CancerCompass message board discussion started by marilyn55 on 7/6/2008 http://www.cancercompass.com/message-board/message/all,25767,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ What Ivor Lewis surgery? My friend has an early stage SCC picked up on a routine endoscopy - here in Australia they are talking of removing all of her esophagus. Is that Ivor Lewis surgery?Why do they do radical surgery for stage 1a and 1b EC?How do I find Cathy's EC Cafe?I spent years on a breast cancer discussion forum for my mother and now my dear friend has EC. I know that I have much to learn and I know that not all doctors are created equal and knowledge is important to make sure you get the best treatments. Why do they take away so much of the esophagus in early stage EC?thank you to anyone who cares to answer my post.marilyn marilyn55 Sun, 06 Jul 2008 00:00:00 GMT Believe address is www.eccafe.org for Cathy's EC Cafe. Ivor Lewis is surgery where they remove upper part of stomach, section of esophagus then do gastric pullup and reconnect. It is huge surgery, and sounds like it could be what they plan for your friend. There are several approaches they use. They may be thinking they will get it all out before it spreads, since the spread is what makes it so deadly. We are in US and that seems to be more aggressive than the treatment you would start with here. I'm thinking something like ablation might be a first course here (if you were in an excellent facility), but I'm not a doctor.Good luck with your friend, and getting the info you need to help. tongrenhealer Sun, 06 Jul 2008 00:00:00 GMT The best hope for cure in EC is early detection and then complete surgical removal (ivor-lewis).   I think you can find several patients here who have had the surgery.  Just look back thru old messages or here is the link you asked about:  http://www.eccafe.org/ Oncrx Sun, 06 Jul 2008 00:00:00 GMT Hi Marilyn,I am so sorry to hear that your friend has EC. However, it is such  a blessing that the doctors found it early! Often times it is not detected until stage II, III or later. The surgery is a very difficult surgery but there have been advances in the methods used. One newer way is minimally invasive esophagectomy. I have pasted a link to an article on cancerwise.com answers some questions about it. I know they so this surgery at University of Pittsburg Medical Center and MD Anderson in the US. There are probably more cancer centers that use this method as well. If you post a message on www.acor.org asking for people who've had this type surgery you'll find several that are not in the US. Maybe you'll find a doctor near you. (You'll find how to join acor.org on cathy's ec cafe.) http://www.cancerwise.org/october_2007/display.cfm?id=b06c92 Take care and I hope that this is helpful!Chrysti GeorgesGirl Sun, 06 Jul 2008 00:00:00 GMT Sorry about your friend. I don't know about others, but my esophagus not only contained a tumor at the base of the esophagus and top of my stomach, but my esophagus was very eroded from years of acid reflux.  I am not sure, but I think they removed the 2/3 of my eso. as a precaution.  Also, the radiation treatments I received caused a lot of scar tissue.  In order to shrink the tumor and kill it so it could be removed, I received 30 radiation treatments and 8 once a week chemo.  I have heard of many different ways to treat EC.  Some get the surgery before chemo/rad and some get chemo/rad before surgery.  My radiologist said he didn't believe I needed surgery, that they had completely killed the cancer, but he said, Do you want to be the first one to test it out?  Naturally, I said no I'll have the surgery too.If you have the time, go back through some of the posts.  There is a lot of material on the message boards that will be helpful to you.  Also, www.youtube.com/watch?v=mJ3Z7f7RlqA  I think this video might be helpful and there is one there about the minimally invasive technique that is becoming very popular. doingfine Sun, 06 Jul 2008 00:00:00 GMT :::::One newer way is minimally invasive esophagectomy. Thank you everyone for replying. My friend doesn't use the internet but I feel a need to protect her and help her. She got a clear CT scan and is having a PET scan today. Then she will have the endoscopic ultra sound. If the cancer is staged as early and contained only then will they proceed with the full surgery to remove her esophagus. I will read what a minimally invasive esophagectomy entails. My friend is a really good person. :-( marilyn marilyn55 Mon, 07 Jul 2008 00:00:00 GMT Marilyn,I had a esophagectomy almost 4 weeks ago. It is major surgery and I was quite scared. I was not a candidate for the photo-ablasion procedures. I have attached a few websites that should help answer your questions. The best advise I was given was to make sure the surgeon has done a number of these sucsessfully. I had my procedure done at UM Sylvester / Jackson Memorial in Miami. The surgery lasted just over 3 hours, i was in no hurry though. I was home in six days and feel I am doing well. Except for a very small section they had to remove my entire esophagus.They removed the cancer early enough that I do not need additional treatments.  