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Just diagnosed with esophagus cancer, lots of questions.

rmkbrad
Posts: 177
Joined: Dec 2009

Hello everyone, I was diagnosed with barrett's esophagus with adenocarcinoma, after an ultrasound the doctors have concluded it is advanced stage 1. Lucky for me, So some of the questions I have are, who has had a laparoscopic esophagectomy with gastric pull up, and how long was the recovery, how long before I can go back to work? Also I live in the Reno Nevada area, has anyone had this procedure done in Reno or in northern California? Any advise on diet before and after or any information to steady my nerves would be great. My one big complication is I am a kidney transplant recepiant, 9 years now. So I take alot of meds, are you able to take your meds via liquid?

Brad

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

There is no one here who can do what you need and do it right. You need to go out of state. I hear that UCLA is ok if you want to go to Cali. Personally, I'd look at Univ of Colorado, which is close to you.

We are at MD Anderson, and they can do what you need done and really watch your concerns with the kidney.

You take your meds via a feeding tube if you need to. My hubby even took pills that way, you mashed up up w water. My husband eats a fairly normal diet--and he's going for his 3 month check next week. He eats less, and eats more often. He doesn't do bubbly things or milk. Others do ok with milk. It depends on the person.

CONGRATULATIONS on finding it at stage 1.

Betty in Vegas
ps. There is another family facing EC in Reno...he's at MD Anderson too. I think he did the chemo locally, but I think you'll just do surgery probably. (Most stage 1's do that it seems.)

MAE66
Posts: 70
Joined: Nov 2009

I don't have any answers for you regarding surgery, my husband is stage 4. There are others here who can help you much better than I can. I saw Betty mentioned the Univ. of Colo. They have a sub specialty in EC. We went there to have some tests done and to meet with one of their GI Drs., who was very helpful. We also went for a second opinion, and are very impressed with their GI team. If you would like more info on Univ. of Colo., please e mail me.

Susan

weezie47
Posts: 22
Joined: Dec 2009

Brad,
My husband has also had a kidney transplant(6years). He was dx in Dec with stage 3. The drs will not do chemo because of possibility of loosing his kidney. I know everyone is different, but wanted to let you know their opinion. They also do not want to do surgery because he developed diabetes after the transplant and because of the immunosuppresive drugs. Also, his nephrologist cut back on some of his meds(Calcium, Magnesium, etc.) because he is having a hard time swallowing. We live in WV, but we went to Cleveland Clinic in OH for their opinion because of all his complications.His is more advanced than yours, so Thank God they found yours early. Please keep us posted with your progress. I wish you the best! I know that you have been through alot already, Keep the Faith and you will get through this also! Goodluck with everything and I will keep you in my prayers.

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

Brad,

Sorry to hear about your diagnosis - but congratulations on your early diagnosis.

My dad was just diagnosed with stage 2 or 3 esophageal cancer over the holidays. I have been going through the same search to get him the best care possible (he has great insurance). Because I am near NY we are going to take him to Sloan Kettering – have the first appointment next week. I would recommend that you try and locate a hospital designated as a "cancer center" by the National Cancer Institute (NCI) and one with a specialty in treating esophageal cancer. There aren’t that many centers to choose from. Try and get the best medical care possible with a surgeon and team that deal with these issues everyday --- this is a time to get a specialist with experience especially since you caught this so early. If you have family or friends near one of the centers and have a potential support system you might want to consider getting treatment there.

National Cancer Institute website for Esophageal Cancer http://www.cancer.gov/cancertopics/types/esophageal

A good explanation on what to look for when choosing a Hospital and Physician for cancer care from Sloan Kettering’s website there are also links to other sites http://www.mskcc.org/mskcc/html/9240.cfm

Good luck

rmkbrad
Posts: 177
Joined: Dec 2009

My wife and I have been doing alot of research on this, the Mayo clinics do over 1000 a year. It seems that the hospitals that do alot have a greater success rate. I have okay insurance but I am also a service connected disabled veteran, so I can use the va hospitals if needed. Good luck to everyone on their journey with this, I just treat is as another bump on the road of life. Or like I tell them at work, I'm getting a paid vacation for a few months.

