Stage IV Esophageal Cancer...need advice.

Hi.

Yesterday my father received a diagnosis of stage IV esophageal cancer. We are reeling from the news and are trying to deal with the reality of the situation. The oncologist says he is in overall good health and at 55 years of age may benefit from a clinical trial since he has not received any prior treatments. We are meeting with doctors about clinical trials tomorrow.

The internet has a plethora of information and right now it is a bit overwhelming. Sifting through all the information is a bit mind boggling considering my brain is still racing a million miles a minute trying to catch up with making appointments, getting referrals, and coping with life at the moment.

I have a lot of questions about treatments, side effects, prognosis, diet, and really would like to hear from others who have or currently are fighting this disease.

 

Thanks.

where in usa do you live? the key questions to answer at this stage 1) is the diagnosis correct, do you need a second opinion 2) who would be your surgeon / hospital. the surgeon needs to be someone who has done volume for this kind of cancer which implies the hospital he works out of should be a recognised center too. 3) who is going to be your oncoligist? again preferably someone who has seen many cases of the type of cancer you have 4) who is your raidialogist? i think this less crucial as it is more a science. find a center with the latest machine - MRIT - i think is the type of machine. 5) what kind of insurance you have - obviously it doesnt matter as you need treatment but still good to know the insurance parameters.

otherwise feel free to ask questions as this is a good board.

 god bless, andy

Thanks, Andy.

I appreciate your response and help in guiding me during this difficult time. We live in Atlanta, GA and my father has an appointment at Emory Winship Cancer Institute. He had a PET scan w/ FDG last week to confirm the cancer and staging. According to the scan, the cancer is in the distal third of his esophagus, lymph nodes and 2 left adrenal glands.The doctor has said the pathology reports show the cancer has neuroendocrine features, which he says has shown to be very receptive to chemo treatment.

Finding out someone you love has cancer is difficult.  My mother has cancer.  Seeing the doctor for the first time is overwhelming.  I agree.  I took my mother to MUSC in Charleston, SC.  They were absolutely wonderful.  I took a voice recorder with me to our first visit. We were scheduled to see 6 doctors in 1 day.  My husband also went with us.  I took a note pad to write and I had a list of questions ready to ask.  There are several of us children and our original plan was for us to take turns with my mother.  After the first visit, I knew someone need to be in charge of my mother's health care.  Even though I have had my sibling get mad at me I knew I had to do this.  They load you down with information.  One brain can not take it all in.  I start a notebook with dividers.  The front has a calendar with plenty of room for notes and doctor appointment.  My next section is for bloodwork.  Always ask for a copy of his bloodwork.  Ask for a copy of any x rays, ct, or mri results from your cancer doctor.  Keep a list of medication.  When they decide on the treatment, write it down. This way if you ever find yourself having to go to another doctor for something else, or find yourself in an emergency room, you will have all the information on hand. It is hard to remember everything. 

Most of all love, laugh, and live.  God is Good All the Time.  Trust Him.  He will carry you through.

someone else living in the east coast may have a suggestion on where and who to go. i went to seattle WA so that is too far for you. i also agree wtih psalm that it is very important to be organised. i scan all the paper work i have including test results/prescription/expenses and keep them in a chornological digital file. make sure you ask for a cd of your CT scans so you can send it to another doctor if the need arises. i also keep track of all expenses in an excel spreadsheet. type in the dates and what was done and when the insurance or hospital bills comes in , update the columns need to the date.

 so much to learn and so many things to get organised. best of luck and keep asking questions when one pops up.

 good luck, andy

Hi Sorry to hear about your situation. I just want to put my two cents in about one respect: it's important to order the medical records the hospital keeps as well as the cd-rom containing MRI and other tests. I ordered my own records not long ago and was appalled to find a surgeon had basically blown me off by oversimplifying my diagnosis per the radiologist. Only by reading my records did I find out the severity of my condition. I'm not saying every doctor will do that, but I was amazed at what some doctors and nurses had written without my knowledge. I was also naive in not knowing I had to go to medical records myself and order my records as it is otherwise illegal for a health worker to just show them to me on a computer screen - at least in the state where I live. And it's a great idea to keep a notebook or binder with dividers or even those plastic three-hole punched things where you can insert copies of whatever - the blood work or whatever, plus paper to write down your notes. Also it's early in the process, but why not start looking into whatever support systems your medical center has to offer patients and caregivers alike, plus options for hospice if the time comes? You can't do it all yourself it seems. Good luck getting started! I'm sure you are overwhelmed now but with some organizing, maybe it will get a little easier. I am glad there's an experimental treatment option! That is fortunate!

