EC back.. this really sucks.

robyn37323 · July 2010

Hi everyone, Mother got back to TN on Sunday and went to the ER Monday morning. After bloodwork, CT, exrays Drs removed the fluid and tested it. They determined that the fluid had EC cells in it that the cancer is back throughout her bloodstream and there is nothing they can do for her. She told them she would not undergo any further chemo or radiation. We are going to look for a alternative medicine. hopefully we will find something that will help her.

unclaw2002 · July 2010

I am so sorry to hear your
I am so sorry to hear your news. If your mother really doesn't want any further treatment - perhaps you can inquire about pallative treatment to ease any pain.

Have you considered getting a second opinion. You don't mention who gave your mother the most recent diagnosis or what her stage is? How long had your mother been in remission? Did they run a full battery of tests --- are they cancer specialists in the treatment of EC? Her regular family doctor?

Of course you must honor your mother's wishes, but I am sure the daughter in you doesn't want to give up. I am the daughter of a 78 year old dad who has stage III, T3,N1,M0 EC.
It just doesn't sound like your mom had a complete evaluation or a complete discussion of options. Depending on how long ago your mother had her previous cancer treatment there may have been many changes. Also, you don't say how old she is, or how her health is in general. Also, this may be a reaction to being told the cancer is back and with some reflection she may decide she doesn't really want to refuse treatment.

Let us know some more informatino and perhaps there are folks on the site who can provide you some information and suggest some options for your mom. While I do believe in some of the alternative medicine options I think they are best used in combination with western medicine. Today they are making so many advances in the treatment of EC at the major cancer centers you may want to consider getting a second opinion.

Let me know if I can help.

Best,
Cindy

robyn37323 · July 2010

Mother
Hi Cindy, Mother was diagnosed last october with ec. within 10 days they had her in treatment of the strongest chemo they had access to here placed it in a pump to run 24/7 for 5 days off during the weekend then on 5. They did this with radiation 3days a week until the wednesday before thanksgiving. that gave her 6 full weeks. of treatment. they took new pet/ct scans bloodwork, exrays etc. said the tumor had shrunk that they would be able to do surgery in 6 weeks. That took her to the 27th of january 2010. Just b4 surgery they ran all the test again. they removed 2/3 of esophagus and 1/3 of her stomach. They biopsyed everything around on the inside to be sure they got it all. all tests concluded she was cancer free. In may for her 5 month check up they did all test all over again, bloodwork, pet scan, ct scan eray and assured her she was cancer free. she was a survivor. Drs gave her a clean bill of health and told them to go to florida for a while. The left around the 21st of May, she was have a great time her strength was coming back then the day befroe my husband and I went down on June 4 she started having shortness of breath, the by the beginning of the next week it became more painful with every breath we decided she may have pnemonia and went to her dr in fl. he had bloodwork CT scan and ex ray done. They decided she did nto have pnemonia but tests did show fluid around/on the lungs but they did nothing other than send her home with strong antibiotics. she took them for about 8 days and my dad took he to the er. they kept her there to determine what they had on their hands and still concluded that it must have been pnemonia. They sent her home with more antibiotics.
She returned to TN two weeks ago today. I went with my parents last week to memorial hospital in Chattanooga, TN. They admitted her and of course ran all the test again only this time they removed the fluid and ran test on it. They said the EC was back. They sent her home Monday with a call to hospice. The fluid is still collecting making it painful for her to breathe. We have told all the brothers and sisters and grandchildren. They are all suppose to be in this weekend. I hope they can make it. gotta go now seem to be compelled to grab my youngest granddaughter and put things together and get over to my moms.. My mother said that she has never know anyone to have hospice over 6 weeks. Im am so sad and in tears. ill talk to you later.
Robyn

Unknown · July 2010

This comment has been removed by the Moderator

tb7 · July 2010

Options . . .
Cindy and Sherri have such great thoughts, ideas, and advice! I would also encourage you and your mom to think about options that might be available to her.

My husband was pretty much run down after the pre-surgery chemo and radiation. Then, he was really wiped out for a while after surgery. Slowly, he returned to a more "normal" state, if you can call it that. He recently faced a recurrence. His original oncologist was not very encouraging, but he did suggest clinical trials. We entered a trial in January and, after five months of treatment, my husband is doing fine. During his treatment, he worked full-time, only taking time away from the office on treatment days. And, even then, he worked, taking phone calls, doing paperwork, etc. while receiving infusions. He viewed the treatments as an annoyance more than anything else. He did have some side effects from the drugs, but nothing that he could not handle, and nothing like what he had been through pre-surgery.

So, I guess my advice is to encourage your mom to seek out the best possible medical opinions and to make sure she is being treated by an oncologist who either specializes in esophageal cancer or is very experienced with it. The first oncologist that we had knew very little about EC. When we changed doctors, it was a world of difference in terms of understanding and treatment and, I am sure, longevity and quality of life.

I hope the best for you and your family in the time ahead and with the decisions you will be facing . . . make sure you get in lots of time with mom and lots of hugs!

