Chemo/Radiation versus Chemo alone

ozchrissy

I am really confused about the need for chemo/radiation therapy before surgery. I am quite happy to go with the Chemo, which I am to begin in 4 days, but I am really having problems with the radiation therapy. To me it seems an unnecessary process, as the surgery will remove all of the known tumor and the surrounding lymph nodes and esophagus and stomach, so why make a mess of the area with the radiation, just to take it out later.

I have already put off an appointment with the radiotherapist, as I really do not want to do radiotherapy. I have a very real aversion to it. I do however have another appointment on the 5th June, so would like to get as much information as possible prior to then.

I now a lot of people on here have gone the chemo/radiation road prior to surgery, and was wondering what their thoughts were on this. To me it seems to be placing a great deal of stress on my body prior to surgery. Only to have the very same area cut out during surgery. I have heard that it can make a mess of the site, and be painful with eating etc. prior to surgery.

I would love to have some input from people who have been down this road, and how they found the treatment.

Guigna

chemo/radiation/surgery
This cancer is one of the most persistent cancers there is.
Many of us have gone with the "three pronged approach" of chemo / radiation/ and surgery only to find that the cancer comes back.
When my husband went into surgery (late october 2011), he'd already had the chemo and the radiation. I remember the jubilant surgeon, who removed 51 lymph nodes exclaiming, "we only found cancer in one node and it was dead" the cancer in the esophagus was all dead too.
But by January 2012, my husband had a new cancer growth on his hip. 1" in diameter. The cancer came back. They started chemo again, and while he was getting chemo, his throat closed up, the cancer came back at the margins.
Doctors are very aggressive with this cancer, because it's nasty. best of luck to you.

that IS a lot of stress on your body prior to surgery. I THink it might have been partially responsible for some of the horrible complications my husband had after the surgery; issues that might not have occurred if his body hadn't been irradiated and chemo'd. THe surgeon wanted to do the surgery before the chemo/radiation, but he was outvoted by the other two guys; because i guess chemo and radiation AFTER surgery makes it very hard to heal.

good luck to you. really. i hope you have a smooth recovery.

BMGky

So sorry you have to deal with EC
This is not a disease to mess with. Time is of the essence. You didn't mention your stage of diagnosis but you are one of the lucky ones who are eligible for surgery. The radiation pinpoints the cancer and tries to destroy it as much as possible and keep it from spreading.. The chemo, this is as I understand, is to kill any ugly cancer cells that are not in the targeted area of the radiation. Frequently, a post chemo/radiation PET will show no evidence of disease. The surgery is done anyway as those little cells can be hiding. This is what was present for my husband following his chemo/radiation. Clear scan but when they biopsied the removed esophagus, EC cells were hiding under the scar tissue of the radiation.

I am not a medical person. You should be working with an oncology team and get full information. Yes, he had to have a feeding tube. Yes, he was hospitalized during treatment. Yes, he had much trouble eating from the chemo. Yes, he experienced reduced lung capacity. His doctor told him the treatment is brutual but it is presently the best way to have a chance for no evidence of disease.

My husband enjoys a full life working and playig hard. Eats lots of food but must control amount and avoid excessive sweets and ice cream. He is two years post op and is still testing no evidence of disease.

WE are so thankful he had a chance for a curative treatment.

It is not easy but not to follow your informed, experienced, skilled and esophageal cancer specialist team's instructions risks the loss of your life. It still can go awry, but doing nothing, the outcome is known.

Hope you get to your doctors ASAP. Ask questions and move forward. Again, the treatment is brutal. Hopefuly, you are dealing with a knowledgeable team that can do MIE form. If you want second opinions, fine, but get them yesterday if you know what I mean.

All the best to you and may you be at peace with any decision you make.

ozchrissy

BMGky said:

So sorry you have to deal with EC
This is not a disease to mess with. Time is of the essence. You didn't mention your stage of diagnosis but you are one of the lucky ones who are eligible for surgery. The radiation pinpoints the cancer and tries to destroy it as much as possible and keep it from spreading.. The chemo, this is as I understand, is to kill any ugly cancer cells that are not in the targeted area of the radiation. Frequently, a post chemo/radiation PET will show no evidence of disease. The surgery is done anyway as those little cells can be hiding. This is what was present for my husband following his chemo/radiation. Clear scan but when they biopsied the removed esophagus, EC cells were hiding under the scar tissue of the radiation.

I am not a medical person. You should be working with an oncology team and get full information. Yes, he had to have a feeding tube. Yes, he was hospitalized during treatment. Yes, he had much trouble eating from the chemo. Yes, he experienced reduced lung capacity. His doctor told him the treatment is brutual but it is presently the best way to have a chance for no evidence of disease.

