esophageal cancer recurrence
Comments
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This site is helpful
I'm very sorry to hear you are facing this cancer again. There are some here on the site that have experienced a reoccurrence. I'm sure they will post soon. Just thought I would say hello, glad you found this site as it has been helpful to many, including me.0 -
Unfortunately, we have experience
My husband was diagnosed in October 2009, and like your husband had chemo, radiation and then surgery in February 2010. We found out on Christmas Eve 2010 that the cancer was back, this time in his thyroid and a node in his neck. He did more radiation and has been on chemo since December.
What's your oncologist proposing at this point? I've heard good things about cyberknife. Maybe get a second opinion on whether or not it's an option? Otherwise I would imagine more chemo is the next step.
I'm so sorry that you are having to deal with this again and will keep you and your husband in my prayers.
Mary0 -
Esophageal Cancer Reoccurencemruble said:Unfortunately, we have experience
My husband was diagnosed in October 2009, and like your husband had chemo, radiation and then surgery in February 2010. We found out on Christmas Eve 2010 that the cancer was back, this time in his thyroid and a node in his neck. He did more radiation and has been on chemo since December.
What's your oncologist proposing at this point? I've heard good things about cyberknife. Maybe get a second opinion on whether or not it's an option? Otherwise I would imagine more chemo is the next step.
I'm so sorry that you are having to deal with this again and will keep you and your husband in my prayers.
Mary
Original DX in Nov. 2009. Stage 4. Adenocarcinoma. Chemotherapy only. Recent biopsies showed only dead adenocarcinoma cells. Latest biopsy showed active squamous cells. Back on chemotherapy.
The good news is that Erbitux is more effective against squamous than adenocarcinoma. We'll see how that goes.0 -
Lynn and Paul,
HERE is what I have read many times, regarding recurrence with EC; In Staying with the "no-sugar-coating" honesty rule we all try to live by here, I post this knowing it is NOT encouraging. This is part of what led me to avoid trying to treat my stage of EC at all. Every one of our onco's told us these facts, and that the mortality rate for post-surgical EC is almost 100% at some point, certainly in MY case, save for stage I's. Here it is...
___________________________________________________________________________________________
Becoming an Esophageal Cancer Survivor.
What are the signs you're in remission and how likely is it that esophageal cancer will recur?
By Diana Rodriguez
Medically reviewed by Pat F. Bass III, MD, MPH
"Esophageal Cancer Recurrence Rates and Staying Healthy
How likely your esophageal cancer is to come back depends on the factors of your particular case, including the stage at which you were diagnosed.
"At least 75 percent of the time, esophageal cancer recurs, but it depends on stage," says Hofstetter. "It is completely stage-dependent — if diagnosed in a late stage then esophageal cancer recurs very frequently; in early stages, very infrequently."
Your doctor will tell you how often you need a PET scan, CT scan, or other screening tests to check and see if the cancer has returned. If you do experience cancer recurrence, you can still be treated. However, it is important to consider factors like the type of treatment, likelihood of success, and potential side effects as you and your doctor discuss your treatment plan for recurrent esophageal cancer.
Reducing Esophageal Cancer Recurrence Risk
Even after your treatments, it's important to live a healthy lifestyle — and get regular screenings — to make sure your esophageal cancer doesn't come back.
The same lifestyle risk factors apply after you've been diagnosed with esophageal cancer as they did before, so avoid all tobacco products and heavy drinking to reduce your risk of cancer recurrence. Post-cancer nutrition is also important, so maintain a healthy body weight with a balanced diet rich in fruits and vegetables.
When you are first diagnosed with esophageal cancer, doing your homework on the doctors, treatment facilities, and treatment plans you're considering is one of the best things you can do to increase your chances of successful treatment and reduced risk of recurrence.
"The time to come out of esophageal cancer [disease-free] is the first time through — your best chance of treatment is the first time around," says Hofstetter.
