With all that being said, are there others out there who are experiencing this now or in the past? and how was your process?

Currently, I'm on anti-anxiety medications because the anxiety of this all is completely unbearable. And I guess, I am curious if it's normal to have this much anxiety while having cancer.

Thank you all for taking the time to read and comment.

Anyone out there with doudenal cancer?

My husband was diagnosed with duodenal cancer (adenocarcinoma) in august 2018. When he was diagnosed he was already a stage IIIV, and the cancer had spread to his liver and skeleton. He recived chemo therapy, but had no effect of oxaliplatine. Last year he ha 8 rounds of FLIRI wich is Irinotecan and 5fu. He ha some effect of that, but he got very ill from the treatment. For the past 10 months his cancer has been fairly stabile, but now it has star growing once again. He is only 39 years old, and I am so scared of losing him! I am gratefull for every day that I get to be with him, but I`m scared since the treatments he has tried so far has not seemed to have to much of an effect. Anf it doesn`t seem to be that many treatment options left??!!

Anyone in the same situation as we are??

(Sorry for my writing, I`m norwegian!)

Anita 

My cousin (37 years old) has been diagnosed with a Mixed Adenoneuroendocrine Carcinoma (MiNEN) located in the tail of the pancreas, measuring about 13x15 cm. The tumor is attached to the spleen, the ribs, and possibly some nearby areas.

The pathology report mentions a neuroendocrine component, and there might be a few small local metastases near the tumor, but no distant spread so far.

We are trying to understand what treatment could offer the best outcome — surgery first or chemotherapy first?

If anyone has experience with pancreatic MiNEN or similar cases, we would truly appreciate your insights on:

• When surgery is recommended vs. when to start chemotherapy
• Which chemo regimens have worked best in your experience

Thank you so much for any help or shared experience. 🙏

I have gallbladder cancer, discovered during what was anticipated to be a routine laparoscopic removal of my gallbladder, based on the presence of gallstones. As is the case in "Western" countries, gallbladder cancer is most frequently discovered only when it has become "advanced" (Stage II-B and higher). Mine is at Stage III-B, which means it has not metastasized to remote locations, but it has found its way outside of the gallbladder. I have signet-ring cancer cells, which are a more aggressive form of cancer. (In East Asian countries, the characteristics of gallbladder cancer are different and the disease is much more frequent. So, their studies are not necessarily relevant.)

In the United States, there is now a National Institutes of Health-coordinated study that is specific to gallbladder cancer. (There may be other studies with an exclusive focus on this type of cancer. This one is being carried out at a variety of university medical institutions.) Because gallbladder cancer is so rare, it's too often lumped together with other types of biliary tract cancers, even though researchers know that gallbladder cancer has some characteristics that are different. So, this study of treatment protocol is particularly worth following for its unique focus. (I am a "human subject" in this clinical study regarding the potential benefits of having half of the chemotherapy regimen before surgery). My oncologist and oncology surgeon have been adamant that the findings of larger studies that merely include some gallbladder cancer patients and generalize based on findings for pancreatic cancer and common bile duct cancer should not be interpreted as applying to gallbladder cancer.

Reading papers that look at median time from stage of discovery to death is discouraging. Reading papers that look at the longevity for 2 years to 5 years is also not encouraging, but (with imperfect data, contaminated by findings for other cancers found in the area of the gallbladder) some people do make it to the 5-year mark after surgery and chemotherapy (assuming a starting point of Stage II-B to III-B, with lower percentages the further the disease has progressed).

The question I have is what is the net benefit of going through chemotherapy if your gallbladder cancer is already at Stage III-A or III-B? (Having surgery to remove the gallbladder and anything else that's obviously cancerous in the vicinity is imperative, as far as I'm concerned.) I've seen numerous papers that discuss median time to reappearance of the cancer with a very small difference between what happens with aggressive treatment vs. surgery only. Subtract how awful you might feel for some of those months of aggressive treatment (surgery + recovery + chemotherapy takes approximately 7 months), and you're trading off 7-8 months of energy now for hoped-for energy later, where that might only last a couple of months. I cannot get a straight answer from my oncologist about median time to recurrence for gallbladder cancer, probably because reliable data does not exist. He just says "We're going for a cure."

What have your experiences been with treatment? (Obviously, we're not going to hear from the majority who have not been cured and have died.)

I am a GBC survivor looking for others. I was diagnosed in March of 2021. My gallbladder was removed due to stones, then pathology found it full of adenocarcinoma, stage II-b. I underwent treatment with a liver resection followed by 6 months on Xeloda. After 5 months, a lesion was found in my liver and cryoablated. Not certain if that lesion was a metastasis or not, but my CEA etc had been elevated, so probably was. Now I am on a survivorship program getting DNA checked and a scan every 6 months. So far, things are going well and I feel pretty healthy. There is always that fear of reoccurrence however.

I would like to hear more from others who have undergone treatment and how things are going afterwards for you.

Thanks for sharing your experience!

My dad got his diagnosis 7 month ago. It has now spread all over and there is nothing more they can do for him. But no one can tell me what to expect because no one knows anything about this type of cancer in Denmark, where i'm from.

So if you know anything, please respond.

I then remembered this ancient proverb, “The enemy of my enemy is my”.

"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. 

"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. 

Well, this doctor is a new one. We didn't know that the cancer had spread - just that there was a risk that some tumour cells might not have been eliminated, but that was just a suspicion. The tests were fine three months after that.

And how could she speak about palliative chemo so bluntly? Besides, is it normal to think about that when the blood test is fine and the patient feels better?

She added that an urologist should see him in a couple of weeks. But there's a group of oncologists that will take a decision on what to do next week. If no one knows yet what's going on in the urine bladder, how can they take a decision?

I don't think that doctor is doing her work as she should.

I am completely devastated - I can not stop crying. I try to be optimistic but my mind goes to those dark places. I have been married to this man for 35 years. We were married when I was 18 and he was 22. He is the love of my life , my rock, the other half of me. I have no idea how to deal with this. A part of me wants to crawl in a hole but I know I have to be strong for him. He is definitely the stronger one in this relationship.

We have 2 grown children. Our youngest is getting married next month and we have decided not to tell them until after the wedding. I have no idea how to tell them the news (as they did not handle it well the first time). And I don’t even know if I have the strength to be strong for all 3 of them. I ask GOD for strength and courage to get through this. Please keep this family in your prayers!!!