My husband was diagnosed three years ago this month with Stage IV adenocarcinoma of the esophagus.  (it started with a blood blister in colored part of his eye and after a bioposy of the eye and PET scans, endoscopy it was discovered to have started in the esophagus)  He was previously diagnosed with Barrett's Esophagus several years ago and has been on medicine for that.  We live south of Atlanta and my husband was told by a family member who works for the American Cancer Society to be treated in a big city or a cancer center, suburbs just are not as up to date as city doctors are.  He is currently being treated by Dr. Donald Filip from Atlanta Hemotology and Oncology.  I have heard very good things about Emory as well.  Although surgery is not an option, he is on his third set of chemo drugs in three years and hanging in there.  Dr. said he would be on and off chemo for the rest of his life. 

 

 

"Thank you" to everyone for the wonderful advice. My sister and I have been going to the appointments with our father and mother. I have a note book filled with notes, questions and phone numbers. We have received all copies of the CT and PET scans as well as the reports from the doctor. (I would be lost without my notebook!)

Thank you for sharing your story. It is encouraging to hear about others in the same situation. It has renewed my spirit and filled me with a much needed boost of hope. We have an appointment this afternoon at Emory with Dr. El-Rayes.

 

Hi there!  I am a 37 year old female.....I was dx with stage 3/4 Esophageal Cancer in March of 2008.  I had Squamous Cell Carcinoma which is not common, however responds to treatments better than other cancers.  I met with surgeon, Dr. Valerie Rusch at Memorial Sloan Kettering and she referred me to her team of dr.s. I took part in a study they were doing at the time and was told I would be receiving the most advanced treatment available at the time.  I had 8 sessions of Chemo(docetoxel, irinoticin and cisplatin); once a week for 2 weeks with one week break.  After 4 Chemo sessions, i received a combination of radiation and chemo together.  same chemo schedule combined with 28 days of radiation, 5 days a week.  treatments were difficult but tolerable.  i was able to work fulltime up until the point of radiation.  radiation, has it's own side effects and also intensifies the side effects of the chemo.  the most common effects i had was loss of most of my hair, fatigue, and loss of taste combined with a funny taste in my mouth.  at diagnosis, i could not get most foods past the tumor.  after my first chemo treatment, i began to notice a difference and was able to eat better.  towards the end of radiation, it began to get hard to eat because of the burning of the radiated area.  this was at its worst during the last week of treatment and the 2 weeks that followed.  by mid way through my treatments all my scans showed an 80% improvement in my tumor.  after treatment, my scan and biospy showed no evidence of any live cancer cells.  i went forward with the surgery to be sure all the cancer was gone and it was!  I am now, 1 year (plus a couple of weeks) post surgery and still cancer free and doing well.

hang in there and stay positive....with the right dr.s, a good outlook and lots of prayer and support, i know your dad can beat this. 

feel free to ask any questions you might have.

be well and please keep us posted.

God bless!

-Stacey

Hi,

It's really bad to hear about this. I stay in India. Here very Good but limited treatment available for this disease. We Opted with Best here.

About one yr back in Oct 2008 my father Diagnosed with Stage 4 of EC.the tumor was in lower third Esophegal and some few fresh Mated was in Liver. After some discussion with lots of senior Oncologist we stated Chemo with (Cisplatin, Carboplatin, 5 FU and Docxetol). After 21 chemo the result was like the liver mates were gone. and doctor said to complete the 5 more cycle of Chemo. and after complition of Chemo my father health was in bad shape. his hair was gone. lot of appetie loss and some other side effects.

After Biophsy, Endoscopy and PET the result was only some pointed site of disease in lower third of Esophegaus. The Tumor reduce in a great manner. after some days doctor suggessted for some Breathing ad some blood test. and My Father went for surgry as the test was ok.

Yes, he lost his weight after surgry also But after first follow up Doctor said he is ok by the time he will get weight. And he is Cancer free now.It's been almost a year he diagnosed with EC.

Many side affects are still there but ..

I am Praying for your Father. Just be faith in GOD. Everything will be alright.

Keep us Posted

 

Regards,

Deep