And while it's important to do everything you can to beat esophageal cancer and keep it from coming back, you should know that there are options to consider if your esophageal cancer does recur. Enjoy your success by continuing to live a healthy lifestyle, and make sure you're faithful about regular screenings. And definitely let your doctor know right away if you start experiencing any esophageal cancer symptoms again. Early detection and immediate treatment will always be your best defense against esophageal cancer."
SOURCE: http://www.everydayhealth.com/esophageal-cancer/esophageal-cancer-remission.aspx
___________________________________________________________________________________________
Hope this helps.
-Eric0 -
Thanksbirdiequeen said:This site is helpful
I'm very sorry to hear you are facing this cancer again. There are some here on the site that have experienced a reoccurrence. I'm sure they will post soon. Just thought I would say hello, glad you found this site as it has been helpful to many, including me.
Thanks for welcoming me to the site. I hope all is going well with your husband. This is such a horrible thing for them (and us) to go through.
Take Care and enjoy every day.
Lynn0 -
There is nothing "sugar-coated" about this cancer!chemosmoker said:Lynn and Paul,
HERE is what I have read many times, regarding recurrence with EC; In Staying with the "no-sugar-coating" honesty rule we all try to live by here, I post this knowing it is NOT encouraging. This is part of what led me to avoid trying to treat my stage of EC at all. Every one of our onco's told us these facts, and that the mortality rate for post-surgical EC is almost 100% at some point, certainly in MY case, save for stage I's. Here it is...
___________________________________________________________________________________________
Becoming an Esophageal Cancer Survivor.
What are the signs you're in remission and how likely is it that esophageal cancer will recur?
By Diana Rodriguez
Medically reviewed by Pat F. Bass III, MD, MPH
"Esophageal Cancer Recurrence Rates and Staying Healthy
How likely your esophageal cancer is to come back depends on the factors of your particular case, including the stage at which you were diagnosed.
"At least 75 percent of the time, esophageal cancer recurs, but it depends on stage," says Hofstetter. "It is completely stage-dependent — if diagnosed in a late stage then esophageal cancer recurs very frequently; in early stages, very infrequently."
Your doctor will tell you how often you need a PET scan, CT scan, or other screening tests to check and see if the cancer has returned. If you do experience cancer recurrence, you can still be treated. However, it is important to consider factors like the type of treatment, likelihood of success, and potential side effects as you and your doctor discuss your treatment plan for recurrent esophageal cancer.
Reducing Esophageal Cancer Recurrence Risk
Even after your treatments, it's important to live a healthy lifestyle — and get regular screenings — to make sure your esophageal cancer doesn't come back.
The same lifestyle risk factors apply after you've been diagnosed with esophageal cancer as they did before, so avoid all tobacco products and heavy drinking to reduce your risk of cancer recurrence. Post-cancer nutrition is also important, so maintain a healthy body weight with a balanced diet rich in fruits and vegetables.
When you are first diagnosed with esophageal cancer, doing your homework on the doctors, treatment facilities, and treatment plans you're considering is one of the best things you can do to increase your chances of successful treatment and reduced risk of recurrence.
"The time to come out of esophageal cancer [disease-free] is the first time through — your best chance of treatment is the first time around," says Hofstetter.
And while it's important to do everything you can to beat esophageal cancer and keep it from coming back, you should know that there are options to consider if your esophageal cancer does recur. Enjoy your success by continuing to live a healthy lifestyle, and make sure you're faithful about regular screenings. And definitely let your doctor know right away if you start experiencing any esophageal cancer symptoms again. Early detection and immediate treatment will always be your best defense against esophageal cancer."
SOURCE: http://www.everydayhealth.com/esophageal-cancer/esophageal-cancer-remission.aspx
___________________________________________________________________________________________
Hope this helps.
