Likely pancreatic cancer. How do I tell my mum that I'm probably dying from the same thing that killed my father?

[Earlandmrsgrey]

As the title says. Been suffering with bowel problems/pain for sixth months. GP decides it must be IBS as bloods are fine, it's not coeliac disease and multiple fit test are negative. I'm not sure and carry on in more and more pain until I eventually feel a lump just under my ribs on the left. Have to wait ages to see another GP but he has a feel and sends a referral straight off for an urgent ultrasound. Ultrasound results show hydronephrosis of the left kidney with a possible tumour and more worrying of all is a mass in the tail of the pancreas.

I've not seen anyone else yet so still early on in the diagnosis but I know it's not good. I've been feeling more and more lethargic, I'm in more and more pain, my back is agony and I'm losing so much weight.

Fifteen years ago my beloved father had the same symptoms, he knew he was dying months before diagnosis and I was the only one who believed him. Eventually he got the diagnosis and lived for another fifteen days. I think I have longer than that as I'm still functioning fairly well but I know the outlook will be poor.

How do I tell my mother? I spoke to her a few weeks ago saying that I was unwell. All she could say was "please don't let it be the pancreas." I just want to protect her, that's who I am. Always the one to look out for others before herself. Then there is my husband who is not one to cope and then my young adult sons.

So sad.

Do you have access to anyone to talk to? If you work sometimes you can access a number of therapy sessions to enable you to get things off your chest to an independent person.

I'm so sorry you are having to deal with this worry, @Earlandmrsgrey and I recognise that telling your mother is front and centre of your concerns.

You know that pancreatic cancer doesn't have good survival rates and I won't insult your intelligence with platitudes. But treatment is better today than when your DF had it. I lost my lovely sister to the disease quite recently, but she was able to live pretty well for over a year post diagnosis (expected 3 months), with the pain and side effects really well managed. That time enabled her to put in place arrangements for her loved ones, and to mend broken relationships.
You don't yet have a diagnosis so don't make the worst assumptions. But if it is as you fear, the earlier you can tell your mother, the more time you will have afterwards to share together what time is left as well as possible. Your time is precious but you can't use it well while carrying that secret.

My father died 30 years ago of a different cancer. He wasn't up-front with his family and concealed both his diagnosis and prognosis until within a month of the end. As a result my mother was left with huge unresolved issues and having to navigate the world without answers. She was so alone, having her suspicions but no outlet to share them with. By putting off the difficult task of telling her and his adult children, he left her emotionally high and dry and we fell apart as a family. Painful as it is to feel you are shattering her world with bad news, not telling your mother about a grave situation isn't a kindness.

There are professionals whose role is to assist people navigating illness, end of life and other devastating troubles. Your parish priest or hospital chaplain should be able to help if you want a spiritual aspect in support. Alternatively Macmillan will be a good source of advice for preparing to tell bad news to loved ones. But please remember that doing this badly, or clumsily, or even insensitively is still a hundred times better and kinder than putting it off.

Sending you ever so much love and hopes for a better result.

Unfortunately for pancreatic cancer this simply isn’t true.

I’m so sorry OP. My Dad passed from this illness too. Wishing you the best and peace if the best is not possible.

I wish I had something helpful to say, but I don't. I just want to send you and your family a huge hug. It's just not fair and I'm so sorry xxx

I'm so sorry as I too lost my dad to this in 2021. I will keep everything crossed for you that it's not too late and something can be done for you. I would suspect your mother is trying to prepare herself already for your bombshell, although as a parent it would be totally devastating news. I wish you all the best for whatever lies ahead.

My relatives just finished her chemo for pancreatic cancer after removal of two lumps and is expected to make a pretty much full recovery with expert rations of living to late 80s So it can happen.

There have been so many improvements in care and treatment in the last 15 years that you could find your prognosis is vastly improved. I do hope so.

Sending a prayer of hope to you x

Sorry to hear this OP. I had cancer treatment young (also after being buggered about in primary care), was diagnosed with a genetic predisposition to certain cancers and have an oncologist for a DH, so I invariably well up when I read posts like this. IF it's pancreatic cancer - and I understand it's less inheritable than other types of cancer - I am sure your mum would want to know even though it's probably her worst nightmare. I would want to do all I could to support DS if I was in her position.

Like PP's, a close friend and former colleague died of this illness. His "palliative" treatment actually tackled the cancer effectively enough to allow him to have a whipple procedure, and he survived longer than anyone expected. There are practical things you can do - in your position, if the CT confirms cancer, I would get myself referred to a tertiary cancer centre, like the Marsden or the Christie. If you are anywhere near the NW then Prof. Dan Palmer is a good bet.

