CT, more chemo, no radiation??? Need info please

jss2011

What a week! Hubby had his first CT on Wed since starting chemo 6 wks ago. We meet with the oc on Thurs and he said chemo is working. We were sent out of the office as the surgeon was also there ( we didn't see him) going over the scan results. Obviously alot of mixed emotions while we waited. Haven't even prepared questions for the surgeon yet.
So called back into the office, guess they also got ahold of the radiation dr and were all three going over the results, I was disappointed that we weren't part of this discussion, but here is where we are now:
The tumor is reduced by about 50% so 2 more rounds of chemo (epirubicin, cisplatin, xeloda)
No radiation, they can't get to the node as it is behind the small bowel.
Another ct in 6wks.
The nurse left us a voice mail- doses of the chemo have been increased. Guess this is a good thing? I asked about killing all the cancer cells prior to surgery and yes that is ideal, but the oc has only ever seen this happen once. The oc had also mentioned best results are when you use all 3, chemo, rads, surgery.
So should I be pleased that it looks like my hubby won't have to have radiation or should I be concerned? As long as the chemo is doing what it is supposed to, this is good news right? Guess I just hate all the uncertainty.

Julie
wife of Nicholas
dx mid jun T2N2M0

BMGky

Hmm. I'm a little confused.
Hmm. I'm a little confused. Did I understand that they aren't doing radiation because of the node's location? My husband didn't have node involvement; yet, he had radiation at the same time he had chemo. Then, he had surgery.

The staging suggests your husband has a great opportunity to deal with this cancer and have surgery. I'm not familiar with the Canadian health system. From what I understand from others who post here, as long as you can have surgery following treatment and don't have any spread to an additional major organ, there is hope.

I hope someone else with more knowledge will post with some information for you. I can understand your distress. It is hard enough to be dealing as a caregiver and facing the diagnosis with having to also deal with questions as to course of treatment.

Best of luck to you and to your husband. I hope you get some answers soon. BMGky

Daisylin

BMGky said:

Hmm. I'm a little confused.
Hmm. I'm a little confused. Did I understand that they aren't doing radiation because of the node's location? My husband didn't have node involvement; yet, he had radiation at the same time he had chemo. Then, he had surgery.

The staging suggests your husband has a great opportunity to deal with this cancer and have surgery. I'm not familiar with the Canadian health system. From what I understand from others who post here, as long as you can have surgery following treatment and don't have any spread to an additional major organ, there is hope.

I hope someone else with more knowledge will post with some information for you. I can understand your distress. It is hard enough to be dealing as a caregiver and facing the diagnosis with having to also deal with questions as to course of treatment.

Best of luck to you and to your husband. I hope you get some answers soon. BMGky

Hi Julie,
I'm so glad to hear that his tumours have shrunk!!! That is wonderful news. A reason to celebrate in fact. I have no idea about the radiation, since Lee was never given the opportunity for surgery, I really don't know what the protocol is here in Canada. I hope that since the shrinkage was so large, the radiation won't make a difference. And fingers crossed, that the next rounds of chemo blast those suckers even more!

Hope the chemo is causing few and manageable side effects. I almost wonder if it may be a good thing that he's not having rads. The stronger he is going into surgery, the better!! (just a thought) sounds like radiation takes a lot out of people, and lots of pain and side effects. Guess I'm just trying to see the glass as half full for you!!

Thinking of you,
Chantal

sandy1943

Hi Julie, This is a question
Hi Julie, This is a question I know a little about. I was diagnosed in Nov. 2007 as T3N1M0. I had four rounds of chemo-- Epirubicin,Cisplatin, and a continous pump of 5-Fu. Test before surgey showed the cancer in the lymph nodes were gone and the Ec was shrunk. I had surgery in May 2008. My docter didn't give any radiation. I researched my doctor, a 35 year esophagus surgeon and found a study, he and some more doctors had done. Their 5 year study showed more harm than good with the rad. and that patients survival wasn't any better with the rad. Now I know this is not protocal and I think about it a lot, but I am still cancer free.

