So many new people; so many unusual circumstances

BMGky

I read the posts with the idea of offering some personal experience information as a caregiver, but I am overwhelmed. There are so many new Stage IVs or Stage IIIs with complications. Some are not getting the protocol I understand to be the latest approach, and I don't understand why. Sometimes I think I read that the doctors indicate the condition is at an operable stage but prior medical history says the surgery would be risky and don't let the patient "go for it." I'm not there. I don't know their thinking. I'm certainly no medical professional. My husband's medical history included a previous quadruple by-pass, Type II diabetes, and dealing with two torn rotator cuffs while undergoing the treatment. He was in his early 70's at the time. It was rough; however, nearly 3 years later, he is enjoying living.

I feel inadequate to respond. I encourage those just diagnosed or in the initial treatment phase to go to a clinic--private or university--that specializes in cancer care so that a team approach can be utilized. I understand that a "team approach" involves doctors from several treatment areas who will be involved in the actual treatment plan -- a unified approach. I believe a "board approach" is where a group of highly specialized cancer specialists review the medical records of the patient and set in place a treatment plan but these doctors may not necessarily be the treating doctors.

I've read where major cancer centers have wrought miracles and I've read where they have, to me, screwed up. Likewise, I've read where unranked but highly qualified cancer clinics have done superb treatment (as in my husband's instance). I think the key is a clinic dedicated to the treatment of cancer.

There is no excuse for rudeness on the part of any medical staff, particularly the physicians and nurses. They are busy; however, it is their responsibility to care for each patient to the fullest extent of their knowledge and abilities.

So, I have little offer nowadays. But, I do hope that the posts that go unanswered or little response understand that as for myself, there is just uncertainty in what to say.

I do see some posts that are from very knowledgeable people, and I'm so glad they continue to post. Paul61, Donna70, Amajosmom, and others are instrumental in assisting our fellow travelers.

BMGky

Josie60

Yes thankfully there are
Yes thankfully there are still some posters out there with some good information and encouragement, but unfortunately several people who were great resources for information were banned from this site a few months ago for reasons unknown to me.

BMGky

Josie60 said:

Yes thankfully there are
Yes thankfully there are still some posters out there with some good information and encouragement, but unfortunately several people who were great resources for information were banned from this site a few months ago for reasons unknown to me.

It is most regrettable these
It is most regrettable these people were banned. They saved lives. They helped everyone

There are several websites that have sprung up. I believe ECfighters.com is one. There are others.

The tragedy of the banning is that the American Cancer Society by its actions through its representatives has created a vast void of needed information.

You might email Paul61 for information on how to access other sites.

FlorenceNightingale911

BMGky said:

It is most regrettable these
It is most regrettable these people were banned. They saved lives. They helped everyone

There are several websites that have sprung up. I believe ECfighters.com is one. There are others.

The tragedy of the banning is that the American Cancer Society by its actions through its representatives has created a vast void of needed information.

You might email Paul61 for information on how to access other sites.

Most regrettable indeed
Most regrettable indeed BMGky - I have noticed a lot of people needing help. While those you mentioned are trying to fill in the void there is nothing like “first-hand” knowledge from many patients that has been diagnosed with this cancer, no matter the stage. I do know that each stage has its own characteristics, and in this case, “it does take a village” to get a complete picture. The more that are willing to take the time to respond to the newbies, the better. I learned so much from William and Sherri when one of my relatives passed on with EC Stage IV.

I signed on to EsophagealCancerFighters.com although I haven’t posted anything, when I found out one of the banned members, started that new website. I see that William and Sherri are over there now. Once you’ve had a family member die from Esophageal Cancer, seems you keep on reading hoping to learn and understand more, or never read another thing about EC because this cancer is so painful. I’m mostly a lurker now, but I still read a lot.

