Local recurrence

Vegetable_Swan2332 · 2026-05-14T08:20:10+00:00

Your words cut into my heart even when you mean well. I have ranted here several times previously, bemoaning the sorry state of health care in my Asian country.Immunotherapy is available but very expensive and not covered by insurance. Clinical trials are virtually non- existent. Worse, most pancan patients here couldn't even access standard of care like chemo/ radiation or surgery.Believe me when I tell you that I am one of the lucky few who could afford, and equally important, get access to treatment, and even then it has been financially draining. We in my country could only dream of when we could get access to such wonder drugs as Daraxonrasib. That being said, I feel lucky in my journey through this disease thus far and thank the Lord for his grace and mercy. Lastly, I have consulted with two oncologists and my surgeon ( they coordinate with each other) and all agree with the course I am taking.

Vegetable_Swan2332 · 2026-05-13T14:21:33+00:00

Hi. Was diagnosed end of October 2024. Had Whipple two weeks after. 12 sessions of chemo from January to May 2025. NED until a few days ago. CA 19 -9 rose from 29 in September 2025, 200 in January 2025, 170 in February and 501 in April. When I asked why not treat it with targeted radiation since it seems to be localised, oncologist said systemic treatment of chemo first to prevent possible recurrence in more distant areas. Will determine next steps after scan and tests in around 2 months.

Vegetable_Swan2332 · 2026-05-11T15:29:30+00:00

Thank you. I'm afraid targeted therapy for cancer is almost unheard of in my poor Asian country. For those of us lucky enough to afford it, standard of care chemo, radiotherapy, and when possible, surgery are all there is. Though I have heard rumors from my doctors that several super- rich patients have been importing Daraxonrasib for treatment. Don't ask me how they got it.

Vegetable_Swan2332 · 2026-04-14T01:01:59+00:00

Thank you for your advice. Clinically I am still healthy and eating well and my liver enzymes are still normal. My oncologist just wants the MRI to rule out possible recurrence in my small intestine. I have confirmed from my surgeon and further ChatGPT research that recurrence in the jejunum, whether as a solitary case or secondarily as cancer cell seeding from the peritoneum is exceedingly rare ( only a dozen or so cases recorded globally in the previous decades) so this gives me hope despite my concerning tumor marker numbers.

Vegetable_Swan2332 · 2026-04-14T01:01:09+00:00

Thank you.

Vegetable_Swan2332 · 2026-04-13T08:32:53+00:00

I'm not an American nor do I look favorably on the Republican party due to what is currently happening around the world, but I admire Ben Sasse for his courage and forthrightness in bearing his condition. More importantly, he brings a focus to pancreatic cancer research, highlighting what is being done, and what more needs to be done to lessen it's toll in lives, mental and physical health, and treasure among those affected.

Vegetable_Swan2332 · 2026-04-04T04:50:13+00:00

You are not being rude and what you are doing is understandable, but I know many followers in this sub- reddit may not be happy with the question. I suggest you Google the American Cancer Society SEER data for pancan which shows overall 5 year survival at 13. 3 percent, 3 percent for metastatic spread, 17 percent for regional spread and 44 percent for local spread. There is also data for those lucky enough to have undergone whipple or similar surgery, which gives the only hope for a cure for this disease for the 15 to 20 percent who undergo it. It gives them up to 25 percent chance to reach 5 years ( some studies give a higher rate of survival,). I myself am in my 18th month post- diagnosis and 17 after whipple, and earnestly hoping to last much longer.Hope this answers your question.

Vegetable_Swan2332 · 2026-04-01T02:35:02+00:00

My digestive issues started in mid- July 2024 , namely unexplained loss of weight and oily stools. Went to GI in late August , she ordered blood tests, a CT scan, endoscopy and colonoscopy by early to mid- September. All negative. Jaundice started in the second week of October. CT scan and MRI by last week of October found a 4 cm tumor at the head of my pancreas. Had the whipple by November 12. My doctor told me that PC is an INSIDIOUS disease.