Trisha

Unknown · July 2010

This comment has been removed by the Moderator

CynthiaFloydManley · July 2010

Robyn - more info from Vanderbilt-Ingram Cancer Center
Thanks, Mr. Marshall, for all the info for Vanderbilt-Ingram Cancer Center in Nashville. I am the communications director there and can provide new info on how best to reach us:

For Patients - 24 hrs/day - 7 days/wk
Local 615-936-VICC (615-936-8422)
Toll-Free 1-877-936-VICC (1-877-936-8422)

For Referring Physicians
Local 615-343-3700
Toll-Free 1-877-6MD-VICC (1-877-663-8422)

Clinical Trials Information
Local 615-936-5847
Toll-Free 1-800-811-8480

This is a new Access Center, and unfortunately getting everything corrected on all the various websites associated Vanderbilt University Medical Center has been quite a challenge! We're making progress, and any of the numbers you've listed before will work, but this is the quickest way to get to the folks who make appointments.

Robyn, other info that might be of interest:

Our team who treat esophageal cancer - http://www.vicc.org/dd/dz/results.php?name=esophageal-cancer

You can also find other information about our center, etc., at www.vicc.org. We'd also welcome any new members to our Facebook community: www.facebook.com/vanderbiltingram

I hope we have something that will help your mom, and I know that our team will do all they can to help you find the right answer for her and your family.

Take care.
Best,
Cynthia Floyd Manley
www.twitter.com/manleyatvicc

robyn37323 · July 2010

VICC
Thanks Cynthia and William, Mother has an appointment at 1:00 on Friday. My sister either picked up her records at Memorial in Chattanooga from all the Dr's she had seen or had them faxed to VICC. She ordered the pathology reports/slides to be sent to your pathology lab, everything should be there by the time her appointment arrives.

robyn37323 · July 2010

numbers & letters??
Hi William,

Mother's cancer is T2 NO MX? and on another section of the same page of her report says
T3 NO MX. We will find out soon which it is.

My sisters picked her records up including her pathology slide from January and her records have been faxed to Vanderbilt!!!

Mother's first appointment there is Friday at 1:00. When my husband gave her a kiss goodnight as we were leaving she looked up at him and said I think there is hope.

Will fill you in as soon as I know something.

Thanks again
Robyn

tammylouhay · July 2010

Congratulations on getting your mom to Vanderbilt
Hi Robyn,

I am so excited for you and your family that you have booked an appointment are ready for the next step.

I have not had the same luck convincing my father to seek either a second opinon, or superior medical care, but I really do think it is in her (your mother's)best interest.

I am so glad to hear that she is feeling the hope that you have offered her. There truly is so much power in that alone.

I wish you and your mother the best possible outcome.

Kudos William for all your help and information!

Thinking of you all,

Tammy

robyn37323 · August 2010

We are loosing our Mother
Hi William,

I guess my mother's EC was much further along than the Dr's wanted to tell us. Last Thursday I took Mother to the hospital as she was constipated from the pain meds. (she has had trouble in that area all her life) anyway they admitted her, unfortunately she will not be returning home to us. The Dr has told me that she has approximately 72 hours. Sometime late Sunday we think she had a stroke as she can no longer speak or focus on any one person, nor does she have control of her limbs. The Dr. has not even bothered to confirm the stroke. We did tell her (Dr) why we felt that mother had stroked. Alot has happened. It took getting her moved to palative care and a new Dr to find out that she has SEVERAL 2+" EC tumors in her liver besides the plural cavity fluid being cancer. She has not been able to eat since Monday and had signed papers that no feeding tube be placed.

Anyone reading this I hope you are not in Chattanooga, TN. DO YOURSELF A FAVOR AND STAY AWAY FROM CHATTANOOGA CANCER INSTITUTE!
all we are sure of is that the oncologist and the surgeon and thoracic surgeon need to go back to school to learn the most updated technology. Using the most evasive type of surgery was uncalled for and if they had not been so worried about lining their own pockets, they would have referred her to a specialty hospital.
I thank you so very much in all you have done in giving us hope. My sisters and I tried to take her to Oklahoma last October when we found out and she refused to go she for some reason felt secure with the Drs here. It was ultimately her decision. I am just so sad that we didnt know sooner. Oh yea her oncologist visited her/us on Friday last week and proceeded to tell us about her liver cancer in which he did not tell us she had in January when surgery was done. We were all in shock that he knew and didnt tell us. If she had know she was full of cancer she would have lived out her days having fun until it took over. She would never have had the surgery and she told them this before they even tested her. I just do not understand why they put her through it all.

I am sorry for jumping all over while writing this. I just type it in as I think of it. Again Thank You.

