Oesophageal cancer

[Kathyhtak]

Hi, I am a 49 year old female. I was diagnosed with oesophageal cancer in early February 2013 and am about to start 3rd week of chemotherapy. I would like to hear from other people who have oesophageal cancer.

[kasianne]

Hi Kathytak I was diagnosed with oesophageal cancer in August 2011 and have now been cancer free since my operation in December 2011. I was 45 years old when i was diagnosed. Such a shock really as it was hard for them to diagnose due to being female and too young. All I can say is ignore a lot of the statistics as they are for older males as it is very rare in females of our age. I underwent 3 cycles of chemo prior to my operation but due to the results from the pathology after my operation I declined the 3 cycles afterwards as it turns out the chemo had shrunk the tumour and I was cancer free prior to the surgery. More than happy to answer any questions if I can. Kasianne

[Kathyhtak]

Hi Kasianne, Thanks so much for your response, it's really inspiring and positive to know of someone who has survived this cancer. You're right about it not being common for females our age - when I was in pre-op recently to have a porta-cath inserted, several staff came in to ask me about my cancer, how I was diagnosed etc. I figured it was not something they see often! I have a couple of questions I would like to ask. Where on the oesophagus was your tumor? (mine is almost at junction of stomach). How big was it? Any metastisis? (I have several liver mets). I have started chemo, into week three of three week cycle. I think the tumor has shrunk a bit as I have improvement in eating - before starting chemo I was down to liquids only, that's how much my oesophagus was blocked - now I am able eat soft but slightly chunky food. I'm trying to gain weight gain, I was 44.6kg at my lowest (I am 168cm/5'6") but have managed to put on 2kg with the improved eating. There is no talk of surgery for me at this stage, although I will be asking my oncologist when I see him again this week. I would like surgery as I just want to get this tumor out! Its good to know your surgery was sucessful. Thanks again for your response and I appreciate any more information you can give about your cancer experience. Kathy

[kasianne]

HI Kathy I was very lucky and had no metastasis although there were concerns after the initial PET scan that I may have had one on my left ovary. By the time I was diagnosed I had lost 20 kgs as I had been struggling to get my GP at the time to listen to me and she kept insisting that it must be the helibactori pyloris in my stomach which I had tested positive to and been treated for but still the symptoms continued. I was not diagnosed until I changed GP's and they sen time for a private endoscope the following day where the doctor told me that I had a tumour on the junction of my oesophagus and stomach which was 5 cm long and had more or less closed my oesophagus which was why I could not keep food down. He tried to stretch it for me to allow more food down.I was then referred to a surgeon a the local hospital who saw me the same day. They then inserted a nasal gastric tube to feed me but I was still vomiting all the time so after the PET scan they operated to remove the ovary(which thankfully was benign)and inserted a J-Peg tube to feed me into my duodenum. I started chemo shortly after this and I was sat on a bed having the chemo administered and throwing up my saliva as I could not even keep that down. They think that it wasn't so much the tumour stopping the food from going down but the tumour stopping the reflex valve form closing giving the signals to the bottom end of my stomach to digest so the food and saliva was just sitting in my stomach and rotting and then the stomach would eject it as in the mornings I would wake up and throw up stagnant saliva. The body can be really amazing. By the end of the first 3 week cycle I had started to eat small amounts again and this increased so that by the time I went for my last cycle I was taking a packed lunch with me and no longer using the feeding tube. I had to negotiate when my surgery would be as I finished my chemo at the end of November and the surgeon wanted to wait until after he had been on holiday in January before he operated and for me to have another cycle of chemo. I stuck to my guns and said that I wanted to be cancer free by 2012 so he arranged to operate on the 19th December 2011 and tried to put me off by telling me I could be spending Christmas in intensive care. I had the operation then and was in the main ward 3 days later although it was not all without incidence. I left hospital on New Years day and I think I was seen as quite remarkable as there was someone else in who had the operation a week before me and had not been doing so well. I think the fact I was able to eat prior to surgery and improve my health helped a great deal in my recovery. I had a roast lamb dinner the day before my operation followed by a banoffee pie for dessert (needed the bananas for my potassium which kept playing up)as I knew i wouldn't be able to eat for 10 days after the op. At my lowest point I had lost 30kgs and was down to 65kgs and I am 183cms/6ft 1 so I looked really bad but I have recently just gone back over the 80kg mark which is fantastic and I am feeling back to normal again. Not many women who feel great about putting weight back on either. It is a really good sign that you are eating again and it will get better I am sure and it sounds like the chemo is doing its job so good luck with the rest of your cycles. I used to joke that I was one of the few people who looked better in chemo and the nurses at the ward couldn't believe it either. I hope your journey progresses as well as mine did and please ask any questions you would like and i will try to answer if I can. Take care Karen

