1. < Pancreatic Cancer

Prognosis Stage 1 chose not to have treatment: What can I expect?

Posted by brookie82 @brookie82, Apr 21, 2023

I’m 82 yo. I have decided to deny all treatment and surgery. I will enjoy what time I have left. I chose not to suffer through months of being Ill due to possible complications of surgery or nine months of chemo and radiation. My question is when can I expect symptoms to appear? The mass was discovered in November of 2022.

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gardenlady1116 | @gardenlady1116 | Apr 26, 2023
In reply to @frygirl777 "So sorry to hear but Stage 1 pancreatic cancer has more treatment options than Stage 3-4...." + (show)
@frygirl777

So sorry to hear but Stage 1 pancreatic cancer has more treatment options than Stage 3-4. It’s everyone’s own personal decision, of course!

I had severe pain in my left side which radiated to my middle back in September, 2022. Was admitted and misdiagnosed with necrotizing pancreatitis. I began losing weight quickly from then on. On a follow up MRI in November a tumor was spotted in the body/tail of my pancreas. I was diagnosed with Stage 1B. A biopsy in December confirmed adenocarcinoma. A distal pancreatectomy with splenectomy was performed in early January. I healed nicely from that then had 5 back to back radiation treatments in March. I am starting 6 months of chemo shortly. I am still losing weight slowly without trying. I am now taking Omeprazole to help with burning in my stomach as well as digestive enzymes before eating anything. My digestion is not as great as before. My blood sugar has increased so am taking cinnamon capsules to try to keep it in the normal range. Do not want to be diabetic!!!
I have a lot of fatigue but assume this may still be from the radiation in March. I had a lot of nausea also, associated with the radiation for a month. Radiation made me feel really awful! Ozone therapy has truly helped my nausea and does give you more energy. I highly recommend it to anyone to add oxygen into your blood & to remove free radicles & toxins such as heavy metals from medications, vaccines, dye/contrast from CT scans & MRIs, etc. You feel like you’re 30 again after each treatment!

Best wishes in whichever decision you make! I honestly don’t want to do chemo either but with this cancer especially, you need to be more aggressive than it is, if you so choose to fight.

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Admire your courage!!

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 1, 2023
In reply to @brookie82 "Thank you for your comment. I’m in my 83rd year, have other medical issues, restricted mobility,..." + (show)
@brookie82

Thank you for your comment. I’m in my 83rd year, have other medical issues, restricted mobility, heart disease, diabetes, stage 3 kidney disease. I don’t think I could survive surgery and chemo+radiation. I’m feeling very well right now, taking full advantage of it, enjoying my life while I can. I know so many people disagree with my decision but I am very comfortable with it.
Your comforting words meant a lot to me.

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@brookie82, like others here, I support your informed decision. Given that you have other medical issues, it might be hard even for your oncologist to know what symptoms of pancreatic cancer you may get or how the disease might progress for you. But that is where I would ask.

We're all different and your stage 1 progression may differ from someone else.

Have you looked into palliative care? I like to refer to palliative care as comfort care or symptom management. They will help you manage symptoms as they arise and keep you comfortable. Let me know if you would like more information about palliative care and what it is.

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1 reply
markymarkfl | @markymarkfl | May 1, 2023

@brookie82 , My 85-year old father has similar medical conditions to yours. He started immunotherapy last August for a different type of cancer, and had to stop in December. Aside from "giving it the old college try" to find out, he wishes he had never started it. So he and I make two people who fully understand and support your decision!

As many have pointed out, everyone is different. I'm thrilled you still feel well 6 months after diagnosis. Do you have more recent imaging or other test result to indicate if you are even still at Stage 1, or have advanced since then?

My pancreatic cancer was caught at Stage 2, in the head of my pancreas, after blocking my common bile duct. Symptoms and signs in order were: increasing liver enzymes, weight loss, stool & urine changes, minor jaundice in eyes, jaundice becoming noticeable in skin color, and then... the itching!

Those symptoms & signs evolved over a period of about 3 months. My surgeon estimated the tumor had been growing about two years to reach that point, although we have no real way to confirm it. An "easy" procedure (compared to Whipple) to take a biopsy sample was the EUS/ERCP, during which they inserted a stent to open my bile duct. That relieved the jaundice and itching until my Whipple surgery 8 months later, and should probably be an option for you if you need it.

Wishing you the best!

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1 reply
brookie82 | @brookie82 | May 2, 2023
In reply to @colleenyoung "@brookie82, like others here, I support your informed decision. Given that you have other medical issues,..." + (show)
@colleenyoung

@brookie82, like others here, I support your informed decision. Given that you have other medical issues, it might be hard even for your oncologist to know what symptoms of pancreatic cancer you may get or how the disease might progress for you. But that is where I would ask.

