Tumor can’t be removed: What are chances of survival now?

I am sorry to hear about your husband's surgery complication. I know that must have been frustrating, disappointing and scary. I'm not an MD or any sort of medical professional, so I surely wouldn't even try to venture a guess on prognosis. Right now, I would focus on recovery from surgery. A good recovery is key to whatever treatment comes next. While your husband is recuperating, it would be a good time to talk to the oncologist about treatment options. The quicker you can make decisions and plans, the quicker treatment can begin once your husband is able to do so.

I'm in the same boat--inoperable, although I never qualified for Whipple surgery. In my case, chemo is the only option; I don't qualify for radiation because of mets in my abdomen. I would definitely ask your oncologist about radiation, though, since your husband may qualify for it. Re chemo, there are two basic regimens, with the possibility of some tweaking as needed. Some people can get chemo and radiation both. There are also clinical trials of new medications, and they're worth exploring, but talk about pros and cons with your oncologist.

I hope that you're working with a pancan center of excellence so your husband gets the best care possible. Here's hoping his recovery from surgery goes well!

I'm not a medical professional.

While you didn't provide his age, or where you are located, physical condition, or whether he had chemo prior to the attempted Whipple, my sense is that he would start chemo as soon as possible in order to but time to make decisions associated with his treatment.

He is 67 years old, diabetic and smoker. He did 5 cycles of chemo. The tumor board ismeeting on Monday to discuss the next steps. It’s hard because he is angry and in denial at times.

Hello @treyman1234 and welcome to Connect. I see that @ncteacher and @mayoconnectuser1 have already responded to you based on some of their own personal experiences. As was mentioned in their posts, the members of Connect are not medical professionals and so we cannot give you any medical opinion on your husband's prognosis. We are here, however, to offer support, encouragement and to share our own journeys with health issues we have faced.

The suggestion that he see a PanCan specialist is a good idea. Here is a link to the website for the National Pancreatic Cancer Foundation, https://www.npcf.us/. At the top of the screen is a phone number and an email address. If you contact them, they may be able to give you information on the nearest Pancreatic Cancer Center of Excellence in your area.

At the very least, a second opinion would undoubtedly be a good next step at this point. Do you live near a multi-disciplinary medical center such as a university medical school or a health care center like Mayo Clinic? These would be good places to go for a second opinion about your husband's condition. If you like to request an in-person or virtual consultation at Mayo Clinic, here is a link with information on how to call for an appointment, http://mayocl.in/1mtmR63.

As I read your post above, I see that you say, "It’s hard because he is angry and in denial at times." I'm sure that you feel alone in this difficult journey and I'm sure you could use some support to help you deal with his anger and denial.

I'd like to suggest that you take a look at the Caregiver's support group on Connect. Here is a link to those discussions, https://connect.mayoclinic.org/group/caregivers/. In these discussions, you will find other spouses and caregivers who are also dealing with anger and denial in one form or another. I think you will find their comments helpful. Feel free to post in those discussions as you feel comfortable doing so.

Will you post again?

This was our second opinion and it was done by a top doctor at the University of Chicago. The problem was that all the images showed the tumor to be around 2cm when he went in it was actually the size of a golf ball and growing toward the liver but is still contained to the pancreas. If they would have continued he would have bled to death. Another specialist was brought into the surgery and he agreed that it was too dangerous.

(Sorry for context, but I was typing my reply when the last two above were submitted, so I didn't see them before hitting my Submit button)

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I'm not a medical professional, so no expertise on this, but...

There are some surgeons and teams with expertise in arterial reconstruction who might be able to take a second attempt at the surgery. You would definitely only want to do this with a very experienced surgeon (team) at a pancreatic cancer center of excellence.

I suspect he will need a little time to recover from this surgery before any other treatment. If nobody else will take him as a Whipple candidate, there may be other surgical options depending on evidence of any other spread. Since they took him for Whipple, they apparently didn't have evidence of any distant metastasis, so that's good. But, if they didn't see the arterial encasement and actual size of the tumor before starting surgery, I don't know if this is really the expert team you want on your case. Maybe it was totally unavoidable and impossible to know.

