Our story- can you relate?

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Our story- can you relate?

by Slsteere on Mon Apr 16, 2012 08:18 PM

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my Dad was a very active 75 year old man who loves nature, hiking , jeep riding and camping. We noticed he started to lose weight in January but he was actively cutting back and working out more. Then he started complaining of stomach pains and went to the Dr. And they said you have an ulcer. Ok take medications for the ulcer and it will be alright. Problem was he kept losing weight and had the feeling of fullness and did not want to eat much and he became increasingly tired. Now we were worried so went in again and were told he had the flu, we were overly concerned etc... He went in for an upper and lower GI scope with all ok. We demanded a CT scan and that's when they found the tumor in the tail of the pancreas- approc 4 cm in size we were told and yes it was operable. Ok so we go in last week for the operation and the surgeon comes out and say there is nothing we can do the tumor is actually around 8 cm and encompasses approx. 80 percent of the pancreas and is traveling to the liver. It's infiltrated a main blood vessel and nerves. We were taken by compete surprise by this. How could the scan have been this wrong. The. Surgeon told us he has 6 months ...what we were told a few days earlier that this was early stage and not aggressive...boy they were wrong. Enough venting..my dad is going to the oncologist tomorrow but I am thinking he just wants a gauge of how much time he has. I want him to fight and think chemo could help? Any advice on how I can help. I feel like I let me dad down and we are out of options.

RE: Our story- can you relate?

by vwxyz on Mon Apr 16, 2012 08:52 PM

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Yes, I can definitely relate and probably many others on this board.   I can't tell you how long my son was complaining of headaches going through college and the Dr. went all around robinhoods barn and never got it right.  My son would have a much longer happier healthier life if it was caught in the beginning. It does not take a rocket scientist to figure out what was going on with my son from the first complaint and to administer a complete thorough workup for his brain.

As for your beloved Dad, bring or send copies of his medical records and get 3-4 different opinions from other reputable cancer facilities to see if there is anything anyone can do.  "If" one of the docs say radiation treatments, ask if your dad is a candidate for Proton.  It is the most precise with the least side effects of all radiation treatments I have heard of so far.   I wish you the best.  Keep us up to date.  Prayers and best wishes,  J.

 

 

 

RE: Our story- can you relate?

by sulemkau on Mon Apr 16, 2012 09:34 PM

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On Apr 16, 2012 8:18 PM Slsteere wrote:

my Dad was a very active 75 year old man who loves nature, hiking , jeep riding and camping. We noticed he started to lose weight in January but he was actively cutting back and working out more. Then he started complaining of stomach pains and went to the Dr. And they said you have an ulcer. Ok take medications for the ulcer and it will be alright. Problem was he kept losing weight and had the feeling of fullness and did not want to eat much and he became increasingly tired. Now we were worried so went in again and were told he had the flu, we were overly concerned etc... He went in for an upper and lower GI scope with all ok. We demanded a CT scan and that's when they found the tumor in the tail of the pancreas- approc 4 cm in size we were told and yes it was operable. Ok so we go in last week for the operation and the surgeon comes out and say there is nothing we can do the tumor is actually around 8 cm and encompasses approx. 80 percent of the pancreas and is traveling to the liver. It's infiltrated a main blood vessel and nerves. We were taken by compete surprise by this. How could the scan have been this wrong. The. Surgeon told us he has 6 months ...what we were told a few days earlier that this was early stage and not aggressive...boy they were wrong. Enough venting..my dad is going to the oncologist tomorrow but I am thinking he just wants a gauge of how much time he has. I want him to fight and think chemo could help? Any advice on how I can help. I feel like I let me dad down and we are out of options.

My husband had almost the same experience. After interveiwing and speaking to several oncologists we have been very happy with Dr Howard Bruckner in the Bronx. My husbands tumor is in the same area and after 4 months it has been miraculously reduced and his tumor numbers are way down! We were told we had little chance for surgery...not now.The surgeons are even amazed.  Good Luck and don't give up hope.  

RE: Our story- can you relate?

by Slsteere on Mon Apr 16, 2012 09:35 PM

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On Apr 16, 2012 8:52 PM vwxyz wrote:

Yes, I can definitely relate and probably many others on this board.   I can't tell you how long my son was complaining of headaches going through college and the Dr. went all around robinhoods barn and never got it right.  My son would have a much longer happier healthier life if it was caught in the beginning. It does not take a rocket scientist to figure out what was going on with my son from the first complaint and to administer a complete thorough workup for his brain.

As for your beloved Dad, bring or send copies of his medical records and get 3-4 different opinions from other reputable cancer facilities to see if there is anything anyone can do.  "If" one of the docs say radiation treatments, ask if your dad is a candidate for Proton.  It is the most precise with the least side effects of all radiation treatments I have heard of so far.   I wish you the best.  Keep us up to date.  Prayers and best wishes,  J.

 

 

 

I guess lesson learned to get multiple opinions and to not put 100percent of hope into these tests. If we wouldn't have demanded a CT scan this could still be undiagnosed. I 'm sorry to hear about your son as I know this is a long process with many highs and lows. I doubt my dad will opt for radiation or chemo but yes I have heard of proton radiation. My father in law passed in January 2012 with lung cancer and they were going to do proton but it was too late. Cancer is the devil at work but we continue to pray and hope for some good days ahead.

