Mom just diagnosed

Ginny_B

Report used words like: large, friable, frond-like/villous, fungating, and infiltrative. Then went on to say "very large esophageal malignancy at the distal esophagus just above the g-e junction. It is at least 8 cm long."

So I googled this. Nothing I've read sounds positive. I did not share this info with my mom (84). Biopsy results on 10/6/11. That seems like forever-away! She's lost a lot of weight in the past 8 weeks. She can't swallow. I see photos of the beast and it looks like I see sutures. I think the good doc removed a nice chunk then sutured. Perhaps this is why mom could actually swallow Jell-O that I made for her.

Mom lives alone, but I think after the results come in I need her to come here with me.

Can anyone venture a guess as to what I might expect with the above words???

(I used to be on the CSN years ago when I had malignant squamous cell carcinoma on my face. Now-- no trace. Whew!

Ginny

ArchTB

Welcome and sorry you are here
Ginny, welcome to the site and sorry you are hear. It is really hard to make any prognoses or offer advice as you do not have any staging or diagnosis. This is, however, a serious disease and you should definitely prepare yourself for a battle. But i want to offer some hope as well. There are several people on this site that have been through many of these battles, some have won. Please keep us posted on your news.
Olya

BMGky

I'm sorry to hear of your
I'm sorry to hear of your Mother's diagnosis. Your description sounds like your Mother is going to have a rough go. "Infiltrative" suggest that it may be very established. Have they done the staging yet? Does seem like a little bit of a long time for biopsy, but maybe there are specific reasons. From what I understand, the key to prognosis is the staging. The earlier the Stage, the better the prognosis. Hopefully, some of the other board members will hop online and let you have more information. Please check back and let others know staging, biopsy results, physician recommendations and where you are receiving medical treatment. This will let people who have more knowledge give you helpful suggestions. Best thoughts for your Mother and You. Mary, wife of EC patient, IL April 2010 Stage 2, Last scan NED

Ginny_B

BMGky said:

I'm sorry to hear of your
I'm sorry to hear of your Mother's diagnosis. Your description sounds like your Mother is going to have a rough go. "Infiltrative" suggest that it may be very established. Have they done the staging yet? Does seem like a little bit of a long time for biopsy, but maybe there are specific reasons. From what I understand, the key to prognosis is the staging. The earlier the Stage, the better the prognosis. Hopefully, some of the other board members will hop online and let you have more information. Please check back and let others know staging, biopsy results, physician recommendations and where you are receiving medical treatment. This will let people who have more knowledge give you helpful suggestions. Best thoughts for your Mother and You. Mary, wife of EC patient, IL April 2010 Stage 2, Last scan NED

I wonder if anyone can
I wonder if anyone can recommend a book that I can read to help me be a good caregiver. Mom and I are close - we fight and argue, then laugh and joke, we knit and crotchet -- or did before she lost her sight years ago. I will be primary caregiver as my brother is fighting his own battles dealing with his wife's recurring breast cancer. We are a very small close-knit family. Our dad died 23 years ago - it's just the 3 of us. I'll be 61 in a few weeks, brother is 63 and mom is 84.

I will want my mom to come live with me and that will be a battle. She loves her independence and her own house. She's a Braille student and until this past Tuesday hasn't missed a class. She reads Braille or listens to audibles.

I'm rambling. I'm numb.

Thank you everyone.

JimboC

Ginny_B said:

I wonder if anyone can
I wonder if anyone can recommend a book that I can read to help me be a good caregiver. Mom and I are close - we fight and argue, then laugh and joke, we knit and crotchet -- or did before she lost her sight years ago. I will be primary caregiver as my brother is fighting his own battles dealing with his wife's recurring breast cancer. We are a very small close-knit family. Our dad died 23 years ago - it's just the 3 of us. I'll be 61 in a few weeks, brother is 63 and mom is 84.

I will want my mom to come live with me and that will be a battle. She loves her independence and her own house. She's a Braille student and until this past Tuesday hasn't missed a class. She reads Braille or listens to audibles.

I'm rambling. I'm numb.

Thank you everyone.