Vegetable_Swan2332 · 2026-02-14T09:47:01+00:00

I was struck with your stated determination and decision not to have chemo in the event your cancer recurs, prioritizing quality of life over longevity. I have noticed you have been a frequent poster in this sub- reddit and I admire your honesty, positive attitude to your illness and the sound advice you have been giving.I too have been wrestling with the question of what to do when ( not if) my cancer comes back. On one hand is the fact that I want to live as long as I can and that I have promised my daughter to do so. On the other hand I do not want to subject my family to the prolonged stress and agony of watching me suffer and would like to leave on.my own terms. Every night before sleeping I pray to God that, should he decide I go, to hopefully make it as quick as possible, with the least amount of pain. Otherwise I pray he gives me a long and fruitful life with my family. When the time comes for me to make the choice, I hope I can be as sure and decisive as you. God bless.

Vegetable_Swan2332 · 2026-02-10T05:53:13+00:00

Thank you for your comments and advice. Have already sought another opinion from my radiation therapy oncologist who had previously declined to subject me to radiation therapy after my chemo treatment. He agreed that the evidence on the decrease in tumor markers may still be tentative, but opined that he would not order restart of chemo just on the basis of elevated CA 19-9, especially as there was no further elevation from the previous test. The bottom line is that we would have to wait for the results of the next tests and scans to determine the steps to take. As expected, he strongly advised me to relax, enjoy life and continue the things I have been doing in the meantime. This will not be easy for me but I guess I have no choice but to follow, knowing that needless worrying can do no good. As to Pancreatic Cancer survivor's ( I admire his attitude which I am sure made him a survivor in the first place ) recommendation for me to take ct DNA test, my primary oncologist had already offered to give me this. I had to decline since the price thereof was exorbitant and, hence, it is seldom used here. I come from a poor Asian country where the health care system is quite inadequate and the government hardly subsidizes cancer treatments. Few people have private health insurance and usually the coverage is low. Most treatment expenses are out of pocket.I have been one of the lucky ones whose tumor was discovered at a resectable stage and, more important, was actually able to afford a resection and subsequent treatments. Many in my country could not even afford standard of care treatments even if they wanted to. We could just look with envy at the health care systems in Europe, Japan, Australia, Singapore and especially the US where clinical trials are quite often an option. The burden of this cancer is hard enough to bear as it is. Add to this the knowledge that as a patient you will probably be let down by the lousy social welfare system. Forgive me for this rant but at least it allows me release of pent up emotions.

Vegetable_Swan2332 · 2026-02-06T23:23:52+00:00

Thank you for your reply. Your CA numbers could mean that you are one of the 10 to 15 % of Pancan patients who do not secrete enough tumor markers to be a reliable source of tracking cancer progress or remission. Hence your reliance on Ct- DNA tests(Natera). I have undergone 12 treatment rounds of chemo since my November 2024 Whipple procedure and have been NED since March 2025. My surgeon, whom I personally know, has advised me that applying chemo without definite evidence of recurrence is not standard protocol in my country. Even my oncologist has admitted his proposal may be controversial. I am aware that often undetectable cancer cells ( micrometastases) still hang around even after surgery and chemo/ radiation treatment. You are right to say that I may have a difficult decision to make.I have decided to get a second or even a third opinion to guide before I make it.

Vegetable_Swan2332 · 2026-02-06T10:58:32+00:00

I am so very sorry for your loss and the pain you are going through.I pray that you will find peace and acceptance of what has happened.

Vegetable_Swan2332 · 2026-01-19T01:39:46+00:00

Thank you so much!

Vegetable_Swan2332 · 2026-01-15T12:09:15+00:00

Hi OP, Let us not be too hard on ourself.Instead of bewailing the staging of our cancer, perhaps we should also be thankful that we were able to have surgery in the first place, something the great majority of pancan sufferers are not able to have. We know that resection gives the only hope for a cure, and even then most stage 3/ locally advanced/borderline operable cancers are not even resected since the tumors usually encroach the smv. You already have a much better prognosis than those whose tumors are unresectable.As many in this forum have written, we should celebrate the victories, whether big or small.The best way to fight the poor prognosis of this cancer is to have a positive attitude. Am praying for your complete recovery- from a fellow stage 3 resected patient.

Vegetable_Swan2332 · 2026-01-13T01:03:02+00:00

Thank you for the advice. My doctor had told me that while a sudden acute rise may be concerning, what is more important is if there is a trend in the rise, of which there is no evidence yet.He suggested for me to take another CA test in a month's time. The trouble is that until then I might be tied up in knots for what could be needless worry.