I was cancer free when I found this site.It seems I'm the only one that hasn't had radiation, so I questioned my surgeon about it.. His answer was that I didn't need radiation. I have a great team of doctors and I just pray and hope the cancer doesn't come back.

I stay active on here hoping I can be an encouragement to others.

I know what a rough road you're traveling.Know that you are both in my prayers,
Sandra

JimboC

sandy1943 said:

Hi Julie, This is a question
Hi Julie, This is a question I know a little about. I was diagnosed in Nov. 2007 as T3N1M0. I had four rounds of chemo-- Epirubicin,Cisplatin, and a continous pump of 5-Fu. Test before surgey showed the cancer in the lymph nodes were gone and the Ec was shrunk. I had surgery in May 2008. My docter didn't give any radiation. I researched my doctor, a 35 year esophagus surgeon and found a study, he and some more doctors had done. Their 5 year study showed more harm than good with the rad. and that patients survival wasn't any better with the rad. Now I know this is not protocal and I think about it a lot, but I am still cancer free.

I was cancer free when I found this site.It seems I'm the only one that hasn't had radiation, so I questioned my surgeon about it.. His answer was that I didn't need radiation. I have a great team of doctors and I just pray and hope the cancer doesn't come back.

I stay active on here hoping I can be an encouragement to others.

I know what a rough road you're traveling.Know that you are both in my prayers,
Sandra

No radiation for me either
I didn't have it either Sandra. I did 3 rounds of ECF before surgery and 3 rounds after. Tumor went from 8cm to .5cm so it worked well. Sometimes I worry about not having the radiation but so far so good. Granted I'm only 3 1/2 months post op so we'll see how it works out.

BMGky

JimboC said:

No radiation for me either
I didn't have it either Sandra. I did 3 rounds of ECF before surgery and 3 rounds after. Tumor went from 8cm to .5cm so it worked well. Sometimes I worry about not having the radiation but so far so good. Granted I'm only 3 1/2 months post op so we'll see how it works out.

This is helpful to know.
This is helpful to know. Thank you Sandy and JimboC for telling us about the no radiation.

My husband had the radiation, and it was very hard on him. The medical team also tells you about the potential side effects and possible cancer development from the strong radiation.

But, I felt we had no choice. You are so frightened and in shock, and you just hope and pray your doctors know their stuff. We have been very pleased with the medical care he received. I think it was their thinking that this is the most current protocol. However, your alls' experience lets others know there are options that you need to ask about. I didn't know. That's why this Board is so helpful. Just wish all diagnosing physicians would refer the EC families to this resource.

Thanks again. BMGky

bingbing2009

BMGky said:

This is helpful to know.
This is helpful to know. Thank you Sandy and JimboC for telling us about the no radiation.

My husband had the radiation, and it was very hard on him. The medical team also tells you about the potential side effects and possible cancer development from the strong radiation.

But, I felt we had no choice. You are so frightened and in shock, and you just hope and pray your doctors know their stuff. We have been very pleased with the medical care he received. I think it was their thinking that this is the most current protocol. However, your alls' experience lets others know there are options that you need to ask about. I didn't know. That's why this Board is so helpful. Just wish all diagnosing physicians would refer the EC families to this resource.

Thanks again. BMGky

Radiation
I agree with you, BMGky. I, too, had radiation--never had a clue that perhaps I shouldn't. I was very pleased with my entire medical team, and yes, I had the Ivor Lewis. Wasn't even aware of the MIE at the time. However, no doubt I was one of the lucky ones--I had excellent surgeons who did a fantastic job.

It was sure interesting to read that Sandra and JimboC did not have the radiation. Thanks so much for sharing. I have learned tons from being a part of this group. I may not post much, but I sure do read and learn a lot!

