Dad Has a Rare Form of PC

[IarFachYrHaf]

Hi all,

First time poster here. Just wanted to share my story and hopefully get some kind of much needed feedback/support.

My dad is 73, and a young 73 - fit, healthy and active, until recently, at least. Before Christmas he started to feel ill. He's never ill but my mum persuaded him to go to the GP, who told him it was just a virus and to rest up. Anyway, he didn't feel better, so back he went in January. Same answer from the GP. He returned to the GP complaining of weakness and pins & needles, and asked for blood tests. They came back inconclusive and the GP insisted this was a strange virus that was attacking his nervous system.

A few years back my dad had a valve in his heart replaced and since then has gone back to see the same cardiologist each year for a once over. When he walked into the cardiologist's office this time, he couldn't believe how poorly my father looked and asked him what was wrong. My dad told him about the virus and the cardiologist was unconvinced so did an ultrasound on him there and then. It was then he was told he had a mass in his stomach. Shortly after he decided to pay to have a CT scan privately, and was then told he needed a biopsy (on the NHS).

So we waited and finally the day of the biopsy arrived in late April. At this point, my dad still felt unwell but was going about his daily life as normal - fishing, playing bridge, cooking, grocery shopping and playing with my daughter. We waited 2.5 weeks for the result of the biopsy, at which time we were told that the hospital was very sorry but that they had taken cell samples from the wrong part of his body, and that he would need to have another biopsy.

So we waited again, and finally the day of the second biopsy arrive in early June. By this point he was considerably weaker and no longer able to do as much as he was just a fortnight previously. We waited three weeks for the results, phoning every day, only to be told that the jubilee weekend had held everything up.

Then a call came from an admin assistant finally to tell him that he was being referred to the local cancer unit. We had two appointments cancelled and on the day of his appointment we waited three hours to be seen by the PC specialist, while my dad expired in the chair in front of me through weakness and exhaustion. He was very nice and told my dad that he would need chemotherapy and made him another appointment to see him the week after. We saw the same consultant again the week after (which was two weeks ago) and he told my dad that he was referring him on once more to see a different specialist because he had a rare form of pancreatic cancer known as a sarcoma, which only occurs in 0.1% of patients and is a particularly aggressive and fast growing type of tumour. The PC specialist had never seen such a thing and so thought it best to hand my dad's case over to a sarcoma specialist.

Last week, we saw the sarcoma specialist who told my dad about the options available to him. He ruled radiotherapy out because the cancer had spread to nearby lymph nodes and there were some secondary cancer cells on his liver. So chemotherapy was his best option. Heartbreakingly, he also admitted that if my dad's sarcoma had been scanned earlier he would have been able to have it removed completely. But that now, it was too late for that and the best prognosis was a year more of life with chemo.

My dad is a very quiet, stoical and positive person. He nodded determinedly and told the dr that he was keen to go ahead with the chemo and that he wanted to do everything he could to survive. This Friday he was due to go in for his pre-chemo CT scan. However, over the past weekend, my dad's decline has been nothing short of disturbing. He can no longer go up the stairs alone and despite being given steroids, his appetite is basically zero. He can't even take on board the high calorie fatty drinks the hospital gave us. Overnight he deteriorated dramatically.

The GP saw him on Monday and told us that he thought my dad was too ill for chemo and that it would either kill him quicker and dramatically deteriorate his quality of life. The GP returned yesterday, after discussing my dad's case with the sarcoma specialist, to tell my dad the bad news. I've never been more depressed in my life. My dad looked so let down, it was heartbreaking.

We've gone from being fobbed off, to gaining some answers to being messed around to having some hope, to now absolutely no hope in the space of just a week. I feel as though we've been abandoned and just discarded because my dad has this rare cancer that nobody understands. I don't ever think I'll be able to forget his face when he was told that they wouldn't give him chemotherapy. He just wants to live and to fight this thing full on, and he's not even being helped to do so. They just want him to go away and die at home. And now he'll never go fishing, play bridge, cook, go grocery shopping or play with my daughter again. I'm sitting here writing this forum post wondering how the hell it has all come to this point.

