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New member, Newly diagnosed

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Hi, so relieved, not happy, but relieved to discover this site. My otherwise rock solid healthy happy upbeat amazing husband who just had a "touch" of heartburn for a few weeks... yes... just got diagnosed with T2N0M0 adenocarcinoma of the GE junction. Like all of you, it was devastating news and we are just coming to terms with all the changes in our lives. I hope to get to know more about this disease and get support from all of you here as well. RIght now,... a few opinions, words of encouragement... anything would be very appreciated. He is in his second week of chemo / rad ( carboplatin/taxol) and then he is going to have the big surgery. Thoracotomy and all. I see that is the Ivor Lewis which was encouraged so to be sure to get all the nodes. He is going to a major center where they do close to 40 surgeries a year. So far, he is doing really well with the treatment, some minor fatigue, but appetite is good. My husband has a very high powered career ( he is a doctor too).. so it is certainly a change for him to be a patient. Amazingly, he is being an awesome patient. So, I don't have any specific questions, but would like some general advice etc.. I worry mostly about the surgery.. finding possible nodes... or did they maybe miss nodes with this staging.. just so new at this and yes I'm a nurse. So, a doctor nurse combo here can be a bit crazy cuz we know too much but don't know too much if you "know" what I mean.
Thanks in Advance,
You are all brave and kind. I can see that already. And my husband, very brave and he wants to get back to work already!
Thanks,
Cora

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

Dear Cora,

I am pleased to meet you, but wish it had been under other circumstances. Your husband's diagnosis is good at a T2NOMO. I am sure you will hear from the Marshall's, however Ivor-Lewis isn't necessary to be sure to get all of the nodes. My husband was a T3N1MO and went through chemo/rad (carbo & 5FU) He had nodes in the celiac area and around the tumor at the GE junction. He had the MIE, minimally invasive esophagectomy January 5, 2011. His surgery was performed by Dr. Schipper, Dr. James Dolan, and Dr. Hunt at Oregon Health & Science University in Portland. They do these surgeries three to four times a week. At the surgery his tumor was completely eradicated and all twenty nodes tested were clear. He has had clean scans since his surgery! There are more and more thoracic surgeons trained in and using this procedure because it is so much easier on the patient. 360 degree cameras are used so they are able to see EVERYTHING! I know the Marshall's shall want more information from you, especially regarding where you are located. They have dedicated their live's to helping other EC patients obtain knowledge regarding this cancer and the treatments and surgeries out there.

I can't even imagine as a doctor and nurse how difficult this is. I am so sorry you are having to go through this. As my husband's caretaker and a ovarian cancer survivor we do understand. Know you have found a "home" here with us.

God bless you both and know we are here to help you in any way that we can.

Linda

wife of Jim, diag 9-6-10
surgery 1-5-11 T3N1MO
OHSU, Portland, Oregon

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Cora,
I hate to say the words every time, but 'welcome' to our group.
You seem to have a handle on things for sure.

Nothing wrong with 'knowing' and being a well educated doctor-nurse team. I know some doctors dread it, some like that you 'know'. I like knowing. This is no thing to walk through ignorant for sure!

I think you are very fortunate they found it at such an 'early' stage.
As said, the Marshall's and Sherri and others here shall both help, advise and ask more of you so as to provide the answers you may not yet have.

This is a nasty beast, and it seems NO ONE is immune from recurrence or metastasis in some cases, even stage II can be a beast.

From what I have seen, make sure you are at a MAJOR cancer center. Hometown pride can be a deadly thing. Go where they do this as often as open heart surgery in their department. Otherwise you risk being on the other side of something you are to weak to fight after a major surgery that can have its own set of consequences.

I hope I do not sound dark. Just being honest from watching and reading this and other boards for the last months. Some people think that because 'their' local cancer center was rated #1 or whatever in some straw poll as meaningful as the cities best burger restaurant makes them a good bet for this type of surgery. I don't agree.

There seem to be a FEW doctors (Like William's and a few others trained by the same) that have this surgery down and end up with a palatable result and quality of life, when surgery is possible at all. Go with them and ignore all the 'numbers' other than the sheer number of people they have saved and are STILL HERE posting to you!

