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Newly Diagnosed Pancreatic NET awaiting Distal Pancrectomy

Posted by rginvictus @rginvictus, Mar 13 6:25pm

Hello, recently diagnosed with Pancreatic NETS. Unsure of type other FNA which listed grade 1 and KI67 @ .97%. Scheduled for body and Distal surgery with spleen, next week remove four tumors @ 1x2 Cm. Cat and Pet Scan list vascular involvement and possible spread to Spleen Lymph. Otherwise PET was negative for distant spread. Doctor says prognosis is very good, no liver involvement. Doctor is skilled at high volume clinic and says may be contact with stomach, so may require partial removal there with gallbladder, adrenal gland. Doctor states plan is to resection of all tumors for curative care.
I suppose question is what to expect following surgery. Any thoughts or advice appreciated.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 3 4:49pm
In reply to @beaglebass "I have recently been diagnosed with similar findings and labs results. What do you think about..." + (show)
@beaglebass

I have recently been diagnosed with similar findings and labs results. What do you think about the program and physicians there? What facility are you at? Who is your surgeon, if you don't mind telling me. I would like a second opinion before my final decision. Best of luck with your impending surgery and positive prognosis.

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Welcome, @beaglebass. I believe your questions are specifically directed to @rginvictus. I've tagged them to make your post is seen.

Beaglebass, have you considered a second opinion at Mayo Clinic?

REPLY
rginvictus | @rginvictus | Apr 5 3:35pm
In reply to @mnewland99 "Hello rginvictus, How did the surgery go? Also, please share the facility where you are being..." + (show)
@mnewland99

Hello rginvictus,
How did the surgery go? Also, please share the facility where you are being treated. I was diagnosed with grade 2 (2.5cm tumor) in pancreas tail in September 2022. Since my dad had a very aggressive Pancan several years ago I elected to get tumor from body, tail removed; based on connectivity they have to also have to remove spleen and I had in one lymph node at pancreas without doing chemo first. I did have a lot of complications and overcame them and then started my post surgery chemo in January 2023. Advice is to walk after surgery as much as possible to get air out of lungs and abdomen. Best wishes in your journey; we are all rooting for you.

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Hello and thank you for your comments. The surgery was very difficult, some complication's. My treatment center was Virginia Mason in Seattle. My tumor were removed pancreatic neck to tail, as well as spleen. I did have difficulty resuming any diet, aspiration of lungs and infection, surgery resection blood leakage sights, and my heart rate increased substantially and was of concern for a time. I do have low grade fistula, so long term drainage bag. My surgeon has stated if this continues they will put stint in head of pancreas. Due to above they performed a angiogram to check surgery site for bleeding which resulted in foot tingling, swelling etc, which persists. My surgical incisions are seemingly healing well, and my focus is on a new digestive system that does not like food at all. Indigestion, nausea, bloating, gas etc. Dropped 14 pounds in two weeks and just spoke to dietician who states it’s too soon to conclude enzymes or insulin related, but possible. I am curious about chemo, as my team did not recommend chemo pre or postoperative, although my tumor was 6Cm on tail, 2nd tumor 1.4 Cm neck, and now tumor is upgrade from initial one to 2, 67 index 14% and Mitosis less than 2mm. 2 other smaller tumors were noted but I am unsure if they remain or were removed. 1/7 of lymph nodes were positive, and some comment in pathology about 2 lymph nodes invaded. Don't understand the pathology and barely spoken to doctor to interpret. I wish I had gotten second opinion. Maybe good surgeon in high volume but training facility felt like a factory and I a number.

Whew, and now I did read tumor board only recommended 3 months surveillance, but again I haven’t even spoken to doctor yet about anything. I do feel better most days and gradually improving. I only hope it keeps going upward. I will consider Mayo or another facility to continue care in the future.

Thanks for the update and info, and support. Cheers!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 9 3:19pm
In reply to @rginvictus "Hello and thank you for your comments. The surgery was very difficult, some complication's. My treatment..." + (show)
@rginvictus

Hello and thank you for your comments. The surgery was very difficult, some complication's. My treatment center was Virginia Mason in Seattle. My tumor were removed pancreatic neck to tail, as well as spleen. I did have difficulty resuming any diet, aspiration of lungs and infection, surgery resection blood leakage sights, and my heart rate increased substantially and was of concern for a time. I do have low grade fistula, so long term drainage bag. My surgeon has stated if this continues they will put stint in head of pancreas. Due to above they performed a angiogram to check surgery site for bleeding which resulted in foot tingling, swelling etc, which persists. My surgical incisions are seemingly healing well, and my focus is on a new digestive system that does not like food at all. Indigestion, nausea, bloating, gas etc. Dropped 14 pounds in two weeks and just spoke to dietician who states it’s too soon to conclude enzymes or insulin related, but possible. I am curious about chemo, as my team did not recommend chemo pre or postoperative, although my tumor was 6Cm on tail, 2nd tumor 1.4 Cm neck, and now tumor is upgrade from initial one to 2, 67 index 14% and Mitosis less than 2mm. 2 other smaller tumors were noted but I am unsure if they remain or were removed. 1/7 of lymph nodes were positive, and some comment in pathology about 2 lymph nodes invaded. Don't understand the pathology and barely spoken to doctor to interpret. I wish I had gotten second opinion. Maybe good surgeon in high volume but training facility felt like a factory and I a number.

Whew, and now I did read tumor board only recommended 3 months surveillance, but again I haven’t even spoken to doctor yet about anything. I do feel better most days and gradually improving. I only hope it keeps going upward. I will consider Mayo or another facility to continue care in the future.

Thanks for the update and info, and support. Cheers!

Jump to this post

I appreciate the update, @rginvictus. Sorry to hear that surgery involved unanticipated complications. I hope your healing continues. When will you meet with the cancer team to discuss the pathology and next steps?

REPLY
rginvictus | @rginvictus | Apr 10 7:45pm

Hello Colleen, and thanks for the enquiry. All in all, I am very greatfull that the cancer is removed. I do have a follow up scheduled for the 23rd, to check my drain and evaluate the fistula. Im presuming my doctor will take some time to explain some things I don't fully understand. It does feel each day is better, slowly learning about new digestive system. I am spending a considerable amount of time each day to learn more about NET’s and all things considered, it eases my mind that my circumstances, are not nearly the worst outcomes. I have increasing hope, that my NET was completely removed and so like everyone else here, I can have a healthy and long future. I did note the last tumor board record, only mentioned putting me on 3 month monitoring schedule. Smiles!

REPLY
rginvictus | @rginvictus | Apr 12 8:34pm

Hello, and a question for some of the knowledgeable folks out there. I am curious, under what circumstances treatment for regional distal PNet includes chemo therapy before and after surgical recession? My doctor has not offered chemo to me as an option and as Jolo noted his partner was given chemo treatment before to shrink the tumor, and after to treat any microscopic residuals. Is this the normal or standard for Distal Pancreatic NETs - Chemo care?

Also, after complications during my surgery I conferred with my primary care about finding a PNet Specialist and was surprised when she advised me to stay with my first Surgeon. She expressed the healthcare system is overwhelmed, and always better outcomes with continuity of care so stay with my surgeon. I do believe my surgeon is experienced and my hospital network is well versed in PNET tumors, however the hospital does seemed strained and also a high volume training hospital, yet they are not considered “Specialist”. How important is it to truly obtain treatment from a speciation versus just a high volume center? Any thoughts?

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