hi guys, Well 2 years after being diagnosed with stage 4 inoperable esophageal cancer i am still in the clear after having chemo and radiation.Now i feel in some ways i overreacted and in other ways i live with the fear of reccurence.I was told by the doctor in the beginning my chances were pretty slim of surviving long term and curing this type of cancer at stage 4 which had also spread to a distant lymph node was not possible and the treatment was just pallative with the aim of just prolonging my life.I read the statistics and i know most people with cancer probably at some point are curious and have to google it.When i see less then 3% 5 year survival rate it just makes my heart sink.I have even asked other people with the same condition on a few different american sites if this type and stage of cancer has ever been fully cured from just radiation and chemo and its pretty much unheard of when its inoperable.Am i overreacting when i accept the fact i will probably die from this horrible thing?My family and friends think im cured and say "just get on with it" "stop being negative"or my favourite is"look at neil armstrong!he beat it"well im not bloody neil armstrong am i!.Most of the time i am positive and forsee myself still alive when im 40 but then at other times i slip back into a mode of thinking "ok well i need to do this bucket list thing,and quick!".On two occassions this year for some reason i have been admitted to hospital with small bowel obstruction.After two ct scans,multiple blood tests,x rays etc my oncologist is telling me its not from cancer but my local doctor thinks he is not doing enough to determine what is causing it.I have an appointment with a GI specialist in a month to see if he can determine whats going on..also my abilty to swallow food is getting worse and i just think that something isnt right...I feel in a way its like if i find out one day that im riddled with cancer in different parts of my body and its terminal then the people in my life will finally realize the seriousness of my situation and understand what im going through.I will never forget the first time the oncologist told me it was incurable. Its like a monkey on my back...or a big bloody gorilla really.. dan
7 Comments
Contributor
Hi Daniel You are in a big, scary situation and big-dipper feelings are natural. I commented on statistics here: http://www.cancerconnections.com.au/blog/liver-met#comments 21 Jul 2012 - 20:19 I personally think they are unhelpful. I have faith in God and believe our days are numbered. To me that means we will not die earlier or later than planned and I can relax with faith in that even if my date is soon (but hopefully is not). I have just celebrated 12 months since my op and doing well, considering. I think every day I wake up a good one, no matter what happens. What you think/feel must be accepted (not considered wrong) but worked through and dealt with in the best way for you. Family/friends may think differently, and need to cope with their own feelings (often scared, feeling helpless, unable to acknowledge, etc). I tend to go with my gut feeling; it is seldom wrong, really. If you have positive days seeing a future, plan for it; if you want to fulfil your bucket list, do that. Any of us could go under a bus tomorrow, anyway. Warm hugs of strength, peace and comfort, Pamela 🙂
0 Kudos
Contributor
Hi Daniel As you know I have been through the same cancer as you and although mine was stage 4 also they were able to operate and it had not spread to any other lymph nodes. In my favour is that the surgeon explained to me that the statistics for our cancer are not good reading and to be honest they really are not but as he pointed out we are not really in the age group for the statistical data as almost all are in their late 60's or 70's and they are not as fit and healthy to fight this disease. The statistics also take into consideration those who had the operation and luckily I did not find these statistics until after my op as there is high mortality rate after the surgery due to complications but again these are for older patients. It is difficult I know but I feel we need to put things into context and although we know there is a chance of a re occurrence there is no guarantee either way and I know what you mean by the bucket list but where as I used to think one day I will do that I now think I have the opportunity to do this so I will because I dont know when I will get to do it again rather than wait. I like to think we have a lot longer than the 5 year statistic due to us being younger and fitter when this disease caught us and if nothing else it helps us seize the moments to enjoy good times rather than postpone things. Your feelings are perfectly normal and it is difficult to focus on the future when you dont know how long it will be but if you let it take too much of fun time from you it wins. MY first feelings when I was diagnosed were that I would not get to see 50 but now I want to see my expected grandchild grow up into adulthood and I will do my best to make sure it happens and try not to think every unexplained ache or pain is not a return of this disease. Chin up and hope that none of you symptoms are anything more than an irritation. Kasianne
0 Kudos
Super Contributor
I do understand your feelings .Your reaction is normal. It's also true what the others said about statistics . My cancer was Stage 3 ,not as bad as yours but my surgeon said to ignore statistics which is not easy but over 2 years since diagnosis it has become easier . Stats for my cancer are not as grim as for yours but my cancer is not able to be cured . My oncologist talked as if lung mets will happen but added that many survive with these for years . We have no way of knowing where we "fit into the statistics". From other sites I have learned that the course of cancer is different for each person, with the same cancer . Also statistics are a bit old and new treatments may change these in future. It is still quite new for you but over time it may be easier to take each day as it comes . As for the attitude of friends and family ,they just don't get it . That is why online sites are so helpful. Even those closest don't always get it . Our doctors do't always get it or have time to help. As for your other problems I hope that they get sorted out and you don't get sick again . All the best .
