Is stage 2b pancreatic cancer a death sentence? Advice?

Posted by jrgblue @jrgblue, Nov 26, 2023

I'm 39. Super healthy--so I thought--and have been told 2b. The director of oncology is my doctor now.

I know it's a death sentence now but any advice would be greatly appreciated.

*I'm in Houston. I have had mri/ct/cat

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

2b is not a death sentence! Usually they declare 2b "resectable." If you're in Houston, ask for asap appt w/ Dr. Matthew Katz at MD Anderson and see if he'll take it out immediately and skip the neoadjuvant chemo.

A few considerations in this thread: https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/ and others with search terms like "newly diagnosed"

You may get a PET scan as well to search elsewhere for mets. Either way, you should have genetic tests done for germline mutations and somatic mutations to have a better idea what you're up against.

Any more info on where you stand like CA19-9 levels, symptoms, other tests you've had, other doctors you've seen, what you doc(s) have recommended already, if you have a chemo port already, what type of PC it is, etc?

Repeating: 2b is NOT a death sentence!

If you have certain mutations or a lot of additional cysts (or an overall "suspect" pancreas beyond the primary tumor), a surgeon might consider total pancreatectomy instead of partial (Whipple, Appleby, distal, or whatever is appropriate for your tumor).

This paper on the subject was written by some fairly competent people:
https://karger.com/dsu/article/33/4/335/117924/Is-It-Time-to-Expand-the-Role-of-Total

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Are you at MD Anderson? If not, please go there - now. Do not wait for further screening ... call them start the process, today.

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2b definitely not a death sentence!! I was diagnosed at 39 as well. In August 2022. Stage 3 locally advanced non resectable. But did well with chemo and radiaiton and was able to have surgery at Mayo this July. Currently no evidence of disease!!

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Hello jrgblue,
I know exactly how you feel about it being a death sentence. I was also a Stage 2b approximately one year ago. I didn't know much about the disease then, but what I do know now is that early detection can be the key to success, though even those with Stage4, can have success given they are treated at the right place and with innovative therapies. Excellent that you are otherwise healthy and young (I'm 66 and used to walk regularly and have an active lifestyle), you are already a step ahead of those like myself who had borderline diabetes, high blood pressure, history of interstitial lung disease, lots of allergies, and a cardiac arrhythmia induced by stress prior to surgery. I had the distal pancreatectomy (75%) with removal of the spleen. I was worried I wouldn't make it through the surgery, but I did fair well afterwards, not much pain and no diarrhea afterwards like most. I did develop fluid in the lungs and pneumonia (and then COVID), so it's important to walk around after surgery as much as possible in order to get that fluid out of your lungs and air out of your abdominal area. I also had some duct leakage which caused me to have a stent put in to stop the leaking, so make you have a surgeon with a lot of experience and from a Center of Excellence. HDAnderson in Houston, I've learned from this website is a very good facility in your area - in fact if my CA ever comes back and I'm not happy with UCLA which is local to me, then my next planned stop is HDAnderson in Houston. I received 12 sesssions of 5-FU chemo (6 mos.) following surgery, and faired well. Within a few months into chemo, during the good weeks, I got my certifications in stormwater inspections, joined the Bolsa Chica Wetlands Land Trust as a board member, and by the end of chemo I opening my small environmental consulting business which I work at on a part-time basis. It's almost 6 months for me post chemo and over 1 year post surgery. I have a new perspective on life and my relationships and an incredible appreciation for the life I have now. I don't have the same energy level I used to, although my friends just asked me yesterday if I'm ever not busy! Continue to eat right (98% of my meals are homemade and many made from scratch), and continue an exercise program. However, be vigilant about your health and make sure your dr. gives you regular CA19-9 testing and get it frequently following your surgery and chemo. Do NOT be intimidated by any doctors who think you are over-worrying if the CA19-9 takes rapid jumps and is only even a little over the upper limit of normal for that cancer marker. You are the best advocate for your health! Also, you've joined an EXCELLENT online group here with many knowledgeable people who have been in your shoes and know exactly what you are going through. Best of luck in the journey!

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@jrgblue, I'm echoing and underscoring what everyone else has written: Stage IIB is NOT a death sentence! Heck, I'm thrilled to be IIB (I thought I'd be higher).