That is my two cents worth. We all pray for each other and I wish you all the hope and love in the world that you will beat this beast and enjoy life in the graduating class, as they call it around here, after surgery!
Best wishes,
-Eric

I am stage IV and can only watch but it is very educational to say the least. I enjoy every minute of every second of every day. That is the only way to live, and the only way to live through EC for sure, at any stage. Good luck!

flmo's picture
flmo
Posts: 72
Joined: Jan 2011

I agree with Eric. Try to find the best cancer center that performs many MIE's a year. Dr. Luketich at UPMC is the pioneer in this type of surgery. He has performed over 1000 MIE's. Five days in the hospital with only a few bandaid size cuts and one three inch one to remove esophagus beats the Ivor Lewis surgery any day, in my humble opinion.

Best of luck as you continue on this journey.

Maureen
Wife of Santo-T1/NO/MO
MIE at UPMC with Dr. Luketich
Feb. 23, 2011

jss2011
Posts: 137
Joined: Sep 2011

Hi Cora

I am also new here, my hubby has the same thing, maybe stage III? Will find out more at appt this week. He just finished his 2nd wk of chemo ebirubin, cisplatin and xeloda, might not be spelling this correctly. The plan is 4 cycles of chemo, radiation at some point and surgery, but trying to take it on week at a time. Do your research on everything but try not to get too far ahead of yourself cause it can make you crazy, in my case anyway!
Hubby's biggest concern is lossing his hair LOL, priorities eh? Yes I am Canadian.
He's having a difficult time with food but can still eat steak, it is more about texture or something that I just can't understand.
We have quite a few new people here so we can go through this together, and get insight from the ones that have been here a while.

Hugs,
Julie

paul61's picture
paul61
Posts: 1104
Joined: Apr 2010

Hi Cora,

I am sorry you to had to find us under these conditions but welcome to our little family. It sounds like from your husband’s staging that the cancer is localized so that is a good thing. Given his early stage, I am not sure that an Ivor Lewis is the “best” option. There are many survivors here who had a minimally invasive esophagectomy (MIE) that have had good results.

I personally had an Ivor Lewis and the recovery process is a challenge. Two large incisions and about 10 days in the hospital is a real workout.

But the good news is that after my recovery process I am back to doing the things I enjoy and am still here with the people I love. There are some adjustments to lifestyle necessary but nothing that can’t be overcome.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Sorry to hear of your husbands diagnosis. I too was staged at 2. Found one node infected during my Ivor Lewis surgery in March 2010. Followed by 3 rounds of chemo. I am currently disease free at 18 months post diagnosis. Surgery/Chemo is tough but you do get better. Eating almost everything, just not as much. Very grateful for prayers and modern medicine. Lost 70# in the process. Weight is stable now and life is Good! God Bless....best of luck!

Gerry

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

I am so grateful for the responses here and I will share them with my husband. I can tell that the support here is invaluable. Definitely feel less alone on this journey with your advice and support.
Thanks,
Cora

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Welcome! I also had the Ivor Lewis after diagnosis of stage 111 ( T3N1M0) in May 2008. This was after four rounds of chemo, but no radiation. My doctor doesn't think rad. neccesary for this type of cancer. I didn't do any homework, so I didn't know there were other surgeries available. I agree with Paul,look at the other options. Even though my surgery went well, I spent 13 days in the hospital and recovery is a lot slower.
I was diagnosed in Nov. 2007, and I thank God I am still testing cancer free. The road was rough, as you probably know from all the post, but life is good now. A whole new way of eating and even sleeping, but I can live with it, because I am LIVING and enjoying every minute.
Looking forward to hearing from you again
Sandra

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Hello Cora!

As professionals in the medical field, I'm certain that you already know all too well the hazards of locating out of date statistics. And that you also realize that statistics aren't as important as individuals.

