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My Dad

dsh
Posts: 8
Joined: Sep 2010

Dear all

Let me start off by saying what a wonderful forum this is for people like myself who are having to come to terms with a loved one falling victim to this terrible illness. I have been lurking on this website for the past few weeks or so since my dad was diagnosed with esophageal cancer.

As I mentioned its been about 3 weeks or so since diagnosis. My dad had been very ill for about 2 weeks prior to diagnosis with indigestion and vomiting and a sensation that food wasn't going down, but other than that he had always been fit and healthy, never smoked a cigarette in his life and was near teetotal, so we are all confused as to why he's fallen victim to this.

On diagnosis the doctors said he had a cancerous tumor of roughly 20cm in length in his esophagus. They then started to carry out all the other tests like CT and PET scans to ascertain the spread.

We've now had the results back and, whilst it has not spread to any other organs, it has spread to the lymph nodes in the stomach and trachea. The doctor will not tell us what stage the cancer is at, just that my dad is not a candidate for surgery. The treatment the hospital has offered is a course of radiotherapy in the hope that hopefully this will shrink the cancer and prolong his life and ease the pain. However, they have been very clear that they are unable to cure him and said prognosis could be anything from a couple of months to a couple of years (at best!).

We live in the UK where we are up against the monolith that is the National Health System. If we were to even get a second opinion this would involve taking him off the NHS and into the private sector which could either delay his treatment on the NHS and at worst prevent him entirely from getting treatment on the NHS (don't even get me started on the NHS!). He's already very ill and can barely get out of bed so we need to be very careful not to delay things.

The NHS basically work on the balance of probabilities - if they have uncertainty whether surgery would be effective they generally disregard it so we naturally do have a certain amount of skepticism as to whether surgery is definitely out of the question. We therefore are thinking of getting a second opinion outside the NHS just to give us peace of mind that we explored all avenues.

However, what I am keen to know is whether anyone has heard/experienced cases where a tumor of the size my dad has (with lymphatic spread to the stomach and trachea) has been successfully surgically removed.

Thanks so much in advance!

S

dsh
Posts: 8
Joined: Sep 2010

William - thank you ever so much for your response. I can't tell you how much I appreciate it. It is so comforting to know that someone is listening.

Unfortunately though things have changed somewhat in the time since i posted the thread. My father was re-admitted to hospital on the weekend as his condition suddenly deteriorated. He came down with a high temperature on Saturday night and they then discovered a hole in his esophagus. This had been causing fluid to leak through to the lungs.

Fortunately they now think they have managed to the hole up by fitting a stent. Finally last night they said he could start drinking again small amounts of water. For 2 days prior to this we had been confined to hydrating him by wetting a swab and rubbing it on his gum, tongue and roof of the mouth. It was so painful for us to see him in this state. Also he started to see things and was a little bit paranoid - the doctors said that this would be due to the lack of water and food (he's been on Ensure since diagnosis).

The doctors are still talking about giving my dad radiotherapy if he can fight off the infection and build up strength. However, they are being very clear that this is only palliative.

We did manage to get him admitted to a different NHS hospital where we got second opinion and were told the stage. As you suspected william, its stage 4 and is a very aggressive cancer that has spread extensively to nodes in stomach and trachea. They have said there's very little they can do for him other than make his final days as comfortable as possible but we are only looking at a couple of months left at the most.

I do believe they have his best interests at heart and that there is really little that can be done for him now, but we can't help thinking "what if" they were just a little bit quicker in the beginning. It took 6 weeks from diagnosis for the NHS to decide on a course of treatment and then schedule him in for radiotherapy. In this time he deteriorated and has become too ill for the radiotherapy. They have assured us that this delay would have made no clinical difference but I doubt cancer cells stop multiplying just because the NHS are over-burdened with appointments!!! Also in the time from diagnosis the tumor grew and the hole in the esophagus developed so I really don't buy the BS about it making it no clinical difference. I really hope you guys over the pond don't end up with a system like ours. And yes, my dad would have lost his entitlement to NHS treatment if he sought a second opinion privately - what a cruel system!!!

With regards to symptoms, my dad really didn't have any (other than very mild weight loss) until he was violently bringing up his food. He went to the doctor straight away and a endoscopy was scheduled. But once again, there was more delay because it took the NHS 2 weeks to schedule one!!!! My dad never smoked, was near tee total and had a very good diet. He also swam most days and still at 70 could do over 50 lengths of the pool. He's just been incredibly unlucky to have fallen victim to this awful illness.

Our main priority now is just to make his final days with us as comfortable and as pain free as possible. We are making arrangements for him to either come home or go into hospice. Hope he can all be in your prayers.

S

dsh
Posts: 8
Joined: Sep 2010

William/Sherrie, I just wanted to thank you both for your replies as well as everyone else who's been praying for my dad. Dad is now moving into the final stages of his short but painful battle with this dreadful illness. We have had frank discussions with the doctors and are now making arrangements for him to pass away at home with his family - which is what he wanted.

What has been particularly distressing over the pass couple of days is how delirious he's been - and at times physically aggressive to the nurses. It was so painful to have to see them restrain him. I think it's just been too much for him and it's finally dawned on him that the end is near.

