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Newly diagnosed... best treatment centers?

allisonwr's picture
allisonwr
Posts: 11
Joined: Nov 2012

Hello all. I am so blessed to have found this encouraging discussion site. My dad underwent an endoscopy yesterday after having trouble swallowing and weight loss for the last month or so. The specialist said he is pretty sure it is cancer and we will know the results by next week. Of course I have looked online about esophageal cancer and I have lost all hope. Apparently, by the time it is diagnosed, it is too late and there is no treatment. My father is only 52 and had never had a health problem in his life. He did not have issues with GERD so no Barrett's Esophagus, but he did smoke for about 30 years (quit cigarettes 10 yrs ago but smokes 1/2 cigar a night) and drinks moderately. I am devastated but trying to be strong for him. I have a strong medical background, as well as career, so I know this a benign is not a benign growth after seeing the images and reading the report. Can anyone please tell me what options there are for late stages and what facilities are willing to do the surgeries and chemo/radiation that most physicians consider high risk for late stages? Anything would he helpful as I cannot be more devastated and hopeless at this point. Thank you.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I have sent you a private email through CSN. Welcome to the family. I'm sorry you found us, but glad you're here. EC is a BEAST, but never give up hope. Knowledge is power and you'll learn a lot here.

Chat soon.

bingbing2009
Posts: 179
Joined: Feb 2011

Glad you found us, but so sorry you have a need to be here. Welcome to the CSN family. I know you are discouraged, but until you know the actual staging, please try not to be so downheartened. I, too, had difficulty swallowing. As a matter of fact, that was the only symptom I had that I was aware of--food getting stuck as I tried to eat. I was diagnosed T3N1M0, had chemo and radiation, followed by Ivor Lewis surgery in 2010. So far, so good. There are several of us diagnosed as Stage III and doing well so far. I can't really answer your questions if your dad is diagnosed as Stage IV. All I can say is hang in there until the testing and staging are complete.
You and your family will be in my thoughts and prayers.

Melinda

DX October 2009: T3N1M0
November and December 2009: chemo (Cisplatin and 5 FU) and radiation
February 2010: Ivor Lewis surgery

paul61's picture
paul61
Posts: 1107
Joined: Apr 2010

Esophageal Cancer is certainly a difficult cancer to diagnose and treat, but until you receive final staging, I think it may be a bit early to expect the worst outcome. In addition, information on the internet is dated and the treatment approaches and outcomes are dated.

In terms of centers of excellence in the treatment of esophageal cancer; I would consider, University of Pittsburg Medical Center, Sloan Kettering, or MD Anderson. These centers treat many cases of EC each year and tend to take a more aggressive approach in treating esophageal cancer. Please find below links to the web sites of the above.

University of Pittsburg

Sloan Kettering

MD Anderson

Even if your Dad is staged as "Stage IV" there are still treatment options available.

If you tell us where you are located we can make some better suggestions about centers of excellence closer to you.

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
Three year survivor

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

allisonwr's picture
allisonwr
Posts: 11
Joined: Nov 2012

Well, we were hopoing the physician would call today with the results of the biopsy,. but no word with it being a long holiday weekend. Can they tell what stage and how far it has advanced by taking a biopsy from the endoscopy? Or does further testing need to be done? I don't really understand how they can tell if it has advanced into the liver or lymph nodes with just samples taken from the esophagus. And Paul, he is located in Phoenix. They have the Mayo Clinic, BannerMD Anderson, and Cancer Treatment Centers of America there. Supposedly, the GI specialist who did his biopsy works with oncologists at Mayo and BannerMD. It's just a matter of insurance at this point. I'm happy to know that there are people who were diagnosed at later stages and doing well. My dad seems to be in good spirits right now, I just hope it lasts. But then again, he doesn't know the severity yet. I know I wouldn't be able to be that strong. He did say that the day after the endoscopy (Thanksgiving), he was able to eat some food without any trouble. Anyways, it's a waiting game this weekend. This has been a pretty trying time thus far...Thanks for all the input this far. I will keep everyone updated!

paul61's picture
paul61
Posts: 1107
Joined: Apr 2010

The biopsy results from the endoscopy will tell them what kind of cancer it is but additional testing will be required to define staging.

