PET Results - Pre-potential whipple treatments

Posted by minimia @minimia, Aug 14, 2020

After 6 rounds of chemo to shrink pancreatic tumor in head of pancreas; My father in law PET scan showed a hot spot on his liver so today they dissected most of the lesion from the liver ; mass felt firm with a mucinous component; They then irrigated peritoneal cavity to get a sample; both will be sent off for analysis I guess to determine in the pancreatic cancer has spread and to determine if they could then do the whipple procedure. From what I understand they will not do the whipple surgery if the cancer has spread; Next week will be a big week of results and then understanding the next options for treatment; We were all hopeful that he could just get the surgery but then numerous obstacles keep getting the way. Hopeful but... if he can not have the surgery I think he may stop chemo for it really has been hard on him and he is getting a bit discouraged...

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@minimia, sorry for the delayed response. Somehow your message slipped by me. I'll also bring @marvinjsturing @susandc @colorafo19 @julie2018 and others into this discussion to join me in giving you and your family support for the big week of medical results and decision making this week. Waiting is the toughest part. We're here.

When will you know about whether he can have surgery or not?

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@colleenyoung

@minimia, sorry for the delayed response. Somehow your message slipped by me. I'll also bring @marvinjsturing @susandc @colorafo19 @julie2018 and others into this discussion to join me in giving you and your family support for the big week of medical results and decision making this week. Waiting is the toughest part. We're here.

When will you know about whether he can have surgery or not?

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Thank you, either today or tomorrow depending on the pathology lab and when the Dr get the results to then discuss the options; Yes, the constant change in diagnosis and waiting is the hardest part; Hopeful but realistic... It's the hardest on my mother-in-law

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@minimia

Thank you, either today or tomorrow depending on the pathology lab and when the Dr get the results to then discuss the options; Yes, the constant change in diagnosis and waiting is the hardest part; Hopeful but realistic... It's the hardest on my mother-in-law

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Any update, @minimia?

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Finally some good news.... Biopsy of liver "spot" and fluid in abdominal cavity showed negative for cancer so they think it has NOT metastasized; Meeting with surgeon on Tuesday to discuss next steps - Radiation has been mentioned. He has been feeling much better since he has not had a chemo treatment in many weeks... Any advice on pre- surgery steps? thanks,

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@minimia

Finally some good news.... Biopsy of liver "spot" and fluid in abdominal cavity showed negative for cancer so they think it has NOT metastasized; Meeting with surgeon on Tuesday to discuss next steps - Radiation has been mentioned. He has been feeling much better since he has not had a chemo treatment in many weeks... Any advice on pre- surgery steps? thanks,

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Good idea to ask fellow members about pre-surgery advice. @dakotarunner @marvinjsturing @dianamiracle and @chemobile can share from the patient perspective. And @susan2018 and @moo1 can offer tips as caregivers supporting someone who had pancreatic cancer surgery.

You may also be interested in this discussion:
- Whipple procedure and follow up chemo https://connect.mayoclinic.org/discussion/whipple-procedure-and-follow-up-chemo/

@minimia How did the appointment go on Tuesday with the surgeon?

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To @minimia. Had the whipple almost two years ago. Try and put on some weight before the operation. They did mine at mayo laparoscopically. Took ten hours, but was out of hospital in about 6 days. They did give me two units of blood during the operation and one a day later. Total liquid diet
For the first few days and then soft foods. Was on very strong pains meds but after two days it was only constipating me, so I did Tylenol and ibuprofen. Had a lot of shots for days following the surgery to prevent blood clots. Arms and legs - you get used to it. Right after one eats anything you will go to the bathroom and the stools will be very loose. You learn how much enzymes to take with each meal. Avoid fried or sautéed foods for a while - at least six months. Walk as much as possible after the surgery and all the time. But sleep when you need to. Hard vegetables should be cooked for six
Months as well - they are hard to digest raw. Oatmeal and foods like that are always good for any meal. See what fruits you can tolerate, but try to avoid strawberries and those fruits with small seeds
For a while. My mantra has always been if it looks and smells good I will eat it. If it does not even sound good don’t bother with it. You will get back to a new normal soon. Hopefully they can leave the tail of
The pancreas so that you don’t have to monitor your insulin.
Feel free to ask additional questions wheN the need arises. Best of luck! I will actually be up at mayo in just over two weeks for a scan.... routine

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@minimia

Finally some good news.... Biopsy of liver "spot" and fluid in abdominal cavity showed negative for cancer so they think it has NOT metastasized; Meeting with surgeon on Tuesday to discuss next steps - Radiation has been mentioned. He has been feeling much better since he has not had a chemo treatment in many weeks... Any advice on pre- surgery steps? thanks,

