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need information and support

maribolt
Posts: 1
Joined: May 2001

My husband has recently been diagnosed with esophageal cancer (3-4 days ago). They are not sure yet if it is localized or has moved. I need to know everything I can. The Doctors are frightening us. We don't know if we should go to Mayo, or elsewhere, or if any of these new drugs will help. We appreciate any information you can send. Thanks. Mari Bolt

viastar
Posts: 2
Joined: Jul 2001

(((Hugs)))) for you both...We, my husband, was diagnosed with esophageal cancer in April. The fear that comes with it is knee buckling. You sound like you have the same questions that we had...keep in close touch with your doctors...it is hard to learn which questions to ask. I am sure you both will do well...Love and light.

janm
Posts: 1
Joined: Jul 2001

Dear Mari, In Jan. my husband was also diagnosed with EC. He was is Stage III so could not have surgury. We were also frightened and didn't know what to do. My husband opted to stay with his Dr. here and go through the usuall treatments of radiation and chemo. He finished his treatments in April and recently had a CAT Scan which revealed NO CANCER. Good luck and pray a lot! P.S. We know 3 others with simular results. Don't let the stastistics scare you! janm

johnrou
Posts: 6
Joined: Apr 2002

Janm, Glad to read your posting of July 17th. I assume 2001? My Husband has finished chemo and will have the last of 30 doses of radiation on Monday, May 13th, 2002. We are praying for the test to come back NO CANCER. What & how much chemo did your Husband have? Radiation? How is he feeling? Thank you for posting, it's encouraging. Jeannie

