CancerCompass message board discussion started by Hannahlks on 12/28/2006 http://www.cancercompass.com/message-board/message/all,8488,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello all, First off - just wanted to say how brilliant I think this forum is. Inspiration and hope can be held only with the knowledge that there are other people out there - perhaps only virtually - but there, nontheless. So thank you. For those currently battling ( and beating) EC - Keep going....the thing about cancer is there's all to be played for and attitude can make a difference. My ma - the one person who means more to me than life itself, continues to fill every room in our house with love and laughter; 9 months after diagnosis with T3N1MO esophageal cancer. She's phenomenal.She whooped Bowl Cancer 6 years ago and I can tell you - there isn't inch of her that isn't willing to give EC the same treatment. (no pun intended)Her diagnosis, as per many, came after years of being fobbed off with indigestion tablets. 'here - have another rennie.' In fact it wasn't until the had a complete blockage (not even being able to pass water) that they thought to do an endoscopy. Some four/five months after her having trouble eating. Anyway I digress ( not unusual) Long of the short is she finished her treatment (Chemo and Radiotheraphy - Cisplatin and 5-FU) back in September. She then had her first scan at the beginning of November. The scan showed ' no significant change' to the tumour but she was told that given that there had been a functional change e.g. she was eating better - she should, well, just go home and get on with life. Give her consultant a call if any problems swallowing reoccured.It was the strangest diagnosis to recieve. After months of feeling like we would have something concrete to work on - the response just frustrated me further. What do you mean there's no significant change, but your telling her to go away. I really couldn't understand it. Why wouldn't they do another endoscopy, instead of just relying on what are more often than not  relatively useless scans? I knew that changes of esophageal cancer were sometimes hard to detect [often the tumour itself is a thickening of the wall rather than a solid lump] but if they couldn't build an accurate picture - why just send her away...Immune system battered, she's been on steroids almost continually since November. At the beginning of December she started having a wee bit of trouble eating again but put this down to post treatment aggravation of the esophageus. She insisted she was fine ( as she always does when she's not!) Then a few weeks ago she was let out [my pop's had her under house arrest this christmas fearing infections etc!]  to come visit me in Edinburgh ( I'm in my final year of Uni there) for the day. We had a wonderful day, even went out for some lunch. She vomitted and fainted. I knew then that something wasn't right again.Two weeks on and she's barely keeping anything down. She's been put on a waiting list for another endoscopy.  They might put a stent in.My questions as ever are never-ending; and so i'd be grateful for any response/advice. However I would really like to know whether anyone has had a similar experience. I can't quite work out whether they've just decided that it's not going to be cured and thus are looking into pallative options e.g the stent or whether they...oh I don't know. I'm just confused as to why they can't give us any straight answers.  Anyway - apologies for the rant, healing and strength vibes sent in force across the cyber divide.Walk in balance all, Han  Hannahlks Thu, 28 Dec 2006 00:00:00 GMT Han Just read your note and thought I would reply!  Sounds like your ma is one strong woman and not to be messed with....  lets hope she can beat this again. My dad who is 67 has been diagnosed with T3N1M1, with metastatis in the liver.  We had no idea he was poorly until a few months ago when he started to lose his appetite and have problems swallowing.  Looking back though he too was forever suffering from indigestion and should really have bought shares in the Rennie company!  Last week he had a stent fitted so at least he can eat now and we are trying to fatten him up ready for whatever treatment he is offered!Although he has only been diagnosed for two weeks, it has really bought the family together (there is my mum, 4 of us children and 7 grandchildren!)  We are all trying our best to remain positive and support each other...  if you can remain positive then you are part of the way there.  Don't get me wrong, we have all had a good cry but we are ready to fight now and wont give in easily! Something we have all picked up rather quickly is the reluctance of the health service to do anything unless you kick up a fuss.  In only two weeks we have had many setbacks and delays in seeing people, promised scans and then nothing, oncologists not turning up to their "weekly" meeting to dicuss treatments.... the list goes on.  What the doctors didn't bank on is that we are not a family to sit down and take this sort of treatment and will do anything we can to help my dad with his fight.  To date I have already upset two doctors but I couldn't give two hoots if it means they get themselves into gear and do something!  Last week he had a stent fitted so at least he can eat nowMy advise would be to you and your family to get on their case (if you haven't already) and demand that the date for the endoscopy is brought forward.  It is shocking that they sent your ma home after her treatment without really explaining things and even more shocking that given that she fainted and is having trouble eating again that they are leaving her like this. We have also found much help on the internet (which is where I stumbled upon this chat room).  There are many suggested lifestyle changes such as not drinking coffee, balancing your PH level etc that can all help in the battle with big "C".  Today my sister phoned me and has bought all sorts of things for my dad such as natural soap, flax seeds, organic deodorant and other weird bits and bobs!  My mum and dad came for dinner today and I made him drink Green Tea (which he was not impressed with!) and sent him away with lots of mineral water!  He is willing to do anything to stay around and has even bought some liquid cellular zeolite (many items on the internet about this) to try.  Our philisophy is if it doesn't work then at least we can say we tried. I hope all goes well with your mum, I know this is a difficult time for anybody dealing with this but try to remain positive!Take Care Js275 Sun, 21 Jan 2007 00:00:00 GMT If you could please let me know where your Dad bought the liquid cellular zeolite, I have also gotten the flax seeds for my Dad.!!! Tonicattle Wed, 02 May 2007 00:00:00 GMT