0 Kudos
Not applicable
Thanks pamela and kasianne for your reply....I do not take the statistics as concrete and i think doctors just say the worst outcome as its a very sensitive area for a them to discuss with a patient.I guess its hard to be positive about the future all the time.I have lost 2 jobs this year from being in hospital and im back at square one..i would really love to live normal again,get up go to work,come home,look forward to my weekends,hang with friends,have a beer or two,you know just the normal stuff people do.A lot of the time i forget about my situation and then i see the hole where i had the peg tube and think"geez,thats right,i remember now"and also when i have difficultly swallowing i get a sense of reality and i cant help but feeling helpless about the whole thing...im a realist by nature and am not scared of dying as everybody has to go through it sooner or later..I do know there is not much i can do but look after my health,eat the right things,keep active etc and try to stay positive..after 2 years i suppose having cancer is old news for my family and friends and they probably think i should get over it because i still look ok.I always get people reffering to different types of cancers to me and saying"see they beat it"without having knowledge of how aggressive esophageal cancer is,especially after it has already spread to a distant site.I wish i did have the option to have surgery or some sort of closure,rip half my insides out if they had to,just get rid of the bloody thing..it really is like living with a ticking time bomb inside me and i dont know what the timer is set too,but then again i guess nobody knows when there time is up whether they have cancer or not. dan
0 Kudos
Not applicable
thanks silly so true,i think the stats are based on average age of 60 so i really dont take much notice of them.. I have to be honest and admit that im p****ed off,p****ed off at my family,P****ed off at my friends,P*****ed off at my oncolgist,P*****ed off that i got dealt the short straw...im trying really hard to get back to normal life...really really hard...the only support i have had is myself and people such as yourself and venting on here is really helpful as im sure you and many others can understand what im going through..dont get me wrong i dont feel sorry for myself and i dont want peoples sympathy and i dont want everyone around fussing and talking about it all the time...its just the uncertainty of it all gets overwhelming sometimes.I think i need to put my energy and frustrations into something positive...sorry for the profanity :b dan
0 Kudos
Super Contributor
It's ok that you expressed how you were feeling . It's something we all need to do from time to time .Thoughts and feelings can build gradually and then it gets to a point when they need to be gotten rid of before they become too much . I fully get a lot of what you're saying . I think that I am just living and not worrying and every now and then I feel sad or fed up and wish for my old life . Recently someone pointed out to me that I don't have cancer . I was stunned momentarily as I always think of it as being there ,lurking ,waiting to show itself . It will most probably metastesise but could also recur any time so I still don't feel free of it .That 5 year rule does not apply to my cancer . Yours is there so I do feel for you.
0 Kudos
Not applicable
I think what's worse than what your going through is how your family treats you. My family treats me the same way. There is nothing worse than being all alone in a time you need someone to lean on. I do not have cancer but have had some seriouse health issues and none of my 5 brother and sister or my mom and dad cared. Acctually they made fun of me and the pain I am in. My neighbor to me this and it's so true. Maybe this is not a test for you, Maybe it was god testing them, to see how they treated somone in need.
0 Kudos
Post new blog
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.