Hi Ginny, Welcome to our
Hi Ginny, Welcome to our little family. I'm sorry to hear about your Mom's diagnosis. Like the others have said, it's hard to comment much without staging info. I was staged at stage III. My tumor was 8cm when I was first diagnosed in February of this year. Chemo was very effective on my tumor and had shrunk it down to .5cm when it was removed in July. Bart Frazzitta was a co-author on a book, 100 Questions and Answers about Esophageal Cancer. http://www.amazon.com/Questions-Answers-About-Esophageal-Cancer/dp/0763760528/ref=sr_1_1?s=books&ie=UTF8&qid=1317386072&sr=1-1 Bart is a big advocate for Esophageal Cancer and a super nice person.

Unknown

This comment has been removed by the Moderator

chemosmoker

Another opinion...
Ginny,
Hate to say it as always, but welcome to our family.
ALL of the words used, as Sherri and others have already said, describe a large tumor that will most likely not be a good outcome. I will offer you the slight hope that if it is as bad as the wording, I have learned that in older folks as your mom, the cancer is usually allot slower growing/progressing as their metabolism is allot slower due to age. This may at least give you more time together, or more time for tests and results (as with the biopsy result slated for October) without fear of fast spreading in the meantime.
IF the care is to be palliative (as mine is), it might not be as aggressive as it is with me at my age (43). Just a thought.

I believe being a caregiver is kind of like parenting. While you can learn a LOT here and reading, you will figure most of it out by instinct and trial and error as you trudge along the path that you and your mom take on this journey.

I wish you all the best and hope you will post more information as you gain it.
Many people her can be VERY helpful and VERY informative.
This site is better than ALL the books I have ordered, downloaded and read about cancer since my diagnosis, combined. There is no other site quite like it.

God bless,
-Eric

TerryV

Stop Googling....
Hello Ginny!

Sorry that you have a need to find us, yet glad that you have. The information found in "black & white" on the Internet - those are statistics. Statistics are NOT your mom. Not are many of the statistics current. But I can tell you, they don't give you any insight into how an INDIVIDUAL will handle their treatment.

You will receive great advice here from people that are living with EC, as well as advice from caregivers. We aren't found in the statistics either.

You will also find friendship, prayer, guidance, humor, and tears - all here.

Know that we are adding your mom, you, and your family to our prayers. It takes a strong support family to get through this. Prayer helps provide strength.

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

Ginny_B

TerryV said:

Stop Googling....
Hello Ginny!

Sorry that you have a need to find us, yet glad that you have. The information found in "black & white" on the Internet - those are statistics. Statistics are NOT your mom. Not are many of the statistics current. But I can tell you, they don't give you any insight into how an INDIVIDUAL will handle their treatment.

You will receive great advice here from people that are living with EC, as well as advice from caregivers. We aren't found in the statistics either.

You will also find friendship, prayer, guidance, humor, and tears - all here.

Know that we are adding your mom, you, and your family to our prayers. It takes a strong support family to get through this. Prayer helps provide strength.

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

I have been reading other
I have been reading other threads on this EC board, what do the numbers mean? T3OMON or whiter I saw. I am guessing that the digit is Stage - dunno what the T means or the other letters. I presume we will know mom's number when we go in for the biopsy results??

At this point, I don't even know what questions to ask. I have never been a caregiver - don't know how to be one.

I talk to my mom a couple of times a day. Today she said she made arrangements for someone to stay with her if/when she has surgery. She at least is open-minded and probably feels that she will need more treatment.

She is still pain-free when swallowing. She's happy about that.Still has a sore throat from the tube. She sounded upbeat and happy. AND... she's eating!

Thanks everyone and pardon my questions.

AngieD

Ginny_B said:

I have been reading other
I have been reading other threads on this EC board, what do the numbers mean? T3OMON or whiter I saw. I am guessing that the digit is Stage - dunno what the T means or the other letters. I presume we will know mom's number when we go in for the biopsy results??

At this point, I don't even know what questions to ask. I have never been a caregiver - don't know how to be one.

I talk to my mom a couple of times a day. Today she said she made arrangements for someone to stay with her if/when she has surgery. She at least is open-minded and probably feels that she will need more treatment.

She is still pain-free when swallowing. She's happy about that.Still has a sore throat from the tube. She sounded upbeat and happy. AND... she's eating!

Thanks everyone and pardon my questions.

Give up googling
Hi, Ginny,

Welcome to the place none of us would choose to come, but are so glad it's here for us now.