“Flo”

Amjosmom

FlorenceNightingale911 said:

Most regrettable indeed
Most regrettable indeed BMGky - I have noticed a lot of people needing help. While those you mentioned are trying to fill in the void there is nothing like “first-hand” knowledge from many patients that has been diagnosed with this cancer, no matter the stage. I do know that each stage has its own characteristics, and in this case, “it does take a village” to get a complete picture. The more that are willing to take the time to respond to the newbies, the better. I learned so much from William and Sherri when one of my relatives passed on with EC Stage IV.

I signed on to EsophagealCancerFighters.com although I haven’t posted anything, when I found out one of the banned members, started that new website. I see that William and Sherri are over there now. Once you’ve had a family member die from Esophageal Cancer, seems you keep on reading hoping to learn and understand more, or never read another thing about EC because this cancer is so painful. I’m mostly a lurker now, but I still read a lot.

“Flo”

Check in daily!
I check in DAILY at many sites. I refer people places by private message. I try my best to get answers and be a cheerleader. I have made MANY friends throughout this journey with my Dad. Each story of survival is different. I have learned A LOT and respect those individuals who have lost loved ones, but still reach out to those attacked by the Beast. This is a tough battle, but arming ourselves with knowledge has been a remarkable weapon. Knowledge really is power in surviving this. Learning from those who have been there and done that has been invaluable information. I know how frightened I was reading all the EC stats. BUT, then I found others who reached out to me. And so, I do my best to reach out to others. Each day is a blessing! If you need me, I am ALWAYS here. I may not have the answers, but I'm gonna do my best to find them with you!!

~Jayme
Dad DX Stage IV in August of 2010
Still in the Battle

BMGky

Amjosmom said:

Check in daily!
I check in DAILY at many sites. I refer people places by private message. I try my best to get answers and be a cheerleader. I have made MANY friends throughout this journey with my Dad. Each story of survival is different. I have learned A LOT and respect those individuals who have lost loved ones, but still reach out to those attacked by the Beast. This is a tough battle, but arming ourselves with knowledge has been a remarkable weapon. Knowledge really is power in surviving this. Learning from those who have been there and done that has been invaluable information. I know how frightened I was reading all the EC stats. BUT, then I found others who reached out to me. And so, I do my best to reach out to others. Each day is a blessing! If you need me, I am ALWAYS here. I may not have the answers, but I'm gonna do my best to find them with you!!

~Jayme
Dad DX Stage IV in August of 2010
Still in the Battle

I see and read your posts.
I see and read your posts. It is so good that you are "Still in the Battle."

You know, even with my husband's successful treatment to this time (one never presumes that there is no continuing concern), we still battle the changes in eating and energy and loss of strength everyday.

Yet, he and we are among the fortunate ones. We are thankful for every day and do our best to honor those who have battled and are still battling this terrible diagnosis.

I was so proud of the esophageal cancer family in its response to a recent medical oncology journal suggesting that scopes are over-used when dealing with acid reflux and Barrett's esophagus. The article in essence is a statement that since EC numbers are small, the cost of screening scopes are not warranted since only a small percentage is affected. To those affected, the percentage is 100%!

Because of my husband's diagnosis, our sons got scopes. One was clear--which I thought his wouldn't be. The other's scope showed esophageal inflammation and ring formation [which I thought his wouldn't show anything] and was put on Nexium.

My husband to his knowledge did not have frequent heartburn--very rarely did upon holiday over-eating. Moderate beer drinking which is supposed to be beneficial in the limited amount he ingests. He quit smoking filtered cigarettes over 40 years ago. His seeming risk factor was being overweight. Even that, considering his size and activity, he was not morbidly obese. What caused his problem? I don't know. We recently learned an uncle supposedly died from EC.

I don't understand why there is so much acid reflux nowadays. Instead of throwing pills at the problem, let's look at why it's increasing in occurrence.

I personally feel scoping should be added to the list of age-related mandated screenings which includes mammograms, prostate exams, colonoscopies, skin exams.
BMGky