A random internet stranger is rooting for you. X

I’m so sorry OP, sending love your way.

Oh @Earlandmrsgrey , I have such an urge to offer platitudes and play down your fears but I don’t think that will carry any weight with you. It’s a rare cancer and even more rare that it’s inherited so I hope the further tests show something less serious and that you get a diagnosis and treatment very soon.

Do whatever is best for you. If you’d rather not share your worry until you have a diagnosis then don’t.

I very much hope you get good news soon x

I hope it’s not the outcome you suspect - in your shoes I wouldn’t tell my DM anything until I had a definite diagnosis and prognosis.

What a crap situation.

I don’t know whether this is possible, but could you speak plainly to your mum and husband and say that you know they will obviously be desperately in need of support and ask them to make an effort to find some. Suggest they look at the different support groups, and see if friends in their lives can step up in helping them access support.

I am also a coper, and the strong member of the family. It is unfair for us to be supporting others when we are the ‘patient’ is you like.
When my time comes, I am determined to be better at insisting they step up rather than relying on me to make things easier for them.

A very good friend of mine sadly died from pancreatic cancer a few months ago (also in the tail).

But the palliative chemo worked really well and immensely relieved the pain, so much so that she had 6 months where the only painkiller she took was paracetamol. Although the chemo took it out of her, she has periods where she could eat out and have fun with her family and friends.

She died a year after diagnosis.

Having said that, she was stage 4 and the cancer was surrounding a large blood vessel, so inoperable. The whipple procedure is an option in many cases.

In addition, some cases have certain profiles that mean immunotherapy is an option. There is massive progress going on in this area at the moment!

So, take it one step at a time and don’t assume the worst. I know that is easy for me to say, but I just wanted you to know that there are many reasons to be more optimistic.

Do you think maybe your grief is affecting how you perceive your symptoms?and results that could indicate.

Sending love

I'm so sorry about what's happening to you. I lost my brother to pancreatic cancer a few years ago, so I can only imagine what you must be thinking and feeling now.

Hoping you get a different diagnosis and effective treatment what whatever you do have xx

Unusual to have a scan on two diff organs, was this nhs?

I’m praying for you. Not only that it’s not pancreatic cancer, but if it is, it’s resectable.

I'm so sorry. Personally I'd say nothing until I had a firm diagnosis and treatment plan. However meanwhile I'd be sorting out my paperwork whenever I felt well enough. That would mean things like looking out any insurance policies, writing down passwords for any accounts solely in my name or putting them into joint names, writing a will if you dont already have one, writing letters to your children for major life events. If you dont have grandchildren yet your children will appreciate knowing things like how your pregnancy went, funny stories from when they were little, stories from your own childhood.

If it turns out not be as bad as you fear or it's possible to operate and give you more time you will still be doing something useful.

You can fins support groups here https://www.pancreaticcancer.org.uk/support-for-you/support-groups/ and more support here https://pancreaticcanceraction.org/

Hoping it turns out to be less serious than you think.

I lost my DF to Pancreatic cancer too, and then his sister a couple of years later. The prognosis was vastly different - my DF lived for 3+ years (can't remember exactly how long, but I do know he was diagnosed before 2013 and he passed in late 2017). They removed the cancer but it eventually came back. His sister lived a few weeks, similar to your DF. Point being, that even if it does turn out to be PC, it doesn't mean it will be quick like with your DF, and I imagine there are more treatments and trials available now.

Very sorry for your plight OP, I would tell your DM as soon as possible, but maybe wait for the exact diagnosis first? either way, it won't be easy - sending all my best wishes.

I will keep you in my thoughts op that this isn't pancreatic cancer. I lost my mum to this 5 years ago, but she had 2 good years after diagnosis. Although outcomes are not good still as you know, there are some clinical trials that do seem to be making a difference for some, including immunotherapy trials. So if it is bad news, push for getting on to a clinical trial.

I have nothing to add but didn’t want to read and run. I just lost my own mum to pancreatic cancer in June. She died 3 days after diagnosis. I’m so sorry you’re going through this. I am sending you love, strength & prayers 🤍

Sorry, what?

So sorry to read this.

I do hope it's not.

My Dad was diagnosed with this after a couple of scans/x-rays. He was 87 and went into hospital with pneumonia etc - surprisingly he came out - but with a terminal diagnosis of about 4 months.

6 months later still going strong - 'I'll sue them'

We did some research - pancreatitis can present itself as something far worse. He'd refused any further analysis.

He's died now but of unrelated COPD + Parkinsons.

All the best.