By the way, I was diagnosed 2 years ago this month and had my surgery in Feb. 2010. I was Stage III, and so far, so good. I have another CT scan tomorrow and already have scanxiety.

Melinda

chemosmoker

bingbing2009 said:

Radiation
I agree with you, BMGky. I, too, had radiation--never had a clue that perhaps I shouldn't. I was very pleased with my entire medical team, and yes, I had the Ivor Lewis. Wasn't even aware of the MIE at the time. However, no doubt I was one of the lucky ones--I had excellent surgeons who did a fantastic job.

It was sure interesting to read that Sandra and JimboC did not have the radiation. Thanks so much for sharing. I have learned tons from being a part of this group. I may not post much, but I sure do read and learn a lot!

By the way, I was diagnosed 2 years ago this month and had my surgery in Feb. 2010. I was Stage III, and so far, so good. I have another CT scan tomorrow and already have scanxiety.

Melinda

WHY NO RADIATION WITH EC......
Julie,
Great news on the shrinkage!!! Woo Hoo!!
Anyway, I think it is great that he is not getting any radiation from the sound of all the nasty side effects and mount burning and sores and food eating problems ad infinity...he is lucky. Radiation does not shrink it kills, but it also leads to SO may other possible problems, and other cancers of its own later in in life too. Take it as a BLESSING I think.

HERE is what we were told and learned.....About EC and radiation VS. NONE...

IF I had stomach cancer primarily, they would have used radiation and chemo before surgery;

If I had esophageal cancer primarily, then chemo only, no radiation.
The Reason given is that radiation risks too much scar tissue and tissue sensitivity for the surgery and makes recovery times much worse.

Some doctors do both, some do this protocol.
Before I was clearly (to them) stage IV and non-resectable, they wanted to DO radiation, until I was diagnosed as having primary EC. Our radiation oncologist explained that that is the deciding factor at their clinic. Interesting, no?

Also, like someone else noted, there are nodes I have that cannot be gotten to with targeted radiation, like in front of my heart and liver. Those organs do not do well when microwaved, for some reason. Will have to do more research as I have NO idea why you can't irradiate major life-giving organs for goodness sake! LOL

This was a MAJOR cancer center.

Personally, I would want to call UPMC and ask Dr. Luketech what HE thinks, sending pathology if needed, because he is obviously the foremost authority in this area.
That is what I would call a safe bet.

Thought I would share what I have.

God Bless you all,
Eric

Gatoraid

Radiation
I had radiation and was t3n1m0. The radiation was directed at the tumor, not the nodes and it was administered in a very precise way with the latest technology. I experienced no symptoms that I am aware of outside of weakness.

The problem that I have found about gathering information on the internet is that mush information is dated and innacurate. 10 years ago it was believed that all cancer of the esophagus (squamous cell and andenocarcinoma) were treated the same, because at that time we had only a small number of cases of adenocarcinoma. Now it is much more common in the U.S. and research has shown that different treatment is needed. The most common approach is if possible, do both chemo and radiation to kill as many cancer cells as quickly as possible. That doesn't mean that with chemo only you will not be successful.

There is alot of guesswork and differing opinions because of lack of research for this cancer. My surgeon initial told me that I would be better off with lung cancer because they know alot more. That was not exactly a confidence builder.

With your success so far, it looks like chemo by itself was effective treatment for you. The longer you go without reoccurance, the less chance it will happen. Good luck going forward.

Jim

sandy1943

JimboC said:

No radiation for me either
I didn't have it either Sandra. I did 3 rounds of ECF before surgery and 3 rounds after. Tumor went from 8cm to .5cm so it worked well. Sometimes I worry about not having the radiation but so far so good. Granted I'm only 3 1/2 months post op so we'll see how it works out.

Jimbo, Glad to know I'm not
Jimbo, Glad to know I'm not out here alone. I would never tell anyone to not do anything there doctor recomends. This was just me and my doctor. So far the results of treatment has been good, But I have learned to take the good each day. I feel so blessed,but the what if's still creeps into my mind. I think that is true with all us., whether we are still in treatment or not. We have been in a battle with a beast and we all pray to win!