Brad

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Unclaw,
Welcome to this site. It has been a wonderful experience for me. My dad, Ray, 71 dx with ec in 11/08. Stage IV. He had xeloda oral chemo and 6 weeks of radiation at University of Virginia. Pet scan showed consideralble shrinkage in tumor. 2009.....dad is in remission, but still having difficulty swallowing. Had dialtion done to esophagus. GI dr said she did not see any cancer in the esophagus. Had to have another dilation done. December 2009....had severe pain in right side, became jaundice. Admitted into hospital for 8 days. Had to have two units of blood because of being anemic, iv hydration due to be dehydrated. Had to have stent put in esophagus to open it more, had to have stent put in bile duct which was blocked.
Ultra sound and ct scan showed lesions to the liver. Oh boy! here we go again!! Dad is almost ready to give it all up! Drs are not ready to give up, neither am I. He will start chemo for the liver lesions within the next 3 weeks.

That all being said....this is a looong, bumpy, road. Make sure you ask a lot of questions. Being in Ny is a plus. Sloan is an excellent hospital. Do a lot of research. Keep a journal, tell you dad to write in it too. It is so much easier to express your feelings on paper. We have a family journal. It is very helpful. Best of luck to you and your dad. You are on the right road. Stay in touch. There is also a chat discussion board here, where you can chat with other cancer survivors and caregivers. Prayers are being said.
Tina

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

Thanks for the welcome and suggestions. Wednesday we go to Sloan for an initial meeting. My dad lives in Louisiana and they don't have any major cancer centers. I told him we needed to get him the best medical care because he has a fight ahead of him and I want the A team on his side. I am spending my free time trying to learn as much as I can and prepare for my parents arrival and stay. I am trying to figure out the things I need to do to make his treatment easier and let me know what to expect. In this information age it is amazing home much is available online --- we are truly blessed to be in this time.

Hopefully your dad will respond to this newest round of chemo. Good luck and I look forward to getting to know you better.

Cindy

StarvinOG
Posts: 5
Joined: Jan 2010

Hi Cindy,

My dad was diagnosed in November 2009. He started his first chemo treatment this past Wednesday under the care of Dr. Meng. We have been so impressed with SK. They have been very thorough.

This discussion board and the other info available on this site has been such a blessing in helping me to understand the disease, what to expect, and how I can best provide the care my dad needs as well as being able to support my mom.

The better informed you are, the better prepared you are to ask questions along the way.

All the best to you and your family.

Arnold Teixeira
Ocean Grove, NJ

young23
Posts: 2
Joined: Jan 2010

Hi Brad,

Sorry to hear about your diagnosis, but you certainly are fortunate to have caught it at Stage 1. I was diagnosed with Stage 3 EC back in May of 2008. I went through 4 rounds of Chemo, 28 days of radiation and subsequently laparoscopic surgery in mid-Sept of that year. I was in the hospital for 8 days with no complications. I was able to eat soft foods and liquids for the first few weeks, before moving on to solids. I was able to go back to work full time in early December.

My advice to you is stay positive, arm yourself with as much information as possible and wage the battle with everything you have. A very helpful website which I was fortunate enough to find early on in my fight is: http://esophagealcancer.org/main.html

A vast number of your questions will be answered here. It certainly helped me and calmed my nerves in those tense early days.

Best of luck to you and be well,

Bob

young23
Posts: 2
Joined: Jan 2010

Forgot to mention two important items: I had my surgery at New York Presbyterian/Columbia by Dr. Joshua Sonett, whom I highly recommend. Also, look to be treated at a high volume cancer center in a large metro area. they typically have the best results. Secondly, after 2 follow-up Cat scans (6 mos and 1 yr) I remain cancer-free to this day.

Best,
Bob

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Brad,
Welcome to this site. You will find it to be very helpful. You are so lucky to have been dx at stage I. Most times ec is not dx until stage IV. You will meet a lot of people here who have had the surgery you are talking about. I am a caregiver for my dad, Ray, 71, dx ec stage iv, 11/08. He had xeloda oral chemo and 6 weeks of radiation. Pet scan showed considerable shrinkage. Still having trouble swallowing, had two dilations, had to have stent put in to open esophagus. That is working great. Now in 2010, the ec has methasized to his liver. He will start chemo for this within the next 3 weeks. This is a very hard experience. Make sure you ask a lot of questions. Get second opinion if you feel you need to. Yes, a lot of the meds can be crushed or given in liquid form. Since you caught this at stage I, you should have a real good chance of having it removed, and not giving it a chance to methasize to other body organs. Keep in touch. Prayers are being said.
Tina

rmkbrad
Posts: 177
Joined: Dec 2009

The VA hospital in Reno called today and wants me to come in next tuesday to meet with the oncologiest, I guess they want to do a Pet test and maybe some more. I already had an endoscopic ultrasound now I wounder if the Pet test will show more or less than the ultrasound since the ultrasound seems to be the lastest test. Being a relatively healthy person besides cancer and kidney transplant I hope to see all three of my chidren grow up and at least graduate. Thanks for all the input and your stories, the extra links have been really helpfull.

