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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

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

981 replies

Earlandmrsgrey · 19/08/2025 20:33

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.

OP posts:
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chatgptsbestmate · 05/09/2025 17:13

Sending you so much love ❤️

MissSmiley · 05/09/2025 17:16

Hi Op sorry you find yourself with this dx, as previously mentioned GISTUK can provide good support, I also contacted sarcoma UK and they actually spoke to the hospital on my behalf a couple of times in the run up to surgery. Mine was also a very rare duodenal gist, sarcoma uk did some research for potential outcomes worldwide for me and there were hardly any cases to come up with a % chance. 3.5 years on from surgery I'm still cancer free. Wishing you all the best.

Beachtastic · 05/09/2025 18:26

I like the sound of your hydrangea project. Maybe there is a special fabric dye that will make it turn pink at the slightest hint of water, like all the hydrangeas I've ever known 😊

anyolddinosaur · 05/09/2025 20:16

Do you ask about the Marsden? In case it helps I found this in one study of EGISTS. "most so called eGISTs represent apparent eGISTs that should have arisen from the outermost muscle coat but have lost their contact to the point of origin due to extensive extramural growth pattern" So most suspected EGISTS are actually just GISTS. You are still rare enough that you might be appearing in a medical journal as a case study.

Wishing you good news on Monday, although I fear there will be more waiting for a biopsy and then the result.

VividGreen · 05/09/2025 20:36

What happened to the mass in your pancreas? If not tumour what was it?am I the only one questioning these differing comments?sincere apologies if wrong.

caringcarer · 05/09/2025 21:07

I'm so very sorry you are having these symptoms. My Mum died from PC 11 years ago and she lost so much weight. She eventually got given a scan but by then it was stage 4. She was diagnosed at the very end of August and told she might have 6 months but died 7 weeks later. You might have caught it quicker. Ask if a Whipple procedure could be possible. It wasn't possible for my Mum but it depends where the growth is. You might be able to be treated. In the meanwhile do anything you always wanted to do. Spend quality time with your DC and DH. Try to rest and eat properly to try to gain some weight. 💐

Earlandmrsgrey · 06/09/2025 09:13

anyolddinosaur · 05/09/2025 20:16

Do you ask about the Marsden? In case it helps I found this in one study of EGISTS. "most so called eGISTs represent apparent eGISTs that should have arisen from the outermost muscle coat but have lost their contact to the point of origin due to extensive extramural growth pattern" So most suspected EGISTS are actually just GISTS. You are still rare enough that you might be appearing in a medical journal as a case study.

Wishing you good news on Monday, although I fear there will be more waiting for a biopsy and then the result.

Yes, I read that study. I'm going to stop reading them now though as so many are quite depressing and are outdated as they don't involve the more modern drugs. But the scientist part of me loves all the reading!

OP posts:
Earlandmrsgrey · 06/09/2025 09:18

VividGreen · 05/09/2025 20:36

What happened to the mass in your pancreas? If not tumour what was it?am I the only one questioning these differing comments?sincere apologies if wrong.

So, it turned out to be a huge tumour that is pressing against lots of my organs. The ultrasound suggested that it was from either the left kidney or the tail of the pancreas. The CT scan which is much clearer showed that it was just touching them but not attached to them. At the moment they can't really work out what it is attached to. Hence a long waiting game so that I can be seen by the right specialists.
I should probably get Mumsnet to alter the title!

OP posts:
wantmorenow · 06/09/2025 09:36

Sending love and thoughts. Hopefully the experts will come up with a plan for treatment now they have results.

Filigreebetts798 · 06/09/2025 09:41

Earlandmrsgrey · 06/09/2025 09:18

So, it turned out to be a huge tumour that is pressing against lots of my organs. The ultrasound suggested that it was from either the left kidney or the tail of the pancreas. The CT scan which is much clearer showed that it was just touching them but not attached to them. At the moment they can't really work out what it is attached to. Hence a long waiting game so that I can be seen by the right specialists.
I should probably get Mumsnet to alter the title!

