CancerCompass message board discussion started by ChrissyN on 3/1/2008 http://www.cancercompass.com/message-board/message/all,21521,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi folks,I had my second endoscope on the 12th Feb., to take a second biopsy which confirmed the dx of Esophageal  Adenocarcinoma. The next day, I turned 54! happy birthday. I am a very upbeat and positive person, due to my husband being a stage 4 kidney cancer survivor ... 12 years since first dx at stage 3. However, this dx came as a real shock, as I do not have a history of reflux, don;t smoke, don't drink ... sound boring really!I have had CTs and  it appears, thankfully, that there is no spread. I see the surgeon/team member next Weds. ... the 5th March ... so I will  then be able to post more. Cheers from Queensland, Australia,Chrissy  ChrissyN Sat, 01 Mar 2008 00:00:00 GMT  On 3/1/2008 ChrissyN wrote:Hi folks,I had my second endoscope on the 12th Feb., to take a second biopsy which confirmed the dx of Esophageal  Adenocarcinoma. The next day, I turned 54! happy birthday. I am a very upbeat and positive person, due to my husband being a stage 4 kidney cancer survivor ... 12 years since first dx at stage 3. However, this dx came as a real shock, as I do not have a history of reflux, don;t smoke, don't drink ... sound boring really!I have had CTs and  it appears, thankfully, that there is no spread. I see the surgeon/team member next Weds. ... the 5th March ... so I will  then be able to post more. Cheers from Queensland, Australia,Chrissy Chrissy,I'm sorry to hear that you have reason to post here at all. I, too, was 54 when diagnosed with stage 1 EC, in 2005. I had an esophagogastrectomy (Ivor-Lewis) that July and am doing very well. There are lots of people here that can give support and advice. Keep us posted. I hope everything goes as well as possible for you from this point.Good Luck and KEEP MOVING,Steve  Cyclist Sat, 01 Mar 2008 00:00:00 GMT  On 3/1/2008 Cyclist wrote: On 3/1/2008 ChrissyN wrote:Hi folks,I had my second endoscope on the 12th Feb., to take a second biopsy which confirmed the dx of Esophageal  Adenocarcinoma. The next day, I turned 54! happy birthday. I am a very upbeat and positive person, due to my husband being a stage 4 kidney cancer survivor ... 12 years since first dx at stage 3. However, this dx came as a real shock, as I do not have a history of reflux, don;t smoke, don't drink ... sound boring really!I have had CTs and  it appears, thankfully, that there is no spread. I see the surgeon/team member next Weds. ... the 5th March ... so I will  then be able to post more. Cheers from Queensland, Australia,Chrissy Chrissy,I'm sorry to hear that you have reason to post here at all. I, too, was 54 when diagnosed with stage 1 EC, in 2005. I had an esophagogastrectomy (Ivor-Lewis) that July and am doing very well. There are lots of people here that can give support and advice. Keep us posted. I hope everything goes as well as possible for you from this point.Good Luck and KEEP MOVING,SteveI just returned from Pittsburgh UPMC, my 5th year examination and I am still (Stage T3N1M0) cancer free.Thanks to the Lord for his leadership and the wisdom he has given my Drs.I was 71 on Feb 12th still feeling like I am 40 and eating anything I want and I take no medications not even a aspirin or vitamin. My health is excellent as of today. I hope that u will enjoy the same success as I have had. (3-1-2008)                                 Below is my journey with EC. William66 10-17-2003  10:46 PM EDT Esophageal Cancer [reply] In the fall of 2002, I began to have hiccups each time I started to eat anything. For a minute or so I just had to wait until the hiccups stopped. Then I could eat normally. I didn't have any difficulty swallowing at first. After a while, my wife said, "this is crazy--something's wrong with you--nobody gets the hiccups this often." So we went to see my trusted physician, an internist in Norfolk, Va. He sent me to a Gastroenterologist. There I had an Upper GI Series and an Endoscopy. A small polyp was removed which subsequently proved to be malignant. Subsequent tests revealed Esophageal Cancer -- Stage 3. My tumor was at the lower end of the esophagus where it is joined to the stomach. Of course, we were devastated when we first learned of the diagnosis. But we are both born-again Christians, and knew that this was all in God's hands. We asked everyone for their prayers and relied on our doctor to refer us to the best place for treatment. We had all the tests available. We searched the WEB and found tons of good information on esophageal cancer. We had never even heard of it before. We were really "torn" over the decision to have chemo or not. We had heard the usual horror stories. Our Oncologist, Dr. Paul Conkling, said there were no definitive studies to say that "before" or "after" treatment would give the best results. He explained that if it were Stage 1, it would be a simple matter of removing it surgically right away without thought to