1. < Pancreatic Cancer

Pancreatic cancer relapse

Posted by lilliejane2 @lilliejane2, Jul 18, 2023

Hello. I was told by oncologist that he believes the pancreatic cancer has come back after 18 months cancer free. Still waiting on biopsies of lymph nodes near what was described as possible mass near original
Cancer site. Has anyone experienced a pancreatic cancer relapse and survived long term?

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

davisworld1 | @davisworld1 | Jul 22, 2023
In reply to @markymarkfl "I'm not sure what the record is, but after 3.5 months of post-Whipple "NED" (No Evidence..." + (show)
@markymarkfl

I'm not sure what the record is, but after 3.5 months of post-Whipple "NED" (No Evidence of Disease), I had a recurrence at the original surgical site. I am still going strong 9 months after the diagnosis, with no ill effects from the cancer and only mild side effects (fatigue, neuropathy, mild nausea) from 6 months of chemo.

It's not exactly "long-term" yet, but I'm fairly stable and hopeful on the current treatment.

In your case, I hope the doctors are looking at more than just biopsy results.

In my case, the intraoperative pathology during Whipple reported margins were clean when apparently they were not. Then, 3.5 months later, after spotting a suspicious lesion on MRI at the original surgical site, post-Whipple anatomy made it difficult for a biopsy done as part of an EUS to obtain tissue, and as a result, I got a false negative which delayed treatment.

If your docs have actual lymph node tissue and proper time to examine it, you should get a very accurate read, but still the pathology is not perfect. I hope they are also able to test your blood for circulating tumor DNA with a test like Signatera to check for MRD (Minimal Residual Disease) which may yield a "microscopic" positive that indicates malignancy even if it's not found in biopsied tissue or seen on scans. If that is the case, you might want to begin treatment ASAP, probably with a systemic chemotherapy, but perhaps total surgical removal of everything if you find a reputable surgeon who thinks it's all resectable.

Another forum member here ( @stageivsurvivor ) had surgery almost immediately after diagnosis, and then mets were found shortly after surgery. He is now approaching 11 years since that time, and may have more insights to share. I'm just a newbie here. 🙂

Wishing you the best!

--mm

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My journey is a little different. I was diagnosed in September. Had chemotherapy and an unsuccessful whipple in Feb. I decided on high dose radiation and after five weeks of radiation two months later my scans showed no spread and all cancer markers normal. I don’t hear many people talking about radiation. It took much research and four different opinions to decide on my course of action. I would be willing to share if anyone is interested. Best of luck on the journey ahead.

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2 replies
ncteacher | @ncteacher | Jul 22, 2023
In reply to @davisworld1 "My journey is a little different. I was diagnosed in September. Had chemotherapy and an unsuccessful..." + (show)
@davisworld1

My journey is a little different. I was diagnosed in September. Had chemotherapy and an unsuccessful whipple in Feb. I decided on high dose radiation and after five weeks of radiation two months later my scans showed no spread and all cancer markers normal. I don’t hear many people talking about radiation. It took much research and four different opinions to decide on my course of action. I would be willing to share if anyone is interested. Best of luck on the journey ahead.

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Your mention of radiation supports my earlier post (somewhere on the board--here? I don't remember) that treatment options seem to vary so widely depending on which MD you see. I don't qualify for surgery and am stage 4 based on a visual check during laparoscopy. I've never been offered radiation therapy. What stage were you when you were diagnosed? It may be that radiation is reserved for patients whose cancer is limited to one site and hasn't metastasized.

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3 replies
davisworld1 | @davisworld1 | Jul 22, 2023
In reply to @ncteacher "Your mention of radiation supports my earlier post (somewhere on the board--here? I don't remember) that..." + (show)
@ncteacher

Your mention of radiation supports my earlier post (somewhere on the board--here? I don't remember) that treatment options seem to vary so widely depending on which MD you see. I don't qualify for surgery and am stage 4 based on a visual check during laparoscopy. I've never been offered radiation therapy. What stage were you when you were diagnosed? It may be that radiation is reserved for patients whose cancer is limited to one site and hasn't metastasized.

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I was stage 3 but it was localized and had not spread. I don’t know the answer to your question but I would ask your oncologist. Good luck.

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gamaryanne | @gamaryanne | Jul 23, 2023

RE: radiation…radiation is possible when cancer has metastasized but it may depend on how it spreads. My metastases were in my liver. They were in various places so targeted radiation would not work. However, with Fulfurinox the lesions shrunk
together making it possible for precision radiation. All appeared necrotic afterwards on scans. Thus the ability for liver surgery.

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jlh1952 | @jlh1952 | Jul 23, 2023
In reply to @davisworld1 "My journey is a little different. I was diagnosed in September. Had chemotherapy and an unsuccessful..." + (show)
@davisworld1

My journey is a little different. I was diagnosed in September. Had chemotherapy and an unsuccessful whipple in Feb. I decided on high dose radiation and after five weeks of radiation two months later my scans showed no spread and all cancer markers normal. I don’t hear many people talking about radiation. It took much research and four different opinions to decide on my course of action. I would be willing to share if anyone is interested. Best of luck on the journey ahead.

