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Esophageal Cancer Surgery

lnichols
Posts: 1
Joined: Sep 2011

My brother has stage III esophageal cancer. He has done 28 days of radiation and 24 days of chemo. He got a staff infection and had to stop the chemo but is now doing an IV of antibodies every day. He has the next pet scan on the 29th which is about 3 weeks after the radiation. Is this normal?

After the pet scan he will know if he's a canidate for surgery. He told us today he didn't think he wanted the surgery due to quality of life. So, I'm trying to find information to keep him encouraged. He's very weak and can't hardly walk. He's sleeping 12-14 hours a day and they have him on the patch for pain. Apparently the patch is very strong and he is becoming very discouraged.

Can anyone share a positive story about Esophageal Cancer and how surgery will help. He is only 58 years old and doesn't need to give up now.

Thank you all and prayers to everyone!

Sincerely;

Lynn

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Lynn,
I was 65 yrs young when dx'd with T3N1MO squamous cell ca of esophagus. That was back in 7/09. I did the chemo and radiation and had to stop radiation a couple of days short due to neutropenic fever. Then I had a rest of a month + and had a PET/CT scan and had my esophagectomy, the long kind, Ivor Lewis, on 12/8/09. Had follow up chemo for 1 positive node and now almost 2 yrs later a survivor and living a relatively active life. Stage III is not a give up stage for sure, chemo and radiation is rough but many times it kills the tumor and bad nodes but your insurance is surgery. There is MIE which is minimally invasive and others here can tell you about that with a shorter recovery period. But any surgery is better than no surgery and 58 is young. We have many survivors out here and I am sure they will post too. It is hard and with strong pain killers might cloud your brothers thinking. Maybe he can wean back on the pain killers and make a rational decision. If he is going to have the surgery he needs good nutrition and should be trying to keep up some muscle strength. It is hard and he may need infusions of fluids that was one of my main problems and also nutrition. Please tell him not to give up. my thoughts and prayers will be with him.
Donna70

annalan
Posts: 149
Joined: Jul 2011

Hi Lynn
I don't write often but felt I must offer you and your brother words of encouragement. My husband was stage 3 EC, adenocarcinoma. He had the Ivor Lewis op in 2010, aged 67. We had never heard of the MIE until I started to read hear.

I'm not saying Alan didn't have a very tough time and there were many times when he was so weak that he spent 12/14 hours a day in bed as your brother is doing, but now his life is just great. He can't eat the large meals that he once did but he has more small meals and can eat just about anything.

There is life after EC as I'm sure many people will testify to here.

T3N1M0
Posting from England.

bingbing2009
Posts: 179
Joined: Feb 2011

Hello. I am a caregiver to Melinda, who was diagnosed in October 2009. Stage 3 (T3,N1,M0).

She began chemo and radiation within two weeks. It was difficult at first distinguishing between the symptoms of the treatment and the symptoms of the disease. She had problems with the chemo--hand-foot syndrome--and much nausea, but she made it through and had surgery in February 2010. She had the Ivor-Lewis and had 27 nodes removed (biopsy showed all were negative). This is life-altering surgery. Her heart rate was elevated, her blood sugar high, and she had breathing problems and suffered panic attacks. She passed her swallow test on the first attempt. She was released from the hospital after 10 days and came home a virtual invalid, with her stomach incision infected.

Thankfully, we are in a position where I was able to take an extended leave from work in order to nurse her. Her incision healed within two weeks, her heart rate gradually adjusted and her blood sigar returned to normal. She ate only small bites of peanut butter and cheese for several weeks, while using her feeding tube. She vomited several times a day, even when brushing her teeth. In late March/early April, she finally began eating better. Her first real meal was when she ate half of an extra-crispy breast from KFC. That was a special day.

At the time of her diagnosis, it was gently revealed to us that she would probably live less than two years. We refused to accept this and worked as a team throughout her ordeal. Since her surgery, she has had CT scans every six months, alternating with full body ultrasound every six months, so she is being checked every 3 months. She had an endoscopy this May and was okay. She still has her port and we go to the hospital every 6 weeks to have it flushed. Early in the process, we decided at some point she had to trust her oncologist and her surgeons and put her life in God's hands so she could focus on her battle without sweating the details. She let me do the micromanaging.

Today, Melinda outwardly appears to be a 'normal' woman. She looks great. She's energetic. She's returned to her career as a teacher. We go on vacations every summer. We have a 'date' every Saturday night and go out to eat. We have adjusted our eating habits and now we order one meal and share it. She lives a happy, productive post-surgery life.