Does anybody have any advice or just a word or two to make me feel better?

[laura]

hello, so sorry to read your sad story, am sure you have been reading posts on here and will know that your story of mis/undiagnosis is not unusual, very frustrating, but mostly par for the course, regretfully,

my hubby brian is two and half years post diagnosis, the first symptoms, we think!!, were a deep discomfort in upper diaphram and being unable to take a deep breath, eventually it was suggested we see a thorasic specialist, we paid privately for the first app, to speed things up? the specialist latched onto the fact that my husband has / does suffer from stress and also has Mild Cognitive Disorder, and was fairly sure nothing amiss but agreed to do some tests, over three months we were seen three times by him, he declared all tests ok no problems with lungs. which we didnt think he had anyway, declared him fit and discharged him!

within 14 days bri went REALLY yellow, went to our drs, bloods taken, and things moved SO fast, referred to the Jaundice Hotline at our hospital in Truro,more tests scans stent inserted, then within few days the diagnoses P.C. well you know the feeling dont you?

bri had an attempted whipple, unsuccessful because tumour wrapped round smv and not able to remove.

this was followed by 19months of chemo, Gemcap, which suited him, had two reductions in size of tumour, currently not on medication or chemo, but we are seen every 12 wks and a scan, i know we are very lucky!!

i hope from my preamble, you will see that you COULD NOT have done more to get a diagnosis for your dad, such a sneaky cancer, presents so many varied symptoms its difficult for them to be tied to one disease, do hope you have a good hospital looking after you, try and get a macmillan nurse or similar for your family, so helpful. seems strange [ to me] that the oncologist wasnt able to deal with ANY type of PC.

my thoughts are with you, hope things improve for your dad, hope you have quality time with each other and plenty of loving,

sometimes, just sometimes its better for the whole family to have NO treatment, rather than put their loved one through so much disomfort, and no quality? difficult one.

lots of strength to you all, love laura xx

[ali40]

Hi

Sorry don't know your name, my thoughts are with you and I hope you can keep your dad at home as long as is possible, but look into the local hospice it will be the best thing you can do do. My mum only passed away 2 days ago and I wouldn't wish for her to be anywhere else.

Alison.x

[IarFachYrHaf]

laura wrote :

> hello, so sorry to read your sad story, am sure you have been reading posts

> on here and will know that your story of mis/undiagnosis is not unusual,

> very frustrating, but mostly par for the course, regretfully,

> my hubby brian is two and half years post diagnosis, the first symptoms, we

> think!!, were a deep discomfort in upper diaphram and being unable to take

> a deep breath, eventually it was suggested we see a thorasic specialist, we

> paid privately for the first app, to speed things up? the specialist

> latched onto the fact that my husband has / does suffer from stress and

> also has Mild Cognitive Disorder, and was fairly sure nothing amiss but

> agreed to do some tests, over three months we were seen three times by him,

> he declared all tests ok no problems with lungs. which we didnt think he

> had anyway, declared him fit and discharged him!

> within 14 days bri went REALLY yellow, went to our drs, bloods taken, and

> things moved SO fast, referred to the Jaundice Hotline at our hospital in

> Truro,more tests scans stent inserted, then within few days the diagnoses

> P.C. well you know the feeling dont you?

> bri had an attempted whipple, unsuccessful because tumour wrapped round smv

> and not able to remove.

> this was followed by 19months of chemo, Gemcap, which suited him, had two

> reductions in size of tumour, currently not on medication or chemo, but we

> are seen every 12 wks and a scan, i know we are very lucky!!

I really hope that his improvement continues. It's heartening to see that at least some people out there are enabled to fight this thing, and are given the chance to do so.

> i hope from my preamble, you will see that you COULD NOT have done more to

> get a diagnosis for your dad, such a sneaky cancer, presents so many varied

> symptoms its difficult for them to be tied to one disease, do hope you have

> a good hospital looking after you, try and get a macmillan nurse or similar

> for your family, so helpful. seems strange [ to me] that the oncologist

> wasnt able to deal with ANY type of PC.

