, but it's a procedure that can be performed, just needs a surgeon trained in the procedure and with access to the equipment. My surgical oncologist is Dr. Mark Bloomston, with Lee Health, 239-343-7400. He's in Ft. Myers, FL. By his estimate, the tumor was shrunk by about 50%, and it's possible that what's left is dead.
The procedure took a little over an hour in the operating room. My tumor was large, 6.9 x 4.8 x 4.2 cm. Doc had to reposition the device for three separate applications; normally, it's only a single set up and the time in the operating room is closer to 45 minutes. Hardest part was the prep, much like prepping for a colonoscopy.
Hope this answers your questions.

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@joealp1
Very helpful. Thank you for your response. Yes, that is a large tumor. I’ve been following histotripsy for the liver and love the idea. I’m hoping it will be approved for the pancreas and other organs sooner rather than later. Great that you haven’t had any ill effects from it. Love how quick it was especially given other pancreatic surgeries are so long and brutal. I pray you’ve seen the last of your cancer. 🙏

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Profile picture for marienewland @mnewland99

@joealp1
Thank you for letting the forum know about histotripsy for pancreas. I had it done on my liver July 2025 and still have a "clean liver". Worked better than the MRI radiation where the effect only lasted 5 months before lesions came back.

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@mnewland99
Hope it continues to do the job for you. Good luck.

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