[Groundhog57]

Hi finally found someone else with same cancer. Been trying to find people who have gone throgh surgery for osufagul cancer. Scaring the hell out of me. Docs just say big opperation. Move my anatomy around cos my tumour very high up behind windpipe. Dr saying 16 hour op that cant be right. Need somepositive info. Finished 2 rounds of chemo. Wasnt able to have raiation therapy had it back in 1985. For another cancer.

[kasianne]

Hi Groundhog The operation is a biggy and I was told 10 hours and it actually took nearer the 12 hours mark not that I knew anything abut any of it, they put me to sleep and I woke up in intensive care and all was done. Being told that they are just rearranging your insides is a very simplistic way of telling you the truth and it is amazing what they do and how the body copes. I had a couple of set backs but with the magnitude of what they did it is not surprising but my set backs were quite unique to me by all accounts. I was out of hospital 2 weeks after the surgery which everybody thought was amazing as the average stay is more around the 4 week mark. I only had chemo as well but apparently that had eradicated the tumour as the tissues they removed in surgery including the lymph nodes were all clear of cancer. Apparently radiation with this cancer can cause problems around paralyzing some of the muscles which control your food moving down the esophagus. Hopefully you will be as lucky as I was an be able to eat properly again before the surgery which will give you the strength to recover quicker. Good luck and remember the thought of surgery is worse that it actually happening and those having the surgery do not suffer emotionally as much as our loved ones waiting to hear form the doctors to say it is all over. That is how I rationalized my fear of going to the theatre and when I put it like that I realized I had the easy bit as I did not have to watch myself and wait to hear from others. kasianne

[Groundhog57]

Hi kasianne thanks so much for the reply . Someone who has gone through this opp. This info is invaluable to me because of the unknown all the dodgy stats the doctors use, I'm not a gambling man , but trying to figure out the future has been so hard for me. I've had cancer befor in 1985 but oohing like this. I was young and courageous. 25 yrs old then getting a thirty year extra life span put on sounds good back then. Of course time moves on and time now 56 great survivor of Hodgkins,, but the side effects of treatment ow created my new Delemer lol. This self spelling correcting ipad drives me nuts.. Sorry off track. Think your get my drift. Can I ask where your tumour was in your esuphgus.? High like mine or low like most people? Apparently mine is in a bad place to operate? Have you been able to eat orally after the opp? How long till you could eat? Did you have a feeding tube..? Sorry I have a lot of questions ,,,doctors talking about rehab, after did you get that?i have other complications like arteries that blow out without warning happend 10 yrs ago now that was scary.so the operation really is doing me in.. Thanks again for replying Andrew.. This contact means a hell of a lot to me.

