How long to wait before its too late to help

My dad was diagnosed with pancreatic cancer 3 weeks ago.  When he saw the consultant he was obviously stunned and didn't ask any questions, so simply was not given any information only that it was in its early stages.

He was told that he would be contacted within 2 weeks to make an appointment for a biopsy.  It has now been 3 weeks and we've heard nothing.  I don't know much about this, but from what I gather once this type of cancer is advanced the survival rate is very low.  It seems that he is lucky to have been diagnosed early, but how long is it before the cancer becomes more aggresive? We live in the UK and our NHS is just awful.

Once we get the appointment he'll have to wait another couple of weeks until he goes and then who knows how long it could be before he could get treatment if its possible for him.  My family is so worried because we feel the NHS should be moving quickly to give him a chance of getting through this.  My dad seems already to have given up, he refused to contact his GP or the hospital (hes often in too much pain to physically do it anyway) so we have called on his behalf and keep being given various excuses and so far haven't spoken to anyone who can help sort this out - its ridiculous!

Reading this message board it seems that the diagnosis, biopsy and treatment people recieve moves relatively quickly in most cases, should we be very worried about this? How long is acceptable to wait?  Any information at all would be greatly appreciated as we just don't know where we stand at all. Thankyou.

On 3/1/2007 Annata wrote:

My dad was diagnosed with pancreatic cancer 3 weeks ago.  When he saw the consultant he was obviously stunned and didn't ask any questions, so simply was not given any information only that it was in its early stages.

He was told that he would be contacted within 2 weeks to make an appointment for a biopsy.  It has now been 3 weeks and we've heard nothing.  I don't know much about this, but from what I gather once this type of cancer is advanced the survival rate is very low.  It seems that he is lucky to have been diagnosed early, but how long is it before the cancer becomes more aggresive? We live in the UK and our NHS is just awful.

Once we get the appointment he'll have to wait another couple of weeks until he goes and then who knows how long it could be before he could get treatment if its possible for him.  My family is so worried because we feel the NHS should be moving quickly to give him a chance of getting through this.  My dad seems already to have given up, he refused to contact his GP or the hospital (hes often in too much pain to physically do it anyway) so we have called on his behalf and keep being given various excuses and so far haven't spoken to anyone who can help sort this out - its ridiculous!

Reading this message board it seems that the diagnosis, biopsy and treatment people recieve moves relatively quickly in most cases, should we be very worried about this? How long is acceptable to wait?  Any information at all would be greatly appreciated as we just don't know where we stand at all. Thankyou.

in my husband's case, his pain was caused by the tumor blocking the bile duct and "sludge" building up into the gall bladder. we had actually been seeing a chiropractor for a few months prior to the diagnosis for his back. then he developed jaundice and was admitted to the hospital where we were told it was pancreatic cancer. quite a shock as my husband is still a "young" 52 year old. a stent was placed in the bile duct to drain the gall bladder and most of his pain was relieved immediately. within 2 weeks of the diagnosis, he was having major surgery (whipple). we were fortunate. we have heard only about 10% of diagnosed cases of pancreatic cancer are operable due to the fact that it often goes undiscovered until it is too late. what i am trying to say is that this cancer is very aggressive and needs to be taken care of as soon as possible. if you have to, call the doctor every day until something gets done. tests get missed. calls don't get made. people are overlooked. there are alot of sick people in the world. you are your best health care advocate. you don't have to be rude to get answers...but definitely be persistent! one more thing...your dad needs your support and help, but he is still an individual adult man who has the right to make choices concerning his own health care. just help him to make informed choices. jimandkathy

If I was in your shoes - I would definatley push. I think one thing I have learned is to be the squeeky wheel, which is not something I like being. Although I have discovered that you can push for what you need without being rude. The reality is that pancreatic cancer is a very fast moving cancer. The ONLY cure is through surgery and once the cancer has metasticized (or traveled to other parts of the body) surgery is no longer an option. The difference of only 2 -3 weeks could be ther difference between life and death. It is literally that critical.