Your husband isn't a statistic. As far as EC goes, a Stage 2 diagnosis is a wonderful thing. The ability to have the surgery is a wonderful thing. So many of us have the same worries. You've voiced nothing that hasn't gone through my head already. We will find these answers together!

Take things as much one day at a time as possible. I hope he fairs well with his chemo/radiation regime. My husband found that using an ice bag on the radiation target one hour before really reduced the "hot" feeling radiation had without it. That and staying ahead of the nausea were key to us.

This is a wonderful place full of amazing people in all stages and roles of EC care. Best of luck to you both! You will be amazed at the number of prayers you have been added to now.

Terry
Wife to Nick, age 48
dx T3N2M0, 05/19/11
THE surgery, 09/08/11

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

Hi Cora,

Just like everyone else has said, I am sorry that you have to find yourself on a cancer board, but welcome to our group. My husband was diagnosed with stage IIb EC on May 24th. He went through 6 weeks of chemo and 28 days of radiation at the University of Pennsylvania. He had the Ivor Lewis on 9/6 at John Hopkins, he was released from the hospital on 9/14. We are working on recovery together, it is a slow process but so far we have forward progress. My husband is 48 and I am 31, this cancer blind sided us, I am sure you are familiar with that feeling. I know that the early days are filled with angst, but I felt a sense of relief once the actual treatment started. I know that sounds strange, but once the chemo began I knew we were finally fighting back. I can only imagine what you are going through as both being medical professionals. I would recommend that you forget about the stats and focus on your husband's journey, no two people are alike, this I am sure you know. If you don't mind me asking, where are seeking treatment? I know you said a major center, just wondering which one. As you can see by our story we actually traveled for surgery after meeting with three surgeons we chose the one that we were most comfortable with. I just tell you this so that you keep and open mind, as you know this surgery is more complicated and requires a truly skilled surgeon. My husband had the IL because he had a nissen fundoplication last year, he decided that the open procedure would the safer choice for him. Have you considered looking into the MIE? If my husband didn't have the prior surgery we would have most definitely gone for the MIE and would have travelled to UPMC to see Dr. Luketich. He is the leading MIE surgeon (confirmed that with our surgeon who is also top in his field but doesn't perform MIE). You have some time to figure out the surgery. I hope your husband is still tolerating the chemo, some have it easier then others. Any questions, or if you need to vent we are always here to listen.

Niki

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

Cora,
You have lots of opinions here but just let me give you one more. I would suggest a second opinion. My husband had the MIE surgery on 9-9-11 and was discharged from the hospital on 9-16-11. You mentioned that the major center does 40 cases per year, my opinion and it is only my opinion is that does not seem like it is enough volume for my comfort zone. The surgeon that did my husbands surgery does 4 to 5 per week and so does his partner, Doing the math that means the OR crew and nursing staff (all support staff) see 8 to 10 cases per week. This is a complicated surgery with the possibility of many complications. I felt I wanted a nursing staff that saw this kind of surgical patient every week multiple times. I do not know where you live but if you would tell us, there are people on this board from all over the country , all over the world. Bill & Loretta Marshall have years of research (Bill is a 9 year survivor) and there is a wealth of knowledge on this site. My husband had a first opinion for the Ivor Lewis open surgery (I had it scheduled) then I got on this site. The Marshalls suggested MIE. That is when I found the new surgeon. He works out of Moffitt Cancer Center. The Center is the only hospital in the state of Florida recognized by the NCI. Read explore and ask us questions and we will answer to the best of all of our collective abilities.
Erica
Wife of John
T3, N1 ,M0
MIE-9-9-11

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Being so new to the forum and a little overwhelmed right now Ericalynn, and Nikko- is there a way to private message some of these answers right now to the questions you have of me? How does one PM on this forum ?
Thanks,
Cora

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

Cora,
Cora,
See the box in the upper left (Title is CSN) click on CSN Email , type in user name (Ericalynn or NikMo) and write message. I will send you a message to see if you can find it.
Erica