My husband enjoys a full life working and playig hard. Eats lots of food but must control amount and avoid excessive sweets and ice cream. He is two years post op and is still testing no evidence of disease.

WE are so thankful he had a chance for a curative treatment.

It is not easy but not to follow your informed, experienced, skilled and esophageal cancer specialist team's instructions risks the loss of your life. It still can go awry, but doing nothing, the outcome is known.

Hope you get to your doctors ASAP. Ask questions and move forward. Again, the treatment is brutal. Hopefuly, you are dealing with a knowledgeable team that can do MIE form. If you want second opinions, fine, but get them yesterday if you know what I mean.

All the best to you and may you be at peace with any decision you make.

Brain in overdrive at the moment
Thank you for your comments, I am starting to become better prepared for the radiation. I just seem to think that it was unnecessary, but as you all have stated, and as everyone on here keeps attesting to, this is a bad cancer. I intend to approach radiation with an open mind. I start chemo on Thursday, so will discuss all this further with the doctors there. Also due to the delay in starting my cancer therapy, my surgeon wanted to do surgery straight away, but this was not possible due to complications that were found with my heart which had to be fixed first. This has allowed 2 months to pass by since my PET scan, so I am not confident that it has not spread anywhere else. At that stage it was localized to my stomach/esophagus junction only, so stage 1. However the cancer itself was poorly differentiated which means it is an aggressive cancer.

If the radiation therapy combined with the chemo will give me a better chance at survival, then I will go with that. Another reason I have been worried about the radiation is the damage it could do to my esophagus/stomach, as my tumor is in the dura, the junction of the two. I am having a great deal of trouble with pain now, and swallowing is becoming harder and harder every day, so I didn't want to end up with a feeding tube. But if it does come to that, then I will just have to cope won't I. Am really feeling the stress of all this at the moment, but hopefully will be better in a day or two after I speak to more people.

I have a neice who is an oncology specialist nurse, at one of our major cancer centres over here. She is also attached to the University doing research. She has her masters in Nursing and is currently working on her doctorate. I am ringing her tonight to ask her all the questions I have also. I have spoken to her before, but that was while I was getting my heart prepared for all this, but now I am actually starting to undergo treatment and know the drugs and that I will need radiotherapy as well, I will be much better informed and know what I want to know. She will tell me the truth, hopefully without bias.

Thank you so much everyone, to say I am very stressed and frightened at the moment is an understatement, I think the reality of all this has hit home with a vengeance. I am trying to take one day at a time, but it is pretty hard at the moment getting my head around the nature of this particular cancer.

Unknown

ozchrissy said:

Brain in overdrive at the moment
Thank you for your comments, I am starting to become better prepared for the radiation. I just seem to think that it was unnecessary, but as you all have stated, and as everyone on here keeps attesting to, this is a bad cancer. I intend to approach radiation with an open mind. I start chemo on Thursday, so will discuss all this further with the doctors there. Also due to the delay in starting my cancer therapy, my surgeon wanted to do surgery straight away, but this was not possible due to complications that were found with my heart which had to be fixed first. This has allowed 2 months to pass by since my PET scan, so I am not confident that it has not spread anywhere else. At that stage it was localized to my stomach/esophagus junction only, so stage 1. However the cancer itself was poorly differentiated which means it is an aggressive cancer.

If the radiation therapy combined with the chemo will give me a better chance at survival, then I will go with that. Another reason I have been worried about the radiation is the damage it could do to my esophagus/stomach, as my tumor is in the dura, the junction of the two. I am having a great deal of trouble with pain now, and swallowing is becoming harder and harder every day, so I didn't want to end up with a feeding tube. But if it does come to that, then I will just have to cope won't I. Am really feeling the stress of all this at the moment, but hopefully will be better in a day or two after I speak to more people.

I have a neice who is an oncology specialist nurse, at one of our major cancer centres over here. She is also attached to the University doing research. She has her masters in Nursing and is currently working on her doctorate. I am ringing her tonight to ask her all the questions I have also. I have spoken to her before, but that was while I was getting my heart prepared for all this, but now I am actually starting to undergo treatment and know the drugs and that I will need radiotherapy as well, I will be much better informed and know what I want to know. She will tell me the truth, hopefully without bias.

Thank you so much everyone, to say I am very stressed and frightened at the moment is an understatement, I think the reality of all this has hit home with a vengeance. I am trying to take one day at a time, but it is pretty hard at the moment getting my head around the nature of this particular cancer.