Jessie

When first diagnosed, any waiting time is unacceptable. I agree you cannot be rude. It does no one any good. We have to struggle so hard emotionally with the initial dx, we must go into the appointments armed with knowledge. When I get angry or frustrated, I write it down. I write down questions I want to ask. And when I want info on the questions to ask the doctor, I look it up. THEN you know what to ask!  They fill you with so much information so quickly. Try not to let them do that. You don't know anything about what they are telling you. Don't be intimidated. Help them be sympathetic towards your Dad. BUT - don't be naieve either. Their word is not gospel. Research everything they tell you. Get the reports. Do not let them rush you through the info they provide. Your Dad desreves all the time he needs to know what they are doing to him. 15 minutes to hear the options he has is not enough. Make them know who your Dad is, not just his disease. Be polite, but firm in this quest. So many have gotten less than they deserve. Don't let them make your Dad a statistic. He's your Dad, a husband, a son. Not a diagnosis. You need to be creative in this fight to get what you want for him. Hopefully, it won't be too much of a struggle to get the docs to walk beside you in all in this.

God Bless

Thankyou for your kind responses.  I just find it ridiculous that it the doctors don't seem to care, my family may not know much about this cancer and the treatment, but they do, they know the consequences of not moving things along quickly, its just unbelievable!

My sister tried the hospital again and they said the consultant wasn't there, but nor was his secretary so shes had to leave a message with someone to leave for the secretary!! Its just difficult because the other morning my dad called and seemed brighter and more positive because he knew my sister was making another call and then as soon as he found out she'd got nowhere he got really down saying there was no point in pushing things because it won't make a difference. 

We will keep pushing though, whether we get heard or not.  Its so difficult to try and keep my dad positive and hopeful.  Just feeling the way WE do about this is hard, so it must be so terrible for him not being given all the chances he deserves to try and get through it.  His mum had cancer and ended up refusing treatment and just wanted to enjoy the time she had left, so its already in his mind that this may be the thing to do.  Its just that he's in so much pain already... our local GP won't give him any stronger medicine because he said he can't monitor it, so we're just hanging on while we get ignored by the people who can help!

I'll certainly research this as much as I can and keep calling the hospital and we'll all try to keep things as positive and normal for my dad as we can.  Thankyou again for your replies its really appreciated. 

On 3/1/2007 Annata wrote:

My dad was diagnosed with pancreatic cancer 3 weeks ago.  When he saw the consultant he was obviously stunned and didn't ask any questions, so simply was not given any information only that it was in its early stages.

He was told that he would be contacted within 2 weeks to make an appointment for a biopsy.  It has now been 3 weeks and we've heard nothing.  I don't know much about this, but from what I gather once this type of cancer is advanced the survival rate is very low.  It seems that he is lucky to have been diagnosed early, but how long is it before the cancer becomes more aggresive? We live in the UK and our NHS is just awful.

Once we get the appointment he'll have to wait another couple of weeks until he goes and then who knows how long it could be before he could get treatment if its possible for him.  My family is so worried because we feel the NHS should be moving quickly to give him a chance of getting through this.  My dad seems already to have given up, he refused to contact his GP or the hospital (hes often in too much pain to physically do it anyway) so we have called on his behalf and keep being given various excuses and so far haven't spoken to anyone who can help sort this out - its ridiculous!

Reading this message board it seems that the diagnosis, biopsy and treatment people recieve moves relatively quickly in most cases, should we be very worried about this? How long is acceptable to wait?  Any information at all would be greatly appreciated as we just don't know where we stand at all. Thankyou.

Hi

My Dad was diagnosed officially in Dec with PC, though we knew he had a mass on the tail of his pancreas in Sept.

We also live in the UK and were told we needed a hospital that specializes in the pancreas. It has been a long and drawn out process, but Dad has had a distal pancreotomy and his first chemo session was Friday 09.03.07.

I have had to do a lot of research for answers myself since sept. Where in the UK do you live?

Sue 

On 3/10/2007 Sue1810 wrote:

 

On 3/1/2007 Annata wrote:

My dad was diagnosed with pancreatic cancer 3 weeks ago.  When he saw the consultant he was obviously stunned and didn't ask any questions, so simply was not given any information only that it was in its early stages.

