Post Esophagectomy

dlpal222
dlpal222 Member Posts: 3 Member
edited September 5 in Esophageal Cancer #1

My husband was diagnosed in February with early stage 1 esophageal cancer. He underwent a transhiatal esophagectomy on May 17th. Lymph nodes and tissue surrounding his esophagus were biopsied and all came back negative and he has been deemed cancer free. What I am dealing with now as his caregiver is his mental state. He did have some complications after surgery. He had a paralyzed vocal cord. He had pneumonia which required a second hospitalization and now is on a j-tube for night feedings. He is so depressed at the moment. Is there anyone out there who has gone through this and can let us know how life will be? He realizes how lucky he is. This is the 2nd time he has beat cancer (He had Hodskins Lymphoma 9 years ago) I am just finding myself feeling less than because I cannot seem to help him emotionally with all this. Any help would be appreciated!

Comments

  • kbelthoff
    kbelthoff Member Posts: 2 Member

    I feel exactly as you do! My boyfriend is home but is really depressed and wants to eat again and be out of pain. What can I do?


    Kelly in Massachusetts

  • paul61
    paul61 Member Posts: 1,388 Member

    It is very common to go through depression after a major surgery like an esophagectomy. When I had my surgery in 2009, the next six months after surgery were difficult. Learning to eat with my new digestive system, and dealing with a "j-tube" in the first month were all things that reminded me that I was vulnerable.

    But after some time for recovery and some minor lifestyle changes I was back to life as normal.

    Some people find an antidepressant is helpful during this time, or the ability to talk to other esophageal cancer survivors who have been through surgery and recovery. We have a twice weekly Zoom call for EC survivors. If you would like to join the call the specifics are:


  • dlpal222
    dlpal222 Member Posts: 3 Member

    I cannot thank you enough for this information. This may be exactly what my husband needs. There is no one where we live that has gone through this so he has nothing to go on. What also doesn't help is we live in a rural area that has very little in services of any kind when it comes to this. We are traveling 40 minutes for speech therapy, 2 hours to the surgeon...it has been tough. I will definitely pass this information on to him. Thank you, thank you, thank you!!

  • CaregiverCarey
    CaregiverCarey Member Posts: 1 *

    My husband was also diagnosed Stage 1-2 on Jan 29, 2023. Did Chemo/Radiation and then had surgery in June. recovery has been tough! He has the Jtube but he does not follow proper feed guidelines. He is unable to eat / drink much by mouth, so we are having to use adult electrolytes thru tube. Frustration for me is setting in now as everytime I ask him a question or follow up with his cares, he gets mad and yells at me. I understand this is delicate time but I am frustrated too! I want him to be around and he needs to do the stuff to stay with us!

  • kbelthoff
    kbelthoff Member Posts: 2 Member

    I agree! I want to give him autonomy but it’s frustrating standing by

  • Jpursley56
    Jpursley56 Member Posts: 4 Member

    I was diagnosed in February 2021 with stage3 Esophageal cancer. In June of 21 they did the esophagectomy with a pull thru. For those not familiar they remove the esophagus and staple your stomach into a tube to act as an esophagus , so you end up with a very small stomach, I think my dr said that I would have between 25 to 33 % of my original stomach left when they were done. I was in the hospital after the surgery for 8 days before they would let me go home. Two days after I got home and was getting used to all the changes, feeding tube etc. I developed the hiccups. They lasted 9 days straight with no let up, they put me on Thorazine and the hiccups stopped, unfortunately during the time the Dr could not get the hiccups stopped a staple tore loose and ripped a hole in my lung and right side bronchial tube. So back in for emergency surgery on my lung ,they told us it would take 2-3 months for me to heal from this surgery(My wife and I found out later that I was one of if not the only person who had survived that specific surgery to date) I was still dealing with an enormous amount of pain in my gut area. The stuck me back in the hospital and a couple of days later they did an ultra sound and discovered that my Gall Bladder was about to burst, so yep back to surgery. They did the scan in February of 2023 an the cancer was back, so I have been through another full round of Chemo and Radiation, completed that in May. The Scan in July showed success with the targeted cancer. YAY,

    Unfortunately they also found another new “Hot” spot so now I am in a holding pattern until the next scan at the end of August.

    Mentally speaking this has been a heck of a roller coaster ride so far, I have had to deal with some depression and some very real anger issues brought on by some of the medications. In one case I chewed out my wonderful wife and then verbally tore into my daughter, being the wonderful people they are they accepted my heartfelt apology. Some of these meds cause you to over react to almost any stimulation and the very weird thing is it is like you are standing outside yourself and can see yourself overreacting and you cannot stop yourself all you can do hope your friends and family will give you a break when your head is chemically up your backside.🤔 The bottom line is that if your reading this and while I am writing this we are both Above ground, and that means we have a shot at getting better, it may not be a great shot but it is a shot nonetheless!!!

  • dennycee
    dennycee Member Posts: 855 Member
    edited July 29 #8

    Wow. You’ve had a crazy time with this. I do relate to what you wrote about the meds making you overrreact and saying things. I learned to warn my family when I was about to start steroids for chemo or radiation. ‘Roid Rage is no joke. I love to hate steroids when I have to take them

    Talk to your hospital’s oncology social worker to learn what resources are available to you If there are some in person cancer support groups you will find yourself in the company of people who understand some of the pain and discomfort you experience

    It boggles my mind that you were the first to survive that surgery and I send hope that there are many non cancer firsts in your future.

  • Jpursley56
    Jpursley56 Member Posts: 4 Member

    Thanks and it does boggle the mind, I am just glad we found that out after the surgery and not before!