How long before the surgery was his last CT/MRI done? I insisted on having an MRI the week before my Whipple just to make sure my surgeon had the latest and most accurate imaging possible before he cut me open (for an open Whipple procedure). But he told me beforehand that he would still start with a minimally invasive exploratory/diagnostic laparoscopy to look around for metastasis and other general problems that would cause him to abort the procedure before taking the head of my pancreas out.

If there is strong indication there is only one tumor and zero spread, but nobody will take on the surgery to remove it, you could ask about "brachytherapy" surgery -- such as radioactive pellets implanted in the tumor, or a one-directional radioactive sheet ( https://civatechoncology.com/civasheet/ ) wrapped around the tumor.

There's also a procedure called IRE (IrReversible Electroporation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4640920/ ) which can be done percutaneously (not as an open surgery) but I have no idea if it's possible when there is arterial encasement.

If your local tumor board thinks radiation is feasible in that location (without damaging other tissue), they might recommend it as a possible way to reduce the size and the arterial involvement to make him surgically resectable again in the near future. If this is the case, it buys you some time to seek out second/third opinions and get scheduled in with the next medical provider of your choice.

If they take the conservative approach, they will probably say it's a nasty, inoperable tumor that has likely already spread microscopically and needs to be treated systemically (chemotherapy). If there is a long recovery period from this surgery before he begins treatment, it does increase the chance of cancer spreading in that time frame, so you'll be in the hot seat for making decisions, but one decision that shouldn't wait is seeking the second/third opinions to help you make the actual treatment decision(s).

Part of the "hot seat" decision is that he may need to start chemotherapy immediately (asap) in order to prevent the cancer from spreading, but starting chemo or any other treatment now might disqualify him from a promising clinical trial. But trials can be tricky to qualify for, hard to get into quickly, or require more travel than you can manage. Nonetheless, after your oncologist/surgeon get the tumor board's opinion, you should ask a number of questions, including:

1) Did they get enough (any) tumor tissue to do full next-generation sequencing (genetic analysis) to identify mutations, possibly save/reuse that tissue to build a "Signatera" test for ctDNA monitoring during your future treatments, or use that tissue to create a customized treatment with CAR-T cells, Natural Killer cells, a "personalized peptide" or similar treatment?

2) Can they recommend an ideal clinical trial for you now, or help you get started with the search? They often won't refer you to outside trials that their own practice is not participating in, but hit them up for every piece of advice they can provide on helping you find one that might be better than the next round of "Standard of Care" treatment.

3) If there's no chance of getting into a trial soon enough to avoid beginning/resuming an SoC treatment, can they tell from the imaging history, CA19-9 history, and analysis of tissue they got from the surgery whether the Folfirinox actually did any real good? If not, would they recommend one of the alternative SoC treatments (Capecetibine, Gemcitabine, Abraxane, Oxaliplatin/cisplatin or any combination of those) instead?

4) Assuming his immediate treatment is under the same oncologist you've been seeing, how often will they be doing imaging, CA19-9, and Signatera (or other ctDNA) testing?

5) Are there any other surgical interventions he will need soon to avoid other problems, such as stents (or stent replacement) to avoid bile duct blockage, other digestive blockages, etc?

As a side note regarding anger and denial: I totally understand. I became diabetic as soon as my pancreatic cancer was diagnosed. I had an easier Whipple at age 59 with (only very minor arterial involvement) after 12 rounds of Folfirinox (which didn't appear to do much good). It took two cuts of the pancreas to get a clean margin, but that and all 22 lymph nodes removed were all clean. Yet my tumor was back (visible on MRI) at the surgical site 4.5 months later, almost as big as the original, despite 3 clean ctDNA tests in the interim. A biopsy the week after that MRI came back clean -- they were unable to detect cancer cells in the 4 pieces of tissue they took endoscopically. Their tumor board looked at it and recommended more tests and another MRI in 6 weeks, by which time CA19-9 continued upward, the tumor continued growing (and spread 🙁 ) and a ctDNA test finally registered positive. I rushed to get expert 2nd and 3rd opinions within 3 weeks (some delay due to holidays), but by then, everyone agreed surgery was not feasible, radiation was not feasible because of the locations, no appropriate/practical trials were available in a timely manner, and systemic chemo asap was my only answer.

