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recurrence of esophageal cancer

DanTheMan
Posts: 24
Joined: Feb 2012

Well 2 years i made it with a good quality of life but unfortunatly after 4 visits to the emergency since march with small bowel obstruction they finally operated and found a tumour.apparently it is really rare for it to move to this area and my oncologist says he is in unknown territory...lucky for me(i take all the luck i can get)they removed it and the surgeon was surprised it hadnt spread throughout the small bowel,so at least some good news.Im just numb to it all,all the worry,the unknown, just isnt worth losing my sanity.PET scan coming up in two days to see if there is any other places where this sneaky thing can be hiding.I know everybody says"stay positive!"yes yes yes i know about the placebo effect and been on the positvity train since my diagnosis and changed my diet,seen naturapaths,changed my whole lifestyle and the bloody thing still come back...lol.. In a big way im a realist and really how things go is out of my control at this moment...I do have to think about the worst outcome so im mentally prepared and can hold it together.Just have to take it 1 step and day at a time...
dan

DanTheMan
Posts: 24
Joined: Feb 2012

Well after 4 visits ,2 ct scans,multiple x rays,barium swallow follow through a surgeon in the hospital decided to do keyhole surgery and have a look,lucky for me she did.I just knew something major was going on as everything was just never working properly.My symptoms were pretty acute as i was having severe abdominal pain 2 or so hours after eating and on the 4th time even after 4 days i still was vomiting and in extreme pain so i guess thats the reason they had no option but to have a look.I am still recovering as it was 2 weeks ago but im back to eating like normal and i just hope i can get more time with a good quality of life.I dont know what the outcome is yet as i have results in a few days and end of next week i get the results from my pet scan.Just gong to enjoy everyday as it comes as thats all any of us can do:
dan

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Gosh, Dan. This is just heartbreaking and difficult to accept. You sound like a smart, strong person, so you just keep up the good fight. It's hard to stay positive, but being positive really helps. Hugs and more hugs to you.

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

Hello Dan,
Sometimes its hard to stay positive here in tumourville, but to my mind it is a positive that the surgeon said it hadn't spread through the bowel. The unknown is the scariest thing to live with at times. Good Luck on your Pet. Wishing you the best possible news.

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Dan,

I am so sorry to hear of your recurrence. It sounds like they found it before it had a chance to spread very much. I am sure you are on pins and needles waiting for the results of the PET scan results. We will be hoping for good results. There are other survivors who have had recurrences and gone through surgery and chemo a second time and gotten back to remission.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Dan, The waiting for results is nerve wracking. It's hard to not think about it.
Glad the surgery showed the tumor had not spread.That is a positive plus.

Post us the results of the scan. You will be in my thoughts and prayers,
Sandra

DanTheMan
Posts: 24
Joined: Feb 2012

thankyou so much for your kind words and thoughts everyone...you know it helps just to know that other people understand what im going through.I could wish i didnt have this terrible disease and ask "why me?"but i just cant live in the past.To be honest i am not really doing very well mentally as my swallowing has gotten worse in just the last few days.I am having that sensation of swallowing and then a secondary movement in my throat just like i did before i was diagnosed...its scaring the crap out of me because most things in life you can usually find a solution to a problem but unfortunatley its not so easy when it comes to your body :(.I am feeling really tired all of a sudden and i didnt think it would hit me like this.....I dont know if the second time round i will be so fortunate to have positive results from any sort of treatment,my oncologist doesnt really give me the feeling that chemo without radiotherapy is as effective on the recurrence of esophageal C.All my family seem to think because the first time it was a walk in the park that i just get more treatment and it will do the same thing.I can only hope and prey.I probably am getting a bit ahead of myself as i have a PET scan tommorrow and find out the results friday next week but i just know something is going on,maybe its something to do with having bowel surgery a couple of weeks ago?I dont know.I cant think,i cant sleep.I feel like im back where i started 2 years ago but this time i have less ammunition to fight this battle.
I'm sorry if i rant on a bit,it just helps if i get this off my chest.Most of my friends and family are not really supportive and i put it down to they dont want to face their own mortality. Even though most of us are worlds apart i guess we can all find some comfort in knowing that we are not alone.
Dantheman

BMGky
Posts: 666
Joined: May 2010

Bailey you are so helpful to all of us. Just know, we like to talk with you.

