Mum - cancer was worse than originally thought.

Hello,

I'm sorry to hear this and fully understand the worry this brings, esp as you are waiting on further news.

I wonder if they will go ahead with the plan of chemo? Do you know what type they were discussing for her?

Do you know which lymph nodes are affected? Without some more info, its hard to say what they will suggest. 

Its not nice for your poor mum being stuck in hospital, I do hope before long you all get more clarification and a way forward.

Waiting is actually the hardest part, as you feel in the dark and full of unanswered questions. The nurses at PCUK are very helpful, may be worth a call or email to them for some advice.

Keep us posted and sending love x

My dad recorded the phone call so me and my sister had all the information, I think its alot for my mum to take in. 

I've just listened to ot again some of it was hard to understand but what I got from it, the doctor said it was larger than originally thought the cancer was  closest to the edge at the back near the aorta 2mm off.. but they removed the vein it was in ( I guess there was a vein before the main artery) , and it was in more than one lymphnode they could have stated where exactly but it had a bit of echo so hard to hear, she didn't say how many lymphnodes, im guessing they would have removed some when they removed the head of the pancreas, she then said they will continue with the treatment plan of chemo 12 weeks from her op, but not sure what kind she will have untill a plan has been made with the oncologist.

It's so difficult as she isn't allowed any visitors, I havent seen her for over a month and my children miss her dearly. 

Yes I agree it's the worst bit being in the dark, it feels like we have taken a step backwards with the new news, I was feeling hopefull before but now I'm not so sure what to think. 

Thankyou for your kind words, I will definatly look in to PCUK and keep you updated.x

Hell Luciee

I am sorry to hear the tumour was larger than expected.

I am not a medical expert but I have learned that with cancer surgery lymph nodes are removed so that the medics can check if cancer has spread into them.

After a Whipple most patients are given chemo to try to mop up any cancer cells that have escaped surgery.

With your Mum I think the medics will wait to see how she recovers from the surgery.

It is a worrying time for you all so just try to take one day at a time.

Squeaky

I think I may ring the lady that phoned yesterday as she said if we had anymore questions we can, it sounds as if they said 7 or 8 lymphnodes but unsure, I think I may feel better knowing a few more questions, but I also don't want to tread on my mums toes, I was thinking maybe she didn't ask because she doesn't want to know. So I will speak to her first, 

Thankyou so much for your advice and experiences x

Hi again, its tough when as a concerned family member, you naturally want to know the prognosis yet feel unsure what to do and who to ask. Information and more accurate details can be very slow and its horrible when you don't know what to anticipate, without being too much and treading on toes. Sometimes- my dad is like this- the person with the cancer prefers to know minimal amounts of info, as they can take it step by step and not be overwhelmed and potentially, can cope a little better. But for us folks, worried about  a loved one, that can seem hard to accept, if not very irritating as of course its always on our mind. For my own sake, I've learnt to take a step back as Dad's not one to discuss it and hates the fact that he is effectively out of control, of what is a frightening and hard to predict illness. Though I have to say, its frustrating when tests and results and further appts seem far apart and naturally during the waiting times, its very stressful.

Have a chat to your Mum and see if she's happy with you discussing it with her team, hopefully then you can find out more and a likely treatment plan. And do fill us in, we all like to support eachother, it can feel lonely. My dad also has PC in his lymphs, his has reoccurred after Whipple a few years ago and we feel uninformed and guessing too xx

any more news Luciee?

Hi onelove,

I have waited to speak to her about it as she's in hospital still, she's not managing to eat anything and has been put on a tube that's feeding her.

I've managed to calm my nerves and me and my sister are going to wait to speak to her when she's home and feeling better.

How was your dad after his whipples, and healing time she's fine in herself she just can digest anything. 

I'm always here if you need anyone to chat to, your journey sounds so similar, hope you and your dad are ok x

Ah, your poor mum, she has a lot to contend with and you too, as her support. I hope she improves and can be more informed of what is happening and a way forward.

 I hope you manage to have the conversation soon.

Dad had his whipple op in the summer of 2019, shortly before the pandemic reared its head followed by folfirinox chemo and up until spring of 2021, was doing pretty ok- still had a bit of fatigue and wasn't fully recovered- I'm not sure you really ever do- but he was generally ok and doing almost as much as  he did before the illness. He's very determined not to identify as an 'unwell person' but this can be bloody frustrating frankly, as he hides alot of how he feels and won't talk about it.

At a routine scan, it was revealed that he had a lung nodule, very small but there and also a recurrence on his para-aortic lymph nodes. He hadn't noticed any clues to give away something was going on. His kidney cancer has been present for a few years but stable, so they just watch that,  as the PC is more of a priority.

He has just completed 18 rounds of gemzar and abraxane chemo regime- more of a palliative measure- so is recovering from the effects of that and we will see how he goes in the coming weeks. He has his scan very soon and we will know the results at the end of the month, so the waiting game is so hard as you are left guessing, and dreading the worst. 

To be fair, given most stories and outcomes around PC, he's doing very well, but we are aware that at some point going forward, he will become more unwell. Until then, its hard to remain upbeat and act as 'normally' as poss, because its always on your mind. 

At the moment, we are just biding our time- quite stressfully- for the next scan results so we know what's going on and to discuss potential treatment options, such as they are. He wants a rest whatever it shows, as he's had so much chemo and needs a break.

Thanks so much for responding, to be honest, not many seem to be in this position or willing to converse, so its great to chat to someone who finds themselves in a similar position.

Do let me know as you know more. I hope your mum feels better soon and can manage some food to build her strength up.

Take care xx

I can imagine its been a long roller coaster for you over these past couple years. You, your dad and your family have delt with so much!

I have everything crossed that the next scans bring some positive news. 

My mum is so similar, it's like she pretends it's not happening and would rather ignore it, this whole time she hasn't cried once, which I understand is a coping mechanism, or she's thinking she's protecting us. But It's easier to support them if they you in.

I hope your dad has a restful break that he certainly deserves.

Please keep me updated with your dad to, don't hesitate to message anytime.x

Yes, certainly is a rollercoaster. I would much rather deal with facts and honesty, rather than the slightly skewed idea of protection from Dad- the continued not knowing and guessing is far more traumatic actually, than knowing what to anticipate and speaking openly. I  know he's that way partly due to fear of the unknown and feeling out of control, however mental and emotional health wise, its very difficult.

Fingers crossed we both have clearer answers very soon so we can continue supporting them and feel better informed.

Keep in touch xx