This is why I come on--to hear the different takes on a subject and also to give a little peace of mind to someone going through what i have already went through.
Sandra

JimboC

sandy1943 said:

Jimbo, Glad to know I'm not
Jimbo, Glad to know I'm not out here alone. I would never tell anyone to not do anything there doctor recomends. This was just me and my doctor. So far the results of treatment has been good, But I have learned to take the good each day. I feel so blessed,but the what if's still creeps into my mind. I think that is true with all us., whether we are still in treatment or not. We have been in a battle with a beast and we all pray to win!

This is why I come on--to hear the different takes on a subject and also to give a little peace of mind to someone going through what i have already went through.
Sandra

From what I gathered, Dr.
From what I gathered, Dr. Luketich prefers radiation as well. I saw Dr. Luketich late in my treatment plan so he waited to see my post-chemo PET/CT. If it hadn't come out as well as it had, he was going to prescribe 5 weeks of radiation before surgery. My tumor shrank from 8cm to .5cm so he felt radiation wasn't needed.

My oncologist said that they usually defer to the surgeon as to if the treatment plan is for chemo alone or chemo/radiation. My initial surgeon preferred no radiation. He didn't want to do the MIE on me so I researched and found Dr. Luketich. From what I've read, radiation makes the tissue harder to work with for the surgical team.

You are so right, it really is the what if's. I tell everyone that fighting cancer is as much if not more of a mind game than a physical game. It is so easy to get down but I feel that maintaining a positive state of mind has been a huge help in my treatment plan.

jss2011

Gatoraid said:

Radiation
I had radiation and was t3n1m0. The radiation was directed at the tumor, not the nodes and it was administered in a very precise way with the latest technology. I experienced no symptoms that I am aware of outside of weakness.

The problem that I have found about gathering information on the internet is that mush information is dated and innacurate. 10 years ago it was believed that all cancer of the esophagus (squamous cell and andenocarcinoma) were treated the same, because at that time we had only a small number of cases of adenocarcinoma. Now it is much more common in the U.S. and research has shown that different treatment is needed. The most common approach is if possible, do both chemo and radiation to kill as many cancer cells as quickly as possible. That doesn't mean that with chemo only you will not be successful.

There is alot of guesswork and differing opinions because of lack of research for this cancer. My surgeon initial told me that I would be better off with lung cancer because they know alot more. That was not exactly a confidence builder.

With your success so far, it looks like chemo by itself was effective treatment for you. The longer you go without reoccurance, the less chance it will happen. Good luck going forward.

Jim

Thank You for the info
BMGky, yes it has to do with the location of the node as they can't really get to it for radiation.

Chantal, you really are a glass half full kinda girl GG Thanks for making me feel better
Hubby is really nauseated this time, bad few days around here, but we stay focused thinking the more nausea the more bad cells going, silly I know.

Sandra & Jimbo, ok I feel a bit better knowing others have not had radiation and are cancer free.

Melinda, hope all is clear on your scan!

Eric, what does primary EC mean?
I didn't get the same info on radiation, if I recall correctly, they don't like to do radiation on the stomach due to nausea if it can be avoided? I'm pretty sure that's what the oc said. All the chemo /rads are bad, guess it is an educated guessing game on how much to kill the cancer without doing too much harm to anything else. So I guess no rad is good. As for drs in the US, not really an option for us here in Canada.

The surgeon doesn't like radiation prior to surgery as it makes it harder to stitch, more chance of tissue tearing, just what Jimbo was told.

Jim, thanks for additional info, yes would be nice to see more recent stats, but it backs to the comment that we are a statistic of 1.

And on a positive note, hubby gained 4lbs over the last few weeks and it seems like the nausea of the last few days might be passing, he actually just ate and feels a bit better!

Julie