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WHAT IF--WHAT IF---WHAT IF?????

jeeper1
Posts: 5
Joined: Jul 2010

What if after the six weeks of chemo/rad, the tumor is gone, no more hot spots, the appetite returns, and I don't have the MIE. Has anyone done this and if so, how long before the tumor comes back.

The horror stories I am reading about (post surgery) are not conducive to wanting the surgery.

Even with the surgery, the 5 year survival rate for EC is very low.

Eating nothing but mac and cheese for 5 years does not sound like a nice way to live.

Any responses would be appreciated

Rudy Koop
koopr@aol.com

cjmac49's picture
cjmac49
Posts: 110
Joined: Jan 2010

Rudy,
I was diagnosed T2N0M0 in March 2008. Had chemo and rad. The tumor was dead after that. I had MIE in August 2008. I just had my 2 year PET scan and I am still clean. I asked the same question of my Doctors and was assured that surgery was my best chance for survival.

Recovery from MIE is much easier than with open surgery. It still isn't easy but it can be done. I am fortunate as I can eat almost everything but need to do small meals often. I still have fatigue issues but they are slowly getting better.

All in all I'm doing well and what I have sure beats the alternative.

I'm sure that William will have a bunch of other reasons and a lot of information for you.

Good luck to you.

Jim

cmn412
Posts: 71
Joined: Aug 2010

Thanks Jim.

Glad to hear you pet scan was good after two years.

Everytime a survivor says "its been xxx and everthing is fine" We are not only happy for them but it gives US hope we too will be able to say the same thing one day.

callie

BMGky
Posts: 666
Joined: May 2010

Husband had chemoradiation. Then surgery. Recovery is challenging. Had the Ivor Lewis but as was said about having surgery: "It sure beats the alternative." Until we are told differently, we treat each day as cancer free. Even with the challenges, husband is having many victories if you will and is very active and making plans for more fun. He eats pretty much what he wants. Does not like the frequent small meals but his body lets him know that he should be following the meal schedule. I would read these posts as well as talk to your cancer team. You should have complete confidence in their recommendations. Their decision determines life or death. If they recommend surgery, ask why, and satisfy yourself. Cancer did not appear on my husband's PET scan given following the completion of chemorad. Surgery was still recommended. Biopsy of removed esophagus showed Cancer cells were found underneath scar tissue in my husband's instance.The surgeon got clean borders and all lymph nodes were negative. My husband's oncologist flatly stated, "That's the reason we do the surgery." Best of luck to you.

cmn412
Posts: 71
Joined: Aug 2010

RUDY,
The people here are giving you good advice, Do the surgery.

I like Jim (cjmac49) was diagnosed T2N0M0. The tumor was dead after treatment and I was determined not to have the surgery. I was afraid and could not think of the surgery without crying. I had a horrid picture in my mind of what live would be like if I did. I was wrong.

I did the surgery (MIE) on Feb 5, 2010 and I am at work today and doing well. So I don’t eat Steak or pork chops much. I eat everything else though, just a little less of it. It will be OK.

What if there was just a small amount of cancers cells left and they didn’t detect them and it came back. Next time could be worse. Do the surgery and don’t play with fire. It will be ok

You do have a lot of people here that will help you through it.
God bless and good luck

Callie
Ec survivor 6 months.

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
I had the open surgery and although my tumor and one bad node were dead and almost demolished by the chemo and radiation prior to surgery they still found one node had cancer in it, removed it but did clean up chemo for it and I have had 2 clear scans so far. If I had not had the surgery the hot node would have been spreading its trouble around. Even with the post surgery recovery and struggles, I would always opt for the surgery. I was eating crab cakes after I was discharged, I have had shrimp, pizza anything under the sun. I do not eat too much steak, it has to be super tender but there are very few things I can't eat, just have to eat small amounts. Don't intend to be on mac and cheese. All that I have gone thru is worth the minutes and days I am enjoying with my family. For these moments I would have taken any kind of discomfort, they are the real priceless moments. Give yourself a much better survival chance and get the surgery. take care, prayers for all,
Donna70

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

Hi, I had pre op chemo and in May 2008, the Ivor Lewis surgery. I am so glad I had the treatment I had. I'm now cancer free. No one knows what tomorrow will bring, and I can't live my life on : What If". It's not easy before or after, but it"s worth the whole treatment. I don't eat mac and cheese every day. I didn't have an appetite for a while, but when it came back , it was with a vengence. I love to eat now. There's things I use to not care for that I really like now. You have to try different foods and portion controls, because you have a new stomach and it has to adjust. I don't have much of a problem with anything but milk products and chocolate,and sometimes I can eat these without a problem.
Let's just say, when I have a Ct scan in Oct., the cancer is back, I can look back on over two wonderful years I wouldn't have had without treatment or surgery.My life has so much more meaning to it now. I thank God daily for all he's blessed me with.
This is a hard time for you right now. I know--I've been there. Keep coming to this site. There are so many that can give you answers and encouragement.
My thoughts and prayers are with you, Sandra

jeeper1
Posts: 5
Joined: Jul 2010

Thanks one and all for the encourgement. All answers are appreciated. Sure looks like 100% in favor of the surgery. Sure will miss those thick sirloin steaks.

Rudy Koop

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Good luck --- if you do the surgery try to get a doctor who has done many of the surgeries you don't want someone to practice on you. And don't wait --- while my dad delayed getting his surgery (for various reasons) he went from having the cancer under control in April to having mets to his liver at the end of June and no longer being a surgical candidate. EC is such an agreesive cancer don't delay and even if it looks like everything is fine some of those sneaky EC cancer cells can be asleep or knocked out so to speak in the esophagous. We were told the only sure way to be sure the cancer is gone from the esophagous is to take it out.

