Who I am
My name is Rob, I'm 52 and just learned that my brother Jim, age 63 has been
diagnosed with Adenocarcinoma with circumferential esophageal mass measuring
approximately 43 x 58 x 71 mm (AP, TRV, CC) of the distal esophageal junction
with 2 enlarged perigastric lymph nodes. He has had a PET, CT, and endoscope
with an ultrasound to be done asap to accurately stage the cancer.
Over the past 2 weeks while waiting for the next doctors appointment and the
next test and the next appointment, I have been pouring over anything I can find
about this. The information of an encouraging nature is hard to find. Though I
have found some very positive cases stating complete cure, the positive
information is hard to find.
Naturally he is scared to death and trying to stay upbeat through this, however,
the more he reads the more he keeps stating a reluctance to accept chemo and
radiation therapy due to the possible effects after. I hope people here that
have been through this can give him a better understanding so he makes the right
decisions. Right now I am trying to help him just get to the next hurdle, and
get over that before he moves on to the next one.
Having been through this with my sister-in-lw who ultimately passed away from
squamous cell, I know the hurdles will be many. Knowing his cancer is less
aggressive, it is still cancer and I have been told that in comparison to other
cancers, they don't know nearly as much about it as the others.
Which leads me to this site. I know the medical journals, hospital sites, and
other web sites have tons of information, none of them give the info from a
patients viewpoint. I am hoping the people here can help us on the road to
beating this.
I will be reading the posts here and trying to learn what I can about all of you
with the hope that it will help my brother make the decisions he needs to make
with a solid understanding of what may or may not be in his future.
My heart goes out to all of you here fighting this damn disease, and may God
bless you all for sharing your thoughts and helping others get through this, and
I thank you for doing that.
Anything you feel is helpful is greatly appreciated, from diagnosis, treatments,
side effects, good or bad is welcomed. If you know of a website, or a book that
helped you, please let me know so I can pass it on.
Thank you again.
Rob
Comments
-
help
While my husband cancer is different cancer t4n1mo mets to the lungs, This is his second trip down the cancer road, he is doing fairly well. His cancer is alot worse type . But he is willing to try anything. I don't know the words to tell you how to help your brother, excpet to fight it. Who knows he may be the one to unlock the cure for this cancer.
My husband had 7 weeks of cisplatin and Radation the first time.He lost about 50 pounds. He had no surgery no tubes, no pic lines. While the first week or two after treatment was the hardest , he over all did great. That was 2009 one year later we are back again his cancer went to his lungs this time Carbosplain Chemo, while he is sick for about a week. He still does most of the things he has always done.
So one ever knows the words to say to someone. My hope is that your brother does the treatment. Sounds like he has a better out look for his cancer.
I wish him peace in his decession.
Jennie0 -
William (and others) are right-- FIGHT for life.
Rob- everything William said is right. To me, the MOST important thing is to find a cancer team that is very experienced with esophageal cancer and most important among them is that the surgeon does MANY minimally invasive esophagectomies. This is like having a heart/lung transplant-- one of the most difficult surgeries to perform and you want an experienced pro. And do not settle for any other type of surgery.
Also- in my hubby's case, the first GROUP of oncologists told him to go home and get his affairs in order. He had the tumor and a lymph node (slightly distant from the tumor). At first my hubby was like your brother... no chemo, no surgery, no feeding tube, no no no. The point is, within one cancer treatment facility they may well have the same philosophy of treatment, so don't settle for your second or third opinion at the same place.
Between myself and one fantastic friend, we convinced my hubby to go to the *best* and get another opinon... we ended up at Mayo clinic in Arizona. We also almost went to MD Anderson in Houston. You've also been told about Pittsburgh. There is also the Cleveland Clinic, I believe. There are a few EXCELLENT centers around the country. Go there. American Cancer Society can and will help with lodging. Some, maybe all, of these centers have patient navigators who help with the logistics of life aside from the medical. If not, the social workers will help. It is doable. We travel from Oregon to ARizona.
Also- my hubby was dead set against the feeding tube. Get over it. It will be a lifesaver for the period of time it is needed. Truly, it is necessary and not as awful as he may be imagining.
Good luck. Tell Jim his life is worth fighting for and though the treatments are difficult, the time he can gain from them is worth it for him and his loved ones.
Jen0 -
Give treatment a tryBJeastOR said:William (and others) are right-- FIGHT for life.
