Pancreatic and liver cancer

[WilsonMilson]

Diagnosed today. I can’t believe it. I thought I had gallstones. The liver tumour is already 7cm, I can’t even remember what the pancreatic one was, it’s on the head of the pancreas. They did more CT scans to see further spread but I don’t have those results yet.
I just am in a blur.
My pain has been getting really bad the last few days and I’m worried this is it. I will have a meeting probably next week to discuss the plan for treatment -if any.

I’m not ready. I’m 45. I have a son and a lovely husband. I have elderly parents.

I’ve gone into hyper organisation mode. It’s madness really, but tonight I bought birthday cards for my son, husband and mum for the next 4 years. I’ve been transferring money to different accounts to make it more accessible. I’ve emailed my son’s school, I’ve started writing to do lists.

My mum is flying in on Friday and will stay with me. I’m just so devastated and so sorry for my poor son and husband. I cannot believe this.

Just sending you a massive hug x

Huge hugs Wilson ❤️

@WilsonMilson you are being so brave and strong. Just wanted to let you know you are in my thoughts and this is the first thread I come to when I log on MN.

Sending you lots of hugs and positivity ❤️

I'm so sorry you are going through this. The not knowing exactly what your diagnosis is or a treatment plan must be absolute torture.

Can you not make a complaint through PALs? Don't know if they have that where you are, but I would think leaving someone with something serious like this in complete darkness not even telling them their diagnosis is far too cruel and inhumane!!

Just wanted to say that there are a lot of clinical trials and the immunotherapy ones can be quite successful even for non-curative cancers (extend life by many years), and your age is also on your side. The low stats for some types of cancer are partly because the majority of people who get them are very old in the first place, so they're not a true representation of how a young person would fare. Please don't give up hope as that's what will keep you going. You can fight this!

Sending hugs xx

Hey Wilson, I’m so sorry to read about your diagnosis, I can’t begin to imagine what you and your family are going through and I’ve thought about your posts each day.

one thing I know you’ve referenced a few times is beating yourself up over not following up sooner. I’m not a Dr, and I’m not well versed in how to broach these sensitive topics so forgive me if this is clumsy. My FIL is a Dr and my understanding is that if these cancers are only detected once symptoms begin the prognosis is, more often than not, the same. Someone will likely come along to correct me, but my intention is to say - please don’t beat yourself up on not pushing this further last year

You did follow up ❤️

Hi Wilson, hope today is a good day ❤️

I am so sorry to read of your diagnosis and all I can suggest is hold your loved ones close and try not to think the worst. It is madness you have had to wait so long for a treatment plan and hope you get more information soon and a way forward. This period in limbo must be awful.

Creon will help with any indigestion type issues like gas and feeling sick it also prevents diarrhoea from not absorbing, sounds like you need it asap, I've had a Whipple procedure and I've lost the head of my pancreas so I'll be on it forever. I'm so sorry to read about your diagnosis, I know the pain from pancreas problems.

Thinking of you @WilsonMilson. I was dismayed to read that you’re still waiting to hear from the MDT. I’m surprised they didn’t discuss your case last Friday- how awful to make you wait another week in this dreadful limbo and in pain. 💐

Very sorry to read of your problems, stay strong and have faith in medical science.

You mention the rabbit hole of alternative protocols and treatments - resist this at all costs, I was reading an article just the other day that said that people drifting away from conventional treatments to "natural" ones was a major cause of premature death - have faith in the team looking after you, but don't be afraid to give them a nudge if you feel its taking too long.

Take care.

Thinking of you OP. Hope you have managed a good day.

This week must be torture for you op. Hope you’re feeling physically ok, and emotionally holding up as much as poss.

Wilson, Reading everything you have been through is so heartbreaking. You clearly have an incredible heart, and family and friends who adore you.

Sending you enormous hugs and love it love. 💖
When one of my best friends was diagnosed with cancer she asked all of us to send books that inspired us to to her for her daughter. That way of she didn't survive, her daughter would have a library of guidance from people who loved her. I loved that she did that.

So much love and prayers for you xx

I am so sorry to be reading this. It is awful that you are going through this. I am sending so many positive thoughts and wishes your way.

Thinking of you today Wilson. X

I hope you get news today @WilsonMilson x

Thinking of you wilson x

Dear Wilson, I read your post a few days ago and it has been on my mind ever since. I am saying a prayer for you and your family. Wishing you strength, courage and peace.

Hoping you finally get some answers today @WilsonMilson.

Hoping you receive the phone call today from the MDT @WilsonMilson xx

Thinking of you Op. Hope you get a plan in place after today's meeting.x

Sorry to read about the undesirable journey you find yourself now on,OP. x

Please don't get stuck on regrets: you need your energy instead for things you can do & make better now. You didn't do anything wrong.

Being totally pragmatic, even if you had a diagnosis much sooner that might have just put you on a different difficult path, not actually a better journey at all. You'll never know & you can't rewind so it's a bucket of madness to dive into by regretting the past. You made the best decisions you could at the time.

I am thinking of you also. Much love from a stranger x

Thinking of you today, hope you hear some news about your treatment plan. The wait must be agonising for you.

Hi everyone, heartfelt thanks for all the good wishes here since my last post. I have not been at my finest in the last couple of days, and didn’t really feel like writing.

The weather has been very kind though, and I’ve tried to stay offline a bit and not let in the horrors that lurk when you go looking on google. I’ve sat in the garden, watered the plants, and we went another drive to a different beach called Brown’s Bay, which was honestly just so beautiful. It’s quite ironic, but I see so much beauty in everything now, so much colour - I’m glad it’s spring and not a dreary January. I feel like I actually see things properly now, I don’t just brush past them in my hurry to get things done, to get on with work or work through a list of jobs. I’m more still and present, not irritated by traffic or untidiness the way I would usually be. I love the people around me so much, it’s almost impossible to convey how much my heart bursts for each of them. I feel like I’m a better human being, and wish I’d been like this without such a situation.

I have some progress. The clinical care nurse from the HPB team called me this afternoon as the MDT meeting was had today, she was so kind. The news was obviously not amazing - somehow I’d entered into a fantasy in the last 2 days that they were going to find it was totally fine and it was something benign after all, and we’d all laugh and I’d wake up the next day back to normal.

That didn’t happen, but it wasn’t completely hopeless. What they do know is that the primary concern at this point is the liver - the pancreas confusion was an enlarged aortic lymph node right beside the head of the pancreas, but they do not think this is pancreatic in origin. At this point they don’t know whether it is primary liver or secondary from unknown place. New info was that as well as one large and several smaller ill defined tumours, my periportal lymph nodes are also enlarged, and I’m just not googling that because I can’t bear to. Doesn’t sound great, but ok. I am now to have an urgent contrast MRI and PET scan, hopefully within the next 7 days.

So that is where we are, and we continue to take each day at a time and look for the good. It’s all we have, I guess it’s all any of us really have.