aajal
Posts: 3
Joined: May 2002

Date: May 27, 2002

Author: AJAL

The first thing I'm going to do is give you some positive information. I am an Esophageal Cancer survivor, my story is long, and here goes: In May of 2000 I noticed some foods were causing chest pain after I swallowed. A week later the pain was worse, lasted longer and mimicked a heart attack whenever I ate and swallowed. The pain and burning moved from the center of my chest, across both sides, under my arms, around my back, and felt like needles sticking in my spinal cord. I knew something was wrong, and I went to my M.D. Because I had smoked for 27 years, he ordered an upper G.I. with barium swallow. The results showed a "3 CM long mild to moderate narrowing of the esophagus with irregular mucosa with filling defects which appeared to be fixed and highly suspicious for esophageal neoplasm". An endoscopy by an esophageal gastroenterologist was recommended for further evaluation. The endoscopy was performed 07/05/00 and indicated "a friable excavated lesion at the mid esophagus from 24 to 25 cm. The lesion became nearly circumferential mucosally but the excavated portion was limited to about one-third of the circumference. T3, N1 esophageal neoplastic lesion of the mid esophagus. The lesion came very close to the aortic arch."
In other words I was inoperable according to the surgical oncologist. He referred me to a chemotherapist and a radiologist. He said the tumor was located in an area he didn't like to operate on because all the major blood vessels are there and because of the tumor's proximity to the heart. He said the tumor was at the uppermost location where surgery could even be considered. I asked if I was going to die...and he wouldn't answer! Instead, he said that I had an extremely serious and dangerous condition, and my treatment needed to start immediately. He cautioned me not to wait. The initial gameplan was to shrink the tumor with chemo and radiation and to then reassess whether surgery was possible. Let me interject: no doctor will definitively say you're going to be okay. Because of lawsuits and outrageous liability insurance rates, your "cheering up" must come from other areas.
I at first tried to tolerate an external "arm" port (I can't remember the medical name)for chemo, but it was too uncomfortable and kept bleeding; so I had a chemo port surgically inserted for greater comfort.
Chemo and radiation began the last week of July, 2000. At this point the chemotherapist became the "Lead Doctor" and coordinated with the other doctors. I am 5' 7" and weighed 129 pounds (3 pounds light) when I was diagnosed. I was told to gain weight; because, treatment requires extra calories. Well...I took that as carte blanc to eat cake, pie, ice cream, cookies and chocolate, and I gained 20 pounds!! I woke up that first morning, took a xanax and walked in smoke free with a bag of sugarless candy. It's amazing how easily one can quit smoking under certain conditions! I want you to know I did not get sick. Chemo has come a long way. The place looked like a hotel! My husband was permitted to stay with me in either the "lobby" or a private room. I took the private room on day 1, and I had a hamburger, fries, and a milkshake for lunch! The heart attack symptoms almost completely disappeared after my first week of treatment. Anti-nausea medicine and allergy medicine (Benadryl)if necessary were put in the I.V., and that did the trick for me. At one point my palms turned red and began to itch and break out (allergic reaction), but the nurses formed a circle around me, gave me intraveneous Benedryl, and the symptoms quickly disappeared. I was also given Benadryl for mild nausea or allergic reaction, and Zofran for more severe nausea. Additionally I was given Senokot-S to in case of constipation, and Gaviscon for diarrhea. In my 6 weeks of radiation and chemo, I took Benadryl once; because, I thought I MIGHT be getting a little nauseous, and Zofran once when I felt dizzy while lying down. My chemo consisted of 5-FU/FLUOROURACIL and CISPLATIN (which was administered around the clock, courtesy of a portable pump). The 5-FU caused my fingertips to peel (as though a mild acid had been poured on them); however, I was given Natural Care Gel (a radiation gel) to rub on them. The chemo also made my throat raw and sore; but, I gargled with peroxide, and it quickly went away. My radiation treatments (piece of cake) were given through my back, because, the tumor was too close to the heart for me to be radiated on my chest. I applied the gel to the radiated areas. I seem to recall treatments 5 days a week for 6 weeks, but I am not certain. If any of you need to know, I can easily find out for you. I needed plenty of sleep during treatment. I was sent for cat scans and an endoscopy to determine the effect on the tumor. The results were AMAZING! The tumor had disappeared and was not visible to the naked eye! My chemotherapist said the results were better than he ever hoped for. Silly me believed I was cured and no longer needed surgery.
The surgeon soon put an end to my naivete. He said I had the kind of cancer that likes to come back, and I now had a decision to make. I could either continue with more radiation and chemo without surgery OR...I was now a candidate for esophagectomy surgery (involving removal of the esophagus, pulling up of the stomach above my breasts, and resectioning one to the other in my neck). I was told the procedure was MAJOR surgery, had a 15% mortality rate, and no guaranty of success, but success seemed somewhat more favorable with surgery. I was also told the optimum "window" for proceeding is approximately 4-6 weeks after chemo and radiation end. Finally I was told if I decided not to have surgery and proceeded with more radiation and chemo, I could not later change my mind. My skin tissue would be impacted too much after the additional chemo and radiation. I quickly decided to proceed with surgery. The chemotherapist told me I would be receiving additional preventative radiation and chemo, beginning 1 month after surgery.