Gatoraid's picture
Gatoraid
Posts: 71
Joined: Aug 2010

From what I know, it depends on how much of the esophagus is taken and how small the stomach is. If you don't have any digestion issues, you probably can still have your steaks in smaller well chewed bites. We're supposed to eat that way anyhow. Your doctor wil advise so don't give up just yet. As for your question on the surgery, it is a must. Just stick to your guns and find a surgeon who has definite expertise in laposcopic surgery on the esophagus. It's minimally invasive, safer and has faster recovery.

Good luck

cjmac49's picture
cjmac49
Posts: 110
Joined: Jan 2010

I am lucky in that I can eat steak. I've gone from a King cut to around 4 oz. well chewed. Usually Saturday is steak night in our house. I can also do pork chops but have to really chew them for a while.

So you might not be missing foods - just eating them in smaller quantities.

Jim

hopefulsurvivor49's picture
hopefulsurvivor49
Posts: 32
Joined: Apr 2012

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Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

How long till it comes back? Next week. Or next month. Or never. Everyone is different.

Your PET can show no cancer, but there can be cancerous cells left that will multiply. This is why most opt for surgery, to remove the cells.

The stats you are looking at are old. Now adays, the rate is 50 percent actually survive...

I have to say though, I take great exception to the "eat only mac and cheese" comments ....because this is not accurate. 2 weeks after surgery my husband had a steak with a friend who had his surgery 3 months later.

Layne can eat anything he wants. He eats it in smaller quantities is all.

When people act like it's a fate worse than death to get this surgery, it is really frustrating because that is not the case at all. If you have a good surgeon you should do well. Look at William. He is healthy and happy and would do it again.

Even with the relapse, we would do it again, as well.

But only you can decide. You can't go off the experience of others...you have to consider how you heal and how you think YOU will do.

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

I have to disagree with you on mac and cheese, you can eat anything you want just smaller portions and smaller bites. Yes mac and cheese in the beginning along with other soft foods, but as you heal and your body heals you can eat just about anything. Jeff is now 1 year out and eats anything he wants and had the IVOR LEWIS surgery so his was more in depth, please know everyone reacts differently to surgery and treatment, what was good for one might not be good for the other. No two people are alike so you cant assume you will be on food people tells you about. Is cancer gone forever nobody know! Survival rate? who says you only have 5 Years? My opinion is when GOD is ready to call you home he will you don't have to have cancer to be called home, when its your time you will go. There is many people on this board that cant even have surgery and is happy to be able to spend time with their family.

I wish you the best but sit back and think its your choice

Lori/aka moe58

Bedee
Posts: 24
Joined: May 2010

I too was horrified by the reported surgical outcomes. And, my oncologist didn't recommend the surgery because of the results he'd seen. But, with pushing from my family I went to Univ of Washington where they categorically recommended the surgery. I wasn't convinced and got a third opinion from Mayo @ Rochester - same answer.

I can tell you that I was more afraid of living disabled following the surgery than I was of the cancer. But, a Dr in Seattle said to me, How would I feel if I skipped the surgery, and the cancer came back? I thought about it for a long time, and finally had the surgery at Mayo. That was on April 15, 2010. I returned to work part-time in mid-June and full-time in July.

The drs at Mayo felt I should be eating soft food about 3 weeks after surgery. I couldn't - everything came back up. I was scared, afraid I'd have to have a feeding tupbe all my life. But after about 7 weeks I could eat - not much but a little. And then I could eat more, and now I can literally eat anything I want - steak, ice cream and dairy products, spicy foods - just small portions and not with liquids. Oh - I can't eat soup - too much volume I guess.

I'm not sore, and haven't been for months. I do find that I don't seem to get as much oxygen into my system as before the surgery, but if I stop and deliberately take deep breaths that seems to fix it.

I'm really lucky to have had access to so many caring professionals, and to have the outcome I've had.

I hope this is helpful to you.

debbie

christinagf
Posts: 11
Joined: Jul 2012

Can I ask who your surgeon was at Mayo? My dad will be having his surgery there and we weren't very impressed with the surgeon we met with. Did they offer you a minimally invasive option?

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

I have great contacts at Mayo if you're interested i could find their top surgeon.

Dave

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

I am still in recovery from my surgery June 5. I struggled with the irrational notion if I ignored the problem it would magically disappear. My surgeon does full esphougetomies because in his many years of experience he has found that this cancer develops "skip lesions" elsewhere on the remaining esphogus which is part of the reason it is so agressive. The full esphogus, about the top couple inches of the stomach, and a 7 lymph nodes were removed. The biopsy of those parts indicated that the cancer had been killed in those tissues but having the surgery gives me more confidence that I some good years ahead.

I am a 60 year old woman who was in reasonably good health until the cancer invaded my life.

I had chemo and radiation prior to surgery and that was hard on my body. I stopped eating altogether and was on a nasal feeding tube for at least 3 weeks prior to surgery. I'm still on the food pump but I am starting to eat soft foods during the day, and only using the pump at night. There were a couple minor setbacks, but overall the surgery wasn't as horrific as I thought. I didn't have as much pain as I thoughtI would have and was pretty much off pain meds but the second week. I am getting stronger every day although I still tire easily.

I hope this helps.

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

Thanks for the tip. Guess I assumed since it was near the top of the list it was a recent post. I'll pay closer attention to the dates

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Josie, I have great contacts at mayo if you're interested I could find their top rared surgeon for esophagectamies (spelling, sorry).

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