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Advice needed about my Mom
Hello everyone, my Mom was diagnosed with a rare form of pancreatic cancer (arising from an Intraductual Oncocytic Papillary Neoplasm) in July 2020. She had a successful Whipple procedure. She then was supposed to have 12 sessions chemo, but they only did three because of side effects (which were later proved to be non-chemo related) and the fact that this type of pancreatic cancer is very rare and there wasn't a lot of evidence to show that the chemo would or would not work. They thought they caught it early enough and that she would be fine without the chemo.
Unfortunately, the cancer came back in December 2021 with a nodule in the peritoneum. It was removed laproscopically and was NED until September 2022 when the cancer spread to the ovaries and more of the peritoneum. She had her ovaries and omentum removed in Oct 2022. Unfortunately, the cancer back all of a sudden much stronger in her scan a few days ago and it is spread all over her abdomen. There is an immunotherapy clinical trial that our doctors feel may be very helpful because it directly targets her rare genetic fusion, but the trial is still not open. They are saying any day now, but there is no official start date. As a result, our oncologist is saying it is time to start chemo in the meantime until the trial begins because he does not want the cancer to get worse. She managed to avoid chemo for this long, but not anymore.
My Mom is doing pretty well overall in that she has a good amount of energy, works out 3-4 times a week, and does her normal routine. She even took an international trip in January for fun. The only thing worrisome is that for the past month and a half, she is getting full much faster and experiencing more acidity, which has led her weight to fall by 4-5 pounds over three months.
She is very upset that she has to go through chemo and it is taking a toll on her mentally. She was hoping she would get on the trial by now and that she would have avoided chemo. I don't want her spirits to get low because of chemo. Does anyone have advice on how to keep up her spirits during this time? She is very nervous about it and while she is very optimistic normally, now she is very down. Thank you in advance for reading this long post and for the advice!
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skiball,
So, you doc recommends resection, but you disagree.
Perhaps a second opinion? Go to a major center?
If the second and third doc recommend resection, would you still disagree?
Are you tracking CA 19-9?
Thanks. I have gotten 2 second opinions. One at MUSC in Charleston, SC, the second at Mass General in Boston. Charleston felt the Whipple was not necessarily inevitable, Boston felt I should have it prophylacticly as my UPMC Pittsburgh doctor has recommended. My CA19-9 is extremely low, single digit.
A counselor could be helpful. Your oncologist or primary care doctor may have a suggestion as to a counselor who has experience working with cancer patients and the issues they face. Sometimes a minister if you have one might be helpful. I have a counselor and a minister. My minister asked me "what are you afraid of". In taking a good look at my fears I found that I was less anxious.
Do any of those centers do laparoscopic Whipples?
This would be a major criteria for me - it means you are dealing with a center of excellence with the best facilities and staff.
I did ask about that, Boston said they do an open incision one. I will double check with my Pittsburgh doc.
I feel like Mass General is pretty state of the art. Why do you think laparoscopic means a better facility, just curious.
It means the facility has invested in the best equipment, best surgeons, best surgical teams, best operating theater equipment - and, knows this reduces infection, and is the future of this surgery.
Now, given I am not a surgeon or a medical scientist, I can only say this is what I believe based on significant reading.
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1 ReactionUT Southwestern medical center does robotic surgery for pancreatic cancer. Dr. Zeh is the pancreatic cancer surgeon.
This is in Dallas, Texas
With my adenocarcinoma (the most common kind) 2B means that I had a tumor just over 2 cm (under 2 cm is Stage 1) and that I had 3 lymph nodes involved (more that 3 lymph nodes is called Stage 3). So I am 2B. The Whipple is a very big deal, so in makes sense to be super-cautious about getting one. I would get a second and perhaps even a third opinion on this if at all possible.
Thanks, Beth. My own doctor is at UPMC in Pgh. I got a second opinion at MUSC in Charleston, SC as we live in SC. A third opinion at Mass General in Boston. Pgh feels the whipple may be inevitable. MUSC said not necessarily. Boston said given my good health, no underlying conditions, good physical shape and my relatively young age (70) that doing it now prophylacticly would give me a better outcome. I am currently monitoring via every 6 months with MRI. I have had zero symptoms and this was only found incidental to a bout of diverticulitis. So I just can't justify doing the Whipple at this point anyway. I appreciate yours and anyone else's opinions or thoughts. Thank you!