As you so well said, what he is going through is just unimaginable and to face it a second time. We anxiously await Dan's results. Please let us know. You are in our prayers. BMGky

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

You rant just as much as you please, you have earned the right.
We are all here for you and praying that you will get good news from your pet scan.
I feel so angry for you, so lord know how you must be feeling. Please God you scan
will be clear and you will be able to overcome this new challenge.You're our DantheMan
after all.
My prayers and my thoughts are with you. Hang in there!
Hugs,
Marci

jaycc
Posts: 130
Joined: Jul 2012

Dan it is so hard waiting for results. as others say rant all you want, hopefully it helps the stress some. Our prayers are with you as you get your results.Sometimes I wish that EC gremlin would peer off the doctors table so I can lasso it,and dump it in a hole 90 feet deep.
You probably know your body better then anyone. Hoping for good news and quality days ahead.

mrsbotch
Posts: 377
Joined: Oct 2010

Dear Dan

When Vince's EC came back a year and a half after surgury we were devastated. This cancer is such a beast. How many more families will be hit with this. My God I am so sorry as you have been thru so much.
You say anything you want to us. We KNOW what you are thinking and how you are feeling.

Do what you think is best Dan and as Judy says FEC.

barb

DanTheMan
Posts: 24
Joined: Feb 2012

thanks guys your words are helpful....unfortunatley in just the last few days my swallowing has got to the point where its getting really hard and painful in my chest...i honestly thought it would not hit me so fast...i been eating ok for 2 years and then had small bowel surgery and a week later im getting swallowing problems..:( i always suspected after they start cutting you open in places that the cancer reacts in funny ways and maybe that is my case...i still have to wait until friday to see the oncologist about my PET scan results and tell him about my swallowing but i dont think i will make it that long without having to go to the hospital. losing my ability to eat or drink is pretty life threatening in the short term....its hard enough to deal with having crappy non curable cancer but then not being able to eat is just another hard thing to deal with in itself...Im pretty darn depressed and im barely holding my sanity at this point in time.I had plans for the near future and it feels like it is all getting taken away from me and i cant control it..Im sorry,i know positive things is what people want to hear and believe me its what i want too but i am starting to see the ugly side of this beast and im **** scared...:(

NLMCEM
Posts: 52
Joined: Aug 2010

So sorry to read this Dan. My husband also is having swallowing problems after 1 yr 6 months and having a hard time eating. He never did eat well after surgery, some days he did ok and others not at all. Lately it is more and more not even able to keep his saliva down and he ends up choking and spitting up. He is unable to sleep in bed but maybe 1 night a week. His recliner is usually his bed and in the upright position as even a slight recline gives him trouble. He is dealing with it better then I am. I do pray your scan comes out good and your trouble will ease and you will be able to eat again. You rant all you want! We all love to read the positive things but we all know not everything always works that way at times. I should have read your profile before posting here. Just wondering if you ever had to have the stretching s done? Nino had them every 2 weeks because he could not eat then every month, so far none since March although he is planning to schedule another soon. His scan 3 weeks ago showed what they call nodes in his lungs now but they are too small to be biopsy and his most recent showed 1 of those nodes slightly enlarged but still to small so will have another in 2 months. It scares me that 1 doctor said it is 98% chance it is the ec showing in his lungs, and the other doctor looking at the other 2% that it may just be small cist. He already ruled out infection. We also have plans for the near future and the waiting to find out what is in his lungs is depressing for me. I so understand where your coming from. I do hope you find some comfort you are not a lone and that what keeps me from getting a deep depression is HOPE and that it is so hard to hear Nino choke and see him eating so very little but HOPE that tomorrow will be a better day. Pray you find some comfort to ease all that you are dealing with. Above all I hope you can rest, sleep to keep some energy for what you will be dealing with for the days a head.

