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My husband diagnosed 4 weeks ago -Esophageal Cancer- HELP
Hello,
I am looking for advance and success stories to help us navigate this difficult journey. My husband, just 50, started this journey not feeling in August, dropped about 20 lbs and started throwing up while eating. He scheduled an endoscopy and colonoscopy and in the office they told us he had a bleeding mass in his 3rd quadrant. That day we got a CAT scan which revealed a spot on his liver, thank god it turned out to be a hemangioma (blood vessels) - the PET scan revealed it had not metastasized to his organs, so we are in a window of cure as the doctor stated. We are working with a team of doctors at a Pennsylvania a Hospital in the thoracic surgery, division. All the doctors seem wonderful, and have great reviews and accolades. He had a feeding tube placed last week, which landed us in the hospital for four days as they want it to monitor his feeds, and he had his port placement this week. To say the least we have been so scared and a roller coaster of emotions. My husband still hasn’t cried in front of me. I’m 44 years old and I’m scared shitless and I consider myself a super strong. This is definitely the hardest thing I/ we ever had to face. My husband was still eating soft food like mashed potatoes, soups, yogurt, smoothies, and pudding but yesterday he started throwing up while eating a smoothie so it’s been hard to get to the a lot at 2200 cal that the dietitian wants him to eat. Were using the feeding tube at 100 mL per hour. He gets a lot of cramping in his stomach after the feeds and we tried feeding at night but he’s uncomfortable on an incline. I can’t sleep, which is always had sleeping issues more over. He usually sleeps on his stomach and now can’t do to the port in the feeding tube. Last night he tried to take an Tylenol and it got stuck in his throat and threw up. We start chemotherapy on Friday of this week, and I’m scared that due to all the complications with getting him allotted calories already that this is going to fail. The plan is that he will be doing chemotherapy for two months to shrink the tumor and hopefully attack the lymph nodes that are lighting up on his pet scan if all goes well, he would move to radiation for 6 to 8 weeks targeted on his third quadrant of his esophagus, if that goes well, he would move to surgery after four weeks of rest. They prefaced the post up with about 12 weeks of recovery and about 1 to 2 weeks in the hospital. They placed a feeding tube preemptively because he had lost so much weight and they wanted to keep his caloric intake up and didn’t want to have to operate during the treatment which would altar in delay possible outcomes. The doctors didn’t tell us the stage of the cancer but they said it was aggressive and therefore they’re attacking it with an aggressive treatment and someways. I’m glad we don’t know the staging. We are so numb and feel like our lives have been ripped out from under her feet. I can’t stop crying uncontrollably I took leave from work to care for Joe and to deal with my own emotions and Joe has not been working since he found out. On top of the health stress. We also now have financial stress and worry. I’m just wondering with all of this what to expect. Although we are so scared and so worried I’m grasping desperately to Hope.
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Thank you very much. I struggled finding a way to send you a private message with my phone number, but was unsuccessful. If you can, could you please share your phone number with me?
#satsai
Hi, my landline is 727-545-4127. I'm in Florida where it is now 4:27 PM.
Don
Hi there,
I was diagnosed last April when my husband and I were going to Montana to look at property to buy for our retirement. I swallowed my morning vitamins and couldn't keep them down. I went to the doctor, and I was diagnosed with dysphasia (difficulty swallowing...ya think!). Anyway, within two weeks I had lost 20 pounds and was in the emergency room getting a feeding tube placed because I couldn't eat or drink anything.
I am a 71-year-old female in excellent health (I don't drink or smoke) who may have contracted cancer because I am a stained glass artist and I work with toxic chemicals. Getting a cancer diagnosis is the scariest part of the process and I was lucky to have great support. I am an art teacher and have strong family-like support at my school. Having that support will really help you navigate the dark canyons of fear.
I went through 6 weeks of chemotherapy with Paclitaxel (Taxol, Onxal) and Carboplatin (Paraplatin) once a week and targeted daily radiation treatments 5 days a week. My cancer was located in the mid-esophagus right below the rib cage. It was a very fast-growing aggressive squamous cell carcinoma. I was told this was the best kind of cancer if you have to have it.