extensive chemo. However, at Stage 3, his best advice would be to have the treatment BEFORE. He further explained that, if once the operation were performed and the cancer were found to be more invasive than previously thought, I would be in such a weakened condition from the operation itself, that the chemo treatments would have to be delayed. So after much prayer and anxiety, I decided to go for the chemo/radiation treatments prior to the operation. I wore a "fanny pack" with a 96-hr. continual infusion of chemo. I had a chemo treatment alone for the first week--then the 2nd week I began radiation treatments. I had another 96-hr. infusion the 3rd week which ran concurrently with radiation. I had 5 weeks of radiation. Doctors at Norfolk General said normally they would give 6 weeks of radiation, but since radiation itself could damage other organs, they preferred to stop at the 5th week. I had 5 treatments a week--Mon. thru Fri. I had a "Bard Port" surgically implanted in my chest just prior to starting chemo. This is the more "radical" option as opposed to visiting the office daily for an infusion. A small line is inserted in the "port" and the chemo feeds into my vein automatically. It was not a bulky item or difficult to tolerate. I would do it again as opposed to the "daily visit". Within 2 hours of starting my first chemo treatment, I started to run a fever that lasted for 3 days. (Got up to 103 degrees.) My taste changed. Foods I loved before I didn't like anymore. But as far as side effects went, I had minimal side effects. (I still have the Bard Port in my chest.) Although I could have gone to any big-name hospital since I had good insurance, we opted to be treated here at home. The big factor in staying here in Norfolk--4 grandchildren ranging in age from 9 to 18. So all was set to go for an operation here in Norfolk on May 15th of this year. We had the best Thoracic Surgeon we could have here. The doctors explained that there was a "window of time" after the chemo/radiation that would give the best chances for maximum effect for the chemo to do its work. So, I completed treatments in late March. We were prepared to undergo an operation which would involve 3 massive incisions in order to remove the entire esophagus. (I sometimes interchange the word "we" for "I" since my wife has gone through this whole ordeal every step of the way.) Incidentally, at the end of chemo/radiation treatments, a repeat PetScan was performed and revealed "NO VISIBLE TUMOR". However, we had already been told that even if it appeared to be "eliminated" that the esophagus should still be removed. Other than the hiccups, I had no other symptoms except occasional heartburn which I credited to eating "hot spicy foods". TUMS usually made the heartburn disappear. So, we were facing a major operation with a 10 to 12 hr. operation/5 days in ICU/10 to 12 days in hospital/3 mos. to begin to feel normal again. The doctor explained that it was one of the worst operations one could have. With 10 to 12 hours in the "OR" many possibilities existed for complications. Both our Thoracic Surgeon and Oncologist explained everything in detail and answered every question. They spent as much time as we required each time we had a visit. God intervened on May 8th 2003 and changed our plans. My sister sent me an article about a new type of surgical procedure. She discovered it while searching the "cancer sites" on the Internet. Thank God for the Internet. My first thought was--"I'm not going anywhere." My wife said--"Well, we're checking it out." It happened that a Dr. James Luketich from the University of Pittsburg was holding a conference and announcing some great results with a new type of operation he had pioneered. It is known as "Minimally Invasive Esophagectomy". In this procedure, there are 7 small bandaid cuts as opposed to 3 major incisions. The esophagus is removed and the stomach is stretched up to the neck. Laparoscopic tools are used to perform the procedure. Operation and recovery times were greatly reduced. Mortality rates greatly improved. In short, we called the offices of Dr. Luketich in Pittsburgh. They were willing to see me on a "second opinion" basis. At first I was told they wouldn't be able to see me for 3 weeks. I said, "Well, I'm scheduled for surgery in a week. They then said, "bring all your films, reports, etc. and we'll see you next week. So within 5 days I was on my way to Pittsburgh. They explained that I would have to be thoroughly examined to see if I were a "good candidate" for this operation. As God would have it, I was a "good candidate". Another acquaintance of mine consulted with Dr. Luketich. Unfortunately this person's cancer had spread to his brain and his liver and Dr. Luketich advised against the operation since the cancer had spread beyond the esophagus. A lot of your prognosis depends upon your state of health when you undergo the operation. Needless to say, chances for complete success are much greater if there are no other existent medical