RE: Our story- can you relate?

by Slsteere on Mon Apr 16, 2012 09:43 PM

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On Apr 16, 2012 9:34 PM sulemkau wrote:

On Apr 16, 2012 8:18 PM Slsteere wrote:

my Dad was a very active 75 year old man who loves nature, hiking , jeep riding and camping. We noticed he started to lose weight in January but he was actively cutting back and working out more. Then he started complaining of stomach pains and went to the Dr. And they said you have an ulcer. Ok take medications for the ulcer and it will be alright. Problem was he kept losing weight and had the feeling of fullness and did not want to eat much and he became increasingly tired. Now we were worried so went in again and were told he had the flu, we were overly concerned etc... He went in for an upper and lower GI scope with all ok. We demanded a CT scan and that's when they found the tumor in the tail of the pancreas- approc 4 cm in size we were told and yes it was operable. Ok so we go in last week for the operation and the surgeon comes out and say there is nothing we can do the tumor is actually around 8 cm and encompasses approx. 80 percent of the pancreas and is traveling to the liver. It's infiltrated a main blood vessel and nerves. We were taken by compete surprise by this. How could the scan have been this wrong. The. Surgeon told us he has 6 months ...what we were told a few days earlier that this was early stage and not aggressive...boy they were wrong. Enough venting..my dad is going to the oncologist tomorrow but I am thinking he just wants a gauge of how much time he has. I want him to fight and think chemo could help? Any advice on how I can help. I feel like I let me dad down and we are out of options.

My husband had almost the same experience. After interveiwing and speaking to several oncologists we have been very happy with Dr Howard Bruckner in the Bronx. My husbands tumor is in the same area and after 4 months it has been miraculously reduced and his tumor numbers are way down! We were told we had little chance for surgery...not now.The "" target="_blank" rel="nofollow">http://now.The " target="_blank" rel="nofollow">now.The surgeons are even amazed.  Good Luck and don't give up hope.  

Did he have radiation or both chemo and radiation. Problem now is that my dad is weak from the surgery and they probably will not start any treatment soon. My dad is seeing Dr Nagourney tomorrow in Long Beach but he keeps hearing how dismal and aggressive the cancer is so I fear he is resigned to giving up. The best to your husband and yourself and prayers that the tumor keeps shrinking.

RE: Our story- can you relate?

by sulemkau on Mon Apr 16, 2012 09:55 PM

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He just had chemo.Hopefu lly willnot have to do radiation but we shall see what the ct scan says next week. What a god awful disease. I will say prayers for you all. Best wishes and luck too!

RE: Our story- can you relate?

by chuck1943 on Tue Apr 17, 2012 01:20 PM

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I was lucky and had a dr. In the e.r. When I went for an itch that trained under a top whipple dr. I was told after that there are not enough drs. Trained to detect p.c and that it is hard to see on many tests.

RE: Our story- can you relate?

by MiracleMarty on Sun Apr 22, 2012 11:57 PM

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I am a 63 year old female who had the whipple surgery 13 months ago and 6 weeks after surgery it went to my liver.  I am stage 4B but I have done good just on standard chemo for just about a year.  My last cat scan showed just 2 small lesions in my liver.  I hope they will be able to treat them now that the cancer shows only in my liver.  They are going to run a MRI to see if it matches up to what the CT scan said.  I feel your dad can be a miracle like I am.  God Bless YOU!!!  Miracle Marty

RE: Our story- can you relate?

by Harts on Mon Apr 23, 2012 01:47 PM

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On Apr 16, 2012 8:18 PM Slsteere wrote:

my Dad was a very active 75 year old man who loves nature, hiking , jeep riding and camping. We noticed he started to lose weight in January but he was actively cutting back and working out more. Then he started complaining of stomach pains and went to the Dr. And they said you have an ulcer. Ok take medications for the ulcer and it will be alright. Problem was he kept losing weight and had the feeling of fullness and did not want to eat much and he became increasingly tired. Now we were worried so went in again and were told he had the flu, we were overly concerned etc... He went in for an upper and lower GI scope with all ok. We demanded a CT scan and that's when they found the tumor in the tail of the pancreas- approc 4 cm in size we were told and yes it was operable. Ok so we go in last week for the operation and the surgeon comes out and say there is nothing we can do the tumor is actually around 8 cm and encompasses approx. 80 percent of the pancreas and is traveling to the liver. It's infiltrated a main blood vessel and nerves. We were taken by compete surprise by this. How could the scan have been this wrong. The. Surgeon told us he has 6 months ...what we were told a few days earlier that this was early stage and not aggressive...boy they were wrong. Enough venting..my dad is going to the oncologist tomorrow but I am thinking he just wants a gauge of how much time he has. I want him to fight and think chemo could help? Any advice on how I can help. I feel like I let me dad down and we are out of options.

Hi. It took 2 ultra sounds, 2 CTs, 4 doctors and 7 months to find out I have pc. They said...pulled muscle, varicose veins, gallbladder. I think the first 2 doctors didn't believe me or thought I was a complainer. I know it's hard, but don't listen to the doctors time line for your Dad. At first I was told 3-5 months with no chemo. With chemo 1-2 years. It's been 16 months and counting... I'm stage 4 with mets to the lungs. The chemo I get now is folfirnox. I feel rotten for 7 days and then I feel pretty good for 7 days. Love and enjoy life today.

RE: Our story- can you relate?

by janet10 on Mon Apr 23, 2012 04:54 PM

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I was sick for many years with abdominal pain and had endoscopies, colonoscopies and blood work and told it was gastritis, and IBS by my gastro doctor who has been my doctor for over 20 years.

I became sick last March again with diarhea for 6 weeks. Had tests again and nothing found. It wasn't until I became jaundiced because the tumor was blocking the bile duct, had dark urine, itched and had clay colored stools that I had a CT scan. When my md who is also my friend got the results he was a shocked as me.

My advice to you is to stay on top of the doctors, try to get your dad the best care and have lots of hope. There are so many new treatments today for pc.

Good Luck and God Bless.

 

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