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Pancreatic adenocarcinoma: Late recurrence in ovary

Posted by jwg19822005 @jwg19822005, Dec 13, 2024

Hi all,

I’ve lurked on this board off and on for years but this is my first post. My mom (68, in excellent health) had a distal pancreatectomy/splenectomy in August 2020 for pancreas adenocarcinoma thought to have originated in a mucinous cyst. Had 12 rounds of FOLFIRINOX. Clear scans every 3 months/6 months up until last month when a new 7cm left ovarian cystic lesion showed up. She had surgery yesterday to remove the cyst along with both ovaries and tubes. Frozen section done during surgery suggests a recurrence of the pancreatic adenocarcinoma. Final pathology is pending, peritoneal washings were also done and pending. GYN Onc surgeon who did the BSO said no other disease was apparent in the pelvis.

She does have an ATM germline mutation which was also found in the original pancreas tumor. Ca19-9 most recently was 12, had been 3-6 since surgery (219 at original diagnosis).

This is really hard news to swallow. Has anyone been through a late recurrence in the ovary? Obviously we need to wait for the final pathology, but looks like recurrence is likely. Her oncology care has been through Cleveland Clinic (we have yet to meet with her oncologist as she’s still in hospital recovering from surgery yesterday), wondering if we need to look into a second opinion with Memorial Sloan Kettering or Penn Med - I know both have experience with germline mutations like ATM in pan cancer. Also interested in the possibility of HIPEC for her as it seems the most likely re-recurrence would be in the peritoneum?

Thanks for any input.

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aprilg | @aprilg | Dec 13, 2024

I did not have a late occurrence but we found some cysts that turned out to be malignant. When they removed the ovaries is seeded into my peritoneum and now that is what we are battling. I did have a laparoscopic HIPEC that doesn’t seem to have worked.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 24, 2024
In reply to @aprilg "I did not have a late occurrence but we found some cysts that turned out to..." + (show)
@aprilg

I did not have a late occurrence but we found some cysts that turned out to be malignant. When they removed the ovaries is seeded into my peritoneum and now that is what we are battling. I did have a laparoscopic HIPEC that doesn’t seem to have worked.

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@jwg19822005, I can imagine this is hard news to swallow. I hope you saw the reply from @aprilg, who shares a similar experience. I believe @asugent @roseisarose @margefromwi may also have similar experiences to share with you.

@jwg19822005, have you learned more about the recommended treatment path for your mom? How is she doing? How are YOU doing?

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amy | @asugent | Jan 3 2:37pm

Sorry for the late reply, but I always like to help another person if I can.

My mom had late recurrence to the ovary, jutting into the bladder. She was just shy of 3 years in remission when it was discovered. Definitely a blow, but all hope is not lost. They gave her targeted radiation, which obliterated the cancer with only residual cancer remaining. This was followed by a cleanup surgery. Her last CT did show some heightened areas of concern in the surgical bed, but they're not convinced this is cancer, although being in the surgical bed, chances are high. They started her on oral chemo that has her CA-19-9 trending downward and last Signatera test was negative.

It goes without saying, but hopefully your mom is at a top cancer center familiar with latest clinical trials and protocol for PC.

It's worth trying everything your mom is up for. My mom's oncologist said they may get to a point where they can treat this like a chronic disease. I don't know if we'll ever find a "cure" for cancer, but with targeted therapies, I believe it will be possible for people to live with cancer.

Good luck, and please keep us posted. There is every reason to hope! Advances are happening every day. My mom is 5.5 years post diagnosis. She was originally staged at 2b. She had the whipple, chemo, radiation, and is currently on oral clinical trial to keep cancer at bay. She goes in for a CT next month where we will find out if it's working, but blood tests indicate positive results.

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jwg19822005 | @jwg19822005 | Jan 3 7:45pm
In reply to @asugent "Sorry for the late reply, but I always like to help another person if I can...." + (show)
@asugent

Sorry for the late reply, but I always like to help another person if I can.

My mom had late recurrence to the ovary, jutting into the bladder. She was just shy of 3 years in remission when it was discovered. Definitely a blow, but all hope is not lost. They gave her targeted radiation, which obliterated the cancer with only residual cancer remaining. This was followed by a cleanup surgery. Her last CT did show some heightened areas of concern in the surgical bed, but they're not convinced this is cancer, although being in the surgical bed, chances are high. They started her on oral chemo that has her CA-19-9 trending downward and last Signatera test was negative.

It goes without saying, but hopefully your mom is at a top cancer center familiar with latest clinical trials and protocol for PC.

It's worth trying everything your mom is up for. My mom's oncologist said they may get to a point where they can treat this like a chronic disease. I don't know if we'll ever find a "cure" for cancer, but with targeted therapies, I believe it will be possible for people to live with cancer.

Good luck, and please keep us posted. There is every reason to hope! Advances are happening every day. My mom is 5.5 years post diagnosis. She was originally staged at 2b. She had the whipple, chemo, radiation, and is currently on oral clinical trial to keep cancer at bay. She goes in for a CT next month where we will find out if it's working, but blood tests indicate positive results.

Jump to this post

Amy, thank you so much for that response. It’s so encouraging to hear that. I questioned mom’s oncologist about more surgery or radiation, but he said no and just doing the chemo as follow-up. I guess because there’s no measurable cancer there right now, radiation wouldn’t help? But I question that because the pathology wasn’t clear if the margins were positive or negative. She just had her first CT post-hysterectomy that looks clear.

We’re at Cleveland Clinic which is well regarded, but I don’t know if it really qualifies as a top cancer center?

I appreciate your input so much. Thank you!!

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