Ampullary Cancer with ZERRO treatment offered

richjh

I had a stint put in to unclog my bile duct. I felt better even in the recovery room. They won’t do a Whipple on me because of my advanced MS. I was told that I would have a high probability of not making it off the operating table. So I have been offered Zero treatment.

eDivebuddy

Sorry you're going through this and you're putting up with such poor treatment. No one deserves to be in the situation you're in. You should have been explained all your options and YOU make the decisions.It's incredibly frustrating to read this. Even if surgery has been ruled out , systemic treatments like chemotherapy or targeted therapy should still be on the table. Radiation should be discussed, even if it's to explain why they believe you're not a candidate.
Cancer treatments don't always have to be curative. And anyone who believes it should find a different profession. Should I have given in to the statistics? I mean I had lung cancer spread to my liver , chest, neck, brain and skin. A metastatic Skin lesion usually means your end state. But end stage also means all options have been tried and failed.
I had brain surgery not to cure my cancer. But to save my vision for the up to 5 months I had left. Same thing with the radiation. Neither was meant as a cure, just to control the cancer and preserve what I had. 4.5 Year later I'm still receiving palliative treatments.

Do far I've had
A Craniotomy
5 rounds of Radiations
About 350 mg of Taxol
3,150 mg of Carboplatin
6000 mg of Alimta
15,600 mg of Keytruda
44100 mg of Avastin
That's a huge amount of treatments for someone they said had 6 months tops.

I can't speak to your cancer directly, but I can speak to the fact that they've done a piss poor job at informing you of your options. I would definitely get a second opinion and possibly seek care elsewhere.

Look for an NCI designated cancer center or a major teaching institution.

richjh

other than the Ampullary cancer diagnosis I have had MS since 1984 and it has taken a toll on my body. I’ve had spinal fusion with rods inserted, a Medtronic pain pump, Self catheterize every few hours and have a colostomy. I am service connected and I’m rated SMC-R2. That is why they are doing nothing. The consensus is I wouldn’t survive a Whipple.

eDivebuddy

I understand that your MS and its complications have made treatment decisions more complex, but I don’t accept that “doing nothing” is an appropriate course of action. The fact that you’re rated SMC-R2 means the VA acknowledges the severity of your condition, but that doesn’t justify abandoning treatment options altogether.

Saying you “wouldn’t survive a Whipple” is one thing—but what about other treatments? Targeted therapy, immunotherapy, palliative radiation, or even clinical trials should be explored. Refusing to even try is unacceptable.

The VA has an obligation to treat service-connected veterans with more than just a dismissal. If surgery isn’t viable, what’s the alternative? Simply waiting for the inevitable? That’s not medicine that’s neglect! You deserve better.

If they won’t step up, push them to explain why they aren’t considering alternative treatments. You’re entitled to care, not a death sentence they should still offer systemic treatment options like targeted therapy and immunotherapy—not just palliative care. The next steps should include:

1. Molecular Testing

Before deciding on the next treatment, the VA must order comprehensive genomic profiling to check for actionable mutations that could qualify the patient for targeted therapies or immunotherapy. Testing should include:

HER2 amplification → Trastuzumab + chemotherapy

MSI-H/dMMR status → Pembrolizumab (Keytruda)

TMB-H (Tumor Mutational Burden-High) → Checkpoint inhibitors

KRAS G12C mutation (if present) → Adagrasib or sotorasib (KRAS inhibitors)

BRCA/ATM mutations → PARP inhibitors (olaparib, rucaparib)

1. Targeted Therapy (if applicable)

If molecular profiling identifies treatable mutations, the VA must prescribe the appropriate targeted therapy:

HER2-positive ampullary cancer → Trastuzumab (IV)

BRCA/ATM mutations → Olaparib (oral pill)

KRAS G12C mutation → Adagrasib or sotorasib (oral pill)

1. Immunotherapy (if applicable)

Pembrolizumab (Keytruda): If MSI-H/dMMR or high TMB is detected, Keytruda (IV infusion) should be approved.

Nivolumab (potential alternative for MSI-H cases)

1. Chemotherapy (if they insist)

If the VA denies targeted therapy/immunotherapy, they must at least offer palliative chemotherapy like FOLFIRINOX (5-FU, leucovorin, irinotecan, oxaliplatin) or gemcitabine-based regimens.

1. VA Community Care / MISSION Act

If the VA refuses targeted therapy or immunotherapy despite biomarker evidence, you can request Community Care referral under the MISSION Act to seek treatment from non-VA oncologists.

What to Do Now

Ask the VA for full molecular profiling (NGS testing)

If the VA refuses targeted therapy/immunotherapy despite biomarker evidence, escalate the case through VA Community Care

Consider outside oncologists if the VA remains non-compliant with standard treatment guidelines

I'm so mad.  I  personally never ever use the VA, but my dad and my son swear by them. And I know they have excellent oncologists but this is just nuts.

Now if you're done that's a whole different story but you should still be presented with all the information.