  • dlpal222
    dlpal222 Member Posts: 3 Member

    My husband is recently dealing with severe nausea. He has been off the feeding tube for over 2 weeks now and we cannot find a connection as to what is causing it or if it is normal? I guess we are struggling with what everything should feel like now that his stomach is stretched. He is still on his meds for acid. If anyone has any advice, it would be greatly appreciated. He also has the added complication of a paralyzed vocal cord which has made swallowing a little more challenging. He has days where things go well and days where it doesn't. Anyone out there dealing with that? Thanks everyone!

  • dennycee
    dennycee Member Posts: 855 Member

    There are a few options that I’m aware of.y sister has an issue with severe nausea from time to time. She cuts a thin slice of raw ginger and sucks on it like a piece of hard candy.

    If medical marijuana is legal where you live, consult a specialist at the dispensary to learn what tinctures it edible can help the nausea.

    There are a couple of synthetic THC medications that have been approved by the FDA and might be approved for coverage by your Medicare carrier. Talk to his doctor about a prescription for megace or megestrol.

  • jwkelly
    jwkelly Member Posts: 8 Member

    I have stage 3 esophageal cancer and have refused surgeries because they are not 1 and done miracle cures. I use a G tube and am happy to have it for life

  • Jpursley56
    Jpursley56 Member Posts: 4 Member

    New up date, I just got my latest PET scan back and The Big C has returned with a vengeance, I am now at stage 4 and have been moved to Palliative care prior to hospice. Oh Well I have had a great run and it is not over till it is over, I have a wonderful new Grandson Robert Montgomery Grant. So now it is make some memories time and get some **** in order They have suggested that I have between 6- 12 months, I believe that I can do better any way the “C” will know it was in a fight.

    If no body has told you they Love you today, I do

    RJP

  • jwkelly
    jwkelly Member Posts: 8 Member

    RJP, palliative is not hospice meaning not end of life.Take it day by day,but don't be a doomsayer. There are stage 4 survivors who live for years.

  • sharicopeland
    sharicopeland Member Posts: 3 Member

    Hello… My husband was dx on 6-3-22 with Stage III Gastro-Esophageal Cancer caused from acid reflux. He went through chemo/radiation and had surgery one year ago tomorrow. After the surgery the feeding tube hurt so bad the surgeon removed it. When eating regular food he became nauseous. He was finally diagnosed with Gastroparesis. Meaning your stomach is sort of paralyzed. A wonderful Gastroenterologist placed 200 units of Botox (yes, what women have placed in their face) between his small intestine and what is left of his stomach. It worked beautifully. The surgeon completed what is called a pylorectomy (?) at the time of the original surgery) to help food move from stomach but, it didn’t work as well as what he would have liked. My husband has gained all his weight back and is at the end of one year of receiving Immunotherapy (Opdivo). Scans have been good so far. That period of time was hard but, he got through it. Maybe the information about Gastroparesis and the Botox was of interest to you. Hoping your husband feels better real soon.

  • sharicopeland
    sharicopeland Member Posts: 3 Member

    See last comment please. I also see that your husband’s vocal chord(s) are paralyzed probably from a damaged Vegas nerve… My husband could only whisper fro the day of his surgery 9-8-22 to February 2023. He went to see an ENT physician who evaluated him and was able to place Rystelyn (another injectable women out in their face) into his vocal cords to bulk them up so the touch again and vibrate. It worked really well but, it is wearing off now and he has decided to have the outpatient procedure to permanently get his voice back. During this procedure the surgeon places a type of mesh beside each vocal cord to bring them closer together. He is thankful he has a voice now with the Rystelyn injections but, would like his voice to be more permanent and a little stronger. He doesn’t like the sound of his voice but, is grateful to have it back.!I think his voice sounds very similar to the voice he had befor the surgery & damage… Hope this information helps also.

  • jwkelly
    jwkelly Member Posts: 8 Member

    That's great,I occasionally am concerned about gastro paresis with my G tube, but so far coming up on a year and still good despite treatment stopping this past late June with no progress in tumor shrinkage

  • mardigras
    mardigras Member Posts: 215 Member

    Hello J,

    What a breath of fresh air you are.

    Congratulations on you new grandson. Great name!

    You are so right. Keep up the fight. Every day is precious and it sounds like you are special enough to deserve a real break.

    Tons of anti-oxidants. My husband took Tunos Indios which we can get here in the Canaries as they grow fresh. I juiced them in the morning. You can get it in powder form.

    In the afternoon I gave him Quark with fresh mango and a teaspoon of Lenoil which you can get from the Health food store. I added lots of Broccoli with creamy cheese sauces and watercress soup.

    If you like watercress, the vitamins and benefits are amazing. I make it with diced onion and small diced potatoes sweated in butter. I add fresh chicken stock ( I cook a fresh chicken in the slow cooker with no added liquid) the stock is jelly when it cools and you can freeze it. Then add milk too. Wash and chop the watercress and when the potatoes and onions are soft add it to the boiling pan for 5 minutes only. Take it off and throw in some ice cubes to cool it quickly and keep the vitamins in. ( you can also add fresh, frozen cooked broccoli) that helps to cool it too. Then blitz the soup in a blender. So healthy. So nice!

    Intensive Chemo did not touch Robs tumor, but it shrank from 82mm to 55mm. On this diet. The Canarians say it is a wonderful Cancer diet.

    Keep as well as you can my hopes and prayers are with you.

    Hugs Marci

  • Jpursley56
    Jpursley56 Member Posts: 4 Member

    Thanks So much Marci, I appreciate the support that your kind words give. I Have Not Given up Hope!!!!!!!!!!

    I just believe in Facing what I am facing, when you stare the devil in the eye it is best not to blink.