After a PET scan, it was determined that there was a still small residual area of active cancer, and my doctors recommended strongly that I get an esophagectomy surgery to remove the tumor. My cancer was still confined to the tumor with one suspicious lymph node. I really did not want to have the surgery because it is a difficult surgery right up there with open heart surgery. But it was clearly outlined to me that I would not live without it.
You must prepare for the possibility of surgery right now at the onset of your treatment because there is a lot of preparation and meeting with your potential surgeon before you can even be considered for surgery. Also, if you need surgery believe me you do not want to wait.
The main thing with cancer is to get your treatment going and if you do need surgery to not have to wait. The longer you wait the more cancer has a chance to grow. Also, after chemo and radiation, my tumor began to grow again and I was beginning to have difficulty swallowing again.
We learned that the Mayo Clinic in Rochester, Minnesota was the very best place for this type of surgery because of the quality of doctors, the number of surgeries of this type done each year (over 300/ year) and the technological advances of the surgery (I had a robotic assist to during my surgery for my doctor to stitch me up). We had to take 3 trips to Rochester to get testing done to determine eligibility and counseling for surgery. Fortunately, I was healthy enough to qualify, and because I was still working I had really good insurance (Blue Cross of Idaho), and I was able to afford the travel. But do your homework, and be sure you find a hospital that does a lot of the type of surgery you need and check their success record. It will pay off in the end.
I was in surgery for 9 hours as they had to trim some of the scarring from my lungs due to the radiation treatment. Also, my trachea had fused to my esophagus and they needed to carefully cut the tumor away without damaging my trachea. I had the Ivor-Lewis procedure and recovery at St. Mary’s Hospital (also Mayo Clinic) was 8 days. The doctors at Mayo were incredible and I had one of the best thoracic doctors known today to do my surgery (Dr. Luis Tapias-Vargas). The hospital staff was amazing and my recovery was easy and pain-free. I loved that they brought in a masseuse to give me a back massage the day after my surgery, and they also did a sleep study on me before I went home to make sure I was getting enough oxygen. The nutritionist and the physical therapists were helpful and still kept in contact with me to check my progress.
I did have to learn how to eat again which was a four-week process before I could eat solid food normally again. The weirdest thing was after four months of not eating, I didn’t want to eat. It was not fun drinking broth and eating only yogurt, jello, or pudding. It took a while to get back in the groove to even wanting to eat, but it did happen. I eat better now than I ever ate before and I had a pretty good diet before.
The best news was when I returned to Mayo Clinic for my post-op PET scan it was determined that I am cancer-free. Yaay!!! Now my greatest challenge with my new-fangled eating system is to maintain my weight. I know it is hard for people to sympathize with someone who has to eat all the time (or try to anyway), but it is a challenge. I can maintain my weight, but haven’t figured out how to gain weight yet. The good news is that my surgery was on Oct. 4th last year and I have almost completely recovered. My normal high-energy level has returned and I feel great! I go back to work at the end of this month and I can hardly wait. There is life after cancer, and I know I would not be alive if this had happened to me thirty years ago. I am incredibly grateful!
That’s my story, and if you have any questions I am happy to answer them. I just want to give you hope as I was very scared at the onset of my diagnosis and I know there is potential for cure where in the past that was not the case. Thank God we live in the modern age.
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7 ReactionsHi there,
My heart goes out to you as my journey was very similar to what you are going through now. I had a feeding tube for 4 months before it was determined that the chemo and radiation had not dissolved the cancer completely in the tumor in my esophagus. I was recommended for the Ivor-Lewis robotic assist non-invasive surgery and had surgery on Oct. 4th at St. Mary's Hospital in Rochester, MN.