DanTheMan
Posts: 24
Joined: Feb 2012

i am very sorry to hear of your husbands condition and everybody elses for that matter that has brought everyone to a site like this.I have my ups and downs and sometimes its harder and sometimes its easier.I dont really look for solutions on here,it just helps to get it off my chest as i know everyone affected by this knows what im going through more then anyone in my family or friends.I have never filled out my profile and i think i should as it only takes a minute.I never had an operation and was treated with chemo twice and radiotherapy for 28 days 2 years ago.Was all good until around march when i started getting small bowel obstruction.After 4 episodes and numerous ct scans,x rays,barium swallow tests they finally operated and found a tumour in my small bowel(i strongly suggested it 6 months ago to my doctors)and now 3 weeks after the op it feels i am having reccurence in my oesophagous...I can only hope that it isnt but i sort of know the symptoms from before...i do still hope and prey that if it is i can have a positive result from chemotherapy or have a stint placement or something that just gives me more time and a better quality of life..I am not ready to leave this world and be damned if i am going to go without a fight.At the moment i am anxious,nervous,scared,angry and not really in a good place but i know i have the abilty to overcome this and find inner peace with it all.I really hope your husband can find some comfort and you get to fulfill your plans...I mean thats what life is all about isnt it?Love,joy,friendships,laughter,good memories,smiling faces!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

So sorry you are having these issues, Dan. Have you thought about calling to get in sooner? Perhaps a visit to the ER can get things moving along faster. I did that with my mom when I couldn't get in to see docs. The ER can get some tests done. Maybe now is the time for a feeding tube to get some nourishment into you.

Call your docs. Consider a visit to the ER.

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Dan,
I am sorry you are having these issues. With all the tests you have had recently and then recovery from surgery you certainly have reason to be stressed. I found that when I was having difficulty swallowing and I because anxious about it, the muscles in my throat would tense up and that would make it even more difficult to swallow. I wonder if it would be helpful to try to get along on a liquid diet until you get a chance to see your doctor about your most recent symptoms.

It could be that some scar tissue or stricture is building up in your throat and you need a dilation to expand that area a bit. If there really is a recurrence there and further treatment is required there is always the option of a feeding tube to provide nutrition while treatment deals with the recurrence.

I am not sure if I would want to wait until Friday for the results of the PET scan. They should have the PET scan results read by now; if you call your oncologist’s office and inform them you are having issues with swallowing perhaps they can at least look at the scan results and let you know what they see. If an endoscopy is required at least then you can get started on getting that scheduled.

If you do have a recurrence, you had a good response before hopefully you will have a good response again, but there is no reason if live in fear until Friday. I would get in touch with your oncologist first thing tomorrow morning and explain your issues.
Hoping you will be feeling better soon.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

mmr19
Posts: 88
Joined: Feb 2010

Dan-
I agree with Paul. You should contact your doctor first thing in the morning and let them know what's going on. My husband did not have surgery either, but has had to have his throat stretched (dilated) when he started having swallowing problems.....just like in the beginning..... since scar tissue can develop from radiation.
At least your Dr can advise what to do and possibly schedule a scope to see what's going on.
Best wishes to you. And you can vent anytime! We can all understand what you're going through. And you're darn right it's scarey.
Marta

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Positive things is what we all want to hear all the time, but unfortunately life isn't always fair. When people come on with good results, I want to celebrate with them, and cry when the results are bad. I know you are scared, it's only natural to be.
I hate the Beast and what it has done to the lives of so many of our EC family.
Praying for good Ct scan results.You might need to let the doctor know about the swallowing before Friday.. You need nurishment to keep your strength up.
Please post how you are doing and also let us know the results On Friday.
Praying for you,
Sandra

BMGky
Posts: 666
Joined: May 2010

Just wondering how you are doing. Let us know. BMGky

DanTheMan
Posts: 24
Joined: Feb 2012

Well i went to the oncology department at the hospital today as i explained to them that i was in pain and my swallowing was deteriating.I didnt see my usual oncologist as i have to wait until friday but i seen another general doctor...my results were in and not good news,tells me the pet scan showed up large uptake in my oesophagous and also in my small bowel where i just had The tumour removed which indicates active cancer in both areas...lol...i was prepared for this mentally,well at least i think i am.....I have read a great deal about recurring oesophageal cancer whether its local recurrence or distant recurrence,i have both..lol.i have to laugh..im trying so hard to keep a positive fight up against this and i know its my best hope of a longer and better quality of life.I almost certainly know my only chance now is with chemotherapy and if that doesnt work then alternative natural remedies are my only option.I am realistic to the fact that this thing is probably going to take my life but i am holding onto hope i can get some positive results and as much time as i can get...its all i can do right now.I think i know what FEC means and i say FEC!

