Pancreatic Cancer Group: Introduce yourself and connect with others

Hi, not sure if this is helpful, but I will relay my experience, even though everyone is different. I had an MRI in 2021, after unexplained weight loss, that showed a 2cm IPMN cyst in the tail of my pancreas. The EUS came back negative. There was a little involvement with main duct. Decision was made to monitor again in a year. In 2022 the cyst was 2.1cm, but main duct around the cyst was noticably dilated. Even though the cyst had not grown considerably, the area around it was suspicious. Then I had a distal pancreatectomy, and an adenocarcinoma was found, but cleanly removed with no local spread. I am stage 1b pancreatic cancer and undergoing chemo. I think sometimes it's not always the size of the cyst, but conditions around the cyst and characteristics of the cyst that could determine action. I hope this is somewhat helpful.

I have a friend with a cyst and she gets regular monitoring scans. She's not at Mayo, but the center where she goes wants to monitor it. From what I have read, they are typically benign, but most centers will want to keep an eye on them to watch for any changes. You should talk to your doctor and ask them questions until you are comfortable with the answers. You can always seek a second opinion.

Hello,

I’ve posted before and just wanted to ‘check in’… it’s a comfort to talk to someone…

This coming Monday, since we are in Florida, I am going for my 3rd contrast MRI @ Jacksonville, Mayo (first 2 done in Rochester along with an EUS). They want to monitor as the 2nd MRI was inconclusive whether or not my cyst is growing or whether it was just the angle of the ‘slicing’ of the MRI picture.

My questions are: Is this a normal explanation and possible? How long do they ‘monitor’ a cyst? My CA count in October was ‘15’, previously it was ‘16’. I do not have any other symptoms, nor do I have dramatic weight loss.

I had a consultation with one of the surgeons who told me that where my cyst is located, there is an 85% chance it’s benign and that since I am a bit overweight (250 lbs / 5’9) the Whipple surgery would be risky. Said that even at Mayo Rochester the mortality rate is 1-2%. I am trying to lose weight to make my health condition easier, but my concern is when do they make the decision to remove my cyst or does it have to become cancerous first? (That scares me too).

Any thoughts or similar situations people can share are appreciated. Thanks .

I understand radiation can be used. I had a consultation at Memorial Sloan Kettering Cancer Center in NYC. I am glad I went to a cancer center which is a recognized center of excellence for pancreatic cancer care. If there is one near you, I highly recommend making your way to one.

Hello. I am a 75 year old woman who had no precursors for this cancer.
I was diagnosed in Oct 2022 and have undergone 4 chemo sessions. The CT after the third chemo showed the cancer had advanced by 1/2 cm rather than shrinking. I am not tolerating the chemo well and wondering what other options there may be?

An 8mm dilated pancreatic duct was found incidental to a CT scan for diverticulitis. I have had this for 9 years but was only told recently. I have IPMN in the head of the pancreas. Biopsy via EUS/ERCP was negative. Two doctors feel I should have a prophylactic Whipple as I am in good health, no underlying conditions. Very conflicted. I am 70. Would appreciate input.

Thank you @thawk32 . Very useful advise. Will try the Ensure. Will try anything that is going to improve her quality of life

Thank you @sprinter345

Thank you @ken240 l am just so worried about her. I live in a different country and when I call and I’m told she is always sleeping it worries if she will one day get over the chemo effect and roll back to her normal life start going to work. Will try your trick to speak with the doc to re look at the dosages etc. Appreciated

Hi Yaya, as another commenter has said, everyone reacts differently to chemo. Fatigue is consistent, but
I usually feel a little better around the fifth day after Folferinox treatment. I always eat small portions several times a day, making sure to include protein-rich foods. Sometimes at the beginning of a new cycle, if I am still feeling sick from side effects, my doctor will agree for an extra week off to recover, and that has helped me tolerate the next cycle (I am up to number 9). Also, when I experienced some acute neuropathy, the dosage was reduced twice, and that has helped. I have found that when I tell the doctor the side effects I experience, there is usually some alternative to ease the severity. Best wishes.