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Husband just diagnosed with esophageal cancer but don't know stage yet

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hubby has been having trouble with solid food getting stuck in esophagus - went to doc and had barium xray, ct scan, biopsy, etc. So far diagnosis is adenocarcinoma, but the gastro doc did not know the stage. They are sending him to U of M hospital in Ann Arbor, MI but don't know when yet. Why wouldn't the doc know the stage of this cancer? Is two weeks too long to wait to go to UofM? What are the likely next steps?

paul61's picture
paul61
Posts: 1169
Joined: Apr 2010

Hello,

I am so sorry to hear of your husband’s diagnosis. It sounds like he has had the preliminary tests to identify the kind of esophageal cancer he has; and if it has spread to other major organs. Since you mentioned that he had biopsies I assume in addition to the barium xray and CT scan they also did an endoscopy with biopsy.

In order to complete his staging they should do an endoscopic ultra sound (EUS). This will allow them to determine the depth the tumor has penetrated into the wall of the esophagus and if any of the near by lymph nodes show signs of involvement.

U of M in Ann Arbor has an excellent cancer center under the leadership of Dr. Mark Orringer. Here is his Bio:

http://surgery.med.umich.edu/thoracic/clinical/faculty/morrin.shtml

You will find the staff at the U of M Comprehensive Cancer Center to be competent and caring. I had several procedures done there and was always impressed at their professionalism and empathy. Here is an overview:

http://www.uofmhealth.org/medical-services/cancer

Two weeks is not an unreasonable amount of time to complete the referral to U of M. Of course, esophageal cancer can be a very aggressive cancer, so time is of the essence but I am not sure two weeks is unreasonable.

The logical next steps would include:

- Complete the EUS and establish staging. They should give you a T (number), N (number), M (number) this then translates to a stage. For example my staging was T2N1M0 which translates to stage 2B.
- Depending on the stage, they will set up a treatment plan that will typically include chemotherapy, radiation therapy, and surgery.
- You will meet with your husband’s medical team. The team typically will include a medical oncologist, a radiation oncologist, and a thoracic surgeon.

Hopefully your husband will be a candidate for a minimally invasive esophagectomy. This is the surgical procedure that is the least invasive and has the shortest recovery time.

Your husband’s staging and health profile will determine if he is a candidate.

The next month is going to be a whirlwind of medical tests and doctor’s appointments. Please come here often and ask questions. Since your husband is going to U of M in Ann Arbor I assume you are from Michigan. My wife and I live in Grand Blanc, Michigan in the summer and in South Carolina in the winter. We are originally from Saginaw, Michigan.

Be sure to take a pad and paper to the appointments and write things down. Ask lots of questions. You will find that they will use words that they understand but mean nothing to you. You and your husband will get back home and find you both thought you heard different things. It is always best to take notes and always ask, “If we have questions later, who can we contact?”

And as I said before; come here often to ask questions as things become clearer. You will find the people on this board have many experiences.

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
Two year survivor

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

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

I think Paul answered all your questions for now and gave you good advice. I just wanted to say you've come to a good place and hope you come back often. EC is quite a wild roller coaster ride and there are people here with knowledge and experience with most all aspects of it. For now, just take a deep breath and try to take one step, one day at a time. Any questions you have will be answered by ones who have had experience with that particular issue.
Angie

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Angie:

Thank you so much for your quick reply. Paul was very, very helpful, and I'm so appreciative. This does indeed look like a wonderful support network and one I will certainly come back to probably daily. Thank you so much for your advice and wisdom. I will take a deep breath, take one step at a time, one day at a time. That may just become my new mantra!

Happy Thanksgiving to you Angie and your loved ones,
Judy Reed

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Dear Mr. Adams:

You have no idea how comforting your reply was to read this evening. We are from Marshall, Michigan. We are feeling fortunate to be near UofM and have heard good things about Dr. Orringer and his staff.

You are so correct in the two of us hearing different things - this has already happened. We are very fortunate to have a wonderful primary care physician who is working very hard to get Don in to see someone asap. Don is only able to have liquids and soft foods such as mashed potatoes and gravy so this will be a first for us this Thanksgiving.