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Ok, so my husband is comfortable with me giving more details. He is right now going to work with Dr. Malcolm DeCamp at Northwestern Medical Center in Chicago. This is the Lurie cancer center. DeCamp was at Cleveland Clinic _ Tom RIce is a surgeon there too still and was partners with DeCamp for many years and prior DeCamp was at Brigham and Women's in Boston. We felt really good about him at our interview and he really inspired confidence as did the rest of the team and the SICU. He has now been in Chicago building a program for close to two years. The other surgeon who operates with him is David Bentram an oncologic surgeon. So, I would like more opinions. He went over all the approaches with us and felt the IL was best for Keith and would give us the best oncologic surgery- i.e. node evaluation and removals. So, that's where we are at right now. My husband is otherwise young, 52, healthy heart, just has a "touch of cancer.. ha ha right.... "
But again... I'd like to know as much as I can before we venture into this big event. Not sure I know what I don't know... if you know what I mean!
Cora

adube's picture
adube
Posts: 66
Joined: Sep 2011

I'm still pretty new, two weeks or so, but I thought I'd hop on the welcome wagon too. My dad, 50, was just diagnosed with Stage IV. He's a super healthy guy, perfect weight, no crazy health issues, never smoked a cigarette in his life and in my 29 years on this planet I've only seen him tipsy once (so not a huge drinker, of course). He does have chronic reflux though, but it's so strange that the "triggers" that docs suspect causes EC can be so off in some patients. :( Anyway, we just started chemo (21 day cycle, IV on the first day and 2 weeks of oral, week 3 is a rest). We're doing it for 3 months and then he'll have a CT scan, rinse and repeat. Obviously, with you guys, surgery is still an option - so it's a little different for us.

Anyway-- I've found so many awesome tips and info about this journey on this site and ten times as many amazing inspiring hopeful people. Some days it's nice to read a story that ends in, "my tumor shrank," "now I'm operable," or "cancer free 10 years." Obviously, there are sad heartbreaking stories in the mix, but even one positive one is more than I got from webmd, so I find it infinitely more helpful. Hopefully some of the more "senior" members of the crew can help and add some things I'm not yet in the know about. Since it's only my second week here, I'm still pretty green to the whole process.

Best of luck to you. I'm here if you ever just need to chat.

All my love,
Alissa
(daughter of Mike, IV)

sammy123
Posts: 65
Joined: Apr 2011

Welcome Cora. I am a nurse as well. Please consider getting in touch with Dr. Luketich's team at UPMC. At the very least a phone consult is in order. As discussed earlier Dr. Luketich has done more than any one in the US possibly the world. He performed the MIE on my husband and his recovery was amazing. He has dementia problems but the surgery was perfect. At least give his office a call and check them out. It is just my opinion but after all of my research and hard work sending pathology reports to many different instituions I came to the realization that one needs to go to the physician who pioneered the surgery itself. Worth a call. Just my take and my personal opinion after a lot of due diligence.

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Sammy, Thanks for your comments. Yes we are going to contact him. I appreciate your encourgement.
Thanks,
Cora

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Hi Sammy,
Do you think it would be possible to pay for a telephone consultation with Dr Luketich.
My husband was diagnosed this month with EC. He has an 8cm tumour at the base of the esoph.
There is a suspicious looking ganglion close to it and the surgeon here wants to do chemo before surgery to kill off any cells.
The surgeon did say that he did not think the tumour had spread to any other organs. At least I think that is what he said. We are in Gran Canaria and the language barrier is difficult.
The trouble is that they are fast tracking Rob and we don't want to halt the process in case the time delay hampers his recovery.
I don't even know what sort of surgery he is planning on performing.
I did ask him what experience he had with this type of surgery and he said that he had done three or four and his boss, whom he would be assisting has done a lot more.
It is all a little provincial here and ego's get easily bruised.
For my part, I just want the best for Rob and if we have enough in savings to pay for an op by Dr Luketich then I can't think of a better way to spend them.
Anyway, if you think there might be a chance of a telephone consultation, could you tell me who I would contact please.
Thanks to you and everyone here who has helped to keep me sane in the past couple of weeks.
God Bless you all.
Hugs - Marci x

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Marci,

EC is too big of a risk to play around at waiting for information. In order to get your quesiton addressed, I must recommend that you begin your own topic with an appropriate subject line. That will draw the best responses from those in the know....