He was told that he would be contacted within 2 weeks to make an appointment for a biopsy.  It has now been 3 weeks and we've heard nothing.  I don't know much about this, but from what I gather once this type of cancer is advanced the survival rate is very low.  It seems that he is lucky to have been diagnosed early, but how long is it before the cancer becomes more aggresive? We live in the UK and our NHS is just awful.

Once we get the appointment he'll have to wait another couple of weeks until he goes and then who knows how long it could be before he could get treatment if its possible for him.  My family is so worried because we feel the NHS should be moving quickly to give him a chance of getting through this.  My dad seems already to have given up, he refused to contact his GP or the hospital (hes often in too much pain to physically do it anyway) so we have called on his behalf and keep being given various excuses and so far haven't spoken to anyone who can help sort this out - its ridiculous!

Reading this message board it seems that the diagnosis, biopsy and treatment people recieve moves relatively quickly in most cases, should we be very worried about this? How long is acceptable to wait?  Any information at all would be greatly appreciated as we just don't know where we stand at all. Thankyou.

Hi

My Dad was diagnosed officially in Dec with PC, though we knew he had a mass on the tail of his pancreas in Sept.

We also live in the UK and were told we needed a hospital that specializes in the pancreas. It has been a long and drawn out process, but Dad has had a distal pancreotomy and his first chemo session was Friday 09.03.07.

I have had to do a lot of research for answers myself since sept. Where in the UK do you live?

Sue 

Hi there,

Sorry to hear about your dad, how is he and your family?  How have you found the help available?

My dads first appointment to talk about the next step is actually this week in leicestershire but he lives in cambridgeshire. 

We pushed as people advised regarding the appointment he was waiting for and apparantly our local hospital hadn't actually sent whatever paperwork they needed to to the hospital in leicestershire, so of course they wern't aware that he was even waiting for an appointment.  With alot of phone calls they did apparantly push things through as 'urgent' but the consulant has been on holiday!  And it was unbelievable how rude the people we have spoken to are, we have only spoken to one person who had been at all considerate and tried to be informative which we appreciated so much.

His appointment is just to discuss things with the consultant so we don't even have an appointment for a biopsy yet, never mind about treatment.  It really is a worry, he's struggling to do anything because on most days he's in so much pain. 

Have you had to push for things to get done too?  We've found it difficult to get to speak to anyone and have constantly been told they are understaffed, which of course is not anyones fault, but people have been terribly rude and we've been as polite and patient as we possibly can.  Its scary to think if we hadn't kept up the calls nothing would have been done and we feel bad that we didn't start this earlier.

You say that you've had to do alot of research on this yourself.. is there a point that you've been given more information?

 

 

 

Anita,

I am very sorry to hear about your father.  It is extremely frightening and very disheartening to have to endure the superficiality and obvious unfeelingness of some of the medical professionals.

Don't let them put you off.  Call three or four times a day if they don't reply.   Go to the hospital.   Be firm and tell them they have to give you an answer.   Your dad deserves to be treated with a lot more concern than what he has been shown so far.   Be determined and insistant.   He has to be taken care off in a better manner than this and far more quickly.

 Your Dad deserves the best that can be offered and you and your sister have to help him so be strong and get that appointment as soon as you can.      He is relying on you both and it is obvious that he is used to the old way of thinking that the doctors know best which we know is not true.  Not all doctors are like this but you seem to have met with some of the uncaring types.   I know the UK system is not the best any more but this is not the answer to what they should be doing now for him.

My thoughts are with you - please keep us all informed and I hope you have already obtained that needed appointment.

Best wishes,

Louisa

 Apathy in the medical community has increased in the last 5 years in all areas (This is my opinion but I bet someone has done a study)  I last worked as an RN in the late 80's and today I would be fired the first day as I always spoke up for the patient.

If the one doctor is not meeting your needs find one who is.  Wether it be emotional or medical support.  I was fortunate my original doctors failing was  ego but he did find me the best Oncologist a person could have!!

It is especially hard when one is facing death to be met with derision, apathy or ignorance on behalf of medical professionals. On the other side there are some wonderful docs out there one just has to hang in there and find them.  We have all probably seen or heard about this.