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@minimia I had my Whipple 6 years ago. I hear a lot of people talk about chemo and radiation before surgery. I was diagnosed early in May, 2014. A couple of weeks later I was at Mayo for a week of tests and I had my Whipple on June 5, 2014. My surgery took 8 1/2 hours. Surgery didn't bother me - I slept through the whole thing. My doctor didn't use stiches or staples. He put me back together with "super glue." The day after surgery he took the bandages of to check things out. I was waiting for him to put a new dressing on but he said it wasn't necessary. They had me on an insulin drip the first night. I was told it was supposed to promote healing. The nurse came in every hour to test my blood sugars. I remember having a very sore back. By 3:00 AM I told the nurse I had to get out of bed. She helped me up. I walked to the doorway of the room, looked down the hallway and told her I wanted to go back to bed. I was in the hospital for 7 days. I really wished I had brought a pillow with me to hold over the incision on the way home. Walk as much as possible before and after surgery.

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So.... my dads journey started with Jaundice. Leading to Bile duct cancer. He went to Indianpolis to get a stent put in, to keep his bile from closing. Great, Great news! Then, 2 weeks later, he started having stomach issues. he turned yellow again, and was bloating. He then was rushed to Indianapolis again, to find out what was wrong... The tests showed he had a tumor on the head of his pancreas, so we then underwent the whipple procedure. 8 1/2 hours later, he was out. We were told he would be there 8-10 days. He then stayed, 28 days, lost weight, could not eat, could not drink, so much pain. Hey you're cancer free, only 2 out of 32 nodes are positive. The doctor assured us, his pathology report showed no aggressive cancer, and maybe we should do chemo, to make sure it doesnt' come back. 4 weeks later, my mother and father went to Lafayette to a different onocologist, closer to home. hey, did you read the pathology report? yes, we did, cancer free. No, I'm sorry, the pathology report shows you have cancer in the stomach. What? wow... a PET scan should have been done, before we opened up your stomach, to do a Whipple procedure.... Long story short.... My father received the Whipple, and is now stage 4, the cancer has spread throughout his body, and is declining day by day. 3 months. 3 months is all it took, for him to go from normal, to not walking, cant eat, barely talk..... a healthy 67 year old man.... stage 4, pancreas, liver, lungs, kidneys, abdominal walls.....

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@cancersux16

So.... my dads journey started with Jaundice. Leading to Bile duct cancer. He went to Indianpolis to get a stent put in, to keep his bile from closing. Great, Great news! Then, 2 weeks later, he started having stomach issues. he turned yellow again, and was bloating. He then was rushed to Indianapolis again, to find out what was wrong... The tests showed he had a tumor on the head of his pancreas, so we then underwent the whipple procedure. 8 1/2 hours later, he was out. We were told he would be there 8-10 days. He then stayed, 28 days, lost weight, could not eat, could not drink, so much pain. Hey you're cancer free, only 2 out of 32 nodes are positive. The doctor assured us, his pathology report showed no aggressive cancer, and maybe we should do chemo, to make sure it doesnt' come back. 4 weeks later, my mother and father went to Lafayette to a different onocologist, closer to home. hey, did you read the pathology report? yes, we did, cancer free. No, I'm sorry, the pathology report shows you have cancer in the stomach. What? wow... a PET scan should have been done, before we opened up your stomach, to do a Whipple procedure.... Long story short.... My father received the Whipple, and is now stage 4, the cancer has spread throughout his body, and is declining day by day. 3 months. 3 months is all it took, for him to go from normal, to not walking, cant eat, barely talk..... a healthy 67 year old man.... stage 4, pancreas, liver, lungs, kidneys, abdominal walls.....

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I am so sorry. The whole journey with my husband ‘s pancreatic cancer has been a roller coaster ride. Up and down. One step forward, 2 steps back, etc. Every time we got our hopes up, they would be dashed again. He was diagnosed shortly after thanksgiving 2021. We thought he was stage 2 and he tried so hard through both chemo regimens and radiation. Then when they took him in to do the Whipple they found a tumor low in the abdomen. They said he’s stage 4 and no longer a candidate for Whipple. The molecular testing revealed no gene mutations or anything that would make immunotherapy a possibility. So back to chemo (which gave him no quality of life) or just enjoy what time he has left.

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Tell him to hang on. My wife had exactly the same issue but turned out not to be cancer that had spread.. She had whipple in 2015 and lived until this past July 9th.
7 bonus years. Did come back in 2018, back to chemo and with a great attitude lived life to the fullest that she could.
If you have to have this horrible disease, early detection, on the head and whipple is the best you can hope for.
Good luck and keep a positive attitude and have a strong FAITH

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