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My dad has Esophogas Cancer

Jess_B
Posts: 5
Joined: May 2014

We found out my dad has Esphogas Cancer on April 1st. We just got the PET scan results today and he has Stage 2 cancer. The treatment he will be getting is radition 5 days a week and chemotherapy once a week for 5 weeks. Then they will give him 6 weeks off before they perform a surgery to remove a part of his esophogas where the cancer is sitting (it's in the lower part of espohogas). We have been told the cancer has not spread. The appointment we had today was with the Radition oncologist and he gave us alot of information about the chemo and he's going to be a lot sicker then I thought. My wedding is happening the "peak time" of his side effects from chemo... but it's okay... I just want him to get better forever. What scared us was even after all the radiation and chemo and then the surgery (2-6 months recovery time) we were told the survival rate is 50%. I am terrified! He said it has not spread, it is in an early stage and they are performing chemo and surgery ... so I don't understand why its only 50%.

I want to know what chemo is like and what my dad will be going through. Has anyone gone through this or know anyone that has? I want to know what my dad will be going through. I want to know how those that have gone through it are doing now?  Any advice for my dad? On your sickest days, were you able to get out of bed-Will my dad be able to walk me down the isle?

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

I was diagnosed with the same stage of esophageal cancer as your Dad in 2009. I had surgery and chemotherapy and I am doing well today.

First, not all people react the same way to chemotherapy, some people have a very difficult time and some people do not.

All patients who have chemotherapy had unpleasant side effects. In my case the side effects were nausea, fatigue, and diarrhea. My oncologist gave me additional medications to improve all of the side effects I had. It did not make them go away completely but they did improve things considerably.

I had three chemotherapy drugs, Cisplatin, Epirubicin, and 5FU. I received the Cisplatin and Epirubicin every 21 days and received the 5FU continuously via a personal IV medication pump that I wore for the period of my chemotherapy. My side effects were most pronounced three days after the infusion with Cisplatin and Epirubicin for about 4 days, things improved the second week, got much better the third week. Then it was time for my next infusion and the process started over again. After a while your Dad and his oncologist will learn how his body responds to the particular drugs they use and how to manage his side effects. At no time during my chemotherapy was I so ill that I could not get out of bed. Perhaps, depending on where your wedding is in his chemotherapy cycle, your Dad and his oncologist can time things so his side effects are at minimum.

The survival rate for surgery seems low because it is MAJOR surgery. The esophagus is in a difficult place to reach and close to the critical major organs (lungs, heart, liver, etc.), after the esophagus is removed the stomach must be reshaped into a tube and used to replace the esophagus. You want to be sure the surgeon that does this surgery has done MANY of these surgeries and it is done in a center that does MANY as well. This is not something for your local hospital and a general thorasic surgeon.

It took me about six months to recover from my Ivor Lewis esophagectomy and almost a full year before I felt like my “old self” again.

This is a difficult treatment, but the good news is that people survive the treatment, recover, and continue enjoying life with the people they love.

Come back here often with questions as your Dad continues through surgery, we can make suggestions to make the process easier and offer encouragement when he becomes depressed.

Best Regards,
Paul Adams
Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Four Year Survivor

 

 

 

Jess_B
Posts: 5
Joined: May 2014

Thank you so much Paul for the information. We will speak with our oncologist and see if it can be timed so his side effects are too sever during my wedding. I feel better knowing that there wasn't a day where you couldn't get out of bed. I understand everyone reacts differently to the drugs but it's still comforting knowing that there is a good chance my dad will attend my wedding.

I will definitly be posting more questions on here while my dad is going through Chemo. I really appreciate your offer to give ongoing advice. My dad is my world and I will do anything I need to to make sure he gets better.

Did you have an NG tube? Did it help you mantain your weight? Did you lose alot of weight during chemo?

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

I had an NG tube while I was in the hospital. When they did my surgery they also installed a jejunostomy tube also called a "j-tube" here is a reference that describes it http://cancer.dukemedicine.org/cancer/health_library/care_guides/treatment_instructions/jejunostomy 

It did help with maintaing my weight and hydration. I used it for about a month after my surgery. I did lose about 25% of my body weight while completing surgery and chemotherapy. It look me a while to gain weight again but I did gain back about 70% of the weight I lost.

Your Dad will need to learn a new way to eat after surgery. I eat 7 small meals a day rather that three large meals. But I eat pretty much all the same things I used to eat, just in smaller amounts.   

 

Best Regards,

Paul Adams

mardigras's picture
mardigras
Posts: 197
Joined: Sep 2011

HI Jess,

I'm so sorry you find yourself here, but welcome to our support group.

You will find a lot of help and advice here as time goes by, but I wanted you to know that you are not alone.

My husband is a three year survivor of this horrible disease, and he is doing really well.

You are fortunate that your Dad is stage two, which means that a lot can be done for him. My husband Rob was a borderline stage 4 and he almost did not qualify for the op. Rob survived the op and the treatment, so there is  hope.