The modern system focuses on $$ and the bottom line for hospital and doctor and not the care of the patient.. It is in many fields other than medicine but they are not dealing with one's life.  Take care all my prayers are with you all..Elaine 

On 3/12/2007 Louisa wrote:

Anita,

I am very sorry to hear about your father.  It is extremely frightening and very disheartening to have to endure the superficiality and obvious unfeelingness of some of the medical professionals.

Don't let them put you off.  Call three or four times a day if they don't reply.   Go to the hospital.   Be firm and tell them they have to give you an answer.   Your dad deserves to be treated with a lot more concern than what he has been shown so far.   Be determined and insistant.   He has to be taken care off in a better manner than this and far more quickly.

 Your Dad deserves the best that can be offered and you and your sister have to help him so be strong and get that appointment as soon as you can.      He is relying on you both and it is obvious that he is used to the old way of thinking that the doctors know best which we know is not true.  Not all doctors are like this but you seem to have met with some of the uncaring types.   I know the UK system is not the best any more but this is not the answer to what they should be doing now for him.

My thoughts are with you - please keep us all informed and I hope you have already obtained that needed appointment.

Best wishes,

Louisa

 

On 3/12/2007 Annata wrote:

 

On 3/10/2007 Sue1810 wrote:

 

On 3/1/2007 Annata wrote:

My dad was diagnosed with pancreatic cancer 3 weeks ago.  When he saw the consultant he was obviously stunned and didn't ask any questions, so simply was not given any information only that it was in its early stages.

He was told that he would be contacted within 2 weeks to make an appointment for a biopsy.  It has now been 3 weeks and we've heard nothing.  I don't know much about this, but from what I gather once this type of cancer is advanced the survival rate is very low.  It seems that he is lucky to have been diagnosed early, but how long is it before the cancer becomes more aggresive? We live in the UK and our NHS is just awful.

Once we get the appointment he'll have to wait another couple of weeks until he goes and then who knows how long it could be before he could get treatment if its possible for him.  My family is so worried because we feel the NHS should be moving quickly to give him a chance of getting through this.  My dad seems already to have given up, he refused to contact his GP or the hospital (hes often in too much pain to physically do it anyway) so we have called on his behalf and keep being given various excuses and so far haven't spoken to anyone who can help sort this out - its ridiculous!

Reading this message board it seems that the diagnosis, biopsy and treatment people recieve moves relatively quickly in most cases, should we be very worried about this? How long is acceptable to wait?  Any information at all would be greatly appreciated as we just don't know where we stand at all. Thankyou.

Hi

My Dad was diagnosed officially in Dec with PC, though we knew he had a mass on the tail of his pancreas in Sept.

We also live in the UK and were told we needed a hospital that specializes in the pancreas. It has been a long and drawn out process, but Dad has had a distal pancreotomy and his first chemo session was Friday 09.03.07.

I have had to do a lot of research for answers myself since sept. Where in the UK do you live?

Sue 

Hi there,

Sorry to hear about your dad, how is he and your family?  How have you found the help available?

My dads first appointment to talk about the next step is actually this week in leicestershire but he lives in cambridgeshire. 

We pushed as people advised regarding the appointment he was waiting for and apparantly our local hospital hadn't actually sent whatever paperwork they needed to to the hospital in leicestershire, so of course they wern't aware that he was even waiting for an appointment.  With alot of phone calls they did apparantly push things through as 'urgent' but the consulant has been on holiday!  And it was unbelievable how rude the people we have spoken to are, we have only spoken to one person who had been at all considerate and tried to be informative which we appreciated so much.

His appointment is just to discuss things with the consultant so we don't even have an appointment for a biopsy yet, never mind about treatment.  It really is a worry, he's struggling to do anything because on most days he's in so much pain. 

Have you had to push for things to get done too?  We've found it difficult to get to speak to anyone and have constantly been told they are understaffed, which of course is not anyones fault, but people have been terribly rude and we've been as polite and patient as we possibly can.  Its scary to think if we hadn't kept up the calls nothing would have been done and we feel bad that we didn't start this earlier.

You say that you've had to do alot of research on this yourself.. is there a point that you've been given more information?

 

 

 

 

Hi

I have sent a private reply to your questions as I have also added my e-mail address. Hope you have got it and find the web sites useful.

Good luck this week, I will be thinking of you all, keep me informed

Sue