Brad

rmkbrad
Posts: 177
Joined: Dec 2009

Has anyone had their esophogetomyj done at the UCLA medical center? They are on my medical prefered list.

Brad

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Brad,
Wanted to let you know that a pet scan will show the most detail. It shows much more than the ultra sound. I do not know anything about ucla, but if it is on the preferred list, that is a great sign. And university hospitals are great because they are teaching hospitals, which are always up on the newest things. Hope this helps. Best of luck.
Tina

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Welcome
I'm Kathy Aka mumphy. You are very lucky to have an early diagnosis. My husband Al has Stage IV and has had his laproscopic esophagectomy. We also are lucky enough to live in Pittsburgh
and to have his surgery done by Dr. Luketich.

This is a wonderful site to ask questions and to vent or anything else that happens to you along the way.

Please keep us posted on your progress. I would like to know how treatment is for someone who
has been diagnosed early. Not that I think that having EC is good at all.

God Bless
Kath

nut1709
Posts: 2
Joined: Feb 2010

Brad,

Check out University of Chicago. The have a specialize center for esophageal cancer.
My wife had surgery and recovered quickly

Norm

weezie47
Posts: 22
Joined: Dec 2009

Brad, Please do your homework before starting any chemo. My husband also had a kidney transplant for 6 years now. His onc. told him he did research and it was okay to do chemo if they hydrated him while he was receiving it. Well, he developed pneumonia after first round of chemo, so it was stopped. This was a blessing, as he then went into renal failure. They did a bioposy on the transplanted kidney and found that the chemo was destroying the kidney. He is now on dialysis( hopefully temporary) to restore function. His creatine is coming down slowly. He is not getting any more chemo. Still doing radiation. Also, he was not a candidate for surgery because of the immunosuppression and the diabetes he developed after transplant. I'm giving you this info, so that you will be aware of what might happen. i know everyone is different, but I pray that you do not have to endure what he has. May God bless you in your journey through this. I wish you the best. Will keep you in my prayers.

rmkbrad
Posts: 177
Joined: Dec 2009

I had tonsils taken out last Thursday 2-4-10, Ouch. I had a tumor in my left tonsil that was large and had grown. They said there is some cells still there and also have a pin head spot on one of my Lungs. Not to mention the andiocarcinoma in my esophagus. The doctors said they want to do chemo and radiation for six weeks. I asked if they would put me on dialysis to aid in removing the toxins from my body. The docotors at University of California San Francisco said they treat people with kidney and liver problems all the time and it should not be a big deal. Anyway I am suppose to here from the tumor board this week and the initial plan was to do chemo at the va hospital and then shuttle over to the university for radiation. I did some research and the university has some of the newer technology, like the proton therpy. Anyway I am really groggy and can type very well while im on pain meds.

Brad

Lucky Micka
Posts: 3
Joined: Jan 2010

Brad,
I was diagnosed with stage one July 28th and underwent the surgery August 11th, in Tampa General Hospital, spent 1 week in intensive care and another in hospital. Had a pet scan in November and oncologist has pronounced me "95% Cancer Free", told me everybody has the 5 percent risk. I was very fortunate that I did not have to use the feeding tube they sent me home with, and had it removed after 60 days. Cannot tolerate dairy products now, as there is a nerve in the stomach they had to cut to move things around. They removed 1/3 of my esophagus and 1/3 of my stomach during the proceedure. Now have to be picky about what I eat, and how much. Believe it or not I am still learning, I will eat something that really tasts good and think just one more smallhelping, but then after that one small helping, everything comes back up. I am riding my bike quite a lot now and getting back in shape. I have A LOT of abdominal gas pain still and they tell me that it will be a year or better to heal completely. I was 225 lbs when they put me on the table, and now am 175, went down to 162, and now want to go to 165 and stay there. I feel great most of the time, but believe me it is a whole new ball game. Eat less but more often drink lots of water. I did have a problem for about a month after surgery, where nothing tasted good, I had to force just about everything down me. My daughter gave me Gator Ade and that started bringing my taste buds back. My first real food after that was the morning my wife made me a poached egg on toast. It was like having a t-bone steak!
Take care buddy, with stage one you are "lucky" like me. If I can be of any help at all during your recovery just e-mail me! I am 67, and a "snow bird", travel in my motor home between Alaska and Florida every year for the past 3 years, only grandkids live in Tampa area, so that is why we were here when they caught it.
Lucky Micka (Dave)

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