Is there any hope?

[Me Mouse]

We’ve been on this crazy journey for 18 months.  My husband was lucky, PDAC in tail, caught early enough for curative surgery.  
 

He did surgery.  He was in the 20%.   He did 12 rounds of highest Folfirinox cocktail.   Consultant said, all gone.  Yes, we believed that. 

Pain never went away.  Scans were inconclusive and dismissed as ‘muck’ from surgery.  
 

We’ve had 2 months of ‘pain free’. 
 

He was never pain free.  
 

And after 6 scans being told its ‘muck’, no one (but me) believing the pain, watching the weight drop off, not able to eat, vomiting, he reached crisis.  
 

We knew it was back.  Weeks before Consultant reacted 
 

Only a v stern call from a v caring Consultant convinced him to go to hospital    

Yeah it’s back.  And it’s nasty.   No cure.  No idea how long we have him for.  
 

So there is no hope right now for PC. None at all.  It’s a death sentence.  
 

My beautiful, amazing husband was told he’d beaten this crappy disease.  But that wasn’t true. And yes, I hate that he was given false hope. 
 

He has reached out to our MP, he wants to get funding increased to fund a screening research program.  Early diagnosis at ‘in situ’ stage is key. 
 

No one should go through this.   PC is a killer and will remain so unless early detection is routine 

 

for me, I was relieved that he was in the 20% curative stage.  But if I’d known there was an 80% chance it’d come back within 2 years.  I’d question the point of painful surgery, awful chemo…  quality of life is key, not surgeon ego. 
 

Don’t know how long we have my husband for.  Can’t get a straight answer from anyone.  No one will give a clear answer.   
 

So yeah , there is no hope.  None at all. 

[Jj24]

So sorry you are going through this. I lost my husband in June and we were never given any hope but he had hope almost to the very end. It is such a brutal, fast moving and stealthy disease. We thought he was doing OK until 2 weeks before he died but things moved really quickly at the end. He died 6 months after confirmed diagnoss, 8 months after suspected PC. I hope you have lots more time with your husband, make the most of every day together. Sending you lots of strength for the times ahead. 

[Skippy]

I can understand your anger. It is so very distressing.  I've been in your situation. (Twice). 3 yrs ago I'd never even heard of PC. 

I've thoughts that Dr's give out just so much info in accordance what 'they think' a Patient can deal with, at the time; giving the patient some 'hope'. We too had the swift nhs conveyor belt, a Whipple op; a long recovery back to up to fighting weight, then necessary follow up chemo to mop up any stray cells.  Pre op the day before he turned jaundiced, so speed was essential. He needed that 'hope' to get through it all.  I've read that many can manage living with it 3/4/5 lucky years. but your right, it's vicious. I do think back now all it gave was extra precious time but that hope was so necessary. Without the treatment I don't think he would have survived as long as he did. He never regretted the opportunity of the whipple operation. 

 

We hope for better studies in this area. 

I am thinking of you. 

 

 

On reading all sorts - blood tests can give 'false positive readings' / lesions can be benign tumours give false readings. Sadly our Sciences haven't mastered much. 

[Suzanna]

Hi Mouse 

 

I am sorry to hear what you have been going through … I lost my husband 12 years ago from this dreaded cancer . He was 45 , and have now been diagnosed myself … unfortunately early detection is difficult. I was originally diagnosed with duct dilation which was picked up randomly on a Ct scan for something else .. this prompted an  MRI , pet scan and two biopsy , one ended up causing me pancreatitis. The biopsy came back ok so a follow up CT Scan 3 months later showed slight changes .. They then decided to follow up in 6 month scan in April this year which showed a lesion on the body of the pancreas . The biopsy confirmed pancreatic cancer . They are hesitant to operate until a lesion appears because it is such a major operation to have if cancer isn’t present..  I am now awaiting chemo after having the body of pancreas and spleen removed an can only hope for the best .