conditions. As I said earlier, I was in great health, except for the hiccups. So surgery was scheduled for Saturday, May 17th. 2003 We stayed at one of 3 Family Houses, where you have all the conveniences of home. Family members may stay there at a fee of $30 to $45 a night depending upon which home you are assigned. Reservations are on a first-come first-serve basis. There isn't always a vacancy. But as God would have it, we got a room the day we needed it. We parked our car and never had to worry about how to find our way around. A shuttle bus (free of charge) took us to every place we needed to go. After hours, in an emergency, a security service would come to the "home" and take you to see a doctor. There are no doctors at the family house. But the family houses are in close proximity to the medical facilities. Our every need was met. So on May 17th, the operation was performed. It took 7 hours total. (Absolutely no complications.) (Operation time varies with the individual--a gentleman after me took only 4 hrs.) I was in ICU for only one day (as opposed to 5 for the traditional procedure) and in the hospital a total of 5 days (as opposed to 10 or 12). I was on a feeding tube when I returned to the "Family House" for a short time. The doctors wanted the newly-sutured area to be free of anything for better healing. Within a week, we were sightseeing in Pittsburgh. Senior citizens may ride the busses for free. We had complimentary tickets to a concert with the Pittsburgh Symphony, free admission to a Pittsburgh Pirates Baseball game, personalized tour of the Carnegie Museum. Since Dr. Luketich advised us that most complications manifested themselves in the first 2 or 3 weeks, he would recommend we plan on staying a while. So we worked in a much-needed vacation after the operation. As it turned out, school was almost out when we left for Pittsburgh and arrangements were made for the grandchildren's care during our absence. I have been back for dilations 3 times. It was explained that it could take up to 6 mos. for the sutured area to stabilize. It seems that the opening narrows as the healing process is taking place. Scar tissue forms making it more difficult to swallow. Each time I felt myself "coughing" excessively I went back to Dr. Luketich. Each time the passage had narrowed considerably. Unless difficulties arise, my next visit will be in the Spring. Never have I been treated more royally than at the University of Pittsburgh Presbyterian Hospital. The doctors and nurses were attentive to my every need. So, if anyone out there is uncertain of where to go for treatment for Esophageal Cancer, I cannot recommend a better place. Dr. Luketich has an expert team of doctors who work with him. His staff are the most efficient I have ever encountered. A new state-of-the-art Cancer center has just opened there called the HILLMAN CANCER CENTER. It's fantastic. There's no waiting a week after you have tests performed to anxiously await a reply from the doctor. I cannot say enough good things about the medical facilities there. Information I found on the Internet answered every question I never thought to ask. Just key in "Cancer" and up comes a wealth of information you wish you never had to know! But since we had already done an exhaustive search, by the first of May, we were no longer doing research. We were long past that stage. Had it not been for my sister in Florida "providentially" coming up with this notice about a conference on a new type of surgery, only God knows if I would be alive today. There have been 2 of my friends operated on here in Norfolk who did not survive the operation. Also, according to statistics only a small percentage of people survive 5 years once they have been operated on for Stage 3 Esophageal Cancer. Presently, I feel great although I've lost 60#. I am 6 ft. and weighed 267 when I began. I now weight 207. I have difficulty especially eating chicken. I'm used to eating fast and now must take much smaller amounts at one sitting. Dr. Luketich has provided me with a card which states that due to surgery, I am unable to eat adult-sized meals. "Please honor with a petite (small portion) serving." It is on their card and has been signed by him. We hesitated to go out to eat prior to this. It was too costly to "waste" most of my food. I seem to want a lot of food that is "tangy" as with vinegar. Some things I no longer like. We just had a visit from the tropical lady "Isabel". It devastated our yard. I have spent several days doing cleanup, hauling trees to the front of the house, cutting firewood, mowing the lawn, etc. I have the same energy level now as I had before the operation and feel good as "new". I needed to lose some weight but had I been "skinny", I would not have survived the operation as well. Lastly, in a nutshell, if you're uncertain as to where to go for help, I wholeheartedly recommend Dr. James Luketich at the University of Pittsburgh Medical Center, known as UPMC. The address: UPMC Presbyterian, 200 Lothrop Street, Pittsburgh, PA 