-Eric
Eric,
Thanks for responding. I read your "about me" page. I can't believe after reading some of the stories how young so many men are. My husband is 54 (53 at diagnosis). I see you are only 43. This caught us totally by surprise, which seems to be a common thread. He was always extremely healthy, never overweight, never any acid reflux or stomach issues, never smoked, and never drank more than an occasional beer! He started having trouble with food feeling like it was getting caught. He mentioned it to the doctor while getting a physical at work and was told to schedule an endoscopy to have his esophagus stretched - very common to have the muscle constrict. Needless to say they discovered the tumor during the scope. He was diagnosed as stage 3 adenocarcinoma. It sounds like you have done a lot of research on this. Have you ever read about any link to environmental exposure? Paul worked with asbestos and coal ash for a number of years and is welder. Because he doesn't have heartburn or acid reflux which seem related to the adenocarcinoma, we wonder where this came from.
It sounds as if you are dealing with this with a very positive attitude. I'm sure that helps your wife and children. I know Paul's attitude has made it easier for us.
Lynn0 -
Thanksmruble said:Unfortunately, we have experience
My husband was diagnosed in October 2009, and like your husband had chemo, radiation and then surgery in February 2010. We found out on Christmas Eve 2010 that the cancer was back, this time in his thyroid and a node in his neck. He did more radiation and has been on chemo since December.
What's your oncologist proposing at this point? I've heard good things about cyberknife. Maybe get a second opinion on whether or not it's an option? Otherwise I would imagine more chemo is the next step.
I'm so sorry that you are having to deal with this again and will keep you and your husband in my prayers.
Mary
Mary,
Thanks for your concern. The Dr. said if it is determined the cyberknife is the best option, he will do it, but he wants to talk to the other doctors to discuss any other possibilities. I think we will probably get another opinion before we decide.
How is your husband handling being on chemo?
Lynn0 -
Hi Lynn-Paul
yes my husband Vince had a recurrence. he was stage 2 in 2009 and had the surgury, with no chemo or radiation offered. 16-18 months later it came back and he had chemo but unfortunately passed away Feb of this year. So he was here 2 years after diagnosis. I am so sorry for both of you . This is a tough tough tough disease and seems to care not ablout age , previous health, or anything else. I wish you a much better outcome in your journey. My heart is with you.
Barbara0 -
Wish I knew..Lynn_Paul said:There is nothing "sugar-coated" about this cancer!
Eric,
Thanks for responding. I read your "about me" page. I can't believe after reading some of the stories how young so many men are. My husband is 54 (53 at diagnosis). I see you are only 43. This caught us totally by surprise, which seems to be a common thread. He was always extremely healthy, never overweight, never any acid reflux or stomach issues, never smoked, and never drank more than an occasional beer! He started having trouble with food feeling like it was getting caught. He mentioned it to the doctor while getting a physical at work and was told to schedule an endoscopy to have his esophagus stretched - very common to have the muscle constrict. Needless to say they discovered the tumor during the scope. He was diagnosed as stage 3 adenocarcinoma. It sounds like you have done a lot of research on this. Have you ever read about any link to environmental exposure? Paul worked with asbestos and coal ash for a number of years and is welder. Because he doesn't have heartburn or acid reflux which seem related to the adenocarcinoma, we wonder where this came from.
It sounds as if you are dealing with this with a very positive attitude. I'm sure that helps your wife and children. I know Paul's attitude has made it easier for us.
Lynn
Lynn,
I sure wish I knew if there was an environmental connection to this horrible EC.
I know I have worked my whole life around lead and asbestos in various forms, but no lung cancer or lead levels that were high, ever.
I do know mine was NOT cause by my smoking as much as I wanted it to be, mine was a result of Barrett's esophagus that went unnoticed and turned into cancer cells.
With no lung cancer or direct lung involvement, I can't see how the asbestos or coal ash would come in to play either.
I try to keep a very positive attitude, since the choice IS mine and what else could I do, be a boob and make EVERYONE around me even more miserable? No way! Life was too short before, and now it's even more precious.
Yes I see we have a few in their 30's here with us now. I am not the baby here. The doctors have told us that the older squamous cell and EC of the past has been declining, but for the last decade, they have seen a marked increase in the cases of young people with adnocarcinoma on the rise, big-time, and they have no idea why.
