Pancreatic cancer recurrence: Anyone else?

Posted by sadiegrace @sadiegrace, Apr 29, 2021

Hi, my name is Trish, I had pancreatic cancer 7 years ago. This reoccurrence was a surprise since I had a CT on March 9th, with no sign of anything to a .5mm stricture of small intestine caused by a mass that is malignant. Just had a stent put in to on Monday to open the intestine and I am feeling much better. Will see my oncologist on May 6th, and maybe find out what stage it is. Because I haven’t eaten very well for the past few weeks and have lost almost 20 lbs, it’s left me feeling weak and tired.

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

@sadiegrace

Hi, I’m sorry it’s been so long, but I was super busy. I decided to sell my home and move in with my son. The house sold the first day after 19 offers, all over asking price, so that was a blessing. The buyer paid cash but allowed us the time we needed to move and I in turn was able to bless him and his family by leaving furniture and household goods, including a riding lawn mower. He was coming from South Korea and all they brought was their clothes. I later found out he was a Christian pastor and just like me, God was taking him in a different direction.
I moved in with my son on September 1st and got settled into my new home with him and my 16 yr old cat.
Everything was going well at first, but last Sunday I started running a temperature with no other symptoms. And have run a temp in the evening for the past week. I take 2 Tylenol at bedtime and temp is normal the next morning and stays that way all day until the next evening. Since there are no other symptoms and no pain, hospice has just asked me to keep track of it and I’ll know more next week. The fevers are annoying and range from 99.9 to 102. So it’s been hard to eat since the temps kill my appetite. But I’m still able to get out and do errands, go to church and meet friend for lunch. So life is still good.
I’ve accomplished most everything I wanted to get done and I know a lot of people do not have that chance.
I realize each extra day is a gift and I am making the most of them.
God has not only met my needs, but my desires also. He is so good! ❤️🙏🤗

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I know it's been a while since you posted this but just want to say that during radiation back in June/July this year I was spiking fevers like yours. Went to the ER several times and they ran tests for blood infections etc. but couldn't find a cause. Finally the last time my fever spiked it was pretty high and I guess a light bulb went off in the surgeon's mind. They gave me a CT and discovered that my stent had formed a gallstone behind it and was no longer functioning. One ERCP and a new stent later and the fevers are gone.

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I was wondering if an onocologist could tell if a tumor had not shrunk by a blood test. He had written on one of his comments that ca199 was decreasing but there was no significant change in tumor and my husband has not had another scan yet so i was wondering why he might have written that.

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@mcendroski

I was wondering if an onocologist could tell if a tumor had not shrunk by a blood test. He had written on one of his comments that ca199 was decreasing but there was no significant change in tumor and my husband has not had another scan yet so i was wondering why he might have written that.

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Hello @mcendroski

That is a good question. I'm not sure anyone on Connect can decide how your doctor formed that opinion. You might want to send your doctor a message through the patient portal and ask that question.

In the past, has the doctor felt the tumor by pressing on it with his hands?

How is your husband feeling now?

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@hopeful33250

So good to hear from you again @sadiegrace and hear that you are still holding your own and content with this part of your journey. You still are a great encouragement to me personally and spiritually. I really appreciate your posts!

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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. 🤗

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@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.

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@sadiegrace

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. 🤗

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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.

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@ellengalloup

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.

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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.

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@sadiegrace

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.

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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.

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@hopeful33250

Hello @rexsan20

That is a good question. I'm not a medical professional, so I can't determine the correct answer to your question as to which is the best test for the pancreas. I did find some information, however, on the National Institute of Health's website, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6284179/

As you read this publication, you will see Table 1. It does comparative values for three different tests, CT, MRI as well as EUS. It appears from the Table that MRI is slightly better than a CT scan and that EUS is better than both. Here is a link from Mayo Clinic's website that describes the EUS, https://www.mayoclinic.org/tests-procedures/endoscopic-ultrasound/about/pac-20385171

Have you had the EUS?

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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.

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@waltsocal

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.

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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?

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