Early study found it had high accuracy, but experts say it won't replace colonoscopy anytime soon
by jaycc on Sat Jun 02, 2012 02:20 PM
Its been 7 months since my husband died of EC. I have very strong coping skills, and unfortunately have gone through cancer multiple times.
He was only 50, only got 10 months after diagnosis. I've read the information on caregivers and the cancer family members wondering if they did enough. I feel most of web information is slanted and very generic.
Along with the other parts of grieving this one I'm ready to bring to closure. I do believe in heaven and I have asked my husband what else could I have done . In his kind way, his response was "I'm not going to have this conversation"
Well after many conversations, aware that it won't make a difference, he has past on. Probably not what the medical side of this blog wants to hear , I have my answer.
I have come to peace with this question. The answer is "NO" the medical gang did not do enough. There were more options, it should of been more of his choice about additional radiation and risky but possibly life extending surgery.
Message to the medical world, don't dismiss this as a grieving but take it more as a learning, you need to do much better about the patient be the captian of the ship. Present Options, do your homework or be willing to send your patient somewhere else.
by JackieJo on Sat Jun 02, 2012 07:07 PM
I am so sorry for your loss I also lost my 58 year old husband Joe to EC with mets to the liver and nodes. He was diagnosed on Oct 15, 2010 with EC...had a CT scan on Oct 18, 2010 and it was found that he also had multiple tumors throughout his liver. Diagnosis from the start was Stage IV Adenocarcinoma. Joe passed away 9 months later on July 21, 2011 @ 5:15 AM. The only comfort that I have is that I was able to keep him home to die and that he passed over peacefully.
I wanted to let you know that I agree with the last paragraph of your post. Joe was told he was not a candidate for radiation or surgery. I wonder now if maybe we should have gone elsewhere for a second opinion. In the beginning we talked about it but Joe felt that his oncologist had all the answers and he felt comfortable where he was. I often wonder if maybe we had gone to Sloan Kettering or Boston that they might have prolonged his life or even put him into remission. As they say hindsight is 20/20.
My thoughts and prayers are with you.
Hugs and Prayers
by eastwest on Sun Jun 03, 2012 01:08 AM
Your last sentence hit home for me. For 6 months we dailied at another hospital with other drs. who I deem: "played god." They did stents and dilations and said at first the area was too traumatized (by them???) to take a biopsy. He was hoarse and they didn't worry about that either. Then they said the biopsy said it was NOT cancer. So they either took it from the wrong area or else sent it to someone who does not know how to read biopsies. I hate to talk about 3rd world countries but even on the news it says we are sending biopsies there to cut corners.
"Didn't do enough?" I went there for months after we took him across the river to another hospital. As a nurse I should have questioned more. I believe Phil would have been dead 9 months earlier if we stayed where we were. Probably that same weekend we went elsewhere since the tumor had eaten a hole thru to his breathing.
I think Phil would want me to let this go, at least for him and my sake. I know he is a better place and whole. Yet how many other people will die or die earlier because of faulty care and diagnosis?? irene
by jaycc on Sun Jun 03, 2012 01:30 PM
Thank you both for your responses. I guess in the world of EC or maybe in the world of cancer, its still 50/50 chance on getting good medical direction. Let's face it, they just don't know, too bad some medical people just are willing to say that.
I am aware of the flip side. What might of been extra months could of have no quality or dignity. He was fine early Dec. got sick the second week of Dec and was failing quickly by Jan 1. The good thing was chemo started quickly, he may not of made it out of Jan. if it wasn't for that fast setup.
Its just so odd that the medical world unlike other industries has this play god type mentality, and working as a team, and focused on a patient as an individual seems to be a new idea.
As Irene said, Sean would also want me to let it go, but also help others if possible. I'm young and an information specialist, so I think I will try to do something in the area of helping people be informed, or helping the east coast medical world communicate better.Not sure how to do it yet.
by eastwest on Mon Jun 04, 2012 12:44 AM
Jaycc I think back to when Phil went into the hospital the first time December 31 2009. unable to eat, hoarse. They did dilations but NO biopsy. "Too much trauma to the area" was what we were quoted. in June 2010 we were told the biopsy said NO cancer and that he just needed to ahve a surgical reconstruction of his esophagus.
Yet U of Penn there was no problem getting a biopsy. The gastro dr who worked miracles and helped keep him alive for 9 more months gave me a shocked and disgusted look at how he was treated elsewhere. Why couldn't they have said they didn't know what they were doing and send him somewhere else??? The jerks even gave us a hard time getting his reports over to U of Penn. But the gastro dr got them!
I spoke with 2 lawyers after Phil passed but neither would take on an EC case. Irene
by jaycc on Thu Jun 28, 2012 04:11 AM
I'm kicking around an idea, let me know what you think.
EC B. EC B is not EC bereavement but EC bridge. It will take some time for new medicines and treatment to help this horrible disease. So the EC B, is a 6-7 year bridge focused on doing what we can to help EC patients now.