Yes I have done four months of nothing but research now. I am not afraid of the stats, the good the bad or the ugly. I have always researched anything I have gotten in to and I am certainly "in to" this, like it or not. I like to be informed and not misinformed. I like to know and learn, always have. I have learned more from the others on this site than anywhere else, and it has been the BEST source of links and further information out there for sure.
I wish you all the best on your journey and we are all in this together, so lets help each other out is my attitude.
I wish you a peaceful weekend and hope you find the answers you seek, and there IS hope here, along with the truth.
I know I did.
-Eric0 -
Sounds familiarmrsbotch said:Hi Lynn-Paul
yes my husband Vince had a recurrence. he was stage 2 in 2009 and had the surgury, with no chemo or radiation offered. 16-18 months later it came back and he had chemo but unfortunately passed away Feb of this year. So he was here 2 years after diagnosis. I am so sorry for both of you . This is a tough tough tough disease and seems to care not ablout age , previous health, or anything else. I wish you a much better outcome in your journey. My heart is with you.
Barbara
Hi Lynn,
It sounds like your Paul and I are on a very similar path. I was diagnosed with stage 2b in 7/2010. I had pre-op chemo and radiation followed by the MIE in 11/2010. My first follow up CT scan at five months out (4/11) was clean my second follow up CT scan (8/2011) showed a swollen node in my neck on the windpipe (paratracheal lymph node). The CT was followed by a PET that showed up-take in the suspicious node and then confirmed with a biopsy. We’re also at the same point as you in regard to weighing our options and then we’ll make the decision on how to move forward. I believe there would be value in you and I comparing what options we a presented with over the next few weeks. Please send me a PM if you are interested.
Best regards,
Joel0 -
Absolutely ~ InterestedJoel C said:Sounds familiar
Hi Lynn,
It sounds like your Paul and I are on a very similar path. I was diagnosed with stage 2b in 7/2010. I had pre-op chemo and radiation followed by the MIE in 11/2010. My first follow up CT scan at five months out (4/11) was clean my second follow up CT scan (8/2011) showed a swollen node in my neck on the windpipe (paratracheal lymph node). The CT was followed by a PET that showed up-take in the suspicious node and then confirmed with a biopsy. We’re also at the same point as you in regard to weighing our options and then we’ll make the decision on how to move forward. I believe there would be value in you and I comparing what options we a presented with over the next few weeks. Please send me a PM if you are interested.
Best regards,
Joel
I'll keep you posted.
Lynn0 -
I was diagnosed with stage 3 OC in July 2010 at the age of 41. I received chemotherapy and radiotherapy before undergoing an oesophagectomy on 29th December 2010. My recovery from surgery went relatively well although I did have three stretches done as the joint between the new stomach joint and remainder of my oesophagus shrank making swallowing difficult. This was resolved in May 2011 and things went well for me....for a couple of months. I returned to work in April 2011 and managed a couple of vacations to Greece with my family and started playing soccer again. I felt well and was putting weight on steadily and life seemed a whole lot better. I then had a scan in September 2011 to check to see if a dark area seen during a baseline scan in March had changed. The scan showed that the area remained stable but there were at least half a dozen small tumours in the fatty tissue below my ribs on the left hand side of my body.mrsbotch said:Hi Lynn-Paul
yes my husband Vince had a recurrence. he was stage 2 in 2009 and had the surgury, with no chemo or radiation offered. 16-18 months later it came back and he had chemo but unfortunately passed away Feb of this year. So he was here 2 years after diagnosis. I am so sorry for both of you . This is a tough tough tough disease and seems to care not ablout age , previous health, or anything else. I wish you a much better outcome in your journey. My heart is with you.
Barbara
I was told on 13th September that my prognosis was terminal. I have now seen the oncologist who has said that my only options now are palliative chemotherapy or nothing! He has said that he believes that I have between 6 and 9 months left if I don't receive chemotherapy but may have a couple more weeks if I do.
I have a wife and a 6 year old son and am devastated that I won't be around for them in the near future. Clearly, I want to be around them for as long as possible and will try out the chemotherapy in the hope that it buys me more time. I need to balance that out against quality of life and will have to review this decision after a couple of cycles. I didn't cope with the pre-op chemo and radiotherapy and am worried that I will suffer again.