Your Dad should have a battery of blood tests to define certain cancer indicating markers in his blood. He should have either a PET scan or a CT scan (or both) to define physical abnormalities in organs or lymph nodes that may indicate the presence of cancer. In addition, most patients get an endoscopic ultra-sound that allows the doctor to estimate the depth that the tumor has penetrated into the layers of the esophagus, and if any adjacent lymph nodes may be affected.

Here is a reference that describes an endoscopic ultrasound.

Endoscopic Ultra Sound

When staging is complete your Dad should be given a "staging" reference that consists of T (a number) N (a number) and M (a number) this reference then translates to an overall staging number like Stage II or Stage III.

Here is a reference that describes the staging numbers derived from the TNM reference numbers.

EC Staging reference

If I were you, given your location, I would be headed for MD Anderson in Houston for a second opinion (given insurance permits).

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
Three year survivor

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

MartinG5602's picture
MartinG5602
Posts: 22
Joined: Jun 2012

Do not dispaire.....look for another opinion at a major cancer center for treatment options. My husband found wonderful doctors and care at M D Anderson in Houston.
Now almost two years out, with a great attitude, and Stage 4, he feels fine, travels, exercises, plays golf, and has gained 5 pounds recently. The Met to the Adrenal Gland in March of 2012 will be removed in January 2013. Of course, no guarantees as EC is a real beast, but never ever give up Hope!

Barrie

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Barrie,
I sent you a private message via CSN email.

SarahRoss
Posts: 1
Joined: Dec 2012

My cousin was just recently dianosed with ec that met with the liver. I am looking for survival stories that can help give us some hope.

allisonwr's picture
allisonwr
Posts: 11
Joined: Nov 2012

Hello all, so here is an update on my dad. His cat scan showed the obvious "mild irregularities in the esophagus" (funny how it SOUNDS so benign), and two small, unremarkable lesions in the liver (presumably cysts). Also, his EUS shows a large tumor that has protruded through the lumen or outside of the esophagus. All in all, the oncologist is calling it Stage III (although the GI said that it is in between II and III). They think that it may only have spread to "one or two lymph nodes." So official diagnosis is T3N1M0. He has met with the radiation oncologist and will be starting chemo and radiation a week from this Tuesday on a regimen of cisplatin and taxol for 6 weeks before he gets an esophagectomy. Does anyone have any input on all of this? They told him that after two weeks of chemo and radiation, he will not be able to eat due to the tumor flaring up so much. I think they discussed a G-tube ot J-tube with him. From the imppression that I get from my dad, he thinks they sound pretty optimistic. I hope it is. We are trying to stay positive!

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

Except I had 7 lymph nodes involved. When I hit abut 4-5 weeks in the radiation/chemo it became almost impossible to eat so I stopped eating. I had a nasal feeding tube installed from midMay until the surgery June 5 when it was replaced with a J tube.

Based on my personal situation,after the surgery, I would insist on mop up chemo. We were told in June that post surgery pathology showed the cancer cells were dead in the lymph nodes and esophagus so no follow up treatment was scheduled. Unfortunately in September we found it had returned in more lymph nodes so now we are playing catch up in hopes of stopping its progression.

Good luck

Josie. Stage 4
Carboplatin/ taxol. April, may2012
Cisplatin/ 5fu September, October 2012
Scheduled for Oxiplatin 5fu Epirubican in December 2012

allisonwr's picture
allisonwr
Posts: 11
Joined: Nov 2012

So today my dad met with the surgeon. It did not go so well. Last week when he met with his oncologist, he was staged as T3N1M0. This was determined through his cat scan and EUS. However, when he met with the surgeon today, she apparently told him that surgery will not be possible if he is a stage IV. And that it could still be a stage IV after the results come back from the pet scan. His PET scan is scheduled for Friday. I am in disbelief that the surgeon told him this. She has all of his records, including the oncologist's report. If after the oncologist already determined that his cancer has not metastasized from the cat scan, how could the surgeon say that? The oncologist did not explain to him that there is a possibility it could he stage IV after the results from the pet scan come hack. Why even tell him that he is T3N1M0 if it's not certain? We are all very upset, and I think the surgeon was way out of line. Has anyone had something similar happen or had completely different findings on the pet scan compared to the cat scan?

