Just diagnosed stage 1 pancreatic. Anyone treated without surgery?

Posted by behr66 @behr66, 6 days ago

Hi, just diagnosed stage 1 pancreatic cancer. 68 yes old, fit, and not wanting life changing surgery. I'm going to request Just chemo. Anybody done this....any thoughts ?. Hugh.

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@behr66 Hi and welcome to Mayo Connect. A few quick questions. What specific type of pancreatic cancer do your have? Where on your pancreas is it? What chemos and surgeries are you considering? Thanks.

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I'm 68 and 20 months removed from surgery for pancreatic cancer. There is very little that I can't do or eat that I could before surgery. What symptoms did you have that led to your diagnosis?

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I was diagnosed at 68 years old at stage 2b due to the tumor surrounding the superior mesenteric artery at 180 degrees I was unable to have surgery. I have survived 7 years. Without surgery, I have had to continue to take chemo the entire time. Please give surgery more consideration. Make sure that you go to Wi. or Mn where the best surgeons are located.

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Solid professionals at high volume centers will most always advise chemo before surgery since it can be circulating in your bloodstream. Perhaps catching it at stage 1 will not require. I would definitely consider surgery. A high volume center will take great care of you. Many of us have had surgery and continue to thrive.

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I was diagnosed with stage 1 adenocarcinoma of the pancreas in March of 2023 at age 70. I, too, was healthy and in relatively good shape. The treatment plan was 12 rounds of Folfirinox followed by radiation followed by the Whipple procedure. I started in with Folfirinox in my hometown and had a referral to Mayo for the surgery. I knew it would be a journey with twists and turns, ups and downs.

After 8 rounds of chemo we decided to have the surgery, so chemo was paused for a month, then the Whipple and six weeks before deciding to pick up the chemo for another 4 rounds, which were much rougher on me that the previous 8. Radiation got dropped from the plan.

From my perspective I have spent the last two years recovering as much from the chemo as the surgery. By that I mean I’ve been tending to rebuilding muscle tone, balance, stamina, etc., as well as focusing on what to do with this “new lease” on life. I also had to have abdominal wall reconstruction (March 2025) to deal with hernias related to the Whipple. To reiterate: there will be unexpected situations and choices to made along the way.

That said, I am healthy and have no other after effects from the surgery. Zip. I was able to wean off Creon/Zenpep within a few months. I have had scans/blood work every three months with no evidence of disease. For the next three years I will be monitored every six months. Of course, I cannot be certain the cancer will not come back.

This is an aggressive, baffling, powerful cancer. You are in a good position to successfully treat it because of the early diagnosis. Most people do not have that luck.

Talk to your providers. A second opinion is often helpful. Talk to trusted family and friends. If you decide to have surgery, make sure Whipple is your surgeon’s specialty, that they do a high volume.

My experience has been that it’s a rough road. Fortunately, the surgery has not been life changing for me. Chemo was harder!

I wish you all the best.

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I had a cyst on the head of my pancreas that was found through an incidental finding. Age 67, active, and had just retired. After an MRI and a biopsy, the cyst showed worrisome features, but as to whether the cyst had adenocarcinoma or not could not be confirmed. I met with two pancreatic cancer surgeons from high volume centers (Dr. Kendrick of Mayo, MN and Dr. Douglas Evans from Froedtert & MCW in WI). Dr. Evans performed my Whipple in 2024. I will never forget when Dr. Evans said to me during my consultation, there is a 50/50 chance that the cyst contains adenocarcinoma cells. That was my turning point, I knew right then and there that I had to do the Whipple surgery. Sure enough, after my surgery it was confirmed that indeed my cyst had cancer (stage 1A). Has the Whipple been life changing? Yes, I take my health very seriously now. I eat healthy, walk, and go to the gym multiple times a week and appreciate the gift of life I have been given. Had I not done the Whipple, I truly believe I would be making my end of life plans. Pancreatic cancer is one of the most aggressive and formidable cancers to treat. Please reconsider having the Whipple. I continue to be cancer free to this day.

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Profile picture for jnowling @jnowling

I'm 68 and 20 months removed from surgery for pancreatic cancer. There is very little that I can't do or eat that I could before surgery. What symptoms did you have that led to your diagnosis?

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@jnowling Hi. I had a raised HbaIc reading and was referred for a scan. They found a small lesion on my pancreas. I met with the surgeon and he recommended a full pancreas removal as well as my spleen. Im having all the pre op tests now but wanted to converse with someone who had been through it. (What were the side effects, and did it impact on your life much). Again, I wondered if avoiding surgery was possible ?. Thanks.

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Profile picture for mcharlesfrancis @mcharlesfrancis

I was diagnosed at 68 years old at stage 2b due to the tumor surrounding the superior mesenteric artery at 180 degrees I was unable to have surgery. I have survived 7 years. Without surgery, I have had to continue to take chemo the entire time. Please give surgery more consideration. Make sure that you go to Wi. or Mn where the best surgeons are located.

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@mcharlesfrancis Hi. Thanks for the reply. Im actualy in the UK. How has it been for you using just chemo ?. Has it impacted on your life much ?. Thanks.

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behr66

I am happy to speak to you. My Bio is on Seena Magowitz foundation web site. I speak to patients all the time from many countries. We have a Zoom call twice a month with 25 to 30 survivors participating. If you need to talk sooner contact me thru Seena Magowitz Foundation

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Profile picture for behr66 @behr66

@jnowling Hi. I had a raised HbaIc reading and was referred for a scan. They found a small lesion on my pancreas. I met with the surgeon and he recommended a full pancreas removal as well as my spleen. Im having all the pre op tests now but wanted to converse with someone who had been through it. (What were the side effects, and did it impact on your life much). Again, I wondered if avoiding surgery was possible ?. Thanks.

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I was diagnosed with Adenocarcinoma on the head of my Pancreas on 7/5/2023 at my local Hospital in Michigan. I was told by the Tumor Board that it was not operatable. After some research we chose The Mayo Clinic in Rochester Mn. 6 months of Chemo followed by 3 weeks of radiation I had the Whipple surgery performed by Dr Starlinger.
There were some set backs, but after the first month following surgery things got back to normal for the most part. Do your research, most people get diagnosed to late. Best of Luck.

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