I am praying that God directs us in time to the proper Doctors and staff and I'm thankful to have found this site so that I may ask advice and seek the experience of other EC patients and families. We have family in Harrisburg, NC (close to the state line of SC) and it is so beautiful there - glad you can be out of the ice and snow Michigan so generously gives us!

Thank you again, I intend to share your words with Don soon. God Bless and Happy Thanksgiving to you and your loved ones!
Judy Reed

P.S. What does Ivor Lewis mean? I have seen that term before in regard to EC. Thank you,

Ginny_B's picture
Ginny_B
Posts: 542
Joined: Sep 2011

Welcome to this wonderful group of people. So sorry you found us. I recently joined when my mom was diagnosed. TxN2M0 Stage 3. Inoperable due to location. She's currently halfway through chemoradiation.

Everyone here is so so helpful!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Ginny:

Thank you so much for your warm welcome. I'm so sorry your mother is going through this. I hope she is a strong lady and the chemoradiation works very well for her. We are in Michigan so we will be going to Univ. of Mich as soon as team over there gives us a call and I hope that is soon. Another memember of this site, Paul, said that two weeks is not an unreasonable amount of time - but we all know that we the cancer gone and outta there right now. Is there any possibility that the chemoradiation will shrink the tumor for surgery or is this to kill the tumor so that surgery won't be necessary?

I can see and feel this site is going to be a lifeline and a whole new group of loving friends. Aren't people amazing to share their stories, advice and experience with us newbies. I feel blessed to have found you.

Happy Thanksgiving to you and your loved ones. We'll be talking soon.
Judy Reed

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

At least it did for me. My first oncologist saw my PET scan, threw up his hands and said, "I'm so sorry, there is nothing we can do but make you comfortable." WHAAAAAAAT???

Not acceptable. That was back the middle of October. Now, after an new oncologist, 4 MRIs, additional CT scans and an endoscopic ultrasound, I'm at T3N1M0. I just found out today. So, from October 11th to now, I finally end up accurately staged, so now treatment can begin.

--Jerry

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Jerry:

Thank you so much for your quick reply. We too have had a mixup with the gastroentrologists office referring Don to the wrong clinic in Ann Arbor, and I was right on the phone to our primary care doctor who is finding the right doctor/s for Don to see at University of Michigan. Hoping very much that withing the next two weeks we are able to go there and get this ball rolling. I am also very happy that you did not accept that first diagnosis and persisted until you got the proper information. I'm reading from people that EC is wild rollercoaster ride and sounds like our situation may be very close to yours.

Wishing you all the best and I'll pray for you and your team to beat this horrible disease. Please keep me posted on how you are doing and what type of treatment you will be receiving and how that goes for you. I'm sure each experience is a bit different, but we'd be foolish not to keep in touch with those before us and gain as much as possible from each of you.

God Bless and Happy Thanksgiving to you and your loved ones!
Judy Reed

ECson
Posts: 26
Joined: Nov 2011

That is so wrong. My Dad was diagnosed last Tuesday via endoscopy, CT Wednesday, Oncologist Wednesday, PET Friday, Staged Tuesday ( IVa unfortunately), Chemo port placed today, 6 week chemo starts next wednesday. We are not a surgical candidate at this point and tumor is so large that radiation is not possible until we see if the chemo shrinks the tumor. So we were diagnosed, staged, and treated within two weeks.

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

If your PET scan shows a really big tumor with a large SUV (standard uptake value) like, I dunno, 20(?) that sure isn't good. Has it metastasized? According to MY PET scan, I was terminal with cancer in my brain and spine as well as the Gastroesophageal Junction. 4 MRIs later that was found to be WRONG. PET scans are great, but there are a number of things that can show up as metabolic activity. I had SUVs of 5 and 6 on my spine. Arthritis/inflammation. Enhanced metabolic activity in the left basal ganglia. An MRI showed that nope, not cancer. They can't accurately determine the size and depth of the cancer without an endoscopic ultrasound (EU), so I had that, and so I went from IVb to T3N1M0, but it took time to get me staged.

Here's hoping that you've got JUST a big ugly tumor that you can shrink down to removable size. Our prayers are with you.