I am worried, scared, angry and very jealous of those people who seem to live normal lives but I have to cope with this. There is no way out and I can't just ignore it. I am well at the moment and hope that this continues during the treatment as I have up to 8 cycles planned. I hope that those who undergo treatment in the near future have a better outcome than me. In the meantime, I would be happy to communicate with anyone who wants to.
David0 -
Hi DavidQuinny said:I was diagnosed with stage 3 OC in July 2010 at the age of 41. I received chemotherapy and radiotherapy before undergoing an oesophagectomy on 29th December 2010. My recovery from surgery went relatively well although I did have three stretches done as the joint between the new stomach joint and remainder of my oesophagus shrank making swallowing difficult. This was resolved in May 2011 and things went well for me....for a couple of months. I returned to work in April 2011 and managed a couple of vacations to Greece with my family and started playing soccer again. I felt well and was putting weight on steadily and life seemed a whole lot better. I then had a scan in September 2011 to check to see if a dark area seen during a baseline scan in March had changed. The scan showed that the area remained stable but there were at least half a dozen small tumours in the fatty tissue below my ribs on the left hand side of my body.
I was told on 13th September that my prognosis was terminal. I have now seen the oncologist who has said that my only options now are palliative chemotherapy or nothing! He has said that he believes that I have between 6 and 9 months left if I don't receive chemotherapy but may have a couple more weeks if I do.
I have a wife and a 6 year old son and am devastated that I won't be around for them in the near future. Clearly, I want to be around them for as long as possible and will try out the chemotherapy in the hope that it buys me more time. I need to balance that out against quality of life and will have to review this decision after a couple of cycles. I didn't cope with the pre-op chemo and radiotherapy and am worried that I will suffer again.
I am worried, scared, angry and very jealous of those people who seem to live normal lives but I have to cope with this. There is no way out and I can't just ignore it. I am well at the moment and hope that this continues during the treatment as I have up to 8 cycles planned. I hope that those who undergo treatment in the near future have a better outcome than me. In the meantime, I would be happy to communicate with anyone who wants to.
David
I am so sorry that
Hi David
I am so sorry that you have found yourself having to face this again, this disease truly is the most awful beast that does not discriminate and unfortunately is very aggressive. I get your anger, I understand your worries like so many more will on this site.
My husband was diagnosed Aug 2010 with stage ivb at the aged of 44, we have 3 young boys, 14, 13 and 10, he is going with more Chemo in the hope that he will have more time with us, like yourself he is trying to balance quality of life with quantity and we review this on a regular basis. At the moment he is well and enjoying life though as you will find his normal now is not what his normal used to be.
I just wanted to say hi, and welcome you to our online family, if you have any questions or you just want a bit of a rant with people who do get it this is the site for you, I say family because we really do care and support each other we get excited when surgeries go well and those people can get on with their lives, we cry when it all goes horribly wrong and we love funny stories that make us laugh, laughter truly is the best medicine, we exchange information regarding what has worked and what hasn't there are some on here that are truly just about experts and I know they will be on to say hi and pass on gems of information that will help you on your journey.
Once again I am so sorry that your cancer has returned and I hope that you stay well through your next treatments.
Ann0 -
Sorry to hear your newsQuinny said:I was diagnosed with stage 3 OC in July 2010 at the age of 41. I received chemotherapy and radiotherapy before undergoing an oesophagectomy on 29th December 2010. My recovery from surgery went relatively well although I did have three stretches done as the joint between the new stomach joint and remainder of my oesophagus shrank making swallowing difficult. This was resolved in May 2011 and things went well for me....for a couple of months. I returned to work in April 2011 and managed a couple of vacations to Greece with my family and started playing soccer again. I felt well and was putting weight on steadily and life seemed a whole lot better. I then had a scan in September 2011 to check to see if a dark area seen during a baseline scan in March had changed. The scan showed that the area remained stable but there were at least half a dozen small tumours in the fatty tissue below my ribs on the left hand side of my body.
