Patient Comments: Esophageal Cancer - Types

Question:

Do you or someone you know have adenocarcinoma or squamous cell carcinoma of the esophagus? Please share your story. Submit Your Comment

Comment from: izzyk, 55-64 Female (Patient) Published: August 01

I'm 61 years old. I received my biopsy results today; squamous cell carcinoma of mid-esophagus with lymph node involvement. I see the surgeon Tuesday. After turning 60, I started to feel old. I had a job change and was mostly sitting at a desk all day. My back was aching by the end of the day. I started taking ibuprofen every evening. Then by noon it was so painful I had to take ibuprofen. Now it has been Tylenol, but around the clock and it wakes me up. The real problem came over Memorial Day weekend and I had 2 little bites of steak. It took me 3 hours to get them down. I saw my doctor on June 15th, who ordered CTs, lab tests, barium swallow, PET scan and EGD where they performed the biopsy. I am scared because all the statistics are against me and I don't know what stage or the extent the lymph nodes are involved. I don't know how to tell my girls.

Comment from: Kittymom57, 55-64 Female (Caregiver) Published: September 06

A friend just turned 60, was never sick besides a cold his whole life. He got a sinus infection early in 2016. Despite visits to his family doctor and new medicines it did not clear up. Suddenly he had trouble swallowing but blew it off to swollen glands. After 3 weeks of not being able to keep any kind of food down he became dehydrated. He went to the doctor, but the doctor could not get an IV line in, he was so dehydrated. They had to send him to the emergency room. They were able to get one in and ended up admitting him. Tests came back negative, he still couldn't get food down. He has had horrible acid reflux for years and been on medicines. Finally the hospitalist suggested having a gastrointestinal doctor scope his throat thinking it may just have needed stretched. The doctor could not get the scope down because his throat was blocked by a huge, malignant tumor. Tissue was sent for biopsy but the doctor was sure it was malignant. He was immediately sent to see an oncologist. A PET scan was done. When the results came in it was stage 4 metastasized. He began chemotherapy and was told he had 18 months left. A port and a feeding tube were put in. He had a stent put in his esophagus but it slipped and it was not redone. He had a urinary tract infection and was urinating blood and was in the hospital. He was dehydrated 2 or 3 times. He went for a second opinion after one month. Because of an enzyme or gene he carried he was a candidate for a better kind of chemotherapy. The oncologist had good results with it. Another scan was done after 6 weeks and it had shrunk in his stomach. On July 27 he had to be taken back to hospital because he had been unable to keep anything in that went in the tube. Within a few days he had to be moved and put on monitors. Within 3 days he was in the ICU. On July 31 another scan was done and we were told it had exploded and spread and there was nothing else that could be done. He was unable to tolerate anything through the tube so he was started on IV nutrition. Fluid was drained from his abdomen twice that week. On Sunday afternoon they had to drain 5 liters of fluid out of his abdomen and 1 liter from his lung. On Monday late afternoon the doctors told us he probably only had 1 1/2 to 1 week. As the evening wore on more fluid built up and he went into respiratory failure.

Comment from: Diane clay, 55-64 Female (Caregiver) Published: November 25

My dad was diagnosed with stage 3 esophageal cancer the Easter of 2013. He had delayed seeing a doctor for almost 11 months as he was so afraid. His first symptoms were pain on swallowing, firstly bread and food getting stuck, then meat would get stuck, and then it turned to all food by the time we got him to hospital. He couldn't swallow his own saliva and had lost four stone in weight. I knew my dad had cancer and short of physically dragging him to a doctor I had tried everything to get him seen. At first they thought they could operate and dad had three cycles of chemotherapy, but first in hospital and tube fed for three weeks. He had a stent put in so he could eat soft food. In September they went in to operate but had seen that the tumor had spread rapidly attached to lung, diaphragm and wrapped round aorta and grown over top of first stent. We were told dad had a few months, then his oncologist offered a different type of chemotherapy to hold the tumor and prolong his life. While he was taking this chemotherapy they discovered dad's tumor was a HER2 tumor and Herceptin, a drug mainly for breast cancer would block the cancer. We were told National Health Service wouldn't fund Herceptin so we were looking into paying for it privately when my dad collapsed and passed away at home. That was exactly a year after his diagnosis. We didn't have a post mortem done. My dad was such a character, a kind heart, he made me laugh so much and I'll never get over losing him. I just wished he would have gone sooner but I can understand how bad his fear was. Esophageal cancer is an evil disease.

Comment from: Bill, 65-74 Male (Patient) Published: November 12

I was diagnosed with stage 3 cancer of the esophagus in January 2014. I was lucky as the cancer was in situ and had not spread to other areas. Initially I was put on a neo-SCOPE trial which involved firstly chemotherapy then chemotherapy and radiation therapy. It was very hard and I felt very ill at times. However I knew the cancer was shrinking as I was able to eat again. I underwent major surgery in July which was successful. I am still having pain after eating and have now been prescribed Creon tablets which have helped with the pain but unfortunately have not cured it altogether.

Comment from: Trish4124, 65-74 Male (Caregiver) Published: September 11

My husband coughed a lot and would tell me it was his sinuses. He went to the doctor and they told him to take antihistamines. He had a chest x-ray that showed his lungs were clear. When the Zyrtec didn't work, he went back to the doctor. Doctor said he probably had acid reflux and gave him Prilosec. The coughing spells got worse. I eventually realized he coughed and choked the most after the evening meal. The endoscopy showed a tumor so large in his esophagus that the doctor could not get the scope past it. There were no other symptoms of adenocarcinoma. He had radiation and chemotherapy and a second endoscopy was negative. However, before doing surgery, they did another PET scan that showed metastasis into his bones. He was diagnosed in January 2013 and died of a blood clot to his brain stem in June 2013. So heavy coughing especially after eating is a symptom that needs to be checked.