I don't know why but my dad's case was passed from one PC specialist to another PC specialist to finally the sarcoma specialist. However, none of them have ever, in their careers, seen a sarcoma of the head of the pancreas. Apparently this changes how you deal with the cancer. I just feel angry that it took three months to be dealt with, and have had so many mistakes made with his case, after finding the mass. In that time he could have been given chemo and would, at least, have been given the opportunity to try to survive.

> my thoughts are with you, hope things improve for your dad, hope you have

> quality time with each other and plenty of loving,

> sometimes, just sometimes its better for the whole family to have NO

> treatment, rather than put their loved one through so much disomfort, and

> no quality? difficult one.

> lots of strength to you all, love laura xx

Thank you for your kind words. I really don't want to see my dad suffer, of course not. But I feel as though he has been let down because he's not the type of guy to just give up the ghost and die in bed quietly. In his words to the doctor Monday - "I don't want to just pack it all in". I'm glad your husband is fighting, and long may that continue.

xxxxxx

[IarFachYrHaf]

ali40 wrote :

> Hi

>

> Sorry don't know your name, my thoughts are with you and I hope you can

> keep your dad at home as long as is possible, but look into the local

> hospice it will be the best thing you can do do. My mum only passed away 2

> days ago and I wouldn't wish for her to be anywhere else.

>

> Alison.x

Thank you. I'm really sorry to hear about your mum. How are you coping?

My grandfather died of lung cancer (a non smoker to boot) almost twenty years ago. He went to a hospice a couple of days before he passed after being looked after by myself, my mum and dad, and had fantastic care there, much better than any hospital. I don't think my dad's is ready for that yet and he's such a stubborn sort that he'll want to stay at home until the bitter end. I hate to see what this disease does to people, and when all this is over, I will do my utmost best to raise money for research. At the moment, I'm trying to channel all my anger and frustration into thinking about that.

xx

[DRAD3]

So sorry to hear your Dad's story. PC is so sneaky and so cruel and often diagnosed much too late because it hides itself and is mistaken for other conditions. My husband died in April at just 45 years old. He did have chemotherapy and radiotherapy and it is by no means a walk in the park and you need to be very strong to tolerate it, otherwise it makes an already difficult situation much worse. We asked ourselves every day what we could have done to prevent this disease wreaking such havoc - I still blame myself for not dragging him to the doctor sooner when he complained of back and digestive pain, I blame the GP for not acting sooner, the hospital for not getting the tests back quicker, the treatment started sooner, but truth is everyone did the best they could and PC still got the better of us. It's what it does. My husband battled this disease to the very end, because that was his way, and he died at home because that was his wish - I hope your Dad gets whatever he now wishes and you have some happy moments together as a family. I know how difficult it must be and my heart goes out to you. Sending you and your family love and strength.

Deb

x

[IarFachYrHaf]

DRAD3 wrote :

> So sorry to hear your Dad's story. PC is so sneaky and so cruel and often

> diagnosed much too late because it hides itself and is mistaken for other

> conditions. My husband died in April at just 45 years old. He did have

> chemotherapy and radiotherapy and it is by no means a walk in the park and

> you need to be very strong to tolerate it, otherwise it makes an already

> difficult situation much worse. We asked ourselves every day what we could

> have done to prevent this disease wreaking such havoc - I still blame

> myself for not dragging him to the doctor sooner when he complained of back

> and digestive pain, I blame the GP for not acting sooner, the hospital for

> not getting the tests back quicker, the treatment started sooner, but

> truth is everyone did the best they could and PC still got the better of

> us. It's what it does. My husband battled this disease to the very end,

> because that was his way, and he died at home because that was his wish - I

> hope your Dad gets whatever he now wishes and you have some happy moments

> together as a family. I know how difficult it must be and my heart goes

> out to you. Sending you and your family love and strength.

> Deb

> x

I read all the stories like yours on this forum, and my heart breaks for us all. I'm so sorry about what happened to your husband. I'm right in the middle of that blame game, as are the rest of the family, particularly my mum. Much love from us to you. xxx