Everyone heals differently, so far the whole experiance has not been as bad as I had thought.  I am 51 with a loving wife & two boys still in school, focus on getting well and living for the future. I will pray that your freinds experiance will be as good as mine.   http://www.mayoclinic.com/health/esophageal-cancer/DS00500 http://www.medicinenet.com/esophageal_cancer/article.htm http://my.clevelandclinic.org/disorders/esophageal_cancer/hi Craig57 Mon, 07 Jul 2008 00:00:00 GMT Congratulations, I am glad you are doing so well.  Keep encouraging the others on this board.  3 hour surgery sounds wonderful.  My doctor was super, but only had done 22 before me.  I was in surgery 10 hours and in the hosptial 2 weeks.  It was a long recovery and it has all been worth it. I expect to be around a long time.  I thank God that the medical profession is so good and that they have made such advances in just the 4 years since my surgery. doingfine Mon, 07 Jul 2008 00:00:00 GMT My husband had stage 1 EC with a tumor at the junction of the stomach. He had EMR (not surgery) and PDT in August of 2006 at Johns Hopkins (even though we live in California). We were told that surgery was the best thing for us, as well. Infact, he was scheduled for it before I found this option. I read medical articles online that stated that Japan finds EC early and they use EMR and PDT. They found that the mortality and morbidity rates after EMR for early EC were lower than those after esophagectomy. The survival rate was the same. This is for cancer in the mucosal. Our doctor, Marica Canto studied in Japan and has done a 10 year study with various other doctors from around the world. Her results have been a 93% CURE rate for EMR and PDT. This study does include pre-cancers and early cancer patients. When I found out about EMR and PDT, I looked at 3 hospitals: MD Anderson, Mayo Clinic - Rodchester, and Johns Hopkins. It appeared to me that the Mayo Clinic and Johns Hopkins were more advanced in this area than MD Anderson. I contacted one of the doctors that wrote the Medical article that lead me to this information and he told me that Dr. Canto at John Hopkins and Dr. Wang at Mayo Clinic were the best in the world. And he would trust either one with his family members. This doctor was the Director of Endoscopic Research at Thomas Jefferson University Hospital. Therefore, we went to Dr. Canto. There have been others that have gone to her from my posts. One person we keep in contact with is also cancer free now. I believe he had a great deal of dysplasia. He only needed to get EMR. I am not a doctor so I can tell you if this is the right thing for your husband. But I have to tell you we are so grateful that we did it. My husband has no side effects from this treatment and lives completely like he did before. I think it might be worth getting a second opinion from a Dr. that is really up on this. Today, his doctor says his esophagus is really clean and looks really good. The doctor said he really doesn't have to come back to be checked for a year, but to go by the book, we will do one more in 6 months, then go to a year. We feel really blessed that we have had this outcome. My thoughts and prayer are with you and if you want any additional information, please don't hesitate to reply to me. Kim Ideakbw Mon, 07 Jul 2008 00:00:00 GMT I read your post about EMR earlier and if I were in my friends shoes I would seriously consider that kind of treatment. But my friend is 'mainstream' and is willing to lose her esophagus because she believes that is her only pathway to a cure. Even though you say the statistics are the same, she would be too afraid to take such a risk. She believes that if she surrenders her esophagus she will survive. The pet scan result said no lymph node involvement. The tumor is 2.7 cms. I know that there is some in situ and some infiltrating cancer from the original pathology. I think she is stage 1 or 2b. I suspect it will be T3 at least, given the size of the tumor but don't know. It may be too advanced for EMR. I don't even know whether they do EMR in Australia. She's visiting the GI doc tomorrow and I will ask about it. I'm sure it will go down like a lead balloon. thank you all Marilyn ps to the poster who got thru the op in 3 hours: WAY TO GO!!!! marilyn55 Tue, 08 Jul 2008 00:00:00 GMT I understand! My husband's nodule was 10-12 mm at the junction and was only in the mucosa. But we had so many people tell us to go with the surgery and that EC can never be cured. We are so thankful