Pancreatic cancer returned as mets to ovary: Looking for hope

@asugent, I'm sorry to hear that you mom's pancreatic cancer has returned. You are not alone. I'm bringing @helenar @lfitz @woodlanddsm @slosammie @thebobk @leighs2011 into this discussion to share their stories of hope and encouragement.

How are you doing, Asugent?

@asugent I understand your concern about your mother's situation and the stress it places on you and your mother. It was great that your mother got three years NED and I'm hopeful that the Gemcitabine therapy will be beneficial for her (I just finished 12 cycles of Folfirnox and will start on Gemcitabine the first week in November).

In response to @colleenyount call out, I invite you to watch an interview I recently had with the Power of the Patient Project - https://youtu.be/Inz8Z1s7D04 In addition to a brief summary of my diagnosis and therapy, I discuss how I've been "dealing with" my diagnosis and prognosis in a way that helps me focus on the here and now and to not miss out on those good days/moments that come my way.

My wife, Diane, was also interviewed by the Project and she offers a "bookend" to my interview as a wife/caregiver and also as a nurse who works with cancer researchers and patients - https://youtu.be/qyaw8Cc3Yng Perhaps you and your mother would find something of use in these frank interviews by Diane and me.

Yes, some days, especially when I'm encountering the cumulative side effects of therapy, it's a struggle to stay balanced. And on those challenging days I just try to roll with the punches as best I can (e.g., sleeping if that's what my body wants). Other days I can push through the funk with some effort.

Today, for example, started out on a down note, but we're having some great Fall weather in NC, and I was able to get to my patio where I have a little woodworking bench set up and spent some time on a pleasant distraction. It's these little opportunities that I count as "wins" along the way - precious moments that I didn't spend fretting about my situation and future.

Best,

Hello, my Mom's situation is similar to your Mom's situation. My Mom had the Whipple in July 2020. She was NED for 18 months and then had a recurrence in December 2021 in the peritoneum. She had a small surgery to remove the growths. A few months ago, my Mom's stomach began to get bigger all of a sudden. She had cytoreductive surgery last week, which revealed two large ovarian cysts/mets. Now that the ovaries and mets are out, she is feeling much better. My Mom doesn't have regular pancreatic cancer- she has IOPN cancer of the pancreas for which chemotherapy is not very effective. As a result, we are choosing the wait/watch approach, aggressive surgical resection, while also waiting for a promising clinical trial to open up that targets her genetic fusion.

I would recommend the following regarding the ovarian mets considering my family just went through this: 1) don't fall into the trap that all stage IV pancreatic cancer is the same. That's simply not true. The fact that your Mom was NED for three years shows that the cancer is not as aggressive as the average pancreatic cancer, which is really good. Every tumor has a unique genetic makeup; 2) the fact that the cancer went to the ovaries is better than other organs such as the liver or lungs because ovaries are not vital organs that your Mom needs to survive, which is another great thing; 3) the fact that she had such a long NED period is more reason for her to have her ovaries and the mets removed surgically as soon as possible. I'd recommend removing them and doing some rounds of chemo after to kill the remaining cells. Ovarian mets can start to cause symptoms really quickly, so the faster they're out, the better. My Mom started developing symptoms within a few months; 4) do complete genetic testing of her tumor to see if there are any genetic mutations that can be targeted through medicines and immunotherapy; 5) Make sure you are getting care at a top cancer institution and not at a local hospital. Please reach out if you have any questions. Hope this helps!

Hi All,

My mom, after 3 years in remission following chemo/radiation and Whipple, was dx with mets to the left adnexa - outside of ovary and pushing up against bladder. We hear it is extremely rare for PC to show up in this area. Pathology report (done by Urology path) determined it was NOT pancreatic cancer, but oncologist is almost certain it is. He started my mom on Gemcidabine/Abraxine (sp?). Anyone have any experience with mets in a weird area? What was your outcome? Thanks in advance!

@asugent, I moved your new message to the original discussion you started here:
- Pancreatic cancer returned as mets to ovary: Looking for hope https://connect.mayoclinic.org/discussion/mets-to-ovary/

I did this so you can see the post that @asingh90 wrote to you about her mom's experience with metastasis to the ovaries.

Asugent, adnexal tumors can be cancerous, but most often they are benign. It must be confusing to hear from one specialist that she has mets and from the other that the tumors on the ovary is benign. What tests were done to confirm that the new growth is cancer? How is she doing on chemo?

Oh, it's definitely cancer. They did a biopsy and malignant cells were found. From everything I have read, it is extremely rare for PC to show up in this area. Pathologist didn't think it was PC, but oncologist does and she's back on chemo.

Thank you. I will definitely check out the links you have shared. I appreciate your response. Here's wishing you many more good days!

Thank you for your kind response. My mom is having chemo/radiation upfront to kill as many micro mets as possible before surgery.

This tumor apparently showed up on a CT back in March and her oncologist and the radiologist missed it. It's now leaning into the bladder causing hematuria and some pressure. We are at a good Cancer Center, but I am so angry with her oncologist I could fire him. But, it's my mom's decision and I have to respect it. She wants to stick with him. She did have an AMAZING surgeon and I am hopeful she can get her again!

Her oncologist tends to agree with you that being NED for 3 years is a good sign that we can beat this down and get her back to NED. I sure hope so! My mom is a fighter and has a strong life force. She is keeping a positive attitude and I think that has carried her a long way.

Again, thank you for sharing your story. I hope your mom is doing well!

@asugent I haven't been reading posts here regularly since my wife passed. In order to stay positive and on point, I'll focus on advice. My wife had "skip metastasis" to the left ovary after 10 months NED. She had it successfully removed and had 2 years of chemo regimens ( GAC x 18 treatments; Onivyde x 12 treatments) neither kept the mets in check. Ascites developed in the last year and added biweekly paracentesis procedures for relief of pressure. I did my own research and found monoclonal antibodies that were being used against ovarian cancer with the same mutations my wife had. While fighting with the hospital and insurance to get approved, I also found that peritoneal chemo can be delivered directly into the abdominal space instead of IV . Look for "hot chemo" and see if it's appropriate. Logically to me (I'm an engineer, not a doctor), since iv chemo doesn't effectively reach all peritoneal tissue, the direct infusion makes sense. By the time I won the arguments by showing proof that there were oncologists doing what logic told me could work, it was too late for my wife. At the first sight of ascites, see about changing regimens and infusion method. Good luck.

Hi
My sister had a pancreatectomy last Dec and 10 months after, it spread to her ovaries and peritonium. Her ovaries were taken out and they did HIPEC hot chemo wash at that time.
She just had a PET scan done yesterday and thank God her CA19-9 came down but still high and her peritoneal cavity was clear.