Pancreatic Cancer Group: Introduce yourself and connect with others

Thanks for this! I share your mind set on fighting. I have always been an ask for forgiveness rather than permission in my job.
The not knowing has been hard since I first learned about the test. At first, they couldn’t even get me in until August. Now it is up to June 5. My mayo GI doc listened to me about using the blessing about catching this years earlier than they normally would have, so have moved up a few times as cancellations have happened.

@bradthompson88
I second Marie’s thoughtful words. Dr Google gives us a 13% chance to make it to 5 years but guess what? THAT is a lot of people!
I was Dx 11/2021 stage 4. Much like you, never smoked, healthy, and very few symptoms. It was luck that it was caught. No-it was an angel!! We have more options now to extend our lives and possibly be termed “cured”.
It is a journey. I am currently on chemo which seems to be once again stabilizing things. My best advice to you is that once you have all the data of your specific situation-scans, possible mutations, co-morbitities; get a second opinion. Become acquainted with other doctors in this field at centers of excellence. Some doctors are more connected with recent changes in therapies than others. Most of all, lean on your faith that God, our healer, will guide you with wisdom and sustain your family with strength and optimism. You can be optimistic. I still work and serve others in whatever means I can. These next few weeks will be difficult. Face it and fight!

There is so much I do not know. Cancer has not been in my family history at all. I have no risk factors as I dont drink or smoke and had my gall bladder removed. It was hard enough when they thought I had chronic pancreatitis compared to acute. Now, having to tell my mother this when she has lost 2 husbands to it, is a lot to take in. We just witnessed my youngest son’s wedding on Friday and there was so much joy. Telling them in a few days will be hard. I haven’t even thought much about fighting it yet. I am not mad or sad. I cry when I think about the pain this will cause for my wife. But, I feel peace. I will post more once I learn what I am up against on June 5.

That is an inspiring story. I am still finding out how much I don’t know. I will know much more after Thursday. Thank you for sharing this!

Welcome to the PanCan club - the club nobody really wants to belong. A lot of strides have been made in extensions of life with pancreatic cancer. Any cure is dependent on the type of cancer you have, and your mutations. Please find out as much information as you can, but being from Mayo your dr will be forthright about your treatment plan. I’ve had distal pancreatic cancer since 2022, when I was 65 years old. 1 lymph node had cancer. Not all times are easy, but if you are a fighter and have a good attitude (and faith) you’ll hopefully be able to work as much as possible and carry on. My chemo treatments work and then stop working and in my case it metastasized to my liver which we treated with MRIdean radiation. Completely understandable that you want to know as much as possible about your diagnosis, and you’ve come to right place, but it’s a little premature to give too much feedback since much is dependent on the type of cancer and mutations you have. Everyone here has your back, so please be sure to post when you get the specifics, but really you are in good hands with Mayo!

Hello. My name is Brad and I am a 55 year old band and CTE teacher. I was diagnosed with adenocarcinoma on May 27. I should say I read my test results. I am waiting to meet with an oncologist on June 5.

I started with pancreatitis in mid March and had several attacks during that time. I don’t drink or smoke so the doctors here at Mayo looked deeper when they did the endoscope procedure that uses the needle. They found a mass along with a cyst at the neck of my pancreas. According to Dr. Mills, this is something they would not have found for a long while as it didn’t shop up on CT cleans.
I have used Dr. Google in absence of having had my first consultation and the long term prospects are not as good as I wish they were.

Currently I have NO symptoms. No pain, can eat anything I want, am holding my weight(after losing 21 pounds this spring).

I came to this forum to hopefully get some inspiration that some can be cured if this is caught early. I go in for a chest CT tomorrow morning so they can verify that the cancer started in my pancreas. My hope is they caught it super early, but I have been hoping for many things this spring and very few have worked out with this issue.

My friend Elise Tedeschi who I met through my volunteer work with the Seena Magowitz Pancreatic Cancer Advocacy Foundation had NanoKnife procedure performed just short of 13 years ago. Below is a link to her story:
https://seenamagowitzfoundation.org/warrior/elise-roth-tedeschi-pancreatic-cancer-patient-story/

Hi @lulu789 , the Nanoknife procedure is also known as Irreversible Electroporation (IRE).

There has been some other discussion of it in older threads (searchable) on this site, but I haven't yet heard of any personal experience with it, so please keep us posted. Anything you learn will be useful and appreciated. Good luck!

Some search results here:
https://connect.mayoclinic.org/group/pancreatic-cancer/?search=electroporation#discussion-listview

HI, I am Bette Davis.. I was diagnosed with pancreatic cancer at the end of March. I will be getting my third chemo treatment next week. This morning I read about a procedure called NANOKNIFE which is described as a minimally invasive procedure where electrical pulses destroy cancer cells. It is used when the tumor is wrapped around important blood supplies or ducts, etc. That describes my tumor and I am interested in learning if that procedure is done at Mayo Clinic in Rochester. I am going for an evaluation. They are reviewing all my scans and information now and I am waiting for a call to schedule first available appointment.

Thanks for the suggestion. I mentioned that yesterday to my oncologist, who wasn't really familiar with histotripsy but said it sounded similar to RFA which I had during surgery.

The major decision of the meeting was to get me started on Cabozantinib, which they are ordering. I heard it can be a hard drug to take for some patients, and that getting the dose right may take time.