Robyn Hill
Loving Daughter
of Phyllis Damron

robyn37323 · August 2010

We are loosing our Mother
Hi William,

I guess my mother's EC was much further along than the Dr's wanted to tell us. Last Thursday I took Mother to the hospital as she was constipated from the pain meds. (she has had trouble in that area all her life) anyway they admitted her, unfortunately she will not be returning home to us. The Dr has told me that she has approximately 72 hours. Sometime late Sunday we think she had a stroke as she can no longer speak or focus on any one person, nor does she have control of her limbs. The Dr. has not even bothered to confirm the stroke. We did tell her (Dr) why we felt that mother had stroked. Alot has happened. It took getting her moved to palative care and a new Dr to find out that she has SEVERAL 2+" EC tumors in her liver besides the plural cavity fluid being cancer. She has not been able to eat since Monday and had signed papers that no feeding tube be placed.

Anyone reading this I hope you are not in Chattanooga, TN. DO YOURSELF A FAVOR AND STAY AWAY FROM CHATTANOOGA CANCER INSTITUTE!
all we are sure of is that the oncologist and the surgeon and thoracic surgeon need to go back to school to learn the most updated technology. Using the most evasive type of surgery was uncalled for and if they had not been so worried about lining their own pockets, they would have referred her to a specialty hospital.
I thank you so very much in all you have done in giving us hope. My sisters and I tried to take her to Oklahoma last October when we found out and she refused to go she for some reason felt secure with the Drs here. It was ultimately her decision. I am just so sad that we didnt know sooner. Oh yea her oncologist visited her/us on Friday last week and proceeded to tell us about her liver cancer in which he did not tell us she had in January when surgery was done. We were all in shock that he knew and didnt tell us. If she had know she was full of cancer she would have lived out her days having fun until it took over. She would never have had the surgery and she told them this before they even tested her. I just do not understand why they put her through it all.

I am sorry for jumping all over while writing this. I just type it in as I think of it. Again Thank You.

Robyn Hill
Loving Daughter
of Phyllis Damron

robyn37323 · August 2010

We are loosing our Mother
Hi William,

I guess my mother's EC was much further along than the Dr's wanted to tell us. Last Thursday I took Mother to the hospital as she was constipated from the pain meds. (she has had trouble in that area all her life) anyway they admitted her, unfortunately she will not be returning home to us. The Dr has told me that she has approximately 72 hours. Sometime late Sunday we think she had a stroke as she can no longer speak or focus on any one person, nor does she have control of her limbs. The Dr. has not even bothered to confirm the stroke. We did tell her (Dr) why we felt that mother had stroked. Alot has happened. It took getting her moved to palative care and a new Dr to find out that she has SEVERAL 2+" EC tumors in her liver besides the plural cavity fluid being cancer. She has not been able to eat since Monday and had signed papers that no feeding tube be placed.

Anyone reading this I hope you are not in Chattanooga, TN. DO YOURSELF A FAVOR AND STAY AWAY FROM CHATTANOOGA CANCER INSTITUTE!
all we are sure of is that the oncologist and the surgeon and thoracic surgeon need to go back to school to learn the most updated technology. Using the most evasive type of surgery was uncalled for and if they had not been so worried about lining their own pockets, they would have referred her to a specialty hospital.
I thank you so very much in all you have done in giving us hope. My sisters and I tried to take her to Oklahoma last October when we found out and she refused to go she for some reason felt secure with the Drs here. It was ultimately her decision. I am just so sad that we didnt know sooner. Oh yea her oncologist visited her/us on Friday last week and proceeded to tell us about her liver cancer in which he did not tell us she had in January when surgery was done. We were all in shock that he knew and didnt tell us. If she had know she was full of cancer she would have lived out her days having fun until it took over. She would never have had the surgery and she told them this before they even tested her. I just do not understand why they put her through it all.

I am sorry for jumping all over while writing this. I just type it in as I think of it. Again Thank You.

Robyn Hill
Loving Daughter
of Phyllis Damron

lindadanis · August 2010

Sherri- I have a question for you
Hi, we have taled many times before but I was looking at your picture, it looks like you, your husband and maybe daughter? Do you mind me asking how old was Jim when he was first diagnosed? How is he doing now, I have folllowed your story for a while and the past few weeks have been so hectic around here, I haven't been on the computer much. Is he still in treatment? Is his met's gone?

thanks Sherri,

Linda

zinniemay · August 2010

Loving daughter
I read your post, and I can relate some to this My husband went to Ann Arbor , they did a good job, but he wanted to be closer to home so we went to a Cancer Center in West Michigan, we went there twice and I was very put off , the first they would say is you have a 25.00 co pay, I told the doctor he said sorry but this is a business. When my husband asked the doctor about what to do , The Doctor said Go on a trip to the Islands. Have fun. Then he asked what Dr Worden said . We thought we were asking his opinion not what we had heard. So We went back to Ann Arbor.
I know that is is a business but they are dealing with people's lifes and I was very sadden by their acts there. So make things worse . The first Doctor my husband seen one the first visit he left the following week . So we need to know the evil places or the ones that are not doing all they can or trying to .
I wish you peace in your heart. That is the only thing I can say and I know it does not ease your feelings. I wish I could reach out and say everything will be ok. My heart breaks for you .
Jennie

EC back.. this really sucks.

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