You MUST get that notion out of your head, and one way to do so is to read about survivors (see below). As I wrote in another thread, I'm far more Eeyore than Pollyanna, but even so I am NOT going to be cowed or influenced by the current stats on life expectancy. Treatment is getting better *and* getting better faster -- presumably bc computers are far more sophisticated than they were 10+ years ago and bc scientists can share data pretty much instantly (probably other reasons, too). For ex., FOLFIRINOX, the chemo that has benefited so many with pancan, didn't exist until 2010, I think.

Don't get me wrong -- it's a rotten disease and an aggressive one, and being angry / despondent / scared is a natural reponse. That said, the sooner you can move out of that mindset -- which releases all sorts of chemicals in your bloodstream -- the better. (No, I don't think we can simply wish ourselves well -- but I *do* know that there's a proven correlation for many between, for ex., stress and diarrhea, stress and hives, and [in my case long ago] stress and inflammation that led to joint pain / swelling / mild deformity, so I urge all of us to find ways to disperse anger and fear, and to find as much contentment as we can.)

Anyway. A man, and ?former? medical researcher, known on this board as @stageivsurvivor, has written at length about his experiences; in short, he was diagnosed about 11 years ago, underwent surgery and 46 cycles of FOLFIRINOX (some modified), and is doing very well. He has also mentioned a woman who underwent 37 cycles and is in good shape, also about 11 years after diagnosis.
https://connect.mayoclinic.org/discussion/question-for-newly-diagnosed/?pg=2#comment-970218
.
Here's a link to all of stageivsurvivor's comments on this site:
https://connect.mayoclinic.org/member/00-3a8075b911bad2ae280957/activity/comments/
.
@markymarkfl is another ultra-valuable source of info; I encourage you to read his comments, too. (I'm pretty sure that he's an engineer, and my sense is that he's able to digest scientific articles, and share results with us, bc of his intellect and education.)

Some short pieces about survivors:
https://letswinpc.org/category/survivor-stories/
.
Please let us know how you are.

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Stage IIb is not a death sentence nor is stage IV….I ought to know as I was stage IV in 2012. I immersed myself in learning about my disease, treatment options, getting genetic testing done to see if there was a gene mutation driving my cancer. I advocated for more aggressive chemotherapy and stuck with it despite discomfort. I chose to do well beyond standard of care and the commitment and perseverance paid off. Most important of all, I realized pancreatic cancer patients need to go to an NCI designated Comprehensive Cancer Center of Excellence where one is likely to find a high-volume pancreas program and pancreatic cancer oncologists.

Another important step in treatment is having genetic testing performed. Genetic testing identified a gene mutation that was targetable, so after the aggressive standard of care chemo was finished (46 cycles), I entered a targeted therapy trial for maintenance monotherapy. I am coming up on 11.5 years in two weeks and have an excellent quality of life. There has been no evidence of disease (N.E.D.) for many years and many oncologists and surgical oncologists following my case consider me cured.

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I had heart surgery at age 53 and 56 to correct arrhythmias; sleep apnea surgery at 57 to fix blocked airways.

I was diagnosed w/ PDAC Stage 2 at age 58; Whipple at 59; began chemo for my Stage 4 recurrence on my 60th birthday.

Went to the skateboard park and then a concert on the way home from my 20th round of chemo last month.

Was just told by 2 oncologists 2 weeks ago that I'm doing so well on my old-fashion therapy that it would be unethical to take me off it for a trial of unknown efficacy. Not the Catch-22 I imagined I'd find myself in, but damn, I'm grateful!

@jrgblue , I hope you're reading all these replies and not letting the worst-case scenarios drag you down. The initial diagnosis is indeed a shocker and life-changer. Despite being somewhat athletic all my life, I'm 2 decades older than you and probably started my cancer journey in worse health than you. You may have a seemingly long journey (3 years?) in front of you with regard to treatment and monitoring, but are likely to have a _much_ longer journey of enjoying a healthy life after that. Sending you all the positive energy, thoughts, and prayers I can muster. In the famous words of Larry the Cable Guy, "Git 'er done!"

---

And @jk77 , your guess in the other thread is correct; I am an engineer (electrical). It does help a little with math, statistics, logic, and reading scientific papers, BUT... I have zero training in biology and no medical training beyond basic first aid and defibrillator. I do have an EMT and an ER nurse among my wonderful kids, but have learned a few things from all my family's past medical issues (including multiple cancers). I'm just compensating now for all the homework I didn't do in high school and college. Nothing like having the disease yourself to become a highly motivated student!!!

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