 

 

[Jj24]

I am so sorry to hear what you are going through now after the trauma of losing your husband. I hope they have caught it early and you are one of the lucky ones. Thinking of you and sending strength and positive thoughts x

[Flossie]

I am so sorry for you and your husband it’s such a terrible frightening time.

i have just experienced a similar situation, 18 rounds  of Folfirinox, then the whipple 12 weeks later it’s in his liver, sadly Alan passed away on Tuesday, we thought they had got it all, looking back now i also wonder should he have not bothered with the whipple as he was in a lot of discomfort with pain, they never really got him pain free. 
just carry on loving your husband, spend as much time together. X

Suzanna so sorry to hear about your diagnosis, praying for positive treatment for you x 

[rhi]

On 9/2/2024 at 12:36 AM, Me Mouse said:

We’ve been on this crazy journey for 18 months.  My husband was lucky, PDAC in tail, caught early enough for curative surgery.  
 

He did surgery.  He was in the 20%.   He did 12 rounds of highest Folfirinox cocktail.   Consultant said, all gone.  Yes, we believed that. 

Pain never went away.  Scans were inconclusive and dismissed as ‘muck’ from surgery.  
 

We’ve had 2 months of ‘pain free’. 
 

He was never pain free.  
 

And after 6 scans being told its ‘muck’, no one (but me) believing the pain, watching the weight drop off, not able to eat, vomiting, he reached crisis.  
 

We knew it was back.  Weeks before Consultant reacted 
 

Only a v stern call from a v caring Consultant convinced him to go to hospital    

Yeah it’s back.  And it’s nasty.   No cure.  No idea how long we have him for.  
 

So there is no hope right now for PC. None at all.  It’s a death sentence.  
 

My beautiful, amazing husband was told he’d beaten this crappy disease.  But that wasn’t true. And yes, I hate that he was given false hope. 
 

He has reached out to our MP, he wants to get funding increased to fund a screening research program.  Early diagnosis at ‘in situ’ stage is key. 
 

No one should go through this.   PC is a killer and will remain so unless early detection is routine 

 

for me, I was relieved that he was in the 20% curative stage.  But if I’d known there was an 80% chance it’d come back within 2 years.  I’d question the point of painful surgery, awful chemo…  quality of life is key, not surgeon ego. 
 

Don’t know how long we have my husband for.  Can’t get a straight answer from anyone.  No one will give a clear answer.   
 

So yeah , there is no hope.  None at all. 

I empathise and sympathise with you so much. There aren’t any words to make it better. At all. But, you are not alone. 
If you need to talk or vent, I am here. I will listen and read. I understand. 
Sending you love and support. You will find the strength you need within yourself and a shoulder to lean on here when and if you need it:,

[rhi]

On 9/21/2024 at 7:26 AM, Flossie said:

I am so sorry for you and your husband it’s such a terrible frightening time.

i have just experienced a similar situation, 18 rounds  of Folfirinox, then the whipple 12 weeks later it’s in his liver, sadly Alan passed away on Tuesday, we thought they had got it all, looking back now i also wonder should he have not bothered with the whipple as he was in a lot of discomfort with pain, they never really got him pain free. 
just carry on loving your husband, spend as much time together. X

Suzanna so sorry to hear about your diagnosis, praying for positive treatment for you x 

[rhi]

On 9/11/2024 at 9:23 AM, Suzanna said:

Hi Mouse 

 

I am sorry to hear what you have been going through … I lost my husband 12 years ago from this dreaded cancer . He was 45 , and have now been diagnosed myself … unfortunately early detection is difficult. I was originally diagnosed with duct dilation which was picked up randomly on a Ct scan for something else .. this prompted an  MRI , pet scan and two biopsy , one ended up causing me pancreatitis. The biopsy came back ok so a follow up CT Scan 3 months later showed slight changes .. They then decided to follow up in 6 month scan in April this year which showed a lesion on the body of the pancreas . The biopsy confirmed pancreatic cancer . They are hesitant to operate until a lesion appears because it is such a major operation to have if cancer isn’t present..  I am now awaiting chemo after having the body of pancreas and spleen removed an can only hope for the best .

 

 

Sending you love and positivity