15213 Phone 412-647-7555. My best advice, put your trust in God, ask for HIS guidance, get your house in order and be prepared to accept what comes. My story thusfar has been nothing short of miraculous. I don't use the word "lucky". I give all the credit to God through the Lord Jesus Christ. Yes, there are days when I'm melancholy and reflect on "what might have been", but I'm alive and enjoying each new day. God has seen fit to "extend" my days and enjoy my family. So, I try not to look back but only forward. I've gained a new perspective on sickness and sympathy for all who are sick. There are a lot of "hurting" people with diseases as bad as I have had. My life has been "enriched" in that respect. I have a new capacity for empathy. It may be that I can offer a ray of hope to some other suffering soul. I hope so. There are no 100-percent success hospitals anywhere. As we all know, no two operations achieve identical results. Not all of Dr. Luketich's patients survive the operation either. But chances are greatly improved with his new method. You can read about him on the Internet. Key in his name or the UPMC site. He has excellent credentials. I thank God some Mother chose not to "abort" him. He has been used to give many people hope. Dr. Luketich is holding seminars and training sessions to teach other physicians how to perform this new type of surgery. The old way seems "barbaric" by comparison. Unfortunately, there are no doctors in our area that are trained to do this type of surgery at present. I can't thank God enough for letting me learn about Dr. Luketich. It has given me a new "lease on life". My wife and I have had a variety of emotions running the whole range from tears of sadness to tears of joy and everything in between. It's an emotional "roller coaster". So be prepared for this type of ride! But God says in Jeremiah 33:3, "Call unto me and I answer thee and show you great and mighty things which thou knowest not." KJV This site contains many sad stories. My prayer would be that all people would fare as well as I have thusfar. I can say, "I feel your pain" (A familiar phrase)and really mean it. I hope that many many physicians will avail themselves of the latest technology and learn from Dr. Luketich. Although I haven't personally chatted with anyone on this site before, my prayer is that someone will find something in this long "chat" that gives them hope and direction. You've heard the expression, "there are no athiests in a foxhole"--well I dare say there are few athiests once they've been diagnosed with cancer. GOD IS REAL and PRAYER CHANGES THINGS. All praise goes to HIM. He has led and gone with me every step of the way. Without HIM, life would be hopeless. So, if anyone is interested to know more about my operation, my GOD or my recovery process, I'll be happy to talk with you. At present, I am "cancer free" and eating better every day. I'm on no medication and do not require any post-of chemo or radiation. Incidentally, we toured Pennsylvania prior to coming home. I did most of the driving. PA is a beautiful state. "Billy Ml" - Esophageal Cancer SURVIVOR Virginia Beach, Virginia Billy M--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--    WILLIAM66 Sat, 01 Mar 2008 00:00:00 GMT My dad was diagnosed in December with Stage III EC.  Ct scans PET scans and an Ultra sound with biopsey showed the EC had not spread.  Dad is 83. very active, before surgery we would swim 2 to 3 days a week. Dad had a Transhiatal esophagectomy on February 12th, he was in SICU the rest of the 12th, 13 and the 14th he was then transfered to a step down ICU.  During the SICU they had dad sitting in a chair and walking starting late in the day on the 13th.  Dad is home with us now and he is doing very well.  We are all learning the after care process and developing new eating habits.  I think Dad's success is due to a deep desire to continue living, being active prior to surgery, having a real fighters attitude and staying as positive as possible and having great great doctors and nurses helping him.  I continue to remind him that he has to fight to get better in his recovery process and to keep moving.  Everything that our family has learned about EC has come from great people that share on this site.  Without the individuals that have responded to my messages I would not have been able to help my father.  You and your family are in our prayers.Steve Barkley Sat, 01 Mar 2008 00:00:00 GMT  Hi I'm from Sydney! Read my mums story below: Btw, sorry to hear about ur Dx...this site will help u alot along the way! Hi guys! Just an update on my mum's condition since diagnosis in September 2007 See story below for more detials:Since diagnosis she's had 6 sessions of chemotherapy. CT scan shows decrease in size of esophagus tumour BUT one of the several cysts in her liver has doubled in size, so doctors have put her on anoth 6 weeks of chemo with breaks in between. I need some advice, she is having so much pain on her liver side of her stomach. There is a small lump almost like a pimple and also another lump that you can feel on her upper abdomen. Its very painful for her and we dont know how to get rid of the pain. The pain meds are not working. I'm so so worried for her. Is anyone experiencing the same thing? Your advice would be very much appreciated.  