This comment has been removed by the Moderator

Guigna

ozchrissy said:

Brain in overdrive at the moment
Thank you for your comments, I am starting to become better prepared for the radiation. I just seem to think that it was unnecessary, but as you all have stated, and as everyone on here keeps attesting to, this is a bad cancer. I intend to approach radiation with an open mind. I start chemo on Thursday, so will discuss all this further with the doctors there. Also due to the delay in starting my cancer therapy, my surgeon wanted to do surgery straight away, but this was not possible due to complications that were found with my heart which had to be fixed first. This has allowed 2 months to pass by since my PET scan, so I am not confident that it has not spread anywhere else. At that stage it was localized to my stomach/esophagus junction only, so stage 1. However the cancer itself was poorly differentiated which means it is an aggressive cancer.

If the radiation therapy combined with the chemo will give me a better chance at survival, then I will go with that. Another reason I have been worried about the radiation is the damage it could do to my esophagus/stomach, as my tumor is in the dura, the junction of the two. I am having a great deal of trouble with pain now, and swallowing is becoming harder and harder every day, so I didn't want to end up with a feeding tube. But if it does come to that, then I will just have to cope won't I. Am really feeling the stress of all this at the moment, but hopefully will be better in a day or two after I speak to more people.

I have a neice who is an oncology specialist nurse, at one of our major cancer centres over here. She is also attached to the University doing research. She has her masters in Nursing and is currently working on her doctorate. I am ringing her tonight to ask her all the questions I have also. I have spoken to her before, but that was while I was getting my heart prepared for all this, but now I am actually starting to undergo treatment and know the drugs and that I will need radiotherapy as well, I will be much better informed and know what I want to know. She will tell me the truth, hopefully without bias.

Thank you so much everyone, to say I am very stressed and frightened at the moment is an understatement, I think the reality of all this has hit home with a vengeance. I am trying to take one day at a time, but it is pretty hard at the moment getting my head around the nature of this particular cancer.

feeding tube
first of all, fantastic news if you are only at stage I cancer! that increases your odds by quite a bit.

Don't stress out about the feeding tube. This is one of the least troubling indignities that this cancer has laid upon my husband. The feeding tube is a blessing. Even when my husband is nauseated (which is unfortunately often) he can easily get calories and water through that thing. WHen he couldn't swallow, he could easily take his medicines. After surgery there were several weeks when he was not allowed ANY by mouth. A feeding tube was a handy thing to have; it kept him alive.

Good luck.

BMGky

Guigna said:

feeding tube
first of all, fantastic news if you are only at stage I cancer! that increases your odds by quite a bit.

Don't stress out about the feeding tube. This is one of the least troubling indignities that this cancer has laid upon my husband. The feeding tube is a blessing. Even when my husband is nauseated (which is unfortunately often) he can easily get calories and water through that thing. WHen he couldn't swallow, he could easily take his medicines. After surgery there were several weeks when he was not allowed ANY by mouth. A feeding tube was a handy thing to have; it kept him alive.

Good luck.

Yay! for J-tube
I nearly panicked when they said my husband had to have a feeding tube. I am so non-mechanical I have to have instructions on how to turn on the stove to cook. (Okay. That is an exaggeration and part of my planned ineptitude to get out of cooking). Anyway, the j-tube is so simple to operate.

My husband had nothing by mouth for over five months. He couldn't drink even water. I tried every possibility I could. He could eat something one day and not the next. Then, the jtube came home with us. He stopped dropping weight drastically, became better hydrated, and kept his strength up allowing him to have the surgery.

I spilled a little when pouring the can into the container and as well as one or another little goofs. All minor. Also, watch the sugar content as he was a Type 2 diabetic and some of the formula mixtures are too sweet. Except when hospitalized, he worked at least part of every day. He got to where he liked not having to stop to eat. He'd work as hard as possible, come home, get set up for the feeding tube and rest and sleep the night away.

If you get where you can't swallow, ask the doctors for liquid forms of the medications. In almost all instances there is an equivalent that can be given as a liquid.

It is a battle. But you keep pushing for the goal of ridding yourself of the tumor. It can get discouraging. My husband had the Ivor Lewis and had to stay in the hospital a month post op due to complications. Then, home, and trying to figure out how to deal with dumping and all that. Hopefully, the knowlegable ones with their absolutely greatest information will fill you in. After six long months, the sun started shining again.

Having given you all the yukky issues you may or may not have to deal with, please know that in our instance at this time, he is working fulltime, travelling, eating (with care), being energetic. As a note, when he first came home, he could not walk from our bedroom to the kitchen without being winded. He now walks all over the place and does what he wants to, granted, mountain climbing is not on the agenda. He's in his 70's and thinks he's a teenager.

Glad you have family that knows what they're talking about. I am just a caregiver that lived alongside the patient. It became our struggle. Keep coming here for information and ask any question. All will be respected.
BMGky