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. 

Hello

I hope you don't mind but I have sent you a friend request.

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Hello DGDigital. 

I'm so sorry to bother you but could I message you?

I sent you a friend request a few weeks ago. 

Thankyou 

Hello DGDigital. 

I'm so sorry to bother you but could I message you?

I sent you a friend request a few weeks ago. 

Thankyou 

Hey Fallmare, 

I've now accepted your friend request & replied to another one of your posts. :)

Hello, 

It has been really useful to read the comments on this thread. 

On Wednesday I had an Endoscopy and they found a tumour around the Ampullary. I am having a CT scan on Monday morning so I am pleased that they have rushed this through. Of course I have no idea what the result is going to be but I am obviously a little apprehensive. They have pushed it to a panel that are going to look at in on Monday afternoon. 

The only symptoms I have at this stage is constantly feeling fatigued, abdominal discomfort and my toilet visits have gone from once a day to 4/5 times a day. I go most days now with feeling sick at some point and this puts me off eating, but I have had no weight loss, in fact ive been putting it on with my stomach increasing in size. I dont overley eat and never have done, and mainly just one meal in the eveing and nothing much in the day. 

Its not making much sence to me if im honest.

Kindest regards

Ian  

Hey, Ian,

Thanks for sharing a piece of your heart & journey with us all. It's one heck of a roller-coaster-ride, eh?! 

I can relate to you symptoms, I'd sleep the clock round on a day off. I couldn't eat either due to nausea, & weight loss was the result. I also experienced bloating, so perhaps that's how it is for you too. 

I had three different diagonosis: first one was pancreatic cancer, second it was duodenal cancer & final one was, ampullary adenocarcinoma. 

I asked if that was their final answer, or if they wanted to phone a friend. (fun) ;) 

To be fair, I'll take the third & final one over the first one. 

I wish you well & sending you my warmest wishes. 

If you do happen to reply I'll get an email notification, though you don't have to do anything. 

We're here if you need us for support. 

DG :) 

 

Hi there,

My Mum has been diagnosed with Ampullary cancer a few days ago. I'm still in shock to be honest... Having lost my dad to cancer only 6 years ago, within a very short time (6 weeks diagnosis to death)... I'm now panicking... My mum has been in hospital for almost 2 weeks now, since being admitted to hospital A and E for jaundice... I've been reading up on it and concerned... We've been told it's inoperable and chemo/ radio aren't an option /viable, due to Mum's small frame and v low body mass... Help!!! /

I'm so sorry to hear about this & you must be at your witts end. 

A big part of me doesn't know what to say to you, & there's also a part that does. 

I have to be respectful of the forum rules & regs on here. I've already had a couple of friendly warnings..

You've said that the hospital can't operate, or offer chemo or radio? 

This is pretty much their tool kit. (cut it out via an op, or radiate it/chemo it). It certainly has its uses & I'm grateful for my 12 hour op! 

What do you do when the medical teams can no longer offer any solutions? 

I can't answer that for you or your family. 

My Dad is 82 & dying of cancer. He's ready to go & it can't come soon enough for him. 

How is it for your Mother? (rhetorical question) 

If you want to continue this conversation, then feel free to pm me. It's fine if you don't as well. 

I'm not allowed to speak freely on this forum. 

Much love to you & your family at this difficult time. X 





 

Thankyou, they are just suggesting palliative care... So we've got to just go with that... There's so much to sort out practically as Mum lives on her own... I'm guessing the hospital will hopefully give me some info and advice... Actually dreading her coming out in some ways, she feels "safe" in hospital, but her discharge is (I think) pretty imminent... And I'm due back at work on the 31st Aug (I teach full time and can't afford to give up work)... Deciding what to do... It's overwhelming... Just doing the phone calls to family and Mum's close friends is bad enough (Mum's very private, but wants closest friends to now know, she can't bear the "C" word, but refers to "it" as her condition... (too painful with my dad having died from "it" - though a different type- 6 years ago)... Wondering whether it's worth speaking to Macmillan etc for advice /support too? 

It's definitely worth reaching out for support wherever you can, in my view. 

We all handle trauma in our own way, & your Mother is doing it in a way which makes most sense to her. 

Bless her heart. 

For me I heard my diagnosis/prognois (which wasn't great, I might add), had the 12 hour op, & then discontinued the three monthly follow-up blood tests & scans. I'm also making up my own prognosis. I much prefer my own version of how my life will go from here. 

I also refused the 6 months of chemo they wanted me to have.

This is just me & it's not a recommendation for anyone else. 

How often do we give our power over to a guy or woman in a white coat?  I say this with respect to those who devote their lives to this work as well. 

The NHS staff were all AMAZING with me & my recovery in hospital! I'm forever grateful to them. 

However, I was told at school by teachers I'd never amount to anything. I'm pleased I didn't believe them or take it on as my truth. 

My surgeon told me I'll likely not make it past the two year point. I aim to prove him wrong. 

I do my own research on things & sift out the wheat from the chaff. 

I won't go any further on this topic. 

Wishing you a smooth road ahead & keep leaning on others for support when you need it. X 



 

Thankyou for taking the time to reply... There don't seem many who have this type... Compared to the others... I guess it's just a matter of taking one day at a time

Yes it's a relatively rare type indeed. 
Try & be as present as you can with your Mother & be with her in this part of her journey. 
 - & go easy on yourself too... 
Much love. :) 
 

I had the Whipple procedure in October 2018 for ampullary adenocarcinoma  in London, by the most wonderful surgeon. Prior to the surgery, after a very detailed and thorough consultation, he just said 'small cancer, big surgery'. After the surgery I had 2 weeks in hospital. Having had great care, I returned home and by Christmas I was well on the way to full recovery. At the beginning of 2019 I had chemo and now the oncologist checks up on me every few months. I take 12 ! Creon tablets a day and apart from going to the loo rather frequently I feel fine. I'm posting this to show others that there is hope and to be optimistic about the future. I do think a positive frame of mind helps. So good luck to everyone.