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.

richjh

"Spontaneous regression of cancer"

I spoke with Dr. Patel this morning regarding my CT scan. It seems that my MS immune system has so far stopped my cancer dead in its tracks. Months ago I was doing a search and found this article.

"Spontaneous regression of cancer" in an MS patient refers to a rare phenomenon where a cancerous tumor in a person with Multiple Sclerosis (MS) shrinks or disappears completely without any specific treatment, essentially healing on its own;this is considered a very unusual occurrence, and the exact mechanisms behind it are not fully understood, but are often linked to the complex interplay between the patient's immune system and the cancer itself. 

richjh

I spoke with my oncologist this morning about the results of my CT scan and she was beaming ear to ear. My cancer was not only stopped in its track but it has shrunk. I remembered a passage from months ago,

"Spontaneous regression of cancer" in an MS patient refers to a rare phenomenon where a cancerous tumor in a person with Multiple Sclerosis (MS) shrinks or disappears completely without any specific treatment, essentially healing on its own;this is considered a very unusual occurrence, and the exact mechanisms behind it are not fully understood, but are often linked to the complex interplay between the patient's immune system and the cancer itself. 

richjh

I think on my next CT scan in 3 months I will start to believe the remission. Below shows all cancer cases. I have no idea how I could be so lucky. Dr. Patel is talking about doing a case study.

The rate of spontaneous remission is estimated at 1–10 out of every 1,000,000 cancer cases. 

eDivebuddy

May you enter the record books.

richjh

It is reported that the rate of spontaneous remission is estimated at 1–10 out of every 1,000,000 cancer cases. That is all cancers not just Ampullary cancer. I’m still wondering why me.

eDivebuddy

I'm thinking MS decided it didn’t like the cancer. But no one but God will ever know for sure. Spontaneous remission has been reported at rates between 1 in 60,000 and 1 in 100,000, depending on the year.

But with your cancer already being so rare, just one documented case would bring that estimate to about 1 in 23,000— and you're that one.

Not only are you the 1 in 23,000, but I couldn't find any reports of spontaneous remission in ampullary cancer at all. That makes this even rarer. Based on estimates, that would be about 1 in 2.9 million cases since 1900.

richjh

https://csn.cancer.org/discussion/comment/1721734#Comment_1721734

I think that for sure. I think my MS said, “No one messes with body except me!” The proof will emerge on my next CT scan.

richjh

https://csn.cancer.org/discussion/comment/1721734#Comment_1721734

https://csn.cancer.org/discussion/comment/1721735#Comment_1721735

They said chemo is out, targeted therapy, immunotherapy is out. They also say that the Whipple is out because of the severity of the surgery. The tumor had shrunk on the last CT scan and my appetite is back and I feel great. My oncologist said she has never seen a tumor shrink without any treatment or surgery. I won’t get really excited until my next CT scan showing the tumor has shrunk more or at least remained the same.
I want to thank you for all of your comments. I will be posting again in 2-1/2 months.