Rob had little to no side effects from the chemo and we were able to walk four miles every day. I kept him on a diet very rich in vitamin C and antioxidents. He was not sick once and even if a patient does feel sick, there is medication to counteract it. We tried our best to keep him fit, so that he could cope with the op. I'm not saying for a moment that it was a walk in the park, but it's behind us and we look forward now.

Just a couple of things to think about before your Dad's treatment begins.

Ask your oncologist to do a test to see if your Dad has the HER2 gene. If he has then he would be able to have Herceptin chemo. The results from Herceptin are amazing. Rob did not have the gene so he wasn't able to have Herceptin, but your Dad might have the gene,  so ask. 

Also, make sure that you research his surgeon. He needs yo be someone who has done very many of these operations. Depending on where you live, you can ask on here if anyone has heard of your surgeon. Someone probably has if he is good.

 

 

If you need more info or help, just ask. There is akways someone who will be happy to help.

 

Prayers and a hug,

 

Marci xxx

Jess_B
Posts: 5
Joined: May 2014

Thank you so much Marci for your kind words. I am so happy your husband is doing great now and that he had little to no side effects from chemo. That also gives me hope

I will ensure we keep my dad on a diet very rich in Vitamin C and antioxidents as you mentioned. This helps! I'm very glad to hear that your husband was able to walk every day for 4miles! I was under the impression that my dad would barely be able to get out of the house- we will ensure to keep my dad active and he gets alot of fresh air.

We were also told my dad will never be able to eat properly again after the surgery. Did your husband find the same thing?

I'm so glad to have found this board. Thank you so much for messaging me- I can't even explain how greatful I am to be obtaining help from strangers that have gone through what my dad has or is someone really close to someone that has.

 

mardigras's picture
mardigras
Posts: 197
Joined: Sep 2011

Hey Jess,

I'm pleased that you have found a little comfort here with us.

You don't say where you are from, but you could try to get in touch with Dr James Lukeditch. You can get the information from the internet. I did, and he answered an email from me the same day.

He was the pioneer of esophageal micro surgery in the USA and probably has more experience of this disease than anyone. We are in the Uk, but even here his name is whispered with reverence. I contacted him and he gave me really good advice, which I followed and changed our specialists and our surgeon to a hospital five hours drive from where we live. This was a hospital with thoracic surgeons who specialise in EC. I will always be glad that I did.

I don't know one of the chemo drugs that you mention, but James Lukeditch will.

The Ivor Lewis, which is the surgery Rob had, is much more invasive and the recovery time much longer. Your Dad is stage two, so I would have thought that he might qualify for micro surgery.

I cannot say strongly enough that you should get a second opinion. It's the time to be strong, be positive and respectfully tell the oncologist and the surgeon that your Dad's life is the most important thing to you and you hope that they will understand why you want a second opinion.

Your Dad will be able to eat properly. Rob never needed a feeding tube and the most discomfort he feels after eating is a feeling of being too full.

. He burps a bit and says that he feels too full, but after about 10 minutes, he starts picking again with no after effects. He will always be much thinner than he was before EC because the geography of his body is altered and putting on weight is a really slow process. The lack of problems that Rob has had, are I believe, due to the wonderful expertise of his surgeon.

 

 

There are other things to talk to you about after surgery, but take things a day at a time Jess.

 

Keep in touch and don't feel alone.

 

 

Prayers and a hug.

 

Marci

Jess_B
Posts: 5
Joined: May 2014

Just an update on the chemo drugs my dad will be getting-  paclitaxel and carboplatin.

Sally.L
Posts: 38
Joined: May 2012

Hello, so very sorry to hear about your dad’s diagnosis.  This is a horrible decease, but it’s not an automatic death sentence.  It will change all of your lives for sure no matter the outcome, but many people are beating this monster.   Here is my husbands success story

My husband Paul, was diagnosed stage 3 in May of 2012.  He had very similar treatment to what it sounds like your dad will be having.  He is cancer-free today and doing everything he did before the treatment and surgery.  It’s true, the diet will change and that seems to vary quite a bit from person to person.  Small meals more often seems to work best for most people.  It takes some getting used to but according to my husband, it’s a small price to pay and there really isn’t anything he can’t eat, he just can’t eat as much.

Paul started feeling the side effects of chemotherapy about 24 to 36 hours after each treatment.  He generally spent one to two days a week feeling pretty rotten and not doing much, but other than that he says it wasn’t too bad. 

Researching and selecting the best doctors and hospital you can find is key, one that specializes in esophageal cancer treatment and surgery.  A second opinion is also a must.   After convincing  Paul he needed a 2nd opinion before surgery, we ended up changing doctors and having the surgery at another hospital,  I am so glad we did.  His surgeon was outstanding in every way, he performed a minimally invasive esophagectomy and Paul came through the 7- hour surgery like a champ.  He was going into the office two weeks later.  Eight weeks later he was doing most of the things he had done prior to getting sick.    

I wish you and your dad the very best.  It's going to be a rough road for a while.  A positive attitude, while difficult at first, can go a long way also.   

 

Sally

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