I went in for surgery 09/25/00. The medical term for the procedure is "Total extrathoracic esophagectomy with pyloromyotomy, retromediastinal gastric interposition and cervical esophagogastric anastomosis". The terminology alone was enough to freak me out! Anyhow...as indicated, I awoke in Intensive Care but was moved the next morning to a semi-private room. I had a 10 inch, stapled cut from navel to sternum, and a 6 inch incision on my neck. I also had a neck drain needing periodic suction. I was given self management pain medicine and fed intravaneously for 9 days. I was able to scoot up in bed the first day, and my progress surprised me. I sat in a chair on the first day, and had my catheter removed. I was not able to urinate for a while. I was given liquids to drink 10 days after surgery. The doctor said to take it easy. I didn't know what he meant until I took my first sip of soup and tried to swallow. The liquid stuck in my throat and wouldn't go down. I focused on swallowing, but the first sip went up my nose, and I choked. I realized my throat muscles were no longer working the same way, and I was able to take a few more swallows. I got a bad headache the moment I swallowed. I took much smaller swallows subsequently. About 24 hours after my meal, I had my first B.M. My staples were removed on my 10th day, and my neck drain was also removed. I was discharged 12 days after surgery.
I was pleasantly surprised at how well I tolerated the entire procedure. I was told that I was being given a month to heal, and preventive radiation and chemo would begin. Because of a recurring neck infection, treatment was delayed 1 month. Something bears mentioning: The doctors want you to be well when you receive chemo and radiation. You will not be given treatments if you have infection, temperature, or abnormal blood test results. Because of the recurring neck infection, I was sent for a cat scan of the neck. The results showed a cellular structure on the thyroid gland needing to be removed surgically; however, the surgeon said it would be addressed after the neck infection was gone. This finding was separate and had nothing to do with the esophageal cancer.
Chemotherapy began 11/00 and ended 01/01. The treatment consisted of TAXOL (Paclitaxel) and CARBOPLATIN (Paraplatin): one treatment every 3 weeks for a total of 4 treatments. The number of treatments was doubled because microscopic traces of squamous cell carcinoma were found on the tumor bed and in 1 of 2 microscopic esophageal lymph nodes. Radiation began 2 weeks after chemotherapy and ended 02/01. I believe I had 1 treatment every 3 weeks for a total of 4 treatments; however, I can't remember for sure. I was told that I would probably lose my hair with TAXOL. I asked a nurse if she had ever seen someone who had NOT lost their hair after taking TAXOL, and she thought for a moment and said..."NO"! My hair fell out after my 2nd treatment, but that's okay, because I had picked out a wig while I still had hair. During this time I felt a sore throat coming on, so I again gargled with peroxide, and it again quickly disappeared.
After my treatments I suddenly began to feel anxiety out of the "clear blue" one day. It kept getting worse, and the Xanax wasn't working. I spoke to my doctor, and he suggested that I see a psychiatrist. He said that psychiatrists keep up with the latest meds and they are best able to treat these symptoms. I promptly made an appointment, and the Psychiatrist prescribed Effexor XR. Effexor is not habit forming, and is very effective in treating both anxiety and depression. It does not make you sleepy, and you can still have an alcoholic beverage when taking it. I recognized how crucial it was to get these powerful feelings under control. I truly felt these emotions were detrimental to the healing process. I wanted my focus and energy to be on the staying well. In 06/01 I underwent surgery. and two thirds of my thyroid was removed. I was put on Synthroid to supplement thyroid function.
I have been cancer free since my treatment. For the first 2 years I get blood tests every 3 months, cat scans every six months, and an endoscopy every year. Because scar tissue forms after a resection, I am "stretched" whenever choking begins to occur (probably every 6 months). I can lie on my back and on my left side without getting reflux, if I have 2 pillows elevating my head. I have to be careful when eating meat and/or poultry (smaller bites and thorough chewing). I can now eat almost as much as I ate before surgery. Some changes however: Eat supper by 7 PM, if you must eat something after that, eat LOW fat item (like an apple), otherwise digestion starts a few hours later and HORRIBLE reflux burns what's left of your esophagus, throat, nostrils, and bronchial passages. Take Gaviscon for reflux. Adjustments become part of a routine. Finally one of the other ways I coped was to select my doctors with EXTREME care: then I focused on my wellness plan. I put myself in God's hands and my doctors'. My husband and friends have been wonderful and totally supportive. I have pampered myself A LOT! I have not driven myself crazy trying to second guess the doctors. My focus has been entirely on my wellness. I hope this VERY LONG summary has helped. My email is: aa.lazenby@prodigy.net if you have questions. Just include the word "Cancer" in your email, so I know not to "deep six" unsolicited letters. God Bless, believe in Him, take a deep, relaxing breath, and focus on your healing.
Thank you for allowing me to share my story.

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