I was told on 13th September that my prognosis was terminal. I have now seen the oncologist who has said that my only options now are palliative chemotherapy or nothing! He has said that he believes that I have between 6 and 9 months left if I don't receive chemotherapy but may have a couple more weeks if I do.
I have a wife and a 6 year old son and am devastated that I won't be around for them in the near future. Clearly, I want to be around them for as long as possible and will try out the chemotherapy in the hope that it buys me more time. I need to balance that out against quality of life and will have to review this decision after a couple of cycles. I didn't cope with the pre-op chemo and radiotherapy and am worried that I will suffer again.
I am worried, scared, angry and very jealous of those people who seem to live normal lives but I have to cope with this. There is no way out and I can't just ignore it. I am well at the moment and hope that this continues during the treatment as I have up to 8 cycles planned. I hope that those who undergo treatment in the near future have a better outcome than me. In the meantime, I would be happy to communicate with anyone who wants to.
David
David -
I'm so sorry that you are dealing with a recurrence. It's something none of us want to deal with but so many are forced to do so anyway. My husband was diagnosed in October 2009 at stage IVa and went through the same process as you. It was 10 months after surgery before he had a recurrence and has now been back in chemo for nine months. We, too, have children (15 and 12) and I know he worries about leaving all of us behind. All the talk on the board lately about stopping chemo has really caused me to think about about whether he continues treatment because he wants to or because he feels like he has to for us. We've had a good talk about it and he's choosing to continue with his current protocol. It's certainly something that we'll continue to evaluate. At this point I think he's just intent on proving that he's going to live for more than a year from the time of his recurrence!
You and your family will be in my prayers as you deal with this terrible beast.
Mary0 -
Lynn & David - I'm so sorry to hear!Quinny said:I was diagnosed with stage 3 OC in July 2010 at the age of 41. I received chemotherapy and radiotherapy before undergoing an oesophagectomy on 29th December 2010. My recovery from surgery went relatively well although I did have three stretches done as the joint between the new stomach joint and remainder of my oesophagus shrank making swallowing difficult. This was resolved in May 2011 and things went well for me....for a couple of months. I returned to work in April 2011 and managed a couple of vacations to Greece with my family and started playing soccer again. I felt well and was putting weight on steadily and life seemed a whole lot better. I then had a scan in September 2011 to check to see if a dark area seen during a baseline scan in March had changed. The scan showed that the area remained stable but there were at least half a dozen small tumours in the fatty tissue below my ribs on the left hand side of my body.
I was told on 13th September that my prognosis was terminal. I have now seen the oncologist who has said that my only options now are palliative chemotherapy or nothing! He has said that he believes that I have between 6 and 9 months left if I don't receive chemotherapy but may have a couple more weeks if I do.
I have a wife and a 6 year old son and am devastated that I won't be around for them in the near future. Clearly, I want to be around them for as long as possible and will try out the chemotherapy in the hope that it buys me more time. I need to balance that out against quality of life and will have to review this decision after a couple of cycles. I didn't cope with the pre-op chemo and radiotherapy and am worried that I will suffer again.
I am worried, scared, angry and very jealous of those people who seem to live normal lives but I have to cope with this. There is no way out and I can't just ignore it. I am well at the moment and hope that this continues during the treatment as I have up to 8 cycles planned. I hope that those who undergo treatment in the near future have a better outcome than me. In the meantime, I would be happy to communicate with anyone who wants to.
David
I am pained and angry that this disease comes back to haunt people that put so much effort into healing. I feel for you and your family.
My husband is less than 1 week out of hospital for esophagectomy. I understand the hope you had for your future. That's where we are now.
Please know that we are all here, caregivers and those with EC, to support you and your family as much as you need or want. We're finding that we have broad shoulders so lean on us.
Blessings and prayers to you all. I wish you peace and quality time with your family.