Rob- everything William said is right. To me, the MOST important thing is to find a cancer team that is very experienced with esophageal cancer and most important among them is that the surgeon does MANY minimally invasive esophagectomies. This is like having a heart/lung transplant-- one of the most difficult surgeries to perform and you want an experienced pro. And do not settle for any other type of surgery.
Also- in my hubby's case, the first GROUP of oncologists told him to go home and get his affairs in order. He had the tumor and a lymph node (slightly distant from the tumor). At first my hubby was like your brother... no chemo, no surgery, no feeding tube, no no no. The point is, within one cancer treatment facility they may well have the same philosophy of treatment, so don't settle for your second or third opinion at the same place.
Between myself and one fantastic friend, we convinced my hubby to go to the *best* and get another opinon... we ended up at Mayo clinic in Arizona. We also almost went to MD Anderson in Houston. You've also been told about Pittsburgh. There is also the Cleveland Clinic, I believe. There are a few EXCELLENT centers around the country. Go there. American Cancer Society can and will help with lodging. Some, maybe all, of these centers have patient navigators who help with the logistics of life aside from the medical. If not, the social workers will help. It is doable. We travel from Oregon to ARizona.
Also- my hubby was dead set against the feeding tube. Get over it. It will be a lifesaver for the period of time it is needed. Truly, it is necessary and not as awful as he may be imagining.
Good luck. Tell Jim his life is worth fighting for and though the treatments are difficult, the time he can gain from them is worth it for him and his loved ones.
Jen
My husband, age 71, diagnosed with EC at Stage II (barely) almost to a Stage III with no node or lymph involvement. He underwent chemoradiation and the Ivor Lewis procedure. Treatment has been successful. Last scan showed no cancer present. Upcoming scan very important. Doctors feel very good about prognosis. Treatment is brutal or was for my husband; however, we are beginning to get back to normal after 7 months of challenges. We are enjoying our family and grandchildren. He is busy with his practice. Bumps in the road still present but less frequent and less debilitating. He's looking forward to holidays with all of our children and grandchildren as we usually celebrate together. So, that being said, he was hospitalized two times during treatment due to swallowing issues and dehydration and sugar level increases. Feeding tube became best friend. Jtube is easy to take care of and you will be shown how, etc. Prefer Jtube to stent. What the previous posts have said is excellent advice. My husband was not a candidate for the MIE; however, he is healing well from his Ivor Lewis and surgeon well pleased. Family/friend support is necessary as there is much medication to balance. Improvements in chemoradiation nausea medications help immensely. My husband's extreme allergies, throat sensitivity and infection contributed to his hospitalizations. Many get by without these. AS the others recommend: Don't wait around to take action. Get to a trusted, experienced esophageal cancer team as soon as possible. You can always stop treatment, but you can miss a very important boat if you don't take action immediately. The previous comments are by EC survivors/caregivers who have helped me immensely and listen to what they say. Best of luck and prayers for you all in the path you are now travelling.0 -
Welcome, You are so lucky to
Welcome, You are so lucky to have found this site so early after diagnoses. I was diagnosed in Nov. 2007. I had my head ib the sand and did everything the Drs. said. Fortunately for me I had excellent drs. and care. I didn't know there were different tyes of surgery, so I didn't question the Ivor Lewis. I don't know if I could have had the mie or not. It sounds like my cancer was similar to your brothers. I had chemo pre op but no radiation. The road to fight this is very hard, for some worst than others. After joining here in July, I realize how blessed I have been. I was surounded by excellent caregivers that loved an supported me all the way. My husband refers to it as our journey. Even though it was happening to me, he was always a part of it. It sounds like your brother has a caregiver in you already. I have been cancer free since Oct. 2008. I have a Ct scan scheduled for Oct. These are regular after surgery for a few years.
I read william and others have already written. They have so much information. I wish I had them available to me when I was first diagnosed, But even now I love to come and learn all about it. I thank God for every day and want to keep up with others that have this so that I can encourage in any way I can. I pray for them and will also be praying for your brother. Just remember to FIGHT, FIGHT, Fight, The days a head will sometimes be very bleak, but remember the battle is worth it all!
sandra0 -
Helpzinniemay said:help
While my husband cancer is different cancer t4n1mo mets to the lungs, This is his second trip down the cancer road, he is doing fairly well. His cancer is alot worse type . But he is willing to try anything. I don't know the words to tell you how to help your brother, excpet to fight it. Who knows he may be the one to unlock the cure for this cancer.
