Nothing left to offer in the way of therapy?

Posted by ajh5285 @ajh5285, Jun 1, 2023

What did you do when you yourself or a loved one was informed by the oncologist that s/he had nothing else to offer.

Having had a repeat CT/PET scan today (1 June 2023) to check on the status of my adenocarcinoma of the pancreas (finally diagnosed in late September 2022), the preliminary results have been reported as, what I can only describe as, at best ambiguous. Some findings today were slightly improved, none remarkably improved, and some slightly worse.
I have a medical background, including training in radiology and other imaging techniques. Although it was many years ago now, I believe I retain enough knowledge to understand what I've read.
I am trying to hold my Anticipatory Anxiety at bay until after my scheduled appointment tomorrow with my very busy oncologist. I hope he will finally have enough time after the last couple of rushed appointments to have a serious discussion about what, if any, my options might be at this point.
As further background, as best as I can now recall
I had one serious GI infection as a young adult (lost 10 lbs in a week thanks to both vomiting and diarrhea; even had the worry about dying soon that is supposed to happen many times after a life-threatening illness). This may have been about 1973.
In 1984, I had Guillain-Barré syndrome following becoming involved in a dysfunctional relationship (hospitalized for one month, back to work full time after 3 months; walking normally some 11 months later; final lingering symptoms of numbness in my toes finally resolved in 2001 after starting regular deep tissue massage)
A vague recollection of being told by a GI doc not to be impatient that my gut needed time to heal; I don't remember the precipitating circumstances, but believe it was probably GI bleeding serious enough to land me in the hospital, after which I was sent home with a steroid prescription (probably prednisone) which was tapered from a high of 65 over some interval before stopping) This episode is long enough ago now that it was not moved over from paper charts to Epic when my hospital started with that system, and I am uncertain about when this happened other than it was after 1984; I believe it was stress induced.
Starting about January 2022, I had an increase in the foods I could no longer tolerate without developing diarrhea. At the time I believed it was a flare in my I B S (which had been under good control as long as I avoided known trigger foods).
Now, I wonder if it was, instead, the first sign that my pancreas was starting to develop exocrine insufficiency.
I will refrain from going further astray by speculating about the possible role of the mRNA Covid vaccine in this sorry story, since it may distract from your answers about how you handled being given what can seem like a death sentence.

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

Hi, all!
I just joined this forum, and am very thankful for the dialogue here.
Does anyone know about using SBRT (stereotactic body radiotherapy) for the primary pancreatic tumor? My father is on his last option for chemotherapy (liposomal irinotecan) He has had reduction everywhere with this regimen but the liver. Scheduled for Y-90 radiation in liver in July. I've been reading about SBRT and proton beam radiation for primary tumor, but not sure if this is actually offered anywhere yet?

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@brittbk

Hi!
Do you mind me asking who the surgeon at JH was? If not permitted, I understand.
This was my father's situation. He was scheduled for a Whipple and due to a solitary met in the liver, was no longer offered the surgery. We were all heartbroken. Instead, the surgeon did a gastric bypass and biliary bypass (so that my father could eat), and no resection. We consulted a surgeon at NYU ( who came from JH), and he said he would operate in that scenario. Unfortunately, this was after the the bypass surgeries left my father off of systemic treatment for two months, and the cancer progressed further in the liver. I am so upset to feel a surgical opportunity was there to potentially save his life. I know once considered metastatic, the standard thinking is that surgery is no longer a curative option, and that being off of systemic treatment to recover is more harmful. In this case, he had to remain off treatment to recover, regardless... so why no resection?

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brittbk,

It is sad. I believe the medical professionals understand both the current state of science - and the statistical data related to pancreatic cancer.

This gives them an understanding of when it is reasonable to resect - and when it isn't.

I'm sorry.

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@brittbk

Hi!
Do you mind me asking who the surgeon at JH was? If not permitted, I understand.
This was my father's situation. He was scheduled for a Whipple and due to a solitary met in the liver, was no longer offered the surgery. We were all heartbroken. Instead, the surgeon did a gastric bypass and biliary bypass (so that my father could eat), and no resection. We consulted a surgeon at NYU ( who came from JH), and he said he would operate in that scenario. Unfortunately, this was after the the bypass surgeries left my father off of systemic treatment for two months, and the cancer progressed further in the liver. I am so upset to feel a surgical opportunity was there to potentially save his life. I know once considered metastatic, the standard thinking is that surgery is no longer a curative option, and that being off of systemic treatment to recover is more harmful. In this case, he had to remain off treatment to recover, regardless... so why no resection?

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I am not a physician. But my experience is that there are differing opinions on resection. It can depend on co-morbidities and overall health of the patient.
I was stage IV and did have liver resection. I am now having a “blip on the radar” which may require chemo or lap surgery to get one more out.
I would definitely get a second opinion from surgeon who does this regularly. They can be found by a call to PANCAN

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@gamaryanne

I am not a physician. But my experience is that there are differing opinions on resection. It can depend on co-morbidities and overall health of the patient.
I was stage IV and did have liver resection. I am now having a “blip on the radar” which may require chemo or lap surgery to get one more out.
I would definitely get a second opinion from surgeon who does this regularly. They can be found by a call to PANCAN

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Thanks so much! Did you have Whipple?

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No, I had a pancreadectomy/spleenectomy followed by liver resection.

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