Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young @colleenyoung, Dec 3, 2019

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

@drewgrebe

How are you doing. Have you started chemo. My fiancée sounds exactly what you had. It was in the tail. He had surgery removed part of pancreas now is doing chemo. Just curious if you started chemo yet.

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It will be three weeks tomorrow since I had surgery, part of my pancreas and my spleen. it's a slow road but i am doing well. Once I heal I'll be doing some chemo. I'll be seeing the oncologist soon to set up the chemo.

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@marvinjsturing

We recently moved and I had to find new doctors. My new oncologist ordered a PET scan for me. Two doctors reviewed the results of my PET scan. The first one said the results were inconclusive. The second doctor said that there may be some evidence that my cancer has come back. I asked Mayo to review the reports. After looking over everything, Mayo scheduled me for a PET/MRI scan at the end of February. There has been no evidence of cancer for the past 5 1/2 years, so I am hoping that it was just a fluke with the scan. If the cancer has come back, I will not be able to proceed with a kidney transplant until the cancer has been addressed.

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I am sitting here at Gonda 10 South at Mayo in Rochester. Had a PET/MRI done yesterday. This morning I was told that the test shows that after about 6 years my pancreatic cancer has come back. Waiting to meet with a surgeon to see what the next steps are. This puts any hopes for a kidney transplant on hold.

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@marvinjsturing

I am sitting here at Gonda 10 South at Mayo in Rochester. Had a PET/MRI done yesterday. This morning I was told that the test shows that after about 6 years my pancreatic cancer has come back. Waiting to meet with a surgeon to see what the next steps are. This puts any hopes for a kidney transplant on hold.

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@marvinjsturing

You must be disappointed, Marvin. I hope you get encouraging news from the surgeon.

I've been thinking about you today and I'm glad that you posted an update. I'm continuing to pray for you.

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@marvinjsturing

I am sitting here at Gonda 10 South at Mayo in Rochester. Had a PET/MRI done yesterday. This morning I was told that the test shows that after about 6 years my pancreatic cancer has come back. Waiting to meet with a surgeon to see what the next steps are. This puts any hopes for a kidney transplant on hold.

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@marvinjsturing I can't imagine what a punch in the gut that news must be. Did you see the surgeon today?

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@colleenyoung

@marvinjsturing I can't imagine what a punch in the gut that news must be. Did you see the surgeon today?

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@colleenyoung ,We met with the pancreatic cancer surgeon yesterday. He explained that the tumor is surrounding the veins going to the stomach, the liver and the spleen. Because of this, surgery is not possible. The typical treatment in this case would radiation and an oral chemo. Because of my chronic kidney failure, I cannot have the chemo, so they are talking just radiation at this time. I have been scheduled for an endoscopic ultrasound with biopsy today. This is being done first to confirm that what they are seeing on the scan is cancer and second to determine how the radiation is to be given. They will be calling me on Monday with the results of the biopsy.

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@marvinjsturing

@colleenyoung ,We met with the pancreatic cancer surgeon yesterday. He explained that the tumor is surrounding the veins going to the stomach, the liver and the spleen. Because of this, surgery is not possible. The typical treatment in this case would radiation and an oral chemo. Because of my chronic kidney failure, I cannot have the chemo, so they are talking just radiation at this time. I have been scheduled for an endoscopic ultrasound with biopsy today. This is being done first to confirm that what they are seeing on the scan is cancer and second to determine how the radiation is to be given. They will be calling me on Monday with the results of the biopsy.

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@marvinjsturing Hello Marvin,

I hope that you get a good prognosis from the EUS today. I look forward to hearing from you again.

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Diagnosed in December 2019. Had scans and pet mri done at Mayo in Rochester. Currently undergoing folfirinox regimen back home. Will return to Mayo in April to get scanned. Dr. Truly seemed to think I was a good candidate for the Whipple. Nothing had metastasized so far.

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@marvinjsturing

I am sitting here at Gonda 10 South at Mayo in Rochester. Had a PET/MRI done yesterday. This morning I was told that the test shows that after about 6 years my pancreatic cancer has come back. Waiting to meet with a surgeon to see what the next steps are. This puts any hopes for a kidney transplant on hold.

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Results from the biopsy have come in. My pancreatic cancer has come back. Now I need to meet wit a radiologist to set up a treatment plan.

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Hi. My father was diagnosed with Stage III pancreatic cancer at the end of January. He was told by local doctors that his tumor is inoperable because it is around a major artery. He has been recommended to start chemo to see if tumor will shrink. He currently lives in Charlotte,NC. I would like to get a second opinion. What are the steps I need to take to get a second opinion from Mayo. Thank you in advance for your advice.