sydoz Subject: New to Esophagel Cancer------------------------Date: 09/09/2007Hi All, My mum (aged 59) has had reflux and chest pains over the past few months and for about 1.5 years she has been burping and taking antacids after eating. She has only recently had a biopsy, endoscopy, CT scans, ultrasounds, and blood tests. She was diagnosed with a MODERATELY DIFFERENTIATED ADENOCARCINOMA found at the bottom of her esophagus, and her liver scan found a cyst (bubble) also. We are still waiting to have a PET scan and endo-ultrasound of the cyst next week. Her specialist spoke about the consequences if we do not do anything to cure the cyst found in her esophagus, and mentioned chemo/radiotherapy and surgery. For now, we still do not know what stage her cancer is at.  We are all really worried about what will happen from now on end. Could someone shed some light on what to expect?  Many thanks!Sydoz... sydoz Sun, 02 Mar 2008 00:00:00 GMT Hi friends, I had my appointment at Nambour hospital with the surgeon with regards to my esophageal cancer - signet ring. Thought that I'd see a team member this time around and then have to come back to go back to see him. As it is a teaching hospital of the University of Queensland, I was first seen by a med student, who took my history and then she was joined by an intern and the surgeon. He was very good and when I explained that I needed to know the good, bad and ugly, and that I was well versed in "cancer", he was very up-front. Explained that he wanted to do another endoscope himself to see exactly where the beast is (my gastroenterologist said just inside the stomach), so that he can be sure as to what procedure to do. If it's just inside, he will take the top of stomach (about 1/3) and about 1/2 the esophagus. If it's right inside the stomach, then I will lose the whole esophagus, the stomach, the duodenum and all will be replace with bowel. Both ops have their pluses and negatives. So he there and then booked me for the endoscope ... next Thursday, the 13th ... keeping me in overnight so that he can talk to me fresh in the morning and let me know the verdict. So then spent the rest of the day at pre-admission, where I "almost" felt guilty, as they pushed me in front of everybody at all stages. He said that he would look at surgery about 2 weeks after the endoscope. Have literally just got home (the hospital is about 1 hour away) and there is a personal message from him to let me know that I am provisionally booked in for surgery on the 18th! Thank heavens for our health system.  Now we have to try to get Dad into care ASAP and the surgeon has said that if we are having problems, to contact them and they will help out. So, live sucks at present, but at least the ball is rolling and rolling quickly. Jeff sees his Onc tomorrow for his 6 monthly review. Hugs,Chrissywww.maryboroughanimalrefuge.com  (admin)www.akcos.org   (admin) http://akcos.proboards60.com/index.cgi ChrissyN Wed, 05 Mar 2008 00:00:00 GMT Hi,I'm Pat. My signs and symtoms for bile duct cancer was exactly as mentioned at this website.  But because my liver cells were okay, I was not officially diagnosed with Klatskin tumor.  But MRCP's records, strongly considered my recurrent jaundice attacks to be so.  Anyway I want to share with anyone here interested, what I had on that kept me going.  I'm due for surgery end March, possibly earlier, cos the Prof has an examination then.  But please do reply me.  I feel good even though I'm so sick. and that needs to be shared.  patktkay Wed, 05 Mar 2008 00:00:00 GMT Well, I am on weekend leave! I went into hospital Thursday so that the surgeon could do his own endoscope to be sure that he wouldn't find any surprises during surgery ... which thankfully he didn't ... and it is all steam ahead for surgery on Tuesday (March 18th), with me going in the afternoon prior to have an echo-cardiogram and pulmonary function test and to be admitted, ready for surgery in the morning. All blood tests have been completed ... I hope ... and I have had a chest x-ray. Jeff picked me up on something I said today. I had told my daughter that I was excited about the surgery. Although he has been through the same with his Kidney Cancer, he misunderstood how I meant it. He said that I was giving the impression that I found the surgery exciting, so I had to let him know that I was excited, as in happy, that it was happening NOW and that i wouldn't have any wait time. So, only 3 more sleeps to slice and dice ... I am determined to keep my sense of humour and make light of this as much as possible ... I refuse to allow this beast to drag me down any further than need be.Hugs, Chrissy ... the wild colonial girl  ChrissyN Sat, 15 Mar 2008 00:00:00 GMT