--Jerry

Ginny_B's picture
Ginny_B
Posts: 542
Joined: Sep 2011

ECson... sounds just like my mom. Radiation as well? My mom, however, is Stage 3, but inoperable due to location. No mets.

ECson
Posts: 26
Joined: Nov 2011

Medical oncologist says if ours responds to the six week chemo then we will begin a six week additional chemo AND radiation with chemo at weeks one and five with radiation in between. Gonna be a rough go for us.

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

I remember clearly that our doctors told us not to worry about one week or two in terms of time during work-up etc. The most important thing is to get the accurate work-up and staging. Now we did get a very quick work-up and results, but I remember waiting over a week to get the radiation plan in place as that is a really exact process. I was worried about the time frame, and Keith was diagnosed on August 15th and his treatment started Sept 6th. That kind of time frame was totally appropriate and like I said... I was scared... but the doctors were very reassuring that this time frame was totally safe. Getting proper staging, proper radiation fields determined... that really takes some time and expertise. So Judy and Don, just wanted to share my experience with you.
Cora

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Cora:

Thank you so much - I really appreciate your input. Don was diagnosed the 21st of Nov so sounds like we will experience about the same as you have. Of course, I'll be checking with everyone and letting you know what the docs say as soon as I can.

Thank you again Cora!

Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Cora:

Thank you so much for the reassurance. Sounds like we are right on track with everyone else.

I will be sure to compare notes and seek everyone's opinion as soon as we get some news and suggestions from the doctors.

Again, thank you,
Judy & Don

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Cora:

Thank you so much for the reassurance. Sounds like we are right on track with everyone else.

I will be sure to compare notes and seek everyone's opinion as soon as we get some news and suggestions from the doctors.

Again, thank you,
Judy & Don

Freida
Posts: 191
Joined: Nov 2011

Hi Judy
Sadly, we are in the same boat. My husband was diagnosed 2 1/2 weeks ago and we are really worried by how long it is taking for anything to be done. I guess happening round Thanksgiving doesn't help. After meeting once with a local oncologist in our small town, we have opted to go to M D Anderson in Houston (about 600 miles from home). Our family doc is setting it up and said not to panic if it takes a couple of weeks, but the waiting is worrying me a lot. Hopefully we will all soon have a plan and a path forward.

This is so scary isn't it. Big hugs to you and your husband.

Freida
(I thought I posted this once but it did not show up - apologies if I end up double posting)

"life is what happens to you when you are busy making other plans" John Lennon.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Freida:

I did manage to figure out how to send you a private email - I am figuring out this site as I go. I cannot seem to get the chat part to work for me, but all else has been so helpful. Looks like we are going to have a lot of support and experience to guide us as we go about tackling this beast.

So glad you found this site - this site has gotten me through this past week -

Thank you everyone who is on here - all of your advice, stories and experiences have given us so much insight - I feel like we are a bit more educated so when we finally do get to see someone, we'll at least know what they're talking about.

Judy

paul61's picture
paul61
Posts: 1169
Joined: Apr 2010

Judy,

There is a regularly scheduled chat dedicated specifically to Esophageal Cancer sponsored by Association of Cancer Online Resources (ACOR). I will list the specifics below:

Reminder: EC Live Chat!

Date: Every Sunday and Wednesday
Time: 8:00pm to 9:00pm [Eastern Standard Time!]

Note: Make sure JAVA is downloaded on your computer.

When asked for a USER ID, write in whatever you want. (Some variation of your
name is best, but if you do not want your name known, make one up,
but [hint], plain "Bob" or "Jane" is easier for us to type and remember
than "KQrxT9x", or "SjnFLPq").

Location:

http://ericpix.net/chat

or the old address at:

http://ngc1514.com/chat

Comment: Join the Chat Group, comprised of patients, care givers and
survivors, where experiences are shared, and make new friends.

For Help Contact: Eric at eric@ericpix.net

Your hosts are Eric and Mickey

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
Two year survivor

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

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Thank you again Paul,

You are most helpful - I will hopefully get to join in one of the chats - I will try Wednesday.