I think there are some merits to the NHS and universal healthcare for all. However, as you rightly point out william a one size fits all policy doesnt always work and I think in my dad's case, it lead to tragic delays. From him presenting himself at hospital with clear symptoms of Esophageal cancer to diagnosis and scheduling treatment (which in the end he was too ill to take) took around 7 weeks!!! I think in that time a crucial window of opportunity was lost which could have prolonged his life but ultimately I doubt he would have been able to be cured. The doctors have said his is a particularly aggressive cancer and for him to have no symptoms then suddenly a tumour of 20cm it must have grown very quickly. I suppose we'll never know though.

Hopefully his final days can be as peaceful as possible. We can only pray so.

S

dsh
Posts: 8
Joined: Sep 2010

Dear All

Just to let you all know that my Dad passed away a couple of days after I posted my last message. His dying wish was that he was allowed to return home and die surrounded by his family - which we managed to arrange.

What an awful illness - from first having symptoms to death only about 6 or 7 weeks passed. He was transformed from a fit healthy man swimming 50 lengths a day to literally on death's door so suddenly - it's tragic the speed at which this cancer moves. It was impossible to keep his strength up when he couldn't eat.

I know I will come to accept everything in time but at the moment everything's so raw still.

For those stricken by this terrible illness I wish you all the best in fighting it.

S

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Dear S,

I am so sorry to hear your news about your dad. I too am a daughter and can't imagine what it will be like for my family. I am happy to hear that you were able to be together as a family at the end. God bless you all. I will keep you in my thoughts and prayers and please keep in touch with us here. I know there are some difficult days ahead and we are all here to help and offer support.

Hugs and prayers,
Cindy

sal314
Posts: 633
Joined: Jul 2010

to hear the news about your Dad. It was much too fast. Oh, how I HATE this cancer!
My thoughts and prayers are with you and your family as you go through this difficult time.

Blessings,
Sally

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

So sorry to hear your dad passed...it is so shocking that one can be taken so quickly after being so healthy. I am sorry for his suffering (and yours) but glad that it wasn't prolonged to the point where he was endlessly suffering. I think we all wish we could help so much more when family members need us, and sometimes the disease is bigger than we comprehend. I am glad he is no longer suffering. It was wonderful that you were able to let him have his wish to pass at home...not as easy as it sounds---but gives peace to the family member.
Kim

pattyo54's picture
pattyo54
Posts: 6
Joined: Dec 2010

my dad was diagnosed with esophageal cancer the beginning of december- also never smoked and not a drinker-he is 84 and never had symptoms of acid reflux- doctors said he probably had it for 2 yrs- it has spread to his brain, liver and lung and they gave him 2 weeks without treatment and 6 months with surgery and treatment. they wanted to do brain surgery and said that he might not survive it because of his age and weakened state- he had lost 20lbs at that time. we chose to bring him home. how is your dad doing- i see you posted in september- patto

pattyo54's picture
pattyo54
Posts: 6
Joined: Dec 2010

my dad was diagnosed with esophageal cancer the beginning of december- also never smoked and not a drinker-he is 84 and never had symptoms of acid reflux- doctors said he probably had it for 2 yrs- it has spread to his brain, liver and lung and they gave him 2 weeks without treatment and 6 months with surgery and treatment. they wanted to do brain surgery and said that he might not survive it because of his age and weakened state- he had lost 20lbs at that time. we chose to bring him home. how is your dad doing- i see you posted in september- patto
sorry i didn't scroll down to see that your dad had died- so sorry

dsh
Posts: 8
Joined: Sep 2010

No worries Pattyo. It's been a couple of months now since my Dad passed. Although the pain is still raw life is slowly returning to a some sort of normality.

I am sorry to hear about your dad. His situation sounds very similar to my Dad's , although my Dad was slightly younger than yours (70). We still can't work out how Dad got EC. One week he was in the swimming pool doing 80 lengths, the next he had a bit of indigestion and by the following week he couldn't keep any food down and felt as if he was having a heart attack - at which point he was shortly afterwards diagnosed with EC. I think sometimes with cancer there's no rhyme or reason why some people get it who are healthy, whereas others who do all the things you're told not to do - smoke, drink, don't exercise etc - live to a ripe old age. It's almost as if everything's pre-determined.

I hope the doctors can do something for your Dad.

dasspears
Posts: 233
Joined: Feb 2009

A good friend of mine was diagnosed with EC and stomach cancer the last week of November. He passed away on December 24th. He was 59 and in good health - did not smoke - drank moderately - was not overweight and relatively active. Mid-November, he went on a 6-mile hike. He didn't have any symptoms but one day he had a bout of dizziness one day and then he fainted. Through testing they found the EC and he only had one treatment. During treatment, his blood pressure began falling and he was hospitalized and then contracted pnuemonia. He was unable to fight his way back. I'm amazed at the aggressive nature of this particular cancer. I will definitely miss him.

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

I am saddened for you to read of your friend's passing. He was so young, so tragic. It is important for all of us to get the word out on this aggressive cancer. My husband is fighting stage III at this time, with surgery on the 5th.

Take care of yourself,

Linda

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