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My husband was diagnosed with PC 2 weeks ago. We are exploring which cancer center / Oncologist to go with. Both local surgeons he has seen recommend neoadjuvant Chemo and then Whipple, provided his mass in the head of the pancreas has shrunk as it is abutting the SVA. Neither thought Radiation therapy would be indicated.
However, a friend had almost identical presentation to my husband's 3 1/2 years ago. He went to Mayo and the Oncologist/Surgeon there recommended up front Chemo Fulforinox regimen followed by a 5 week (5 days a week) targeted Radiation therapy (part of a study) before the Whipple. Our friend had the Chemo locally managed by a very good cancer center here, then went to Mayo for the targeted Radiation and Whipple at Mayo. He is doing fine now. I have contacted Mayo and hope to hear back next week which is when we meet with 2 local Oncologists with different cancer centers.

This feels like a mine field. Thanks for listening.

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2 replies
lilliejane2 | @lilliejane2 | Jul 23, 2023

Hello jlh1952!
Going through all of this definitely does feel like a mine field, trying to find a place where you and your husband and family are safe. I have found that meditation and visualization are very helpful in finding a place of calm while you are navigating through all of this. It seems to help me to feel that I will be able to overcome some really tough things. Tomorrow I go to have biopsies of 2 lymph nodes that have
Appeared close to my original pancreatic cancer from 18 mo ths ago. I'm visualizing that the lymph nodes will be negative.
I'm not sure if this is helpful, but I feel for you at this time, and know
That everything will be ok.

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1 reply
gardenlady1116 | @gardenlady1116 | Jul 23, 2023
In reply to @jlh1952 "My husband was diagnosed with PC 2 weeks ago. We are exploring which cancer center /..." + (show)
@jlh1952

My husband was diagnosed with PC 2 weeks ago. We are exploring which cancer center / Oncologist to go with. Both local surgeons he has seen recommend neoadjuvant Chemo and then Whipple, provided his mass in the head of the pancreas has shrunk as it is abutting the SVA. Neither thought Radiation therapy would be indicated.
However, a friend had almost identical presentation to my husband's 3 1/2 years ago. He went to Mayo and the Oncologist/Surgeon there recommended up front Chemo Fulforinox regimen followed by a 5 week (5 days a week) targeted Radiation therapy (part of a study) before the Whipple. Our friend had the Chemo locally managed by a very good cancer center here, then went to Mayo for the targeted Radiation and Whipple at Mayo. He is doing fine now. I have contacted Mayo and hope to hear back next week which is when we meet with 2 local Oncologists with different cancer centers.

This feels like a mine field. Thanks for listening.

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Sounds like you are on the right track. Working with an oncologist who is open to direction from Mayo is helpful. My oncologist has been OK with taking direction from my doctor at MSKCC. My local oncologist's office has been easy to work with and is only 10 minutes from home. I couldn't manage an hour ride to the closest MSKCC Facility (I am 2 hours from the main hospital). I also have someone to call on if I need emergency care in the community.. Hope your treatment goes well.

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mayoconnectuser1 | @mayoconnectuser1 | Jul 23, 2023

jih,

I believe neoadjuvant is chemo CHT) prior to Whipple, but in many cases CRT is added prior to surgery.

If you can quickly get accepted by Mayo, or Anderson, or MLK, please consider moving to that location and doing chemo on site.

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markymarkfl | @markymarkfl | Jul 24, 2023

Radiation depends on a lot of things. In my case, the recurrence and the first met discovered were in locations where radiation would damage organs. After more mets, they basically concluded that radiating just a few (where it wouldn't damage organs) was of no real value.

There may also be an issue of technology at certain locations. The newer Proton Beam machines can deliver more "focused" radiation with less damage to tissue around the target. Not all centers have this technology, and sometimes it might not be offered to you if the center can't do it. I don't know if it's rare or common for one center to refer patients to a "competing" center when that's in the patient's best interest.

As far as studies go, you have to read a lot of fine print for those comparing chemo alone to chemo plus radiation to see which is better for a specific case (set of conditions). It's hard to make a valid apples-to-apples comparison, but I guess you could always ask your oncologist(s) why they are recommending one treatment vs another. It's nice to know what studies they're basing decisions on, and if those studies are recent enough and relevant enough.

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lvtexas | @lvtexas | Jul 24, 2023
In reply to @jlh1952 "My husband was diagnosed with PC 2 weeks ago. We are exploring which cancer center /..." + (show)
@jlh1952

My husband was diagnosed with PC 2 weeks ago. We are exploring which cancer center / Oncologist to go with. Both local surgeons he has seen recommend neoadjuvant Chemo and then Whipple, provided his mass in the head of the pancreas has shrunk as it is abutting the SVA. Neither thought Radiation therapy would be indicated.
However, a friend had almost identical presentation to my husband's 3 1/2 years ago. He went to Mayo and the Oncologist/Surgeon there recommended up front Chemo Fulforinox regimen followed by a 5 week (5 days a week) targeted Radiation therapy (part of a study) before the Whipple. Our friend had the Chemo locally managed by a very good cancer center here, then went to Mayo for the targeted Radiation and Whipple at Mayo. He is doing fine now. I have contacted Mayo and hope to hear back next week which is when we meet with 2 local Oncologists with different cancer centers.

This feels like a mine field. Thanks for listening.

Jump to this post

Chemo locally and radiation/surgery at major center is a good plan. Major center directs chemo to local team. I’ve done this chemo/then surgery.

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