Post Surgery

Hi,
My name is Kay and I have read this site for many months. For alittle
background, my husband Mike was dx with esophageal cancer 8/07,T3N2M0, stage 3.
He is being treated at the Mayo Clinic in Minn. He had chemo/rad(cisplatin,5FU) and then IvorLewis 12/07. He has been through much
of what I have read on this site.All of you have been fabulous with your advise and knowledge. I have a few questions and would love to hear from you.

1. Mike's 3 monthcheck up is in May and the oncologist wants to do only an x-ray.I thinkit is from waist to chest. We talked with her about a CT scan and shesaid they often pick up benign spots and then they have to pursue themwith biopsies and it worries patients and docs needlessly. She thinks having a CT on his 6 month check would be sufficient. It seems to me that a reoccurrence often happens in the first year, so a CT would bebetter at his 3 month?

2.Mike's appetite is still nonexistant so he has to force everything down.
He can't keep his weight up without the feeding tube. We have recently gone down on the amount hoping to stimulate his appetite. Anyone elsehave this problem and when did your appetite come back.

3.He sometimes gets stomach discomfort in his intestinal area. He had a dilitation 3 weeks ago and that helped a lot to get the food down to the intestines. Did any of you still get this at the 3 month recovery point? We know some of it is the feeding tube but not always.

Thanks for your support and God's blessings,
Kay

hello kay,

  A simple question would i think puzzle your mind or maybe enlighten you. 

  Who is going to worry ? Is it the patient or the Oncologist ?

My answer to this is the patient, we go to doctors to treat our disease  in order to live in a normal and healthy life free from any diseases. It is your CHOICE and RIGHT to avail the best medical services that you can afford. If  you prefer for a CTSCAN and you are comfortable to it then go to that. If this procedure will completely detect the culprit that you are looking for and find remedies to overcome to spread the disease and treat it accordingly.

Lastly ,it is also your RIGHT to go to another medical provider for second opinion.

 

Maybe I can help. My oncologist ordered Pet scans and CT scans at 3 month intervals for the first year after surgery, then I had scans ( Pet & CT) every four months during the second year and now in my third year I have just a Pet scan every six months. I would advise that you get a second opinion or ask why more advanced scans are not being ordered.

As far as problems with eating--I had some of the same problems. With the use of the feeding tube I didn't have much of an appetite. So. after about 60 days I asked the Doctor to remove the tube. My appetite improved, my weight stabilized and after a few months I actually gained weight. In the beginning your husband may have to force himself to eat. Today, 3 years later my weight is at the same level as before treatment and surgery.  

Also, make sure your husband exercises regularly. Six months after surgery I was walking 3-4 miles five times a week. Exercising also will increase his appetite!!

I hope this helps! Call me if you would like to discuss further.

Mark

770 888-3700

 

 

Kay,

I had the Ivor-Lewis done in July 2005 for stage 1 EC - adenocarcenoma.

1. I agree with roughouse. I got CT/PET scans after 3 months and then at 6 month intervals. That's what I would ask for, unless there is a better scan available now. I never had Xrays.

2. I came home with a J-tube, but it was just in case. I didn't have to use it. I can't help there except to say take small bites all through the day. It may sound crazy but spicy food was much more appetizing to me at first. My sense of taste was wacked out for several months. It all came back fine. I can eat anything now that I ate before.

3. I still have some discomfort in the intestine area. It's not really bad, though.

It takes a while to recover. Much longer than you were probably told by the doc's. It depends a lot on the patient's condition going into it. I believe the more you move, as soon as possible after surgery and ever after, the better. I was concerned about being able to eat enough if I exercised, but, believe it or not, I gained more weight when I exercised. It does get better. At this point I am doing fine. I cycle a lot but eat enough to maintain my weight.

Good Luck and KEEP MOVING,

Steve

I had my surgery in Jan 2008 and my surgeon has taken two x-rays one in Feb and another in March and will do a CT in June and then another in Sept and so on. If all is clear then my port will be removed without any additional chemo unless the "BEAST" returns. If I were you I would dictate to your Doctor what you want not what he wants,for you should be calling the shots here and express your feeling to him or her. Good Luck.  Phil A.

Thank you all for your advice!  It was so wonderful and good to know.  Blessings to you all

 

Kay

My husband (70) had chemo & radiation prior to surgery May 07.  All went well although he had to continue with the J tube feedings for about 6 months, during which time he had dilations monthly.  He had problems with scar tissue formation at the connection and couldn't get anything down except liquids for awhile.  Anyway, the appetite problem was solved with MEGACE EC, a liquid used to stimulate appetite.  Unfortunately, just as things were looking up, he fell in Dec and fractured his hip!  Again, all went well after replacement, until Jan when even after all the preventive measures, he threw a blood clot to his lungs.  Fortunately, it was not fatal!  So, now we are hoping there are no more big bumps in the road.   As to CT scans: they do them at least at the 6mos. or more frequently if warranted.  Lab and Dr exam every 3 or 4 mos. 

 I haven't posted anything in quite some time.  So good to read all the advice and ideas from such wonderful people.    Take care!