Pancreatic cancer recurrence: Anyone else?

How long did you have to take chemo on your reoccurrence?

Continued prayers for you and your family. Keep fighting the fight.

Dear sadiegrace,
I love the tone of humility and grace in your response! You are very inspirational! I didn't have as much as a reprieve as you from pancreatic cancer; only 4.5 months. However, my dad who had it over 24 years ago was misdiagnosed (food poisoning!) and by the time he was properly diagnosed it was too late to do any treatment because it was literally in every organ of his body and lived for only 4 more months. He came to live us during his time of hospice (they are the most empathetic and kind group here) and they made life easier for all of us. Even though I only had 4.5 months of "cancer free", though it really never was the case as the scar tissue around my hepatic and celiac arteries that the radiologists and hence my drs called scar tissue, was actually soft tissue cancer that apparently appeared in the extra month of recovery due to complications from my surgery before I could begin my chemo; during that those 4.5 months I was elected to the Bolsa Chica Land Trust Board, and started my own little environmental consulting business where I worked part-time, and obtained a few state certifications related to water quality. I'm very thankful for those 4.5 months when I lived my life to the fullest in light of seeing my dad's withering state several years ago. I have a very aggressive cancer and am getting chemo again, but based on the genetics of my tumor, I don't have a lot of hope unless I can get into clinical trials and it works. My biggest concern is similar to yours, dotting i's and crossing t's so that my kids don't have to do much when that time comes and to make the transition as easy for them as possible and to get tested genetically. God bless you and you have my sincere admiration and prayers!

Hello @waltsocal and welcome to Mayo Connect. I really can't answer your question about the type of scan that is best, however, I would highly recommend that you consult with a Pancreatic Cancer Center of Excellence. At a facility such as this, you will get the best care.

Here is a link from the American Cancer Society website where you will find some good information about follow up and care,
https://www.cancer.org/cancer/types/pancreatic-cancer/after-treatment/follow-up.html#:
I would also encourage you to post this question to another Pancreatic Cancer support group on Connect. Here is the link,

--Introduce Yourself and Connect with Others
https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/
I'm also going to invite other members of this support group to share their experiences with pancreatic cancer, including @markymarkfl @spicerpa @sofee2022 @gardenlady1116.

I look forward to hearing from you again. As you are comfortable doing so, please share as to how are you feeling since your Whipple procedure. Has your appetite and eating changed much? Have you gained or lost weight?

Morning, I'm relatively new to this site. It has been very helpful.

I had the Whipple procedure in June of 2023 - (9 out of 22 lymph nodes infected - 15% chance of surviving). I'm in the "waiting stage" until Feb 9th to see if there is a recurrence. I read the info on the CT, MRI and EUS. My oncologist seems to go with CT only. What are your thoughts on PET scan. It sounds like that is what they should be doing; along with the CA19 test.

I can tell that you are a wonderful, caring person. Peace be with you and I’m holding you in a special place as I pray.

Yes, I am still in hospice because the return of my cancer was considered to be untreatable. I did not want anymore surgery or chemo and I think they thought the cancer would move quickly. Now, 8 months later I’m still being looked at as an outlier because my original cancer and surgery will be 8 years ago in May and they didn’t think they got good margins then. I too, would rather have quality of life and so far my prayers have been answered. I am sorry to hear you recently lost your Mom and your sister. My sincere condolences. I like Hospice, and I do think their care when I had COVID helped me to recover. Only you know when you have peace that enough is enough. I am truly at peace and have no fear, and I will pray that for you too, Ellen.

What a positive outlook! Are you in Hospice Care now? Frankly, I think they can extend life with their loving care. After recent pancreatic metastasis to my lungs I am now stage 4. I’m putting lots of thought into when enough is enough. I’m looking at quality rather than longevity of life. Hospice improved my Mom’s and my sister’s life— both died in this past year.

@sadiegrace

So good to hear from you! I am sorry to hear that you contracted the Delta virus but so glad you have recovered and are still enjoying life. Your journey with pancreatic cancer is truly amazing. You are a testament to your faith which in turn gives you a positive frame of mind.

I hope you are enjoying your new residence with your son. Please post again after seeing your PCP, I enjoy hearing from you.

It’s been a while since I’ve posted and I thought I’d update you as to how I’m doing.
In September I sold my house and moved in with my son and in October I contracted the Delta virus. That was touch and go, but once again, I survived and feel great now.
It’s been 8 months since my diagnosis and much to my surprise, I was here for Christmas.
God is good and always in control. So far I have had no symptoms of the cancer’s progression. In hospice they treat symptoms and do not do labs or CTs, so now I think I need to look into where I am cancer wise. My oncologist, back in May told me she thought the cancer was back for 6-8 months, so it’s been over a year, and I feel fine. I’m going back to my primary doctor and hope she’ll do an assessment on where I’m at. In the meantime I am enjoying my life, family and friends, and I live my life each day with no fear or anxiety about what the future holds, and I give all the glory to God. 🤗