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. 

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.

Hi Ellia,

Thank you for your response. It does help me too, not least to see someone else with the exact same diagnosis & op. 

My journey was full of confusion & three different diagnosis & prognosis. I wish I'd received the same reassurance from my surgeon as you did. 

Anyway, I agree a positive outlook is most beneficial in these matters. 

As a point of interest, I was told to take 7 CREON per day. I find it's working OK for me in the main. 

We're still here to tell the tale which is the main thing. I wish you continued health & abundance in all areas of your life. :) 

 

So, Mum's now incredibly ill, very weak and since Sunday night has been vomiting several times daily. Having to have injections from District nurses and I've now started my compassionate leave... Feel so helpless... 

That's so tough to endure & I'm so sorry to hear of this. 

Your head must be all over the place! There's no dressing this situation up. It's awful & then some! 

My Dad is also terminally ill & coming near to the end of his journey. Cancer SUCKS!!! He's still telling the doctors his (innapropriate) jokes though & hasn't lost his sense of humour. 

You know what though? This experience (including my own cancer journey) has opened me wide open to loving others, & myself. I'm no longer afraid of death - or more importantly - I'm open to living more whilst I am here! 

I'm sending you my wamest wishes at this difficult time. Much love. X



 

That's so tough to endure & I'm so sorry to hear of this. 

Your head must be all over the place! There's no dressing this situation up. It's awful & then some! 

My Dad is also terminally ill & coming near to the end of his journey. Cancer SUCKS!!! He's still telling the doctors his (innapropriate) jokes though & hasn't lost his sense of humour. 

You know what though? This experience (including my own cancer journey) has opened me wide open to loving others, & myself. I'm no longer afraid of death - or more importantly - I'm open to living more whilst I am here! 

I'm sending you my wamest wishes at this difficult time. Much love. X



 

It really does change your perspective doesn't it?!! 

Hi

Just found this site and wanted to share my experience which might give hope to people facing a similar situation. 

I was 58 and had none of the classic symptoms for pancreatic cancer. I was diagnosed with a tumour in February 2020 but only found out it was ampullary cancer after Whipple surgery in March and the biopsy result in May. I am lucky that the tumour was removed and lymph nodes were clear. I opted not to have chemo having been told there were only 2 studies, one showing positive results and the other not. I am almost back to how I was, take Creon with every meal and my diet is practically back to normal. I generally feel positive about my future. I was told there are no tests I can have to check if all is well. That was a surprise and a bit disconcerting at the time but i am thankful for each day and try not to dwell on the past. 

I do realise I am one of the lucky ones but hope it might help someone coping with this rare cancer

Thankyou and I am glad that the Whipple Surgery managed to remove the tumour... Soooo good... What exactly is Creon and is it the GP who prescribes it? On Friday we were told Mum only has "days"... But today was a good day (well morning) and spontaneously decided to take her out to enjoy a blast of sunshine in her (borrowed) wheelchair... NB. Mum previously incredibly fit so this in itself v strange for her... Tonight she's had her syringe driver topped up, the dosages upped by the District Nurse and she's since been sick x2. Not much coming up as she barely eats. Trying to encourage fluid intake...

Creon is a pancreatic enzyme replacement given when part of the pancreas has been removed. Yes, prescribed by the GP

Glad your mum had a good day yesterday and got out to enjoy the sun. I hope she can be kept comfortable and pain free. Thinking of you and your family during this really hard time

Great to hear! I am also back to normal following a Whipple procedure and using CREON.

I did have lymph node involvement though. 

I try not to worry about that though and take each day as it comes. 

All my love to everyone in these forums. We all need it. X