Hi Auntyb,

I'm so sorry to read about your husband. I can only imagine how hard this is for you all. I'm sorry that I can't offer any advice in terms of similar experiences, but my reply here will at least ensure your post is viewed some more times and hopefully some others will be along soon who can share any similar experiences or who can offer some words.

I hope you find this forum useful and do feel free to browse other topic areas for anyone who is going through or who has gone through something similar. It's a very welcoming community of people.

Wishing you all the best.

Ben

Cancer Chat Moderator

Thank you Ben. We have just had a visit from our cancer nurse specialist, Hubbys cancer is quite rare, but i believe now likened to Pancreatic now that is has spread. We always ask about the progress and what to expect, some things cannot be answered, as each case is different.I have had a wander through the chat forum,and other sites, as yet unable to find anyone who have heard of this type of cancer.I find it a comfort to read and follow others stories and experiences and to know we are not alone.

Many thanks. x

Hi Auntyb

my mum has just been diagnosed with this same cancer ,,,, with a 8/9 month expectancy with no treatment and 15/18 month with chemo. my mum hasnt decided what to do as yet.we are seeing the drs this week. my mum has however ruled out the big op, its all very scary stuff and finding it very hard to cope xx

Hi Ruby

So sorry to see your mum has the same cancer as my Hubby, First of all we were told 6 to 12 months.That has now passed only by a month, but we are grateful.. The docs can only give an estimated scope of how long a person has left..We were not given any option of Chemo. To be honest I truly believe that the intervention ( in our case) of any long treatment would have had a dramatic effect on Hubbys overall health. He does not have the mobility to cope with some of the effects that would have happened. The operation I believe is called the Whipple, and like you say is  a big one. My hubby is 66 years old and was diagnosed last August..As i write this, he is poorly with pnuemonia and struggling to take his medications orally..Could you kindly let me know more about your mum? If i can answer any questions that you both may have, please ask.. Its a difficult time for you both. xx

Hi Auntyb

im sorry to hear your husband is poorly with Pnuemonia.i hope he is feeling better now.

my mum is 79years old and suffers from C.O.P.D .she had been having intence itching and spots which was misdiagnosed as scabies.unfortunatly they never did a blood test and my mum had 7+ weeks of intence itching which really got her down eventually she went jaundiced and we took her to a+e and they kept her in and did all the relevent tests and scans and have come up with ampullary cancer in the early stage,she had a stent put in to open up the billary ducts and at the moment shes doing ok..today we went to see the cancer specialist and explaned about the treatment option,my mum is now thinking about her options and wether to start chemo, we are hoping to wisk her away on holiday in a few weeks before she starts treatment but of course the travel insurance is sky high.xx

Hi Ruby

Thank you for your reply. Hubby is still poorly, but hopefully in a few more days he will be well enough to get up..I can only imagine how your poor mum must of been suffering with the awful itching,it seems that one thing triggered off another.I hope you are able to take your mum away for a lovely holiday. I know that travel insurance is expensive, I believe there are specialist insurers that deal with people that have disabilites and illness,perhaps have a look at the Marie Curie site? they may have information that could help.I know when we used to travel abroad (prior to cancer) ,the insurance was high, but for us, i think peace of mind was paramount.Before Hubby was diagnosed,he had no symptons of being ill,except a dark urine. I took him the the docs, he had a blood test (fri) I had a call from the Doc on the mon to say take him straight to the hosptial as he was very poorly,there was a bed waiting. In the car I noticed he had gone completly yellow within minutes. He was in hospital just over two weeks,they mentioned gallstones at first, but when they did the endscopy they found a mass instead.He had a plastic stent put in to open the billary, This has since been replaced with a titanium one.We had a 2 week wait before we got the definate diagnosis.I hope that your mum considers the best options for her, its a difficult thing to come to terms with,not just for her, but the rest of the family too.I have support from Marie Curie nurses who sit in overnight so i can rest,and the cancer nurse specialist.Try and get as much information as you can from the oncologist and the support team.We decided not to go to any more oncology appointments, therefore releasing the Doctors time to help other people who can have treatment. xx 

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.

Hi,So sorry to hear about your husband.Sadly my hubby passed away on the 8th of november 19. He was given 6 to 12 months but fought for 15..He was unable to have any treatment at all due to a life changing stroke, only a 1 in 5 chance of any recovery. Ampullary Cancer is very difficult to treat.In his last couple of months it had spread very quickly..He was 66.

Thinking of you both,I empathise with you, take each day as it comes and support each other, do what you can  and when you can..If I can be of any support, please dont hesitate to contact me.Wishing to all the very best and look after yourself too.. x

My father was diagnosed with Ampullary Cancer nearly two years ago, he wasn't offered the Whipple procedure as he had just finished treatment for leukaemia. The surgeon did insert a stent into the Ampule of Vater as there was a build up of bile which caused him to go yellow. Twelve months later that needed to be cleaned out and then a stent was inserted into the duodenum as the cancer had spread. He has since been diagnosed with melanoma as well. His skin is currently very sore due to a lack of vitamins and minerals being absorbed by his body. 
He has never been given a time scale for anything, but he also never had one person to talk to about the cancers or how they are affecting him.

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.