General googling of EC can make you crazy. As far as I can tell, the latest statistics that are SO depressing are from 2004. And you'll find stuff like "it is rare and mainly effects men over 65." On this board you will see there are men over 65, but there are SO many younger people in their 30's and 40's and lots of women, like your Mom--and new people showing up almost daily.

So here, you find the real life, real time, real world of EC. And most everyone is willing to share what they've learned and give support.

I'm pretty new, but I can answer some of your questions. A biopsy only determines if the tumor is malignant or not. Other tests are done to determine the staging. There are usually at least 2 more after the endoscopy is done. A PET scan shows areas where there is hyper-metabolic activity (where more of a radiated glucose-like solution is taken up). These are areas of suspected malignancy. This test scans from the head to the knees. The second test is an EUS. This is another endoscopy with an ultrasound component that can tell how far through the wall of the esophagus the cancer has gone.

As an example of the numbers you mentioned, my husband's were T3/N2/M1. Meaning: T3=tumor has penetrated all 3 layers of the esophagus. N2= 2 areas of lymph nodes showing activity M1= Metastatic, cancer has spread to distant lymph nodes
Then staging is based on these numbers. There are I through IV stages. In the above example, that is Stage IV because it has spread away from the immediate area in the esophagus. Someone else can explain the other 3 stages better than me.

I would suggest that you make sure your mom gives permission to all the doctors and centers involved in her treatment for you and your brother to be given any and all information you request. This will greatly simplify things and make it possible for you to call and ask questions or get information whenever either of you want.

The emotional and informational overload on top of the staggering shock of the diagnosis can just be overwhelming at first. I suggest that you don't keep all of this to yourself and share with others. And, #1, try to learn to stay in the moment and don't try to look too far ahead.

You and your mom will be in my thoughts and prayers.

Angie

TerryV

Ginny_B said:

I have been reading other
I have been reading other threads on this EC board, what do the numbers mean? T3OMON or whiter I saw. I am guessing that the digit is Stage - dunno what the T means or the other letters. I presume we will know mom's number when we go in for the biopsy results??

At this point, I don't even know what questions to ask. I have never been a caregiver - don't know how to be one.

I talk to my mom a couple of times a day. Today she said she made arrangements for someone to stay with her if/when she has surgery. She at least is open-minded and probably feels that she will need more treatment.

She is still pain-free when swallowing. She's happy about that.Still has a sore throat from the tube. She sounded upbeat and happy. AND... she's eating!

Thanks everyone and pardon my questions.

Ginny,

William - the "local" expert on EC and a 9 year survivor - posted informatin on the TNM's of EC for me when I was "new". You might want to review his post here - http://csn.cancer.org/node/222010. By rereading it, I realized that I had been reporting my husband's nodes incorrectly.

You for sure want an M of ZERO. That means NOT metasticized. I thought that the N was actually the number of Nodes involved NOT location, but I can't find the document I'm searching for right now. The T is definitely the progress of the tumor through the esophagus. This site is close to what I'm trying to find http://www.eccafe.org/cnt/staging.html

Hope these help you!

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11

Ginny_B

TerryV said:

Ginny,

William - the "local" expert on EC and a 9 year survivor - posted informatin on the TNM's of EC for me when I was "new". You might want to review his post here - http://csn.cancer.org/node/222010. By rereading it, I realized that I had been reporting my husband's nodes incorrectly.

You for sure want an M of ZERO. That means NOT metasticized. I thought that the N was actually the number of Nodes involved NOT location, but I can't find the document I'm searching for right now. The T is definitely the progress of the tumor through the esophagus. This site is close to what I'm trying to find http://www.eccafe.org/cnt/staging.html

Hope these help you!

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11

Terry, thank you for the
Terry, thank you for the link!I copied the contents of his reply to you so I can save it to my desktop. Ok, here's hoping for: T1N0M0! (Did I hope correctly?) (grin).

I want low numbers. I pray for low numbers.

TerryV

Ginny_B said:

Terry, thank you for the
Terry, thank you for the link!I copied the contents of his reply to you so I can save it to my desktop. Ok, here's hoping for: T1N0M0! (Did I hope correctly?) (grin).

I want low numbers. I pray for low numbers.

You got it *exactly* right!
T1N0M0 is exactly what you want!

Praying low numbers for you. And higher, praying for nothing higher than a T2N0M0.

Terry