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New to the board; my Dad is battling EC

EthanMoore
Posts: 4
Joined: Jun 2012

Hello all. After reading the board, I felt compelled to join up. To give you a brief background of my experience, my father was diagnosed with EC on 12/11. The surgeon (who has been awesome) advised him to have an esophagectomy first, then undergo chemoradiation. I've heard of the positive results of this in reverse order, but the tumor was removed on 1/5/12 along with 16 lymph nodes. His surgery was deemed a success; his margins were clean, but one node came back positive. His EC was staged at a 3. The surgeon said in his experience, that my dad was lucky to have it found when he did, even though it turned out to be stage 3.

My dad is in pretty good health at age 64. Within a couple of months, he returned to the gym doing some light excercies and to the golf course. The Chemoradiation process has fatigued him some, but overall it hasn't been too bad. He has lost about 20 pounds because of his smaller stomach that gets full too fast. He has completed the radiation portion and has one more round of chemo next week, then his first post-op scans.

His doctors have been impressed with his recovery process and I continue to be so proud of his positive attitude and of him. He has a great support system with my mother, two sisters, and myself.

This is where I need help....for some reason, I'm getting overwhelmed by negative worries, when right now, I have no reason to be. I keep thinking the cancer is going to come back, etc. I have been praying about and I know that I need to always be focusing on the positive (I do that as well) and taking things day by day.
1.I need some advice on how to keep from always worrying.
2.Also, what are things my dad can do to try to keep the cancer from recurring once his chemo is finished.
3. Do I need to research trials now to be prepared if it returns?
Thanks in advance.
Ethan

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

Ethan,
Welcome to our family. We have a lot of patients as well as caregivers with all different stages. The one thing we have in common is EC. The beast stays a part of our every day life,but we learn to not let it be in control.

You're right about treatment. Most of the time chemo is given before surgery, but doctors are different. Your dad seems to be doing great. I also was stage three. I have been cancer free for four years.I do have a little concern about reccurence.It's a fact EC is a deadly cancer, but we have a lot of success stories on board and I refuse to let worry control me. Before a scan I always have a little scanxiety until my results are back.

Your dad needs to follow insructions on eating and eat healthy. My doctors told me, it is very important to keep down acid reflux. I take medication for this daily, and sleep elevated. This is very important after surgery to control the acid.

I'm not one to research the what ifs. If it happens to me, I will lean on this board to help. William, sherri, Paul and so many more do a lot of research and are always willing to advise. They are not doctors, but have dealt with the beast,and will refer to the medical sources that are good. Every thing we find on the internet isn't always good.
You will be hearing from others to welcome you.

Once again, it's so good to hear your dad's progress,

Sandra

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

Diet and exercise are KEY! I think it's imperative to stay connected to your faith and have a positive attitude! My dad is currently facing inoperable EC Stage 4. We have sought out alternative medicine. His attitude has changed a lot the past month or so. Don't worry about tomorrow. Focus on your relationship TODAY and stay strong. Have faith that whatever tomorrow brings, it will only make you stronger.

lyndez
Posts: 22
Joined: Apr 2011

Hi Ethan

I would advise you to look into low dose naltrexone and vitamin C IV. My husband (48 years old)was a stage 4 EC diagnosed in January 2011 and to this day, still in remission. He had 10 treatments of radiation and 6 chemo treatments (Cisplatin and 5 FU). 5 months after his last chemo, CT scan showed the tumours in the liver and esophagus barely visible , so obviously what we are doing is working. I personally know someone who had stage 4 pancreatic cancer and he did high dose vitamin c (ascorbic acid) by mouth and he lived for 29 years, he died 3 years ago of a heart attack at the age of 80. I juice fruits and vegetables daily such as carrots, beets and green apples and whatever else I feel like juicing and he also takes many supplements daily as per the naturopathic doctor. If you can get his doctor to prescribe low dose naltrexone, I do believe that is what's helping. You can get the information if you google LDN, it must be prescribed by a licensed physician and compounded by a reliable pharmacy and it's inexpensive. Good luck. Lynne

EthanMoore
Posts: 4
Joined: Jun 2012

William,
Thanks for the help. Feel free to give me a call tomorrow after 11 am. My number is 502-741-3435. Sadly, I've always been a worrier and someone who over-analyzes things. Funny you say "don't push the weight gain" as he says frequently that he doesn't like when he's told to eat more. We know he is trying so we have backed off. I'm pretty sure the surgeon Dr. Michael Bousamra) removed all the nodes, so the cancerous one is out as well. I believe he had the Ivor Lewis (the one where you have your chest and back cut open). My dad is doing well and doesn't seem to worry...I'm sure I'm doing it for both of us.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

if you want to worry, I say it's ok to worry. Same for crying. Cry whenever you want to. Worrying vs crying doesn't help YOU though. It may make you stressed. I fretted a lot. There's just no getting around that. EC is a horrible horrible cancer and it not only eats away at the esophagus, but also our heart and mind and nerves and our entire outlook! It's just horrible. It really doesn't do any good to be told not to worry.

Maybe focus on all the good things. All the positives such as all the days your dad has and all the days you get to spend with him. Focus on the love.

The worry will always be there, but maybe you can overshadow it with love. Hugs to you and your dad!

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Dear Ethan,
As a caregiver to my husband who has also had the Ivor Lewis in February this year, I can understand your worries and I sympathise. It is very difficult to stop yourself worrying and very easy for all of us to say take each day as it comes and enjoy it.
Yes your Dad has been lucky to have had the operation, but the fact that he is doing so well is testament to his positive attitude, so perhaps you could try believing in him and his ability to beat this dreadful disease. He doesn't seem to be dwelling on his illness to the degree that you are, so please try to have faith that he will beat it and don't let this ugly cancer rob you of any more minutes hours or days than it has already.
Your Dad seems to be doing all the right things to keep him healthy and he is a success story. Believe it!
I sometimes find that a mantra helps and every time I feel frightened or have feelings of disquiet, I repeat over and over in my head,
'I'm well, Rob is well and all is well with our lives - be happy!'
Gos bless you Ethan and all your family, I hope you find peace soon.
Prayers and hugs,
Marci

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