Pancreatic cancer returned as mets to ovary: Looking for hope

@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.

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
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.

Hi, how is your mom?

My mom was going to be moved onto surgery for removal of mets to ovary but tumor board said "slow down" and wants ample tests run before surgery. My mom is discouraged, and so am I, but I guess their thought is why put her through surgery if it won't help. It's like they cannot believe it showed up only in this area and they are on the hunt for more cancer. It's terrifying. She will meet with surgeon later this week, and I am not sure what these tests are they want to run.

Just wanted to see how your mom is doing...

Hello, my Mom is doing a lot better, thankfully. The surgery was successful in that it cleared up all her symptoms and she is back to feeling normal. The recovery also was uneventful and was feeling better very quickly, thankfully. She is exercising again, eating normally, and her energy level is basically back to normal too. She also had a scan about 10 days ago, which showed no return of the cancer so far. The only thing that showed up was a small spot on the liver, which has been there since May and our oncologist isn't worried about it- he's not convinced it's a met. We are hoping our clinical trial opens up soon that targets the tumor's specific genetic fusion, which the tumor needs to survive and grow. Thank you for asking!

I'm sorry to hear your hospital is hesitating about the surgery. I'm not sure why they are doing that. What I have read is that surgery is discouraged when a cancer is very aggressive or if the patient is very old and has a lot of other health issues. For example, in my Mom's case, her variant of pancreatic cancer is known to be normally a bit more slow growing, so surgery made more sense to the doctor. In your situation, the cancer does not seem aggressive, since your Mom was NED for 3 years (which is a very long time compared to averages) and it sounds like the ovarian mets have not grown much since they were discovered in the scan. This shows the cancer is not aggressive. I would be persistent and strong with your hospital and really push that you want surgery. If they still give you a tough time, please pursue second and third opinions. Try to find a surgeon that is aggressive. I'm not sure where you are located, but if you are interested in coming to Southern California where we live, I can recommend our local surgeons. I'm not sure how large the mets are, but if they are small, maybe they can even do the surgery laparoscopically. Please be strong with your meeting with your surgeon and tell him that chemo wasn't helpful and that you want surgery to get back to NED. In terms of testing, I think they would do a PET scan to see if the cancer is in other places. But again, even if it is, surgery can still help. You can also do to a larger surgery if needed like debulking surgery or cytoreductive surgery if the cancer shows up in other parts of the abdomen. There are options out there, but in pancreatic cancer, I've noticed that surgery is discouraged because for most people, the cancer is too aggressive. But in situations like yours where the cancer is not so aggressive, surgery can be extremely helpful. Keep reminding them that your cancer has not behaved like the typical pancreatic cancer, and thus, they should not treat it like an average, textbook aggressive cancer. They should be open to trying other treatments such as surgery. Continue to pursue other medical opinions if you are not happy with what your doctors are saying. Please let me know if you have any questions.

Thank you for your quick reply. My mom is located in Milwaukee, WI, so closest Mayo is in Rochester, MN. She's toying with the idea of calling and getting a second opinion there, which is why I'm on this thread. She has to see if Medicare will cover it.

Yes, I agree that they most likely will want to do a PET scan. It's almost like they cannot believe the cancer isn't hiding out elsewhere. I understand the conservative approach, given all the reasons you mentioned, and I am sure that is what is behind their logic. It's worrisome! I pray they don't find any more cancer and can do the surgery. Even if only to give her 3 more years in NED. It's worth it to her. She's 73, so not super old. Otherwise in good health.

Thank you for your encouragement!

Sorry - so there has not been a PET scan?