My husband had 7 weeks of cisplatin and Radation the first time.He lost about 50 pounds. He had no surgery no tubes, no pic lines. While the first week or two after treatment was the hardest , he over all did great. That was 2009 one year later we are back again his cancer went to his lungs this time Carbosplain Chemo, while he is sick for about a week. He still does most of the things he has always done.
So one ever knows the words to say to someone. My hope is that your brother does the treatment. Sounds like he has a better out look for his cancer.
I wish him peace in his decession.
Jennie
Thank you Jennie for taking the time ti reply. I wish your husband the best. He beat it before, he can beat it again. He has you by his side and that's the best medicine he could ask for.
Rob0 -
Thank you Williamunknown said:This comment has been removed by the Moderator
William and Sherri,
I can not begin to thank you for taking the time to put your thoughts here for us in a way that equals the time and effort you put into your reply. I sent my brother an email last evening after visiting this site and reading some of the threads. He has been here and he has registered so I'm sure you will all hear from him very soon. You will recognize him. You see, I am the dashing, suave, handsome, considerate, brilliant one, and he is the other guy. (Don't tell him I said that)
To begin, I agree with your suggestion regarding a second opinion, in fact he is getting a third at a cancer center in Boston. Especially with two different opinions now and two courses of treatment reccommended. The key factor that we have been able to determine is the critical need to be staged correctly. Jim has not had the ultrasound yet and the doctor at Mass General has diagnosed him as T3N1M0. With staging being the factor that determines the immediate treatment, WHY and HOW could he be properly staged. Why did they not order the ultrasound as the second doctor has?
Jim's surgeon is supposed to be the best Laparoscopic surgeon in Boston. Jim was told no other surgeon in Boston has done as many MI proceedures as he has, and Jim is very comfortable with him. He is the second opinion that ordered the ultrasound in order to clear up the issues regarding Jim's stage. Once that is done, I'm sure Jim will be able to make an educated decision regarding treatment.
Jim also has an appointment with Dana Farber Cancer Center in Boston. I believe he has the best of the best to get him through this. I know he has many questions that he has yet to find answers to, but I believe this site and the people that come here, may just be the best place for him to find some of the answers.
I know I didn't touch on much of your reply yet, but I will after I read through it again. I've been reading so much that I've reached maximum confusion tonight. So I will get back here tomorrow and talk more.
Thank you again,
Rob0 -
Hi Sherriunknown said:This comment has been removed by the Moderator
Thank you for your kind words. I hope your husband beats the hell out of his invadors. I will also type more to you tomorrow when I am a little less tired.
Till then, thank you so much for your reply.0 -
Bit by Bitunknown said:This comment has been removed by the Moderator
William you wrote:
"So your assignment for me is to tell me where Jim lives and who are his doctors? What symptoms did he exhibit that led him to have an Endoscopy? Does he have a positive attitude? That is debatable isn't it? I take it you have some level of optimism or you wouldn't be stopping in here."
Jim is in Boston. He has been to the Boston Medical center, Mass General Hosp, and will be seen at Dana Farber Cancer center soon. He had a endoscope and biopsy, result, Adenocarcinoma. He began throwing up blood and that is what prompted the endoscope. I would say yes, he has a positive attitude, though he has many many questions, and due to speculation, his attitude fluctuates.
From everything I have been able to find and read, I am awaiting the results of the ultrasound. My understanding is this is the critical test that will determine the stage and treatment.
My brother is an exceptionally smart man with an attention to detail, which is good and bad, but I know he will not make any decisions without having the facts he needs prior to. My appeal is that he wastes no time in starting whatever treatment is determined to be most beneficial to a positive outcome. My feeling is because the cancer has clearly been there for some time, and the fact that he was throwing up as much blood as he was, the cells are in his bloodstream and that needs consideration.
I failed to meantion. Last October he choked on some food and visited the emergency room. My understanding is that the offending bit of food dislodged on it's own, no tests were done to see why this happened. We are assuming that this was the first symptom and it was overlooked at the time. Since then he has had no problems, symptoms, or pain. If this would have been tended to then, I know the situation today would be much different.
I will return later and try to answer more of your questions. Thank you again for your interest and for all the homework you have given us. I'm waiting for his call because he had an appointment today with the doctor at Mass General. Yes, the doctors that staged his cancer witout the ultrasound. Though he has pretty much decided against them, he is interested in what they have to say and for answers to his questions.
William, I have read many of your replies to others here. I think I know why you were put on this earth and given the opportunity to go through everything you have.
You are our gardian angel.