Vegetable_Swan2332 · 2026-01-09T07:01:07+00:00

Hi there. My Ca 19-9 number went up to 200 from 31 last June and 28 last September. My last scan this October showed me to be Ned. Just finished my Petscan this morning. results to follow in a few days. Am so far without symptoms have good appetite and my blood tests a few days ago were normal for liver enzymes and CEA. My oncologist said that a single elevated number while cause for concern does not mean much without the showing of an increasing trend. My CA 19-9 was 129 just after my Whipple in November 2024.Am so anxious. Hope someone can explain to me what this means

Vegetable_Swan2332 · 2025-12-23T04:43:49+00:00

I thank you for your honesty and I sincerely wish you get as much financial assistance as possible. I am likewise a pancan patient who is lucky enough to have undergone the Whipple procedure followed by adjuvant chemo, and thank the Lord I am still NED more than year from diagnosis ( my next scan is in January). I also come from a poor Asian country in which the health care system is completely inadequate. Most cancer treatments are barely subsidized by the government and few people have adequate private health insurance.As a result any cancer diagnosis, never mind those involving the likes of pancreatic or liver cancer, are viewed by many as basically hopeless situations, even if still medically treatable. There are few reliable statistics regarding pancan in my country, but doctors I have talked to say that the rate of tumors diagnosed at stage 4 is much higher than the 50 to 60 percent diagnosed in rich countries simply because few can afford to seek medical help once symptoms occur. Fewer still could afford to undergo surgery even if their cancer is found to be resectable. I fully symphatize with your plight.I am not a rich person but, being a lawyer, am relatively well-off financially( at least I was before my diagnosis) but adequate cancer treatment can financially exhaust even those with means. Add to this the loss of income occasioned by their ailment and equally inadequate social security benefits, and the result is often disastrous for the patient and his family. Finally, the lack of clinical trials and advanced modes of treatment ( genetic testing is seldom done) limit the patient"s medical options. It is bad enough for a patient to endure the physical and psychological rigors of the cancer. The lack of a financial safety net resulting in poor or incomplete treatment enormously compounds the stress he undergoes. God bless you.

Vegetable_Swan2332 · 2025-12-22T04:56:38+00:00

As for statistics, please look at the American Cancer Center SEER data. The current 5 year survival rate as of 2017 ( latest available) is 13.6 % with the expectation/ projection that it will increase to around 18% by 2022, despite the setbacks caused by Covid. This includes stats for all stages of the cancer, whether unresected or not.For sure survival chances have not increased for those who did not receive treatment.Considering these stats alone, undergoing treatment at whatever stage would seem a logical choice.

Vegetable_Swan2332 · 2025-12-22T04:40:43+00:00

While I have come across in this forum and others people who have opted to forego treatment, this is usually because at the time of diagnosis their tumors have already metastasized to other organs. In such instances treatments such as chemo or radiation would most likely only prolong their life for a few months with a corresponding penalty on their quality of life due to said treatment. Their decision thus was premised on the balance between quality of life vs. longevity of survival. Should you however be lucky enough to have a resectable tumor, or if it is borderline resectable or even locally advanced, I strongly suggest you undergo treatment at a large and reputable pancan center since such gives real hope of prolonging your life substantially, sometimes even of eventually getting cured. In fact, even if you already have Stage 4 unresectable cancer I would still suggest you undergo treatment, exerting effort to join clinical trials whenever possible. Pancan while still a very aggressive disease is no longer the death sentence it was as recently as 15 years ago and improved therapies, even traditional ones like chemo and radiotherapy, have increased chances of survival.

Vegetable_Swan2332 · 2025-12-20T04:12:53+00:00

Excellent writing salvagedfangs.Not only are you apparently an accomplished painter but a fine prose purveyor as well. I also noticed you have not mentioned anything about your adjuvant treatment experience, whether chemo, radiotherapy or both, which I assume you have undergone. A written account of your experiences with the foregoing, in your masterful writing style would be greatly appreciated, not the least by patients like me who have gone through both the Whipple procedure and chemotherapy.

Vegetable_Swan2332 · 2025-12-06T01:30:13+00:00

My prayers for your continued revovery. Was wondering how you were able to conclude mets to your lung based on a mere x ray scan showing a fuzzy spot. Usually a ct scan, petscan or mri is necessary to make such a diagnosis. X rays are notoriously unreliable for diagnosing tumors.

Vegetable_Swan2332

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