[Groundhog57]

Hi kasianne thanks so much for the reply . Someone who has gone through this opp. This info is invaluable to me because of the unknown all the dodgy stats the doctors use, I'm not a gambling man , but trying to figure out the future has been so hard for me. I've had cancer befor in 1985 but oohing like this. I was young and courageous. 25 yrs old then getting a thirty year extra life span put on sounds good back then. Of course time moves on and time now 56 great survivor of Hodgkins,, but the side effects of treatment ow created my new Delemer lol. This self spelling correcting ipad drives me nuts.. Sorry off track. Think your get my drift. Can I ask where your tumour was in your esuphgus.? High like mine or low like most people? Apparently mine is in a bad place to operate? Have you been able to eat orally after the opp? How long till you could eat? Did you have a feeding tube..? Sorry I have a lot of questions ,,,doctors talking about rehab, after did you get that?i have other complications like arteries that blow out without warning happend 10 yrs ago now that was scary.so the operation really is doing me in.. Thanks again for replying Andrew.. This contact means a hell of a lot to me.

[kasianne]

Hi Andrew I am pleased that my reply has helped you a little. My tumour was right a the junction of the esophagus to the stomach and this meant that my stomach was not operating at all as the tumour was affecting the reflux valve so even keeping saliva down was impossible at the worst stage of this journey before and during the commencement of the chemo. From what I have heard whichever way they do the operation it is very complicated in terms of the location of where they go into the body and I believe with your tumour being higher they go in through your shoulder where your collar bone is and maybe cut through the chest wall to be able to access the esophagus. They had to completely relocate my stomach and it is now in my chest and my esophagus has lost 10cms in length and they have pulled my intestines up with my stomach so I have some of them in my chest to so that the stomach could be reattached in my chest. I was informed that when the tumour is higher they can just take out the affected area and rejoin it to a lower part of the esophagus but this would probably mean other parts of the digestive tract being moved around a bit to. I was not allowed to eat or drink anything for 10 days after my surgery to allow the joins to heal and I had a feeding tube into my duodenum but that had to be inserted in the October just to give me nourishment prior to any surgery as I was very malnourished and weak as I had lost around 25 kgs in weight by this stage. I thought the feeding tube would freak me out having to deal with it but it was amazing how easy using it was. When I was allowed to eat again it was initially just soft pureed food and in the hospital this food was tasteless and really horrible but my husband was fantastic and some of the meals we had frozen in the months prior to the op he would defrost and liquidize for me so I could have something with taste, have to admit it didn't look very appetizing but tasted good compared to the hospital offerings. Within a few weeks I was eating normal food just smaller amounts than before but now I am pretty much eating proper sixed meals although I can only manage one course which is a bit of a shame as I love my desserts. I do have problems with my bowels if I eat too much sugary stuff and if I miss a meal I suffer to and apparently these are two forms of 'dumping' syndrome and to do with blood sugars. I complained to the doctor that he had taken away my ability to function properly as a woman and eat loads of chocolate when I was feeling hormonal. I think he thought under the circumstances this was funny and then proceeded to explain what was happening. I struggle with too much diary as well as this gives me diarrhea but I think I know my limitations now and just adjust my eating accordingly and it is a small price to pay for my life. I did have physio in the hospital and they checked up on me a couple of times after I left but I was very determined to do everything I could to get out of there so was very compliant and a lot of what they wanted me to do initially was very difficult and this was simple things like walking as it was so tiring and as for breathing and talking together this led to some very broken conversations but it was only for a few days. Going to the bathroom was a planned experience with removing oxygen tubes, taking drain bags and then the drip stand with my cocktail of drugs being pumped into my PICC line plus having to disconnect from my feeding tube so this could not be a last minute dash. My personal experience I feel was positive in light of the situation I was in and prior to the operation my mind has made the whole experience far worse than it turned out to be and if ever I feel a little down about what life has thrown at me then I remember I could be dead now if I had now had the opportunities the doctors gave me and I have since become a grandma so that was so worth fighting this for. The statistics make really bad reading but most of them are from people far older than us and their health in general was far worse before they got ill so I chose to put them into perspective as they did not really apply to me. Hope this has helped. Karen