I had just gotten through the worst of the Whipple recovery (digestive and fatigue) and was running 3 miles every couple nights in preparation for a PanCan Purple Stride 5K when I got this news. After following all the expert recommendations to the letter, and being a near-ideal "resectable" candidate at diagnosis, I found myself at Stage 4, looking at a chemo regimen that was generally considered less effective than the Folfironox that had already let me down. I had already lost two friends to PC that year, and I was also taking care of my dad (RIP in July 2023) through his cancer, so yeah, there was (and still is) definitely some anger and resentment, but not the kind that does me any good.

The forum software appears to have some undocumented, unpredictable restrictions on post length, so the rest of this is continued in another post below.

(previous post continued)

As you've probably already learned, about 80% of people diagnosed with PC catch it too late to even have surgery, so the fact your husband's was caught at this stage is still a good sign. What I learned later, that about 80% of the people who have surgery will still have a recurrence, and about 80% of those who do will have it in the first two years after surgery. So in a way, despite my initial (uninformed) hope, I was still likely (as most surgical patients are) to be facing the beast again. That was a late reality check; small consolation, but as it led me to this forum and a lot of the long-term survivors here, I do find encouragement and hope there will be some kind of cure for me before it's too late.

With all that said, I'm definitely not qualified to speculate on chances of survival, but I can offer hope. I've been on the "less effective" chemo (Gemcitabine + Abraxane + Cisplatin) for 10 months now. My main tumor and all the little mets in my abdomen have either stabilized or shrunk slightly. My CA19-9 has come down from almost 700 to low 40's. I feel no ill effects I can attribute to cancer (other than some depression), and only mild effects (neuropathy, fatigue, and difficulty focusing on work, which I'm still doing full time) from the chemo. I haven't paid for a haircut all year either. All a fair trade, IMHO, given the circumstances!

I'm going to suggest 5 trials your husband might be able to participate in, but those are just a fraction of what's out there. PanCan.org and CancerCommons.org might be able to help you find others that are appropriate to any specific mutations your husband has.

1) Basecamp + Everest: (CAR-T cell treatment)
Basecamp-1: https://clinicaltrials.gov/study/NCT04981119 , which would determine eligibility for
Everest-2: https://classic.clinicaltrials.gov/ct2/show/NCT06051695

2) Natural Killer cells: Study of TROP2 CAR Engineered IL15-transduced Cord Blood-derived NK Cells Delivered Intraperitoneally for the Management of Platinum Resistant Ovarian Cancer, Mesonephric-like Adenocarcinoma, and Pancreatic Cancer ( NCT05922930 )
https://clinicaltrials.gov/study/NCT05922930
(Might be appropriate if there's any evidence of spread in the peritoneum)

3) Targeting Claudin 18.2 with CAR-T cells (CT041)
https://clinicaltrials.gov/study/NCT04404595
4) Targeting Claudin 18.2 with T cell-engaging bispecific antibody (AZD5863 )
https://clinicaltrials.gov/study/NCT06005493
5) Conventional chemo (GAC) plus Tumor Treatment Fields (Mayo Jacksonville only)
https://clinicaltrials.gov/study/NCT04605913
As mentioned earlier, ask your medical team, PanCan.org, CancerCommons.org, and anyone else you can find for help __ASAP__ navigating the clinical trials landscape and expert second opinion options before you get locked into a traditional treatment that might not be optimal for YOUR particular case. Remember, they're treating YOU (your loved one), not just the statistical-median patient.

Wishing you the best!!!

--mm

A tumor board is typically consulted in very difficult cases. You can ask what specialties are on the tumor board and ask for a copy of the tumor board report if this is possible. It will give some perspective on what is going on. The therapist, spiritual care that I have personally have helped me a lot as well as family and friends. Palliative care tries to address issues related to improving quality of life. Typically your doctor should refer you but consultation with a counselor/therapist who works in oncology might understand your issues. Mine happened to have his wife died from pancreatic cancer. I saw him before my diagnosis. He disclosed this after my diagnosis. I asked if he would be comfortable with continuing seeing me and he was. I find that he really "gets it". So does my minister who previously worked as a Chaplin in palliative care and hospice. Thanks for sharing your story, you have traveled a difficult road for sure.

Thank you

One other link with offers to help find appropriate clinical trials:
https://app.emergingmed.com/lustgarten/home