First thought is, all EC patients need to be seen by a EC Onco. This is so specialized and I hear of so many stories like yours that doctors are making obvious mistakes that the EC specialist don't seem to be making in the survivor stories
by DSTNDANGL on Fri Jun 29, 2012 06:24 AM
I ask myself the same question. My father was diagnosed January 20th but confirmed on January 23rd. He was told he had to wait 2 weeks to see an oncologigist and before he could see the oncologist he had to see a surgeon and a doctor in the radiology/oncology department. He was supposed to meet with both the Surgeon and the radiology/oncology department the same day. He met with the surgeon but before he could see the other he was admitted to the hospital. By the time they found the Cancer he had grown so weak with not getting enough to eat that he had to be admitted due to weakness. They started his first chemo treatment in the hospital. He was released 10 days later and sent home still weak but they said it was due to the chemo. My father had always been a strong and independant guy but when he was released he went from walking on his own to using help from my brother and myself to finally a walker and then a wheel chair. His weight declined ever so quickly he went from weighing 280 lbs to being under 200 in a little under 8 months. I asked the doctor if it was normal and he said yes the chemo was the cause. After the third round of chemotherapy my father was just too weak so they started him on radiation and a low dose of Chemo. Well at that point he stopped eating and had no appetite at all and was admitted to the hospital again. When he asked about the surgery the oncologist simply said that his type of cancer was incurable and they stopped the chemotherapy and the radiation. I saw a steady decline in my fathers attitude and we kept asking if things were okay and he would say yes. We currently live in SC and are origionally from Boston I was thinking about taking him back for a second opinion but they said there was no need. Even though it was incurable they could take care of it with chemotherapy when it was up. He was released from the hospital and went back in 2 days later. Where they started him on a new chemothreapy drug called Herceptin. He did 1 round in the hospital and was released came home and proceeded to lay in bed for the next 5 days before being put back in the hospital for weakness due to the cancer they said. I visited him every other day but on the Morning of June 11th I got the call that my father was in ICU and it looked like this was the end of his fight. He passed away on June 13th with his children and grandchildren all around him. I keep thinking to this day did I ask enough questions. Should I have forced him to get out of bed and headed back to Boston for another opinion. Was there anything else I could have done. I keep asking myself why did his oncologist say he was doing soo good and let my father belive that he was going to make it and then at the end destroy his hopes. I honestly think that had they told me in the beginning all of this Then I would have seeked a second opinion before he went through all this.
by eastwest on Fri Jun 29, 2012 12:39 PM
I see so many of us here question if we could have done more, if we should have sought another opinion, tried something different. Is it the love in us that brings about this guilt? I have no answer. I can only say that I have suffered thru this myself. What I wonder is... do any doctors suffer thru it? Or are we and our loved ones just cases. Are some doctors too proud to admit they don't know and to send a patient elsewhere.
A man I know went to a different gastro dr and the dr sent him to U of Penn ASAP. He is doing fine. While Phil's dr let it drag out for months saying they would do another dilation, a stent to open the area wider, the area was too traumatized to take a biopsy and last but not least telling us 10 days before we talked him into going to U of Penn that the biposy said it was not cancer. It makes you wonder who you can trust.
I know NOT to trust these gastro drs where we first went. My DIL was admitted earlier this yr for abdominal pain, was in the hospital 2 days. They never did a test for gall stones. I told her to go see another dr and sure enough there was a bunch.
I would never complain about the care Phil received at the U of Penn. His gastro dr and oncologist and radioncologist were the best. But i worry how many others will get misdiagnosed at the first hospital and dr we were at. How many more lives will be lost and i don't think there is a thing I can personally do about it.
In the end I think we have to say we did the best we could with the knowledge we had. I really think Phil would tell me that from where he is now even though that first gastro dr left a bitter taste in his mouth. Irene
by eternalife on Wed Jul 04, 2012 05:38 PM
I know you had quite the detour in getting the treatment plan for Phil, our journey ran amuck too. Mark was in the hospital a year ago for coughing up some blood, told his esophagus was inflammed, given some drugs to reduce the irritation and some other drugs to keep any reflux down, even though he has not typical symptoms of GERD prior. There was never any biopsy done.. the doctor was to follow up some 3 months later, the sectretary or assistant must have forgotton to give us a call and it was not until Dec. 2011, after another scope , that the word was he had EC...
I would imagine he had the tumour back in July 2011. Unfortunately, it was a 6 month delay before a diagnosis was given.. We will never know what might have been or what could have been, no use living with regret or doubt... moving forward.. the medical field is hugely over taxed and are the right people in the right jobs anyway...
Keep the faith,
by ColleenLetwinch on Sat Jul 07, 2012 01:48 PM
I have read a few of your posts and understand your pain. But from the patient's point of view, at least this ones, maybe it was for the best. All the procedures and tests, etc. are painful and uncomfortable to say the least. And though it kills us to think of leaving our loved ones, many are the times it would just be so much easier. And this is from someone that still can get around, clean house, cook, do wash, etc. and I love all that, go to church.........that is great to me. But I am constantly tired, unbearable, and yet most times can't sleep. So when my time comes let me go. Or at the least tell me the full truth and let me decide.....do not make the decisions for me! I need to know what I am facing. I do not like half truths!
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