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Pancreatic Cancer arising from IPMN pancreatic cyst

Posted by susan2018 @susan2018, Sep 7, 2019

My husband is home from Whipple surgery a week ago at Rochester Mayo and doing well—no pain, ambulating well, is eating. Extremely tired, of course. Went in for removal of Intraductal Papillary Mucinous Neoplasm, came out with Stage IIA pancreatic cancer diagnosis. All margins were clear, all lymph nodes clear. Now to recover and meet with Oncology at Mayo at the end of the month. Just last September he had cardiac quadruple bypass surgery so he’s had a tough year. What next? Anyone with experience with IPMN cancer, anyone with any particularly helpful input, hints, experiences with treatment would be appreciated.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 7, 2019

Hello @susan2018,

Your husband (and you) have had a difficult year medically. I'm sure you are looking for some down-time for a while now. If you are comfortable sharing more, did your husband have symptoms that led to the removal of the Intraductal Papillary Mucinous Neoplasm? How long had he had this condition before surgery?

I am sure that one of our members will respond to your questions about their experiences with treatment, I did find some information on the American Cancer Society's website regarding the staging of pancreatic cancer which you may find interesting. Here is the link,
https://www.cancer.org/cancer/pancreatic-cancer/detection-diagnosis-staging/staging.html
I would like to invite @marvinjsturing, to this discussion as he has had a DX of pancreatic cancer as well and has done quite well since his surgery.

@marvinjsturing, what can you share with @susan2018 about your experience?

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susan2018 | @susan2018 | Sep 7, 2019

My husband did not have symptoms. The cyst in the head of the pancreas was found incidentally on scans done while he was hospitalized last January for diarrhea, dehydration, kidney function etc etc that was eventually treated as Colitis.He was referred to a GI doc who confirmed local findings and then referred to Mayo because of troubling aspects of the cyst in the main duct and branches—size, nodules, thickening of walls. A biopsy prior to surgery came back negative, but in surgery pathology confirmed that the cyst had transformed into a malignancy. I have followed @marvinjsturing comments previously.

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1 reply
marvinjsturing | @marvinjsturing | Sep 7, 2019
In reply to @susan2018 "My husband did not have symptoms. The cyst in the head of the pancreas was found..." + (show)
@susan2018

My husband did not have symptoms. The cyst in the head of the pancreas was found incidentally on scans done while he was hospitalized last January for diarrhea, dehydration, kidney function etc etc that was eventually treated as Colitis.He was referred to a GI doc who confirmed local findings and then referred to Mayo because of troubling aspects of the cyst in the main duct and branches—size, nodules, thickening of walls. A biopsy prior to surgery came back negative, but in surgery pathology confirmed that the cyst had transformed into a malignancy. I have followed @marvinjsturing comments previously.

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@susan2018 My cancer was adenocarcinoma on the head of the pancreas. No experience with IPMN. No one said the word "cancer" until after my Whipple when it was confirmed. I hope your husband continues heal and regain his strength. Have they talked about further treatments- chemo? My cancer involved one lymph node so doctors recommended chemo for me.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 8, 2019

Good morning @susan2018 . This year sounds like it has been hard for both of you. This month would be a good time to rest and get your strength back up (both of you). It would also be good to look into diet and exercise in case your husband needs chemo. See if you can get an appointment with a dietician at the local hospital. Exercise is also very important—taking walks,etc. You might look into resources in your community—someone who can help with rides to chemo, grocery shopping, etc. Do you have children? Neighbors? Friends? Enlist their help so you’ll be able to get out of the house occasionally. You’ll want to do everything yourself, but it’s not a good idea. YOU have to stay healthy so you can help him. And keep in touch with us! We care

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1 reply
jeanne5009 | @jeanne5009 | Jan 11, 2020
In reply to @becsbuddy "Good morning @susan2018 . This year sounds like it has been hard for both of you...." + (show)
@becsbuddy

Good morning @susan2018 . This year sounds like it has been hard for both of you. This month would be a good time to rest and get your strength back up (both of you). It would also be good to look into diet and exercise in case your husband needs chemo. See if you can get an appointment with a dietician at the local hospital. Exercise is also very important—taking walks,etc. You might look into resources in your community—someone who can help with rides to chemo, grocery shopping, etc. Do you have children? Neighbors? Friends? Enlist their help so you’ll be able to get out of the house occasionally. You’ll want to do everything yourself, but it’s not a good idea. YOU have to stay healthy so you can help him. And keep in touch with us! We care

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@becsbuddy susan2018

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jeanne5009 | @jeanne5009 | Jan 11, 2020

Guess I need to get in on this. Im on the liver transplant section of Connect... as I am Stage 4 but not yet listed. Meanwhile..my caregiver/friend had his gall bladder removed last year and it has been a nightmare since. They now want him to have the Whipple procedure for a cyst in the head of the pancreas that could be cancer. He is having the CA 19 9 tumor marker test on Mon. When should he get a second opinion and how long will it take if the surgery is needed in a hurry? Dr. is well respected and does 145 year. Mayo Jax is where I would go but not sure how soon they would see him.
Ugh! Never a dull moment...he is scared and has no family. He depends on me as a sister and medical advocate..I am becoming medically very well educated..not by choice.
I will keep you all posted..best i can.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 12, 2020
In reply to @jeanne5009 "Guess I need to get in on this. Im on the liver transplant section of Connect......" + (show)
@jeanne5009

Guess I need to get in on this. Im on the liver transplant section of Connect... as I am Stage 4 but not yet listed. Meanwhile..my caregiver/friend had his gall bladder removed last year and it has been a nightmare since. They now want him to have the Whipple procedure for a cyst in the head of the pancreas that could be cancer. He is having the CA 19 9 tumor marker test on Mon. When should he get a second opinion and how long will it take if the surgery is needed in a hurry? Dr. is well respected and does 145 year. Mayo Jax is where I would go but not sure how soon they would see him.
Ugh! Never a dull moment...he is scared and has no family. He depends on me as a sister and medical advocate..I am becoming medically very well educated..not by choice.
I will keep you all posted..best i can.

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That is a lot on your plate, @jeanne5009. You will likely have more information on Monday to help decide if and when it is time for a second opinion. Here's the contact info if you're considering Mayo Clinic http://mayocl.in/1mtmR63
Do you have a long way to travel to Mayo JAX?

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jeanne5009 | @jeanne5009 | Jan 13, 2020

@colleenyoung
It is a 5 hr trip but well worth it. I call it Disneyland for sick people. They watch me and I go up every 6 mo. for testing. So far, I am holding up with minimal deterioration. Hoping that we can get Gary up for evaluation and a good outcome. In my opinion there is nowhere else. Thanks for the link. I am used to a full plate but need the support of this group to keep me sane!

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