My very close relative has cancer of the gullet with secondaries on his liver, in his stomache, and in his chest. He has only just been diagnosed and we are all reeling from shock and are totally traumatised. He is only young and has small children. He is very frightened and so am I. Does anyone have any experience of this cancer. What should we expect? How can we help him? Can he survive this? How do I stop falling apart and be strong for him?
FormerMember
Yes, my husband also has this type of cancer. He was diagnosed about 18 months ago, and it was also inoperable as it had spread to the lymph nodes - now it has spread to the lungs too. We also went through a lot of phases of fear ond horror - because we had no idea of what to expect, and the statistics are miserable. He had chemo therapy and radiotherapy, which was hard, but at least partially successful, now he's having weekly chemotherapy. He's tired, but has put on weight. He has scans next week to see how he's doing.
What we have learned is that hope is important and perspective is important. It is an extremely serious situation, yes, but treatment has improved. Tomorrow my husband and I are going to visit a 'chemo-colleague' in the very same situation. We're going to have a barbeque and have fun - this man has a very aggressive type of this cancer and has practically constant chemotherapy - but is doing well.
Go to http://www.eccafe.org/ for lots of stories about this kind of cancer - we joined the ACOR mailing list mentioned on here and have had support and help from people in the same situation. There you find posts from people who have been at stage 4 for 5 years or so - who are still going strong.
As they say, you have to prepare for the worst and hope for the best - and enjoy every day.
Being 'normal' was an important aim for us - we were so exhausted and tired of dealing with everything surrounding the illness that we enjoyed everything that made us forget the situation for a while. Now we mostly forget it!
Hi, Yes my dad has just been diagnosed as having this type of cancer, although we are currently waiting to see what treatment plan they will do, or whether or not they will do the operation. It is quite positive for him so far but time will tell.
On a brighter side and more in line with your own circumstances, my friends husband had it two years ago and was told he only had two weeks to live! they didn't operate but gave him chemo and radio, he is now in remission and his tumor was from his throat to his stomach! So never give up hope, as they say where there is life!....
Pat, thanks for your reply I also benefitted from it and will check out the link.
Thank you so much to Netty and Pat. I feel better already just knowing Im not on my own. I find it hard to discuss with him because he is scared and I dont want to make it any worse, cos Im scared too. But then its still early days - and I mean early, just one weekend. Last week our lives were normal. I will check out the link you suggested and thank you both so much for your compassion and kindness, I think he is really really ill, but I hope he will have enough strength to have some treatment. Im so so sad and so scared I just wish i could muster up the strength and bravery you both have.
Hi, just read your page & this blog & would like to say how very sorry I am to read about your brother, you seem to have had a terrible time over the last five years. I feel very sad at the thought of how you are all feeling right now. I have been through exactly what you are going through & I do know how desperate & sad you are feeling, I cried like I'd never cried before when my 47 year old brother was diagnosed in September 2008 with grade 4, inoperable/ terminal, adenocarcinoma of the lower oesophagus & upper stomach with liver secondaries & I still do now, everytime I think of him & what happened, it breaks my heart & like you I have other relatives who have had cancer, my uncle died of stomach cancer & my cousin died of pancreatic cancer too, so I can only say spend as much time as you can with your brother, as life is so short & precious, just be with him & his family, I know it's hard to talk about all this, but talk as much as you can & do as much as you can together, your family & his together, just being there & showing that you care & that you are there to help & support whenever, that's all you can do at the moment, just help & be there as much as you can.
Everything is very new & raw for you right now & it is very scarey & it will be hard, with tough times to come, but try & be strong, I remember hugging my brother the day before he went for his first chemo, he was so scared & I hugged him & said that it would be alright & we talked together, lots of crying together too, but we were all there for him, his wife, mum & dad & sister & brother & me, his elder sister, I'm 50. I remember saying at the very beginning that, I don't know how we are all going to get through this, but we do, we have to & you have your young family too & in a way we have to keep it together for them, I know you say that you haven't the strength, but we get it from somewhere & we get through.
There are alot of people on this site with oesophageal cancer & some are doing incredibly well, so I hope you hear from them, if not you can always read their blogs, forums etc,.& join in. Also if you have any questions you can ring or e-mail the macmillan nurses on this site, i did that a few times during my brothers treatment, it does help & the fact that you can ask these questions annonymously helps too, as then you don't feel so silly asking questions that you feel you should already know the answer to
I wish you all the very best & I will think about you & your brother. Good luck, lots of love to you all.Luv Tinabrina.x
p.s Hope you will let us know how your brother gets on!.
My husband has this cancer and is only 41. We have 2 children age 11+12. We found out in Oct 08 and they have ruled out operating as it was in quite a few lymph nodes. He has had 6 rounds of cisplatin and 5fu which worked to start with then the cancer started growing back. He is just about to start his second lot of Taxotere, another chemo, this has improved his swallowing, so hopefully it is doing something. This is as stressfull as it gets, but you just have to get on with it when you have young children. The kids do help you get through as you cannot get too self obsessed. We just take it each day at a time, and have small goals and things to look forward to.