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

But, Dan, there is ALWAYS hope! There are integrative medical treatments that work WITH chemo. My Dad is Stage IV and they originally only gave him FOUR MONTHS to live... four months!! Ugh. That was in August of 2010. There are many things you can do to have a long life with good quality, so NEVER give up!! I will PM you. You are not alone... remember that.

~Jayme

BMGky
Posts: 666
Joined: May 2010

I can't imagine what you are feeling. I guess there is a point where numbness sets in until you pull together and start fighting.

A friend of ours told us this week that his cousin (who has been dealing with recurrent tumors) is still fighting the fight. Seemingly, he's had tumors following EC treatment in both his colon and stomach. As he explained, they were self-contained and surgically removed. He's been dealing with EC for some six years. Our friend says that he is coming back from this last surgery, a little weaker, but moving on.

We all are "Pulling for you." You are in our thoughts and prayers. BMGky

NLMCEM
Posts: 52
Joined: Aug 2010

Dan, So glad you went in to find out and so sorry it was not good news. Hope and keeping the fight going now that you do know. The waiting is the hardiest. Now your Friday appointment can get the ball moving to find out what chemo, how often etc... the plans the goal to help you have a longer and better quality of life. Praying the chemo will shrink this and you will once again be back to eating again and feeling much better. You are in my prayers and thinking about you and everyone who is dealing with this horrible FEC.
As for Nino, we know we have 2 months to enjoy when he has good days and HOPE that the next scan will show nothing getting larger, but as you and everyone knows we have to take it as it comes, a day at a time. Just so glad to have this support and all the information we can get to help us in our battles. A long with our Rants and Complaints and emotions, its wonderful to have friends here who do understand what we all are going through.
Carolyn

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Dan,

I am very sorry to hear that your PET scan indicates potential metastasis. I think when you meet with your regular oncologist he can give you a better understanding of what comes next. If you are indeed Stage IV then chemotherapy is the probable approach. Please remember that PET scans have a way of indicating high update at previous surgical sites. Was the doctor reading the radiologist's report or was he interpreting the results on his own?

I am sure at this point you are a bit numb from the news but know that there are a number of Stage IV survivors here that have gone far beyond their doctor's estimated survival time. I hope your oncologist has a specific plan for you when you meet with him on Friday.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Bailey1459daughter
Posts: 3
Joined: Sep 2012

Of course this is Kelly, Sherri's daughter. I guess I will be here representing my Dad, Jim, unless I too get on someones nerves! When I speak, I will be speaking for my Mom Sherri as well.

Dan, We know how hard this is for you and my Mom would like to hear from you personally. Please check your email. They are all thinking about you on esophagealcancerfighters.com
They didnt have a chance to send their farewells but are thinking about you.

Kelly, daughter of bailey1459

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Thank you for letting us know the results of your PET. I know it had to be so difficult to write it out.
I am so very sorry for this news.
I will be praying for you daily.
I know it is hard to wrap your mind around this but NEVER give up the fight!!
My brother is still in the fight after being told 25 months ago he only had a few months to live and then again this past July that he only had a month to live.
He is no longer on chemo treatments but is taking a natural approach with Essaic tea that he feels is helping him.
There is hope.
Never give up on hope.

Praying!!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Dan, it's so difficult to hear the words you heard, but like all of the above messages said hope is always present. Never give up hope. Keep on fighting and trying new alternatives. Don't give in or up. 5 years ago my SIL was diagnosed with breast cancer, it went away, it came back. It did this 5 times until finally they said it went to the brain. She underwent whole brain rads and she's doing well and still fighting the good fight! She was against all odds and is doing well.

You just keep on fighting. And it's ok to wallow and feel sad and even cry, but then pick yourself up and fight on! Remember, you are Dan the Man!

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

sometimes i think that if it wasnt for bad luck, i wouldnt have any luck at all. hang in there and pray for good luck and at the very least you are ready for the worst. you have the time to to right the wrongs and forgive who needs forgiveness. god be with you. i wish you the best of all out comes.

i35chica
Posts: 17
Joined: Dec 2011

Several of your EC friends from the FB site are thinking about you. We are sending healing thoughts and prayers your way. I hope you feel their strength coming to you across cyber space. Several have been band off this site and wanted you to know that they are thinking of you. I am delivering their heartfelt message Cyber hugs from Texas : )

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Sorry, the scan is not looking good.Praying for comfort for you as you digest this latest setback!

Sandra

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