Terry
Wife to Nick, age 48
dx T3N2M0 05/19/11
THE 09/08/110 -
HER2 test
Lynn,
When you speak to the doctors ask about having your husband's tumor tested for HER2 receptors. If he is one of the lucky ones then there is a drug proticol that seems to give patients some positive results a drug called Herceptin. I know several folks on the board in the past who were Stage IV patients had good results and acheived some valuable extra time and quality of life. Originally this was a breast cancer treatment and has recently been approved by the FDA for treatment in Esophageal Cancer. You may also want to inquire it they can test the tumor for the KRAS mutation --- which may indicate that some other experimental drugs like Erbitux which interfere with the cell mutation or other drugs that block the growth of blood vessils to strave the tumors )targeted gene therapies). There are many new treatments, some experimental, that have been developed over the last few years. My one hope would be that you make sure you go to a major cancer center --- one desingnated as such by the NIH and one that specializes in Esophageal Cancer. You really want to get the best and consult with the best and there are many great centers throughout the country. EC is a monster and you want to make sure you have the options and the A team available --- or at least have the option even if you decided that quality of life is most important and you just seek pallative care. Good luck.
Best,
Cindy0 -
My eyes are filled withQuinny said:I was diagnosed with stage 3 OC in July 2010 at the age of 41. I received chemotherapy and radiotherapy before undergoing an oesophagectomy on 29th December 2010. My recovery from surgery went relatively well although I did have three stretches done as the joint between the new stomach joint and remainder of my oesophagus shrank making swallowing difficult. This was resolved in May 2011 and things went well for me....for a couple of months. I returned to work in April 2011 and managed a couple of vacations to Greece with my family and started playing soccer again. I felt well and was putting weight on steadily and life seemed a whole lot better. I then had a scan in September 2011 to check to see if a dark area seen during a baseline scan in March had changed. The scan showed that the area remained stable but there were at least half a dozen small tumours in the fatty tissue below my ribs on the left hand side of my body.
I was told on 13th September that my prognosis was terminal. I have now seen the oncologist who has said that my only options now are palliative chemotherapy or nothing! He has said that he believes that I have between 6 and 9 months left if I don't receive chemotherapy but may have a couple more weeks if I do.
I have a wife and a 6 year old son and am devastated that I won't be around for them in the near future. Clearly, I want to be around them for as long as possible and will try out the chemotherapy in the hope that it buys me more time. I need to balance that out against quality of life and will have to review this decision after a couple of cycles. I didn't cope with the pre-op chemo and radiotherapy and am worried that I will suffer again.
I am worried, scared, angry and very jealous of those people who seem to live normal lives but I have to cope with this. There is no way out and I can't just ignore it. I am well at the moment and hope that this continues during the treatment as I have up to 8 cycles planned. I hope that those who undergo treatment in the near future have a better outcome than me. In the meantime, I would be happy to communicate with anyone who wants to.
David
My eyes are filled with tears as I read this post. I visit this site everyday..in hope that I hear some strong survivor post which gives strength to all of us surviving through this desease. David... I really hope some miracle happens and you are there with your family and with us for years. My dad was diagnosed with Stage 4 Esophagus cancer in Feb. His fears were same as yours. Like you..even I envy people who are leading a normal life. U are in my prayers0 -
Ann, Mary, Terry and Mishtimishti said:My eyes are filled with
My eyes are filled with tears as I read this post. I visit this site everyday..in hope that I hear some strong survivor post which gives strength to all of us surviving through this desease. David... I really hope some miracle happens and you are there with your family and with us for years. My dad was diagnosed with Stage 4 Esophagus cancer in Feb. His fears were same as yours. Like you..even I envy people who are leading a normal life. U are in my prayers
Many thanks for your kind comments, thoughts and prayers. Throughout this whole process I have kept away from the internet, support groups and networks for fear of misinformation. I simply treated my illness as something that would be sorted out with surgery and after a few months of recovery I would be back to normal albeit eating less but more often. I had hope and focus and almost relished the challenge. I was going to beat cancer. That has clearly changed.
