Hi, my husband was diagnosed in July 2018, by August he had the Whipple procedure. Horrendous operation with complications following this. The following March he had 6 months of chemotherapy followed by 6 months of recovery. In this time we were able to get out and about a bit however he was always exhausted. He started chemo again this March as it has spread to lungs, neck, aorta and other areas. With COVID this was then put on hold til June, after a spell in hospital through infection, he has only had another 2 rounds. He is receiving palliative care and we have no idea what the future holds. He is currently in hospital again with an infection. We just want him to have some quality of life, be able to get out and enjoy life, for however long that may be. I must say, the living in limbo and not knowing timescales is the most frustrating thing. Sending positive thoughts your way.

I wanted to add my rather more positive experience. I was a grad student in the US and was 44 (very young) and relatively healthy (overweight, but nothing else). I had itching and nausea and eventually was jaundiced. I was tested for hepatitis, and when that was negative, I was quickly diagnosed with ampullary adenocarcinoma. I had a temporary stent to relieve the bile buildup.  I had the Whipple procedure a couple of months later. Horrible operation with a long recovery time, and I had another spell in hospital for an infection. But they decided no further treatment was necessary, so no chemo or radiotherapy. 

Three years later I was diagnosed with diabetes, I think because of the removal of part of my pancreas, but I'm fine taking insulin. It's been 15 years since I was diagnosed. 

I think my good outcome was probably due to my age and general health, including the factor of doctors taking my symptoms more seriously, so early diagnosis.  Also, having an experienced surgeon, because this is a rare cancer, and Whipple isn't done much. I lived in a major city, so there were experienced surgeons there. 

My Mum is in hospital today (Whipple Surgery) she was diagnosed with Ampullary Cancer in mid-February 2021 after turning yellow and complaining about stomach pain / dark urine. She’s been ill for some time now with stomach pain and fatigue, the doctors started giving her B12 Injections in 2019, and she’s also had polys in and around the bile duct. We have been told the tumour is approximately 5-6mm and hasn’t spread to the other organs. They will be taking the lymph nodes out during surgery to check for cancer cells. Mum is 71 and relatively fit, she’s been coping very well and didn’t want to talk much about the Whipple Surgery, I on the other hand have been researching since she was diagnosed and it’s been absolutely terrifying. It’s so refreshing to hear your story Harpy61. I’m personally finding this experience emotionally painful! So many things can go wrong and even though I’m 100% an optimist it’s difficult to comprehend this surgery in detail.       

Hi Brooksy41,

I feel for you & your Mother. I had the same diagnosis & had the Whipples Procedure on 22nd December 2020. It is a severe op & I had a four week hospital stay due to complications, however, I'm still alive & returned to work a couple of weeks ago. Also, to add, I had three lymph nodes removed & they also found a tumour on my right kidney which was also removed.  

Eating post op is a real challenge but it does get easier over time. 

Keep the faith & just take each day as it comes. Thinking of you both & sending my warmest wishes. 

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