Declining a Whipple

Hi Suzanna and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the experience you're looking for but noticed that your post hadn't had any replies yet.

I put 'whipple' into the group search bar and found these previous posts which mention it. As you say, a lot of them probably talk about having the op but you may find some where people have decided against it.

It would be great if you could pop something about your dad's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hello Suzanna

I don't have experience of declining a Whipple. My husband was diagnosed with pancreatic cancer at the age of 66 in 2015. He did have a Whipple in April 2015 but the cancer either returned or was not caught fully and he died in January 2016. We never discussed whether he regretted having the Whipple or not and, in all honesty, we didn't know whether it actually prolonged his life.

People are put under a lot of pressure to have treatment for cancer and I also admire your father's courage in saying 'no'.

My own personal experience is declining chemotherapy after breast cancer. The increased chance of the cancer returning was so little increased by chemotherapy that I thought it not worthwhile for me although many people would say take anything offered.

I think if people decline to take medical intervention of any sort they should be supported.

Squeaky

Hi Squeaky

Thanks so much for taking the time to share your experience with me, it's very appreciated and I am sorry for the loss of your husband.  

Our understanding is that even with the Whipple recurrence within 2-3 years is 70%, it's only a curative action for 1/3 people.  Given that Dad would likely "lose" one of those 2-3 years recovering from the operation and then having Chemo it felt to us (and most importantly to him) that the potential benefit would be outweighed by the impact in terms of quality of life. 

I fully respect his choice, but did go through a period of guilt/concern that his reluctance to have treatment may have in some way been increased by feeling he didn't have enough practical support from us (our Mum died over 10 years ago so he lives alone, and myself and my sister are not local and work fulltime) however he has said this is not the reason. 

My only concern now is that whilst it's all hands on deck for treatment, I don't want him to just be cast aside for not having the surgery.  I will keep in close contact with his nurse specialists and make sure he is under palliative care.  

I hope you are keeping well and your cancer stays at bay for as long as possible. :-) 

Suzanna 

Hi Suzanna 

I don't know the success rates of the Whipple but I know that it is very low. And, yes, the recovery is a long time. Not just the physical side of recovery but the changes to lifestyle needed are quite big.

I don't think that your dad will be 'cast aside' but it is essential that you work out a plan with the clinicians.

In many ways, I can understand your dad's views and it is reassuring to know that his decision is not as you worried to do with lack of support from you and your sister.

My own cancer still at bay after eight years and I hope it stays that way.

Enjoy the time you have with your Dad.

Squeaky