I’m glad that they have at least started to give you some answers Earlandmrsgrey.

But I’m so very sorry that they have found a large tumour. You must be out of your mind with worry.

I hope this waiting game can be over soon so they and you know exactly what you are dealing with 💐

mechanicalpencil · 06/09/2025 09:41

Oh OP, I am so sorry to read your thread this morning.

Sending you much strength 💜

Your inner strength really shines through your posts. You sound amazing.

I loved your owl project. How is the hydrangea one coming along?

Keep posting here, we are here for you.

Crikeyalmighty · 06/09/2025 09:56

Thinking of you - you sound a fabulous person - hoping with all my heart that you are a candidate for treatment

dotdotdotdash · 07/09/2025 21:52

Lots of love to you @Earlandmrsgrey. Don’t know how you are feeling but I hope you’re getting rest and the pain relief is doing its job. Not great news but you and your family keep pushing for answers and timely treatmentX

Amybelle88 · 07/09/2025 22:35

I’ve had stage 3 pancreatic cancer and I’m now completely fine. It’s a very, very difficult diagnosis but it CAN be cured - I’m living proof - so please hold onto hope - you don’t know until you know.

As a rule of thumb, tumours in the tail of the pancreas tend to be more treatable than those in the head, too.

hollyblueivy · 08/09/2025 07:52

Hi Op, I’m so sorry that they have found a tumour. How are you feeling now you know? That waiting period is awful isn’t it, do they have a plan of action for you so you have something to focus your energy on?

Earlandmrsgrey · 08/09/2025 17:25

About a year ago a read a book titled 'When Will There be Good News?'. It was just a bog standard detective story, nothing special, but the title really upset me. I guess with Ukraine, Gaza, Sudan etc it felt really depressing. Little did I know that I would soon be living that title.

However, I have my first bit of Good News!!! It was just a cyst resulting in 12ml of fluid and one sore and deflated boob!

Just one thing to deal with now...and a hydrangea project.

Xx

OP posts:
Beachtastic · 08/09/2025 17:27

Oh wow, that is wonderful!!!!!!! So delighted for you.

Here's hoping for plenty more where that came from... (good news I mean, not mystery lumps!) 💗

Igotjelly · 08/09/2025 17:36

Earlandmrsgrey · 08/09/2025 17:25

About a year ago a read a book titled 'When Will There be Good News?'. It was just a bog standard detective story, nothing special, but the title really upset me. I guess with Ukraine, Gaza, Sudan etc it felt really depressing. Little did I know that I would soon be living that title.

However, I have my first bit of Good News!!! It was just a cyst resulting in 12ml of fluid and one sore and deflated boob!

Just one thing to deal with now...and a hydrangea project.

Xx

That’s absolutely wonderful news ❤️

Typicalwave · 08/09/2025 18:15

Earlandmrsgrey · 08/09/2025 17:25

About a year ago a read a book titled 'When Will There be Good News?'. It was just a bog standard detective story, nothing special, but the title really upset me. I guess with Ukraine, Gaza, Sudan etc it felt really depressing. Little did I know that I would soon be living that title.

However, I have my first bit of Good News!!! It was just a cyst resulting in 12ml of fluid and one sore and deflated boob!

Just one thing to deal with now...and a hydrangea project.

Xx

That is good news. One less worry on your shoulders

BoilingHotand50something · 08/09/2025 18:34

Been thinking of you and am delighted to hear this update.

Abthdust · 08/09/2025 18:38

SO PLEASED for you!

Filigreebetts798 · 08/09/2025 18:43

Phew! That is such good news op! Really happy for you! I hope your mum is delighted too!

greenold · 08/09/2025 20:33

Hey OP, I've been following this and hoping for good news for you - fantastic to hear your update today x

Flamingmentalcats · 08/09/2025 20:36

Thank goodness, one less thing for you xx

Muchtoomuchtodo · 08/09/2025 21:23

That’s great news @Earlandmrsgrey. 🌺