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.

Thinking of you OP. I have cancer and having a scary post surgery meeting next week. I have to remind myself- I’m needed here, now. Each time I do it I calm down. Hang in there, everything crossed for you

Thinking of you OP 🫶🏻

Just googled. It could even be benign !

I agree... Enjoy the birds...treat them to xtra seeds and see if new ones appear..
Treat yourself too and have some special treats and a little duvet time in-between wouldn't be a bad Idea!!
Be kind to yourself and enjoy the his lovely weather...
The 1st will come whatever you do, so go with the flow and keep positive... We are all with you now!!!! Xx

Hoping you get more answers soon x

Well the prognosis looks better than pancreatic cancer but having to wait another week for them to decide what to do really sucks.

Just came here to send you thoughts and positivity from one stranger to another.

🌻

Sending positive thoughts your way OP. x

I hope you will hear reassuring news soon. Oncology science moved on a lot lately.

A handhold and hopeful thoughts to you OP. Be very gentle with yourself.

Blinking Bank Holidays. There’s enough of them that I always wonder why MDTs are held on Mondays.

Keep enjoying the simple things in life. One step at a time until you know more. If MIL is a step too far for now, can you book yourself into a nice hotel for the night with a friend?

sending non- catastrophising (it must be a word!) thoughts xx

Thinking of you! There are all kinds of oddities that can happen. My friend had very similar symptoms, was told pancreatic cancer then having seen a documentary his sister suggested a private mri (rather than the cts he’d had) and it was an infection, huge mass of pus basically. 6 months of antibiotics late he’s now back at work. Without the mri he would have been put on chemo

I have nothing to add but best wishes and a shedload of hope for you.

You have all my prayers and hope for a 'manageble' condition, I say that as a bladder cancer patient that initially feared the worse but I'm doing really well x Don't think too far ahead, one hour at a time xxx

If it does turn out to involve your pancreas a Facebook thing today led me to this report on a vaccine that could be worth trying

www.theguardian.com/science/2025/aug/11/off-the-shelf-vaccine-pancreatic-bowel-colorectal-cancers-study

Hi @Earlandmrsgrey . How are you feeling? Keeping fingers and toes crossed for some fast answers and a brilliant outcome. Thinking of you x

Just want to add my strength and love and (and my dear mum would say) a positive reiki!

Sending love and positive thoughts - the waiting is thé worst 😔

So sorry. My mum died of this and it is very fast moving once detectable as I am sure you know. It also hugely frustrating that it is still one of the most undiagnosed and fatal cancers, even after 20 years when my mum died of it. I live worrying I will also get it as I have seemingly similar health to her - pernicious anemia which weirdly does seem to have some links although so far no one has done much research.

With your mum, I'd meet in person and say firstly that it's not great news but you don't have a lot of detail yet. She will know the score once you explain. I'd suggest you do a lot of things you've always wanted to asap and really make the time to prioritise yourself. Hugs.

I've had surgery for a duodenal GIST, I'm cancer free now. Try sarcoma UK for support if it does turn out to be that, you should be treated at a specialist centre with it being a rare cancer. PM me if you want to chat. I had mine 9 years before surgery, it was very slow growing. Big hugs

Bless you I truly understand how you feel having had a tumour detected in my pancreas too. That was 14 years ago. My tumour was also in the tail and I had a distal pancreatectomy where the half with the tumour was removed Cured no chemo radiation or anything. The truth of the matter is that there are many many different tumours some nasty and some not. Mine was a pseudo papillary neuro endocrine tumour. They couldn’t decide if it was malignant or not so whipped (this is a pun IYKYK) it out. Yes I too was terrified and it’s taken me years to come to terms with it. It doesn’t have to be bad news

I've just read your thread and sending you virtual hugs.

I've been diagnosed with a very similiar (could be the same - won't know until pathology results) cancer to what my dad died from.

My siblings and mother are going through alot of emotions. It's bringing everything back. And they feel.some guilt (I don't get why).

And as much as you want to protect everyone - you have to put you first.

I hope there's a cunning.plan of action soon for you.

I've told my family which wasn't as hard as I first thought. We're not a close knot family and there wasn't much emotional support but I expected that. As I said to my friend, if they had offered me emotional support I would have been worried as to what was wrong with them!

I need to go in for another CT scan later this morning. This time on my lungs as I keep coughing, but only in the afternoon and evening. Absolutely fine at the moment.

The wait for next Monday is brutal though. It's horrible feeling left in the dark whilst others know more about what/why/how to treat. Once I have finally seen a team regarding my future outlook and treatment I shall complain about how I was told. On Wednesday my GP sent me to A&E for hydronephrosis, A&E were great and did my first CT scan. I was then told I would be admitted to sort the kidney issue out. It was about another 4hrs before a Dr saw me and told me I had a very large GIST. That was it. That was me being told I had a form of cancer. Now you can go home. That's not right is it? All I've had since then is Dr Google... fortunately I've found the GIST UK website and joined them.

I'll keep updating but I think I might start a new thread now that we know it's not pancreatic.

Did you get through your MiL visit, or is that next Friday?

What a rough time. I hope today’s appointment brings you some useful information. Maybe a call tomorrow to a relevant consultant’s secretary can bring you some news, even if not the full decision on the treatment plan.

Oh OP, I'm so sorry. It must be dreadful just having to get through the next week or so without any clear understanding of what's going on. And you're right, the way you were told was pretty awful.

Like you, I'd be scouring Google (for better, for worse)... you probably already found this report on successful treatment of an absolutely enormous GIST!

pmc.ncbi.nlm.nih.gov/articles/PMC6186361/