Vaughn

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

What an inspiring and hopeful message. Keep up the positive vibes as they spread much hope. God Bless.........

Gerry

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Welcome.... What an odd word to use when saying hello to a newcomer at a cancer forum. You will find friends here, others in similar or even the same role you are now with your brother, others also searching for information, guidance, and hope. We have all found what we need *here*. So, Welcome, it is. :)

Prior to going into surgery, my husband's surgeon told him that he had already completed the roughest part of the treatment - the radiation & chemo. Surgery would be a breeze. THE surgery seems to be somewhere in the middle of the Ivor Lewis and the MIE - not quite as invasive as the IL, not anywhere near as laproscopic as the MIE. While not a "breeze", it isn't impossible. Nick was released just 7 days after completing THE surgery on Sept 8th. Nick is mobile, able to do for himself, and actually feeling quite good. Finding the balance of how much he can eat in a sitting is really his only challenge. Even though it as only been 8 days since surgery, he has never said that he regrets his choice of surgery. Matter of fact, I am certain that I have *never* seen any of the surgery candidates say they regret their choice of surgery.

Everyone has to make their own choices, but your brother must have quality knowledge and information in order to make good decisions. It is important for him to know that a Stage 3 diagnosis is *not* a death sentence.

Best of luck to you AND your brother!

Terry
Wife to Nick, age 48
dx T3N2M0, May 19, 2011
THE surgery, Sept 8, 2011

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

Hi Lynn,

There have been 5 men who had surgery within the past week, my husband included. I don't want to speak too much for the other guys, but from what their caregivers have shared I think they are doing pretty good. My husband had the Ivor Lewis procedure, as Terry said it is the most invasive of the surgeries. Right now he is sitting on our couch reading his favorite magazine...his surgery was on 9/6. He had stage IIB EC and went through chemo and radiation. While his side effects were not that bad, he was pretty wiped out by the end of radiation and for about 3 weeks after radiation. Like I said he had surgery on 9/6 and was released from the hospital on 9/14 and that is after having the most invasive surgery! He is taking it slow, but is starting to get around better. He went for a walk around the block today and made his own breakfast. Healing will take time and he knows that. But, no he isn't throwing up constantly or writhing in pain or any other terrible thing that I know you can read on the internet (because I have read those, I know its out there!). I just asked him if he regretted having surgery, his words were "I regret having cancer, not having the surgery to possibly cure the cancer"

The decision is your brothers, but you can see here that life is not over after surgery. I look up to the folks that are years out from surgery, it is what got my husband through the scary days before surgery. I echo what Terry stated, stage 3 EC is not a death sentence. Just look at William's posts he is a 9yr survivor of stage 3 EC.

Niki
Wife of Jeff T2N1M0
Ivor Lewis 9/6/11

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

EC is curable at stage III with surgery. That's how surgery can help.

As someone who is inoperable and incurable, I can tell you that my quality of life would probably be way better without cancer, even if it meant sleeping with a wedge pillow. My quality of life is not bad, but it's not great. I will be on chemo for the rest of my life or until I choose to stop. Your brother knows now what what being on chemo is like. Ask him how his current quality of life is. 58 is young. I'm 60 and I feel like I'm too young to give this up so soon. Your brother may not be thinking straight right now.

There are or were lots of folks on this forum who have had successful surgeries and no longer post because they've gone back to their lives, so don't take the lack of longtime survivors on this board as any indication of the success of surgery. Hopefully, William, the longest survivor who's still posing will set your brother straight.

BMGky
Posts: 666
Joined: May 2010

As my husband's oncologist said, "The treatment is brutal. Some can't complete it." He wasn't kidding. What your brother is going through is not for the faint-hearted. The surgery has its issues, but when you get there, you know you are on the road to recovery.

Now, it took my husband some 7 months to get his act together after surgery, and there were times he didn't think he was going to get there, but not only did he, he is going full steam ahead. Went to the State Fair and enjoyed polish sausages, boneless barbecued pork chops, ice cream, Morgan's fudge--he did better than I did. He is some 15 months post op and has had two NED PET scans. Yay!!

He's working full time. He represented one of his clients in a full blown two day trial as sole counsel and did a great job. He gets tired easily and must remember to eat properly. We just had pizza and wine for supper. Watching football. Can't get much better than that.

As I told a friend of mine, getting the chance to have the surgery is a privilege. There are so many on this board who would love to have a chance for curative care. I take it as a responsibility to do all that we can to survive in honor of those who can't have the opportunity.

Sure hope his PET scan says that surgery is a go. Mary

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