We're all different and your stage 1 progression may differ from someone else.

Have you looked into palliative care? I like to refer to palliative care as comfort care or symptom management. They will help you manage symptoms as they arise and keep you comfortable. Let me know if you would like more information about palliative care and what it is.

Jump to this post

I would like to know more about palliative care. Thank you

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 2, 2023
In reply to @brookie82 "I would like to know more about palliative care. Thank you" + (show)
@brookie82

I would like to know more about palliative care. Thank you

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Brookie, here is a related discussion about palliative care with loads of information, resources and people's experiences:
- Palliative Care: What is it? How do I get it? https://connect.mayoclinic.org/discussion/palliative-care-1/

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gardenlady1116 | @gardenlady1116 | May 2, 2023
In reply to @markymarkfl "@brookie82 , My 85-year old father has similar medical conditions to yours. He started immunotherapy last..." + (show)
@markymarkfl

@brookie82 , My 85-year old father has similar medical conditions to yours. He started immunotherapy last August for a different type of cancer, and had to stop in December. Aside from "giving it the old college try" to find out, he wishes he had never started it. So he and I make two people who fully understand and support your decision!

As many have pointed out, everyone is different. I'm thrilled you still feel well 6 months after diagnosis. Do you have more recent imaging or other test result to indicate if you are even still at Stage 1, or have advanced since then?

My pancreatic cancer was caught at Stage 2, in the head of my pancreas, after blocking my common bile duct. Symptoms and signs in order were: increasing liver enzymes, weight loss, stool & urine changes, minor jaundice in eyes, jaundice becoming noticeable in skin color, and then... the itching!

Those symptoms & signs evolved over a period of about 3 months. My surgeon estimated the tumor had been growing about two years to reach that point, although we have no real way to confirm it. An "easy" procedure (compared to Whipple) to take a biopsy sample was the EUS/ERCP, during which they inserted a stent to open my bile duct. That relieved the jaundice and itching until my Whipple surgery 8 months later, and should probably be an option for you if you need it.

Wishing you the best!

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Thank you for sharing your story

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brookie82 | @brookie82 | Apr 3 1:23pm

It’s been a year and a half since diagnosis of pancreatic cancer, stage 1. What can I expect in my future. I am more or less symptom free right now. But I don’t know how long before symptoms will start.

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4 replies
brookie82 | @brookie82 | Apr 3 1:24pm
In reply to @brookie82 "It’s been a year and a half since diagnosis of pancreatic cancer, stage 1. What can..." + (show)
@brookie82

It’s been a year and a half since diagnosis of pancreatic cancer, stage 1. What can I expect in my future. I am more or less symptom free right now. But I don’t know how long before symptoms will start.

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Addition to post:
I chose not to receive any treatment. I’m 83 years old.

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2 replies
marienewland | @mnewland99 | Apr 4 6:00am
In reply to @brookie82 "Addition to post: I chose not to receive any treatment. I’m 83 years old." + (show)
@brookie82

Addition to post:
I chose not to receive any treatment. I’m 83 years old.

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Hi @brookie82
That’s a great question! What kind of symptoms are you having if I may ask? Some pancreatic cancers are more aggressive than others. Do you know the mutation you have? What is your CA19-9? I have 3 mutations: KRAS12D, ATM base 40 variant, and 1 other. Mine is considered aggressive. In early 2022 (April), my diabetes after being controlled with diet and exercise suddenly started going bonkers and no amount of metformin seemed to be able to get it under control (blood sugar readings in the 300-400 range). I also was getting some right sided sun in my back the more I did my typical 2-mile walk, and I also had nausea and stared to lose weight without even trying followed by severe diarrhea after eating. I had Kaiser at the time and my primary care dr refused to send me to an endocrinologist. In early July I switched insurance to a HMO (I do recommend having a PPO which I have now) with Blue Shield and was sent to an endocrinologist right away who ordered a CT in September and from there my history goes on; diagnosed with Stage 2 with 1 lymph node involvement. When was your last CT? on this post I do see people in your age group receiving treatment whether it be chemo or surgery if some sort. Many people don’t catch this thing early, so you are lucky to have caught it early but it seems that we dint know what stage are in now? Many on this post will post information for you at a much more elevated level which will be more helpful. I wish you well.

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mayoconnectuser1 | @mayoconnectuser1 | Apr 4 10:08am
In reply to @brookie82 "Addition to post: I chose not to receive any treatment. I’m 83 years old." + (show)
@brookie82

Addition to post:
I chose not to receive any treatment. I’m 83 years old.

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brookie,

Why not? It might be that you could have chemo on and off and extend your life by 15 years!

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