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@mpatel23

Hi. My father was diagnosed with Stage III pancreatic cancer at the end of January. He was told by local doctors that his tumor is inoperable because it is around a major artery. He has been recommended to start chemo to see if tumor will shrink. He currently lives in Charlotte,NC. I would like to get a second opinion. What are the steps I need to take to get a second opinion from Mayo. Thank you in advance for your advice.

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@marvinjsturing, I'll be interested to hear what the radiologist has to offer.

Welcome to Mayo Clinic Connect, @alkat and @mpatel23. @alkat, you can get call Mayo Clinic to get a second opinion. Here is the contact information for all 3 locations http://mayocl.in/1mtmR63 Mayo in Jacksonville, Florida may be you most convenient location. @alkat and Marvin can tell you about their experiences with Mayo Clinic in Rochester, MN.

Alkat, I hope you are eligible for the Whipple procedure. You can find out more about it in these discussions:
– Pancreatic cancer—Whipple procedure https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
– Whipple procedure and follow up chemo https://connect.mayoclinic.org/discussion/whipple-procedure-and-follow-up-chemo/

MPatel, Marvin's tumor is also inoperable due to the wrapping of arteries. It is hard news to get. You may be interested in this discussion:
– Inoperable Pancreatic Cancer: What treatment options are there? https://connect.mayoclinic.org/discussion/pancreatic-cancer-3/

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@colleenyoung

@marvinjsturing, I'll be interested to hear what the radiologist has to offer.

Welcome to Mayo Clinic Connect, @alkat and @mpatel23. @alkat, you can get call Mayo Clinic to get a second opinion. Here is the contact information for all 3 locations http://mayocl.in/1mtmR63 Mayo in Jacksonville, Florida may be you most convenient location. @alkat and Marvin can tell you about their experiences with Mayo Clinic in Rochester, MN.

Alkat, I hope you are eligible for the Whipple procedure. You can find out more about it in these discussions:
– Pancreatic cancer—Whipple procedure https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
– Whipple procedure and follow up chemo https://connect.mayoclinic.org/discussion/whipple-procedure-and-follow-up-chemo/

MPatel, Marvin's tumor is also inoperable due to the wrapping of arteries. It is hard news to get. You may be interested in this discussion:
– Inoperable Pancreatic Cancer: What treatment options are there? https://connect.mayoclinic.org/discussion/pancreatic-cancer-3/

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@colleenyoung I also am waiting to hear what the radiologist will day. Will let you know when I find something out.

@mpatel23 Yes I was told my tumor is inoperable. The difference is that I was first diagnosed with pancreatic cancer in 2014 and had my Whipple at that time. Now 6 years later, my cancer has come back. My tumor this time is inoperable. I strongly recommend that your father get a second opinion at Mayo. Doctors there have made significant improvements in treating this cancer in the last few years. It will be well worth your time to have your father seen by the surgeons there.

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@mpatel23

Hi. My father was diagnosed with Stage III pancreatic cancer at the end of January. He was told by local doctors that his tumor is inoperable because it is around a major artery. He has been recommended to start chemo to see if tumor will shrink. He currently lives in Charlotte,NC. I would like to get a second opinion. What are the steps I need to take to get a second opinion from Mayo. Thank you in advance for your advice.

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His local doctors might be correct, but if I had accepted my local doctors similar prognosis I would not be writing this. My tumor also was wrapped (slightly less than halfway) around an artery. Sometimes, as in my case, the local surgeons say it is inoperable because they do not have the skill, training or staff to perform the operation. I searched the internet for answers and found Mayo illustrated on their web site how an "arterial resection" was sometimes performed on tumors located on arteries. I went to Jacksonville for a second opinion and was advised my tumor was in fact operable by either of two surgeons there who perform this type surgery. I received five chemo treatments of Gemzar (gemcitabine) and Abraxane prior to surgery. Upon having an MRI done a day before surgery it was discovered that the tumor had almost miraculously broken up and arterial resection was not necessary. The Whipple was performed as scheduled and I was out of the clinic hospital unit in six days. The point is , however that the surgeon was capable of and originally planned to do an arterial resection. The local Oncologists and surgeon did not inform me that there were surgeons elsewhere who do in fact have the skill and facilities to perform arterial resections in some cases. I am currently three weeks from being a two year survivor.
If at all possible, I would strongly urge that your father get a second opinion at a renowned clinic such as Mayo. It is a very simple procedure. You do not have to have a doctor referral at Mayo. You are treated like family at Mayo, not just a statistic. Sorry for the length of this post, but I cannot over-emphasize the importance of having a second opinion from a qualified specialist in something that is this life-threatening.

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