I have had six months of chemo and my tumor is dead, they want to do three more chemo treatments and 3 weeks of radiation then surgery. Has anyone left a dead tumor in?
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"How do they know it's dead?" 😉
That would be my first question. My second question (also a serious one) is what chemo have you been on that's so good they will claim it's dead before they remove it?
I don't mean to be snarky with either question. There's an old saying that "Absence of Evidence is not Evidence of Absence" and when doctors refer to NED (No Evidence of Disease) it doesn't mean you have no disease, it just means there is no evidence you still have disease.
I don't know anyone who has ever left a dead tumor in, but it if there's even one living cell remaining, it could multiply and spread later, so my personal decision would be to remove all possible as soon as practical, unless the surgery is major enough to leave you worse of that you might be without it. (e.g., lifetime digestive issues and diabetic, dependent on insulin and enzymes).
Other supporting evidence that would *suggest* a tumor is dead would be CA19-9 (assuming there was evidence it was high before treatment, the high was caused by a cancer validated by biopsy as malignant pancreatic, and that it's now normal with evidence it's not suppressed by other factors like biotin), combined with genetic tests like Guardant or Galleri, along with disappearance from imaging.
They could (maybe) do something less invasive than major (Whipple?) surgery, like perhaps another EUS/ERCP biopsy to check for malignant cells, but in my case, even that failed to confirm a recurring tumor.
Of course, a more major surgery to remove the entire thing would give them more tissue to analyze, which is (I think) the only way to definitively say it's dead (and also gone as far from your body as it could possibly be).
One other advantage to getting some/all of it out (via biopsy or major surgery) is that they can craft a customized test (like Signatera) based on the removed tissue's DNA, and then do repeat blood testing later to look for exactly that DNA in your bloodstream. That would theoretically provide the earliest possible detection of any microscopic level cancer they may have missed.
I hope you've been or will be a thorough enough self-advocate to consider these scenarios and questions, but I send you my best wishes and massive congratulations on what sounds like a very successful treatment and positive outlook so far!
Are they referring to your tumors as being necrotic? All but one of mine were. Multiple radiologists and surgeons reviewed my scans and said the same thing.
Be grateful and thankful! And don’t leave that thing in!! Only takes one cell to “act up” somewhere else!!
So I had the same question a few months ago. After 6 months chemo, my CA19 was back to normal and there was no uptake/activity on PET. I still continued on with radiation and surgery, as was recommended. My pathology report from surgery confirmed no active tumor, a complete pathological response. Which is great. I had my pancreas, gallbladder, and spleen removed, as well as vascular reconstruction in July. Yes, I am now an insulin dependent diabetic and have to take digestive enzymes. But knowing there is no tumor inside me, dead or not, has brought me so much peace. I would listen to the advice of your oncologist and surgeon.
Congrats @ashley2235 , that is awesome!!!!!
At the risk of being too nosey, could you possibly share:
What type of tumor you had, your stage at diagnosis, where exactly the tumor was, if you had any known genetic mutations, what the chemo regimen was, and what type of radiation?
I'm really interested in what combinations produce a great response like that.
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Of course. I had stage III locally advanced non-resectable adenocarcinoma with squamous cell differentiation. Located between body and tail of pancreas, with over 180 degree attachment to SMA. No genetic mutations. Started with 2 rounds of FOLFIRINOX. Tolerated well, but had drastic increase in CA19, so switched to Gemzar/Abraxane for my last 4 cycles. I did 28 days of LINAC radiation. My local surgical oncologist still would not agree to surgery, so I reached out to Dr Truty at Mayo, as he is the best at locally advanced tumors with vascular involvement. He performed my surgery on July 24th.
Woohoo! Congrats again, and thank you so much for sharing.
I'm surprised they switched the chemo regimen so soon, given that a short-term rise in CA19-9 sometimes suggests a tumor is responding as desired. But I've also had a much better response to Gemzar/Abraxane/Cisplatin since my recurrence than I had to 6 months of Folfirinox before surgery. I do hope the oncology world will find better ways to gauge the effectiveness of a treatment sooner and switch it up if appropriate.
Yes, I was hesitant to switch so quickly, as I had read CA19 can increase the first few rounds of effective chemo. My oncologist put in a stat CT, which showed tumor growth as well. That helped ease my mind on switching. I'm finding a lot of patients see very good results with gem/abrax vs folfirinox. I'm very glad my oncologist was quick to make the change.
A year and half ago I had 8 rounds fulfirinox and three weeks of the higher intensity radiation. My tumor was dead. He removed part of my pancreas ( tumor was on the head) I am not diabetic no insulin. I thought about this too. Should I leave it in? But worried about the possibility sometime would he left. My scans are showing NSD. I was never given a choice though about the surgery. He basically said if I go in and it can’t be removed then I can’t help you. He went in and it was dead. He came out to tell my husband it was dead he perked it off and was very very excited.
@ashley2235 : If you have time to reply, I'd be grateful to know which types of sources you read to acquire info about this disease and its tx. (For ex., you noted that you'd read about the possibility of a CA19-9 increase at the start of Folfirinox.)
I'm a little embarrassed to be so ignorant about my own disease, but I have no idea how to acquire a useful overview that isn't oversimplified (I'm not a medical professional but I'm reasonably well-educated) and that could help guide me down other avenues as needed.
I've learned some useful info from reading threads on this board, but even so I feel as though I lack an overview and a lot of connective tissue. Thank you, and best wishes.
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