Sincerly,
Rob
** I don't have all the specifics of his appointment yet, but he did say that he met with a different doctor and another surgeon that happened to just finish a surgery and stopped in to meet him. He said they answered all of his questions and he is setting up the ultrasound, along with the biopsy of the affected lymph nodes.
He is also setting up the dates to begin the chemo and the radiation therapy both before surgery. In speaking with him he sounded much more relaxed and upbeat about this. I think he is just relieved to have his questions answered and they are in keeping with everything he has read since the diagnosis. I believe the replies to my first post also helped him and gave him some important questions to ask. So again, I thank you all for taking the time to reply.
I will speak with him again later tonight, he had to go to work so our discussion was short.0 -
Great newssandy1943 said:Welcome, You are so lucky to
Welcome, You are so lucky to have found this site so early after diagnoses. I was diagnosed in Nov. 2007. I had my head ib the sand and did everything the Drs. said. Fortunately for me I had excellent drs. and care. I didn't know there were different tyes of surgery, so I didn't question the Ivor Lewis. I don't know if I could have had the mie or not. It sounds like my cancer was similar to your brothers. I had chemo pre op but no radiation. The road to fight this is very hard, for some worst than others. After joining here in July, I realize how blessed I have been. I was surounded by excellent caregivers that loved an supported me all the way. My husband refers to it as our journey. Even though it was happening to me, he was always a part of it. It sounds like your brother has a caregiver in you already. I have been cancer free since Oct. 2008. I have a Ct scan scheduled for Oct. These are regular after surgery for a few years.
I read william and others have already written. They have so much information. I wish I had them available to me when I was first diagnosed, But even now I love to come and learn all about it. I thank God for every day and want to keep up with others that have this so that I can encourage in any way I can. I pray for them and will also be praying for your brother. Just remember to FIGHT, FIGHT, Fight, The days a head will sometimes be very bleak, but remember the battle is worth it all!
sandra
It is great to hear another positive outcome. The statistics are so discouraging. I hope my brother will be another of the encouraging outcomes. From what I have discovered, he is in one of the best areas in the country for medical care.
May I ask what part of the country you are from, and where you received your care? What chemo drugs did you have?
Thank you very much for taking the time to reply.
Rob0 -
I am in Georgia and had myJimsBrother said:Great news
It is great to hear another positive outcome. The statistics are so discouraging. I hope my brother will be another of the encouraging outcomes. From what I have discovered, he is in one of the best areas in the country for medical care.
May I ask what part of the country you are from, and where you received your care? What chemo drugs did you have?
Thank you very much for taking the time to reply.
Rob
I am in Georgia and had my surgery at Emory University hosp. midtown. I didn't have radiation but I had four rounds pre op of three different chemos Cisplatin,Epirubicin and 5-fu (fluorpuracil). I was only suppose to have three but the 5-fu was administered continually by pump three weeks at a time. My counts would get low so I would have to come off for a week and take shots, then go back on. The Dr. added the extra round to make sure I had enough. After sugery I was put back on the same chemo, but two weeks later chemo was stopped because of complcations. Two months later in Oct 2008 ct scan indicated I was disease free. After reading on this site I wonder why I wasn't given radiation. It seems most do receive it.
The treatment can be rough, but worth it. I know that during my treatment life had so much meaning, I saw nature in ways I had never seen before. I looked forward to seeing all the beauty around me. Family and friends became so much more precious. God has been so good to me!
SAndra0 -
I am in Georgia and had myJimsBrother said:Great news
It is great to hear another positive outcome. The statistics are so discouraging. I hope my brother will be another of the encouraging outcomes. From what I have discovered, he is in one of the best areas in the country for medical care.
May I ask what part of the country you are from, and where you received your care? What chemo drugs did you have?
Thank you very much for taking the time to reply.
Rob
I am in Georgia and had my surgery at Emory University hosp. midtown. I didn't have radiation but I had four rounds pre op of three different chemos Cisplatin,Epirubicin and 5-fu (fluorpuracil). I was only suppose to have three but the 5-fu was administered continually by pump three weeks at a time. My counts would get low so I would have to come off for a week and take shots, then go back on. The Dr. added the extra round to make sure I had enough. After sugery I was put back on the same chemo, but two weeks later chemo was stopped because of complcations. Two months later in Oct 2008 ct scan indicated I was disease free. After reading on this site I wonder why I wasn't given radiation. It seems most do receive it.
The treatment can be rough, but worth it. I know that during my treatment life had so much meaning, I saw nature in ways I had never seen before. I looked forward to seeing all the beauty around me. Family and friends became so much more precious. God has been so good to me!
SAndra0
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