we did not listen to them. I think because EC is not very common (though on the rise), is usually not found early, and is so deadly that doctors don't always know the latest treatments and if they do they are afraid of them because the cancer is so serious. But the doctors that have been on the cutting edge of EC are trying to change things. Here is a link to the Management of Gastrointestinal Malignancies conference session that Dr. Canto gave in 2006. Her session is Number 13. ping http://metrics.apple.com/b/ss/applesuperglobal/1/G.6--NS?pcc ... ... Cancer Management Gastrointestinal Malgnancies Dr. Marcia Canto kind episode ..... Management of Patients with Locally Advanced Esophageal Cancer by Dr. ... phobos.apple.com/WebObjects/ MZStore.woa/wa/viewPodcast?id=202942098 - 88k - Cached - Similar pages I will be thinking and praying for your friend! God Bless, Kim Ideakbw Tue, 08 Jul 2008 00:00:00 GMT  On 7/7/2008 Craig57 wrote:Marilyn,I had a esophagectomy almost 4 weeks ago. It is major surgery and I was quite scared. I was not a candidate for the photo-ablasion procedures. I have attached a few websites that should help answer your questions. The best advise I was given was to make sure the surgeon has done a number of these sucsessfully. I had my procedure done at UM Sylvester / Jackson Memorial in Miami. The surgery lasted just over 3 hours, i was in no hurry though. I was home in six days and feel I am doing well. Except for a very small section they had to remove my entire esophagus.They removed the cancer early enough that I do not need additional treatments.  Everyone heals differently, so far the whole experiance has not been as bad as I had thought.  I am 51 with a loving wife & two boys still in school, focus on getting well and living for the future. I will pray that your freinds experiance will be as good as mine.   http://www.mayoclinic.com/health/esophageal-cancer/DS00500 http://www.medicinenet.com/esophageal_cancer/article.htm http://my.clevelandclinic.org/disorders/esophageal_cancer/hi Craig57,Was your surgery done with the Ivor-Lewis procedure? If so, your experience was quite remarkable.Good Luck and KEEP MOVING,Steve Cyclist Tue, 08 Jul 2008 00:00:00 GMT Ideakbw, the link isn't working. When I have more time I can play with it..... but..... it's really frustrating because there is always such a sense of urgency with a cancer diagnosis. I feel as if my friend has boarded a freight train that is powering thru the landscape with relentless speed and indifference to what it crushes in its wake. It all seems a bit hit and miss. You get referred to someone and so much depends on the initial referral. If he/she is good then the rest should fall into place. Already my friend has unintentionally ignored good advice. e.g. work with an oncologist, and go to a centre that is multi disciplinary and is a well established centre where the operation if performed often and where the doctors work as a team. I don't have the heart to say anything to my friend as she is being very upbeat and positive. If I mention any concerns I may undermine her positive approach. I thought the following was interesting: http://jjco.oxfordjournals.org/cgi/content/full/28/10/585 I am going with her to the GI specialist today. I will ask him how often he has worked with the surgeon etc. marilyn marilyn55 Tue, 08 Jul 2008 00:00:00 GMT  Steve, I believe it was the THE procedure. So far my only problems have been the dumping syndrome. I think I have a handle on that now, I developed a lactose intolerance after surgery. I have read some posts where (hopefully) that will go away with time.  Craig Craig57 Wed, 09 Jul 2008 00:00:00 GMT Hi Marylin I am sorry about your friends diagnosis. I have had one half of my e and a third of my stomach removed around 15mths ago at Monash Medical centre in Melbourne. As a  48 yo single mother of two children it was a radical step to have to take but according to my surgeon the ONLY way to ensure that I survived. They do not seem to have any faith in the other options and I managed to speak with a lady who had had radiation and chemo rather than surgery and her cancer returned five years later. She was told that the damage done by the radiation would now make the surgery more difficult and she wished she had had the surgery the first time round. It is a hard call and not a decision any one wants to make but an experienced surgeon is paramount. I was lucky because of previous lung surgery mine was going to be complicated and a surgeon who still practices in Melbourne  had  just returned from England where he had done the procedure in a different way using new techniques. I think without him I would not be here today. If you wish to pm me I will give you his name. Best of luck and god bless your friend is lucky to have you looking out for her. misfit Sun, 13 Jul 2008 00:00:00 GMT