Duodenal Cancer, reoccurrence after 1 year

pamtgd
pamtgd Member Posts: 2
edited February 2023 in Rare and Other Cancers #1
I was diagnosed with Duodenal cancer, stage 3, Feb, 2011 and had Whipple surgery March, 2011. Tumor was very aggressive and doubled in size in 1 month. Extreme tiredness preceded the diagnosis but no other symptoms. They looked for the source and found blood loss and after many tests found the cancer. One year later, I'm doing well but concerned about my long time prognosis. My doctor told me there was a greater than 50% chance of recurrence. I am 55 years old. Does anyone have any info about recurrence rates and longevity? Are there any longtime survivors out there? I have a supportive community of family and friends and most of all, I have faith that God will see me through this. I am learning to take each day for what it is and to do things now rather than put them off. (this was my original post, but put it in about me)

Update: Now a year later, I'm 56 yrs, and I've now had a reoccurrence of duodenal cancer (June, 2012) and have to decide on a new treatment plan. My doc is trying to manage the cancer so it doesn't spread to organs. They have turned me down for additional surgery, says there would be no benefit. Have a radiology consult this Friday and considering another chemo retiming. I need ideas and suggestions about how to proceed. I'm with Kaiser Permanent HMO in California which seems to restrict my health insurance options. The reoccurrence is in the lymph nodes which measured 4 cm in June and a month later, increased to 4.7 cm, so I need to start treatment soon.

Comments

  • carl17
    carl17 Member Posts: 15
    #2
    Duodenal Cancer
    I am 63 year old male living in Toronto Canada.

    I was diagnosed in May 2012. I had the first warning sign when I got deep vein thrombosis (DVT) in January - this turned into a pulmonary embollisim. My low hemaglobin sent them looking for Cancer and I had an upper GI and Colonoscopy both of which were clear. They considered an abdominal scan but didn't do it ("In my 40 years I have only had one that was positive" said the doctor. Actually he has had at least two one he got and me he missed. In May I was back in the hospital after a second set of blood clots and a second pullomanary embollisim. My body was telling them something.

    I had a resection of the small bowel. They removed a 6.5 cm tumour which was maglnant. It is termed an aggressive variant of macropapilliary adenocarcenoma in the small bowel. (4th section of the dudodema). The margins were clear in the resection but the circumference of the tumour ill defined. I am in stage 3a - Spread to one lymph node.

    I had the surgery June 1 and some post surgery complications (swelling where you don't want to swell) . During surgery only 3 lymph nodes were taken out. The surgeon said the others were too close to viens that feed the small intestine with blood and an error could be fatal. During a second surgical consult the surgeon called the first surgery 'adequete'. He would have prefered a whipple had been done with the resection. He doesn't recomend the whipple now (too little benefit for the risk) but he is recommending radiation as at the moment suspicious looking soft tissue nodules likely cancerous are adjacent to the re-section..

    I am going for a third opinion for a surgical consult to see if a re-surgery is an option.

    I started my Folfox chemo and have had two rounds - one day in the hospital on the drip and then wore the chemo bag fannie pack for two days. Very few side effects.
    What I have read about the efficay of Folfox is not encouraging. One study I saw said it was 'sucessful' in 13% of cases - success being defined as prolonging life expectancy by 12-14 months. However there is so little data and so few studies to make anything reliable. We both know it is an uphill battle.

    I had an MRI last night and a CT on tuesday to see what is happening with the suspicious nodules' . Won't know the results till next week. Like you I am concerned about long term survival.

    I would like to keep in touch

    carl
  • carl17
    carl17 Member Posts: 15
    #3
    Update - good news !!
    My MRI should no distant metastese. A soft tissue mass adjacent to the re-section of the duodeum was highly suspicious of cancer (1.6 cm). When the surgery was done I had one positive lymph node out of 3)

    After two rounds of Folfox the CT done on Thursday showed it had disappeared and they see only 'stranding' - healing from the surgery.

    The oncologist takes this to mean the chemo is working, the surgeon thought it was only surgical trauma from the onset, the second opinion surgeon thought there were other supicious cancer nodes and gave me a 5-15% survival rate.

    I am also concerned about thecancer's ability to develop resistance to the chemo and the possibility of reoccurence.

    Th e possibility of radiation has been ruled out (nothing to radiate at the moment). I did not have a whipple but am going for a 3rd surgical consult. I will have him do a close look at the CT scans before and after chemo to get his take.

    Were you able to find anything on re-occurence rates?.
  • DCS
    DCS Member Posts: 9 Member
    #4

    I’m so happy for you I just started chemo for my 3A staged cancer had modified whipple in December I am very concerned about reoccurrence there just isn’t a lot of info or data on this On a happy note for me my oncologist was happy to have me as a patient as he says most duodenal patients he sees are palliative and there isn’t much he can do as it caught to late Stay in the best state of mind and health that you can as it sounds like chemo is working for you Take care

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