I have now reached the stage where I need help. I now know that I have little or no hope left other than trying to stay alive long enough to be around for my wife and young son for as long as possible. Sure, people are very kind and say that they'll take care of them and make sure that my son doesn't go without but that's my job as his father and I'm not going to be there for him. I'm so sad about this and it hurts me every time I think about it. He now knows that Daddy is sick again and this time will lose his hair. He finds it very funny but isn't aware that I will die as a result of this illness.
Despite my prognosis, I still have a lot of experience on how best to cope with the post-operative phase immediately following discharge from hospital and would be more than happy to share that with anyone who needs it. I found the surgery much easier to cope with than the chemotherapy and would be pleased to pass on my experience to those who need it. There's no need to fear the surgery. It really isn't that bad and mine was the most invasive form to undergo.
I hope that all of those who are experiencing this awful disease, either as a sufferer or a carer get what they want. It's naive of me to hope that all are cured but I really hope that you all get as much quality time as possible.
I will continue to check in as the site really is a friendly place to be and everyone on here has experience of my disease and their information certainly helps me cope.
David0 -
This comment has been removed by the ModeratorQuinny said:Ann, Mary, Terry and Mishti
Many thanks for your kind comments, thoughts and prayers. Throughout this whole process I have kept away from the internet, support groups and networks for fear of misinformation. I simply treated my illness as something that would be sorted out with surgery and after a few months of recovery I would be back to normal albeit eating less but more often. I had hope and focus and almost relished the challenge. I was going to beat cancer. That has clearly changed.
I have now reached the stage where I need help. I now know that I have little or no hope left other than trying to stay alive long enough to be around for my wife and young son for as long as possible. Sure, people are very kind and say that they'll take care of them and make sure that my son doesn't go without but that's my job as his father and I'm not going to be there for him. I'm so sad about this and it hurts me every time I think about it. He now knows that Daddy is sick again and this time will lose his hair. He finds it very funny but isn't aware that I will die as a result of this illness.
Despite my prognosis, I still have a lot of experience on how best to cope with the post-operative phase immediately following discharge from hospital and would be more than happy to share that with anyone who needs it. I found the surgery much easier to cope with than the chemotherapy and would be pleased to pass on my experience to those who need it. There's no need to fear the surgery. It really isn't that bad and mine was the most invasive form to undergo.
I hope that all of those who are experiencing this awful disease, either as a sufferer or a carer get what they want. It's naive of me to hope that all are cured but I really hope that you all get as much quality time as possible.
I will continue to check in as the site really is a friendly place to be and everyone on here has experience of my disease and their information certainly helps me cope.
David0 -
2nd surgery scheduledunclaw2002 said:HER2 test
Lynn,
When you speak to the doctors ask about having your husband's tumor tested for HER2 receptors. If he is one of the lucky ones then there is a drug proticol that seems to give patients some positive results a drug called Herceptin. I know several folks on the board in the past who were Stage IV patients had good results and acheived some valuable extra time and quality of life. Originally this was a breast cancer treatment and has recently been approved by the FDA for treatment in Esophageal Cancer. You may also want to inquire it they can test the tumor for the KRAS mutation --- which may indicate that some other experimental drugs like Erbitux which interfere with the cell mutation or other drugs that block the growth of blood vessils to strave the tumors )targeted gene therapies). There are many new treatments, some experimental, that have been developed over the last few years. My one hope would be that you make sure you go to a major cancer center --- one desingnated as such by the NIH and one that specializes in Esophageal Cancer. You really want to get the best and consult with the best and there are many great centers throughout the country. EC is a monster and you want to make sure you have the options and the A team available --- or at least have the option even if you decided that quality of life is most important and you just seek pallative care. Good luck.
Best,
Cindy
All ~
This site is amazing and filled with such caring people. I have not been on the site for a while as we have been consumed with appointments and decisions. Cyberknife was initially suggested. The doctor agreed to do it although it was very risky because of the location of the tumor if no one else had a better option. Our surgeon said he could not operate. The oncologist did not feel chemo was the answer. We met with another surgeon last week (Dr. Luketich, who is often mentioned on this site. He wants to re-do the surgery and remove the tumor at the end of next month. Hopefully Paul will handle the surgery as well the second time as he did the first.
Lynn0
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