Thank you so very much!
Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Thank you again Paul,

You are most helpful - I will hopefully get to join in one of the chats - I will try Wednesday.

Thank you so very much!
Judy

paul61's picture
paul61
Posts: 1169
Joined: Apr 2010

Judy,

I am sure you have not had time to think about this yet, but you mentioned that Don is 60 and has not worked for a couple of years because his company went out of business. Did you know that approval of Social Security Disability Benefits is pretty much "automatic" for people diagnosed with esophageal cancer? Of course since you are still working you would want to discuss the overall implications with your tax accountant or financial planner. But the benefit is there and available.

Here is some information about the application process:

Social Security Information Site

The write up suggests using a "lawyer or benefits advocate" but I know several people who just completed the forms themselves and got the appropriate documentation from their oncologist and were approved.

Regards,

Paul Adams,
McCormick, South Carolina

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Paul!

You won't believe this - late this afternoon we stopped to visit with some friends, and they told Don the same thing you just wrote. This will go on the list of questions I'm making to take to our first visit.

We thank you again - you are so helpful - I'm so glad you are on this site!

Regards,
Don & Judy

Ginny_B's picture
Ginny_B
Posts: 542
Joined: Sep 2011

Is it the Chat on this board? I have tried several times and it says Administrator needs to approve.

paul61's picture
paul61
Posts: 1169
Joined: Apr 2010

Ginny,

It is not the chat that is on this Board. This chat session is sponsored by the Association of Cancer Online Resources (ACOR). Here are the instructions again.

Reminder: EC Live Chat!

Date: Every Sunday and Wednesday
Time: 8:00pm to 9:00pm [Eastern Standard Time!]

Note: Make sure JAVA is downloaded on your computer.

When asked for a USER ID, write in whatever you want. (Some variation of your
name is best, but if you do not want your name known, make one up,
but [hint], plain "Bob" or "Jane" is easier for us to type and remember
than "KQrxT9x", or "SjnFLPq").

Location:

http://ericpix.net/chat

or the old address at:

http://ngc1514.com/chat

Comment: Join the Chat Group, comprised of patients, care givers and
survivors, where experiences are shared, and make new friends.

For Help Contact: Eric at eric@ericpix.net

Your hosts are Eric and Mickey

Regards,

Paul Adams
McCormick, South Carolina

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

Judy and Frieda, Welcome to our group. There is so much to learn, and this site is full of people with the Ec diagnosis and caregivers. We can give you the everyday experience of living with it and can just about answer any questions.
It is a very scary thing when diagnosed and all we want is for the cancer to be out of there. The waiting for all the test is very rough. I was diagnosed on 11/13/07. Testing showed I was stage three-T3N1M0 and I started chemo on 12/26/07. I was so glad to start treatment.
Chemo and radiation will help shrink or get rid of the cancer, but for a cure, surgery is always neccesary. I had surgery in May 2008, and I am still showing no sign of cancer.
The time ahead is going to be a rough road,but for us that were able to take that road, it has been worth it.
Please keep us informed of upcoming test and results,
Praying, Sandra

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Lee and I had to wait about a month from the first endoscopy until he began his chemo. We also were anxious to get the ball rolling, so I know how you are feeling. It felt like an eternity.

If this helps you feel any better about the wait, we asked our oncologist how long he had cancer before we found it, and he said probably a year and a half. Keep in mind, he was a stage ivb, with mets to the liver, but really, waiting a couple weeks or a month even won't likely change anything as far as staging. So, while you are waiting, enjoy the calm before the storm! Also, the doctors need to be accurate as to the staging in order to know how to proceed with treatment.

Best of luck to the 'newbies', please keep us posted,
be well
Chantal

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Nice to meet you Chantal!

I've been reading through some of your posts and replies. I thank you much for being on here and sharing your experiences and getting your reassurance.

Looking forward to hearing from you,

Judy & Don

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hello Sandy!

Thank you so much for the warm welcome! We will be sure to keep you all posted and check to see how you all are doing.

Right now it feels like we are on the top of the world's most largest and scariest rollercoaster! Can't wait until we can pay it forward like each of you are doing by helping us newbies out.

Thank you,
Judy & Don

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