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Comment from: Fins76, 55-64 Male (Caregiver) Published: September 09

My father, who is 64, was diagnosed with stage 3 adenocarcinoma in July 2014. He immediately started chemotherapy and fortunately he hasn't had too many bad side effects from the chemotherapy and has continued working. After about 7 weeks of treatment, he had another PET scan and doctor has declared him cancer free but he still has to undergo surgery next month to remove the tumors at the bottom of the esophagus. Doctors are planning to remove the majority of his esophagus and re-shape his stomach to look like a sausage. Light chemotherapy to resume after the surgery. Doctors initially gave him a 50/50 chance. So far everything is looking good. He has maintained a positive attitude throughout this whole process which has helped our whole family to remain optimistic as we hope he makes a full recovery.

Comment from: Amal, 45-54 Male (Patient) Published: June 02

I was diagnosed with stage 3 cancer of the esophagus in January 2013. Doctor tried to operate but was not successful as it had spread more than what the scans and other reports indicated. Thereafter I had chemotherapy for one full year which was terrible. I was more dead than alive. In January this year 2014, I underwent more tests, PET scan and endoscopy, however the doctor was not convinced that the operation would be a success. From January of 2014 to date I decided that I will not take any form of medication simply to extend life at the expense of quality of life. I have pain in my stomach but have managed that pain and fatigue with no pain killers and still work a 5 and a half day week for 8 hours a day. I am exhausted when I reach home and rest a bit but back on my feet. To my fellow patients all that I can say is that one needs to be mentally strong to beat this and while you are alive, concentrate on living and not worry about dying and the suffering.

Comment from: Mother, 19-24 Male (Caregiver) Published: April 11

My 24 year old son passed away with cancer of the esophagus, could the new drug ZL105 have cured this cancer? He had been going to the doctors and hospital on many occasions with symptoms of heartburn and finding it difficult to eat food and constant pain in his back, but he was always told this was indigestion. My son was eventually given a scan and was told he was at stage 4. He passed away 7 weeks and 2 days later.

Comment from: Christabella, 55-64 Male (Caregiver) Published: March 14

My youngest brother had Barrett"s disease for years and had trouble swallowing. Local general physician said it was nothing but it continued. In May 2011 he was diagnosed with esophageal cancer. He had chemotherapy and then the huge operation in September. He had a few difficult months when they realized the exit from his stomach was up too high and couldn"t drain the contents properly. There was talk of his having another huge operation to fix that, but cancer came back and he died in November, 2012 not long after his 58th birthday. He was not a smoker and didn"t drink much.

Comment from: pjklew, 55-64 Male (Caregiver) Published: October 08

My husband was diagnosed on June 12, 2013 with stage IV adenocarcinoma of the esophagus. He had a 3-1/2 inch tumor at the bottom of the esophagus. It was a total shock as he was being treated for acid reflux. After six weeks of chemotherapy and radiation, the chemotherapy almost killed him, it has spread to the lymph nodes around the heart and aorta. It is also in the abdominal area and colon. We have decided that enough is enough! The side effects of the infusion chemotherapy and the six weeks of radiation were horrible. He is on hospice and is slowly gaining weight due to a feeding tube. We are going to enjoy and cherish the time we have left. We have been married 32 years and have no children, but we are thankful for awesome friends. Please get a second opinion and ask for ALL the side effects.

Comment from: Momjen, 45-54 Male (Caregiver) Published: March 26

My ex-husband has been diagnosed with esophagus cancer. I am not sure what stage or anything except that it"s spread to his liver. He is getting chemotherapy, has lost about 50 pounds, lost his hair and looks 80 (according to our son).

Comment from: Judy, 65-74 Female (Patient) Published: May 29

I was diagnosed with esophageal cancer in July of 2012 after not being able to eat much. I lost lots of weight and had a gastroscopy, which indicated I have carcinoma of the esophagus. From there, I had a CT scan and then a PET scan. I saw a surgeon, who told me it was also in my stomach and she couldn't operate, as it was too close. I had laparoscopic surgery and had a j-tube inserted so that I could have food. I also had nine weeks of chemotherapy. I went back to the surgeon, and she said the cancer had not shrunk. I had another PET scan and saw a radiation oncologist, who decided I would have five weeks of radiation and two weeks of double chemotherapy. I had another CT scan and again was told it hadn't shrunk. However, a couple of weeks later, I was able to start eating normally and now I no longer have tube feedings. I go back to the doctor next week for another CT scan – we'll see what he says.

Comment from: Kathy, 25-34 Male (Caregiver) Published: May 10

My son was a healthy 31-year-old, and then he started to lose weight in April of 2011. He wasn't sick – just had a little pressure when he chewed sometimes. I took him to the hospital and they diagnosed him with esophageal cancer. Doctor said he had Barrett's, and it was hereditary. The doctor said it had spread to the stomach, pancreas, and liver. They wanted to try chemo to slow it down. He didn't try it because he'd already lost too much weight. He died on October 8, 2011. They found out later that two of my brothers have it and they take prescription antacid. It's so sad that it was too late for my son to take it.

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