Prayers to you both.

Terry
Wife to Nick, age 48
dx T3N2M0 05/19/11
THE 09/08/11

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Thank you Terry. I haven't done a first post yet. I'll try it.
Hugs
Marci x

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Thank you Terry. I haven't done a first post yet. I'll try it.
Hugs
Marci x

LeeinLondon's picture
LeeinLondon
Posts: 108
Joined: Aug 2011

Hello Cora and welcome to the group! Unfortunately your story is all too familiar, but with that statement take strength that you are far from alone. I've found that this board has been an amazing tool for helping you cope, learn and grow as we travel through this together.

Please call on me to help however I can.

Best from London,

Lee
www.yurbo.com/leescancer

sammy123
Posts: 65
Joined: Apr 2011

Hello Mardigras and Cora:

I believe I spoke to Chuck about 10 times before we gave the green light. Never got a bill. He consulted Dr. Luketich and then gave me his opinion. I guess my best advice is too get as aggressive as you can to begin treatment. I am a nurse so I sent pathology and reports to 2 wonderful institutions and then decided on UPMC. My husband had 28 sessions of XRT along with chemo week one and week five during radiation. The optimum time is to get surgery 5-8 weeks after chemo/XRT (again if necessary). My husband was dx in May had surgery in July.. Successful no cancer or further chemo needed. Good Luck.

sammy123
Posts: 65
Joined: Apr 2011

Phone for Dr. Luketich: 412-647-2911 I spoke with Chuck but you can speak to anyone to get the ball rolling.

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Thanks so much for the telephone number Sammy. Can you tell me where it is so that I can look up the area code from here.
I am also going to try my first post so that I can be armed with all the info.
I'm so pleased that things are going well for you please God it will continue.
I wish you all the luck and prayers in the world.
Hugs Marci x

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

Dr. L is in Pittsburgh Pennsylvania

Lynn_Paul
Posts: 22
Joined: Sep 2011

Cora,

Welcome. I wish I had found this site last year before we decided on a surgeon for my husband who was diagnosed stage III in Sept 2010. After chemo/radiation, he had THE in Dec 2010. The surgery went well. He had post op chemo and was doing great until his latest PET scan which showed a localized recurrence. We met with Dr. Luketich last week and he is going to "re-do" the surgery next month. He told us he feels at least 18 lymph nodes should be removed during surgery. Our surgeon removed 3. One was positive. I can't help but wonder if Dr. Luketich had operated last year if we would be facing this again. Dr. L said they do over 300 surgeries a year. He is the expert in this field, and we did not feel the least bit rushed during the appointment. The first few weeks after diagnosis are so difficult - and not any easier the second time. Our middle child is in her 3rd year of college, and I had to tell her shortly after going back again this year that the cancer was back. Our oldest is home again after graduating from college in 2010. Her being home has helped a lot. She was here, so I was able to stay at the hospital the entire time. Our youngest is 15. He has been a huge help and more mature than a 15 year old should have to be. My advice is, if people want to help ~ let them. It makes them feel good and takes one thing off of your plate.

I wish you and your husband success in finding the surgery options that are right for you.

Lynn

Lhoskins31
Posts: 2
Joined: Oct 2011

Cora,

I am sorry to hear about your husband. I stumbled across your story a couple weeks ago and I think it's so wonderful to see how everyone here is so supportive. I anly wish I had found this site after I was diagnosed. There is nothing in the word out there like not knowing where to turn to get questions answered. I will continue to keep y and your husband in my prayers.

Leah

Lhoskins31
Posts: 2
Joined: Oct 2011

Cora,

I am sorry to hear about your husband. I stumbled across your story a couple weeks ago and I think it's so wonderful to see how everyone here is so supportive. I anly wish I had found this site after I was diagnosed. There is nothing in the word out there like not knowing where to turn to get questions answered. I will continue to keep y and your husband in my prayers.

Leah

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