paul61's picture
paul61
Posts: 1107
Joined: Apr 2010

If after a CT scan and an EUS the oncologist has a staging analysis of T3N1M0 then that is Stage III. I am including a reference to the NCI staging guidelines below:

UPMC Esophageal Cancer Overview

NCI Staging Guidelines

Your Dads staging analysis is:

T3 = Tumor invades adventitia layer of the esophagus

N1 = Metastases in 1–2 regional lymph nodes

M0 = No distant metastasis.

For adenocarcinoma that translates to Stage IIIA

Of course, a PET scan could show different results, but I would leave it to my oncologist to sort through those results. Not my surgeon. PET scans are famous for providing false positives, and many oncologists use the combination of a CT scan, EUS, and a PET scan to evaluate final staging. I clearly don't understand what basis your Dad's surgeon has to suggest he is Stage IV??

Is this surgeon someone who specializes in the treatment of esophageal cancer? If not, I would suggest you find one who is located at a major medical center that does many esophagectomies each year. Let us know where your Dad is located and perhaps we could suggest a surgeon.

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
Three year survivor

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

preacherchad's picture
preacherchad
Posts: 62
Joined: Dec 2010

I would follow Paul's advice, and I would not waste anytime looking either. We will praying that you will get doctors that agree on staging and treatment.

allisonwr's picture
allisonwr
Posts: 11
Joined: Nov 2012

Well, my dad sees a new surgeon tomorrow and is supposed to start treatment after. After his pet scan last week, it showed that two "tiny" nodes are involved, and a small adrenal gland "nodule" is present. His tumor has protruded through the adventitia of the esophagus, and he is actually going in for another biopsy as I write this because there is concern that it is actually gastric cancer! They can't figure it out because it's so close to the junction of the stomach. So I guess we will know more tomorrow.

On a side note, I am sad to be noticing that a lot of people are losing their fight on here. With my dad being stage 3, does he have ANY chance? Is there anyone on here that's survived stage 3? I don't know what to think as it all seems pretty grim. I'm so scared.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Don't be discouraged! There are LOTS of Stage 3 survivors. Do you have a Facebook account? Send me your name via PM. I will get you in.

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

Hi, Yes there are some stage three survivors. I am a five year survivor. Even though it does seem hopeless now, we all understand your feelings because we've been there. We are here for you, Prayers, Sandra

jimapril
Posts: 15
Joined: May 2012

I got goose bumps reading your posts as it brought back similar thoughts, feelings, and events. The internet initially sent me and my daughter into a feeling of hopelessness. Initially diagnosed as stage III- later it was determined stage IV- the first surgeon we talked to wouldn't even discuss surgery. CANCER TREATMENT CENTERS OF AMERICA saved my husband's life. When chemo did nothing to shrink the tumor, they operated anyway. Without hesitation. To date, they have given us at least another year together. He is currently cancer free. I am not saying it is easy. I agree with the post that said EC is a BEAST. But I thank God we didn't give in and give up. Please keep us posted.

PeerlessLiving
Posts: 1
Joined: Oct 2012

I am 55 years old and was diagnosed with stage 3 Esophagheal cancer 3/2012. I underwent chemo/radiation and then surgery 9/2012 to remove the esophagus . My stomach was connected to my throat. MD Anderson Cancer Center provides phenomenal treatment. Today, I am cancer-free, eating, drinking and resuming my normal life. Your dad can overcome this. Don't be discouraged.

joymitch
Posts: 16
Joined: Dec 2012

I was interested to read that you had surgery at MD
Anderson. My husband is currently in treatment at Fox Chase in PA but we are considering MD Anderson for surgery. We live in Southern New Jersey. I would love to hear more about your experience in Houston. Sounds as though you have had a remarkable recovery. If you care to discuss your experience, please contact me joycemchugh48@gmail.com. May God continue to bless you with good health!

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