Prognosis recurrence of PC

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Hi all

Hope everyone here is well and doing as best they can!

Me again, for those who haven't read my previous posts, my dad was diagnosed with both PC and RCC in the spring of 2019. He had the Whipples op and subsequent Folfirinox chemo and was doing well, until a recurrence this spring. The recurrence is in his para-aortic lymph nodes and a spot on his lung.

The kidney cancer thus far has just been monitored but appears stable and the pancreas side of things has taken presidence.

He's been having gemzar and abraxane regime since the summer, with few side effects and aside from an episode of infection, has been doing very well- walking, out and about and being reasonably normal with his day to day life. Yes, he does get more fatigued, his appetite has been affected and he has had a little weight loss but otherwise doing well. He's a fit and active 65 yo.

We know that the long term outlook isn't good, however we have no real idea in terms of life expectancy and as he's doing so well currently, that seems odd to think about right now!

He has been told its months as opposed to years, but of course how long is a piece of string -I know it differs quite a bit. Many stories I've read seem to say that its fairly rapid in terms of deterioration- at the moment, dad is fine-ish.

So, with this in mind, I wanted to pick your brains- the experts and those who have gone through, or are in a similar position.

After recurrence, what happened to your loved one? How was their health and when did you know things were going more downhill? What were the early signs?

What was the time frame?

We feel a little in the dark- dad won't discuss it, or ask questions so as a family we feel on continual tenterhooks, with a cloud hung over us.

I know there's no real answers, as its individual but hearing from others in the same boat is useful, in terms of overview with symptoms, coping, longevity and what helped them...

Can anyone tell me their story with this please?

Thanks so much xx

MrsBJH over 2 years ago

Hi Onelove3. I'm so sorry to read of your Dad's recurrence. I'm from a different group and just dropped by, I noticed you've not yet had a reply. You're very brave to write this post, my heart goes out to you. We always hope above hope once treated it won't come back, but when it does we need to prepare.

I hope some members here will be along to chat soon but in the meantime it may be a good idea to join our Supporting someone with incurable cancer group where you'll be able to chat to others going through the same journey.

You can also call our Macmillan Support Helpline, freephone number shown below, for advice.

Sending you and your family hugs, B xx

Womb cancer forum

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

Onelove3 over 2 years ago in reply to MrsBJH

Thank you- I'm hoping someone with experience of this will offer some words of wisdom!

Rach1052 over 2 years ago

Hi. My dad was diagnosed in January 2019 with PC. He also had the whipples op and then had folfirinox chemo. All was going well until this year when dad received further chemo for a spot on his liver. They were swapping and changing his chemo throughout this year and then received a blood transfusion in May. Unfortunately the chemo no longer worked and this was stopped end of May and dad passed away in August. Main noticeable symptom was weight loss as dad had stopped eating and drinking. He also had depression. We actually didn’t know until last minute that the cancer had returned so we found out on the 11th August it was terminal and he passed away on the 14th. Dad didn’t want us to know about the recurrence which has been really difficult for us to come to terms with. I hope this helps somewhat. If you want a chat at all let me know :) best wishes to you and your dad x

Onelove3 over 2 years ago in reply to Rach1052

Hello and thank you so much for your reply!

I'm so sorry to hear about your Dad, thank you for letting me know your story.

My dad finds it hard to talk about- he doesn't identify as an 'ill person' and continues on as normally as poss- which is no bad thing in some ways, but also means we feel somewhat confused and in the dark about expectations and knowing what signs to be aware of.

We are waiting on the results from his ct scan, his appt is quite a way off so we are none the wiser about his chemo response thus far. He is on abraxane and gemzar- what chemo was your dad on for recurrence? I know you mentioned it changed.

When it returns, is it automatically considered stage 4 and terminal?

He has been told months rather than years.. but that is very vague and we know no more than that. No staging given so far, or size. The recurrence in his para-aortic lymph nodes and a tiny spot on his lung. I feel like we know the bare minimum.

Dad does look pale and very thin, but his appetite atm varies and some days he feels pretty ok and others he is tired and goes to bed for a while. No bothersome side effects otherwise, just manageable tiredness, weird feeling in his mouth and a bit of neuropathy.

We are almost waiting for him to take a downhill turn, but other than a scary period of infection, he is doing pretty well.

He isn't seeing oncology until Nov, five weeks after the scan so now its the horrible waiting game.

That must have been tough that your Dad kept quiet about the recurrence, but I guess he wanted to protect you from the inevitable and knowing that his time was likely limited.

Thank you again and if you think of anything else that may help, do let me know!!

Take care x

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