I was in surgery for 9 hours as they had to trim some of the scarring from my lungs due to the radiation treatment. Also, my trachea had fused to my esophagus because of radiation treatments and they needed to carefully cut the tumor away without damaging my trachea. I had the Ivor-Lewis procedure and recovery at St. Mary’s Hospital ( Mayo Clinic) was 8 days. The doctors at Mayo were incredible and I had one of the best thoracic doctors known today to do my surgery (Dr. Luis Tapias-Vargas). The hospital staff was amazing and my recovery was easy and almost pain-free. I loved that they brought in a masseuse to give me a back massage the day after my surgery, and they also did a sleep study on me before I went home to make sure I was getting enough oxygen. The nutritionist and the physical therapists were helpful and still kept in contact with me to check my progress.
I did have to learn how to eat again which was a four-week process before I could eat solid food normally again. The weirdest thing was after four months of not eating, I didn’t want to eat. It was not fun drinking broth and eating only yogurt, jello, or pudding. It took a while to get back in the groove to even wanting to eat, but it did happen. I eat better now than I ever ate before and I had a pretty good diet before.
The best news was when I returned to Mayo Clinic for my post-op PET scan it was determined that I am cancer-free. Yaay!!! Now my greatest challenge with my new-fangled eating system is to maintain my weight. I know it is hard for people to sympathize with someone who has to eat all the time (or try to anyway), but it is a challenge. I can maintain my weight, but haven’t figured out how to gain weight yet. The good news is that I have almost completely recovered. My normal high-energy level has returned and I feel great! I go back to work at the end of this month and I can hardly wait. There is life after cancer, and I know I would not be alive if this had happened to me thirty years ago. I am incredibly grateful!
That’s my story, and if you have any questions I am happy to answer them. I just want to give you hope as I was very scared at the onset of my diagnosis and I know there is potential for cure where in the past that was not the case. Thank God we live in the modern age.
Prayers for you and your husband. It is a long and arduous journey, but there is hope and healing in your future. God bless!
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3 ReactionsI have Tissue Damage In my Throat. From the Radiation. That's a given. But actually further out from my last Treatment Jan 2013, hard and hard to swallow and not get choked. God Bless your sweet Family. I will pray for ya'll
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2 ReactionsLove your story and detail... but understand, you have a long long ways to go yet. Keep shoving in your food and drink... challenge your body to relearn digestion... and it will slowly rewire itself to figure things out... how to get those communication signals going that are no longer there since the vagus nerves have been severed. I saw continued digestive improvement in my second year post-op. But changes keep coming... eating more, eating whatever you like, pooping better, sleeping better, etc. But it is crazy slooooow! Keep at it. I'm in my 4th year post-op now. During my journey I went from 220 lbs to 160 lbs. After 18 months I finally settled in at 195 lbs... have been there ever since.
Gary
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3 ReactionsThanks 😊 It's good to know that there is potential for weight gain as I progress through this after surgery journey. I am thoroughly enjoying eating again though! I'm sure I will get there!
Hi,
You mentioned financial concerns, look into Social Security Disability Income (SSDI) for Joe. After working through radiation, chemo and surgery my employer decided they did not need cancer boy anymore. I needed an alternative source of income for my family. SSDI is difficult to get awarded. I went through a law firm to help get mine expedited.
Good Luck,
Tom
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3 ReactionsEnsure plus is really good for weight gain
@bflylady1, I'd like to add my welcome to you and thank you for sharing your story and offers to help support others who are newly diagnosed. It helps so much to hear from others who have walked the path before.
You might also have helpful info and experience to add to this discussion:
- A New Direction: Transthoracic esophagectomy (Ivor Lewis)
https://connect.mayoclinic.org/discussion/a-new-direction/
With respect to eating and gaining weight after surgery, you may be interested in these discussions:
- Eating and Esophageal Cancer: Anorexia 18 months after Ivor Lewis
https://connect.mayoclinic.org/discussion/anorexia-18-months-after-ivan-lewis/
- Nutrition and Cancer: Getting protein in my diet
https://connect.mayoclinic.org/discussion/nutrition/
- 365 days later after surgery to remove esophageal cancer at Mayo
https://connect.mayoclinic.org/discussion/365-days-later/