Esophgeal Cancer - my story.

Ralph Cavalier

My name is Ralph ( 55 years old ) and I was diagnosed with stage 2 esophageal cancer at the GI junction in March of 2015. About 10 years ago I was diagnosed with Barrets disease caused by acid reflux and had been following up with yearly or every 2 year Endoscopy's. However I let the time lapse from 1-2 years to 4 because of sick parents, work, kids , and living life. I had no real symtoms other than some minor bloating after a meal and decided to go get the test. The doctor found a small growth ( andocarcinoma ) told me that they believed that they caught it early. I went for another Endo - Sonar after the initial biopsy to have it staged . The the doctor said the cancer was small was at the bottom of my esophagas slightly rolling into my stomach. He also stated that it looked like one lymph node was enlarged possibly 2. He looked at the dept of the tumor and stated that it was not going through the esophegas. Therefore he staged it at a 2 and would treat it as a stage 3 for precaution. A pet Scan revealed that no cancer had spread to any other organs.  I went through 28 radiation treatments and 6 chemotherapy treatments of carboplatinum and taxol and finished that in May of 2015. After the chemo and radiation I went for another PET scan which showed still no cancer spreading to other organs and the tumor and lymph nodes were smaller but not gone. I was scheduled for an esophajectomy on July 7th 2015. 5 days before the surgery the surgeon went in and took another biopsy of the tumor which resulted in no cancer found at the site. The surgery was performed and was successful. I spent 13 days in the hospital and had to have a stent put in 7 days after the surgery due to narrowing at the connection. This stent has been removed and I am now starting to eat. The tumor and section removed during surgery was sent to pathology for a deeper look. In total 13 lymph nodes were removed along with the tumor. Of the 13 nodes removed,  4 still had signs of cells and were closest to the tumor the other 9 farther out show no cell abnormality. With this said the doctor / surgeon /oncologist now recommend more chemotheray to mop up any cells tht may have traveled .. if any ? My issue is they wanted me to wait 6-8 weeks post OP to start this new regimine. I had to wat 5 weeks for the stent removal and the doctor wanted me to heal for the 8 week interval which is Sept 8th 2015. The chemo will be every 3 weeks and will go for 4 sessions of pretty heavy chemo . This will be ongoing until December 2015. I am still recovering from the surgery and have good and bad days. Not being able to eat the way I used to, using a feeding tube to make sure my weight stays good, thinking about my mortality, and thinking of going through another chemo treatment is wearing on me. For the most part I remain positive but the longer I go through this the harder it seems to get.  I just pray to God for a good outcome at the end of chemo and to start feeling more like myself. I just want to get back to work and back to my routine . Things are going to be different but hopefully I can have some more years to spend with my family. Any thoughts will be apreciated . Also does this 8 week time lapse seem too long ? - Im just following doctors orders . I just want to get this ball rolling and get it over with. Thanks and God Bless. 

LorettaMarshall

You can make it Ralph!

 

Hello Ralph,

 

You’re not alone, and we all know how devastating this diagnosis can be.  And yes, it can wear you down.  Like you say, you have followed the doctors’ orders.  “Waiting” can be stressful, but your wait time will be over in just 13 days.

 

What you need most now is a “good dose of encouragement” from others who have stories similar to yours.  More than one has had to have a “clean-up” chemo session AFTER their surgery.  Let’s be honest, recuperating from an Esophagectomy is enough in itself.  And then, to know that you must face more chemo is always a disappointment.  But Ralph, you “gotta” take the long look.  Think of how nice it will be to “return to a new sense of normalcy.”  I use that word advisedly, because all Esophageal Cancer survivors adjust to a “new way of life” but are happy to know that there is “life after an Esophagectomy.” 

 

You didn’t tell us what type of an Esophagectomy you had.  Would it have been an Ivor Lewis Esophagectomy?  If so, that would be the reason your doctors would want you to wait because it takes longer to heal from one of the more invasive Esophagectomies.  You do need to regain some strength so I wouldn’t suggest trying to ditch the feeding tube any time soon for two reasons. One—because your food intake at this point is limited, and two—you never know how your body will respond to the post-chemo.  At least you aren’t having more radiation.

 

There are success stories here, and I have one to share with you.  My husband, William, was diagnosed at age 66, with Esophageal Cancer (Adenocarcinoma at the GE junction) Stage T3N1M0.  The cancer had penetrated all four walls of his Esophagus and two local lymph nodes.  He underwent pre-op chemo of Carboplatin and 5-FU, plus 25 radiation treatments.  He then had an Ivor Lewis Minimally Invasive Esophagectomy (MIE) which consisted of 7 small cuts that could be covered with a bandaid.  Twenty-three lymph nodes were removed for analysis and none proved to be cancerous, so no post-op chemo was recommended. Surgery was performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003.    

 

We are now entering his 14^th year of survival.  He had another PET/CT scan and we got the results on Thursday, August 21, 2015.  “No Evidence of Disease” (NED).   So take it from us, your strength can be renewed, and you can return to the things you like to do, and to spend time with your family and friends.  Some things will never be the same—like taking life for granted.  After all, we really are “living on borrowed time, and you will never take good health and life for granted once you’ve had Esophageal Cancer.  We thank God for the extra years HE has given us, which early on we never dreamed were possible.  This can be your story too, Ralph. 

 

Many here are familiar with a saying that is so true.

                              “Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.” 

 

Right now, you’re a bit water-logged, but cheer up—take heart.  Remember you gotta’ go through the rain if you want to see the rainbow.

 

Loretta (William’s wife)

 

paul61

My cancer story was very similar to yours

Ralph,

My journey with cancer was very similar to yours. I had no particularly significant symptoms other than recurrent acid reflux and occasional hiccups when I first started eating. I went to my primary care physician because I decided it was about time to get some of that omeprazole medication I had been hearing about from my friends. Constantly taking Tums was getting old.

Luckily my PCP decided to be thorough and sent me to get and endoscopy “just to be safe”. The endoscopy showed a small polyp shaped growth at the bottom of my esophagus extending into my stomach. I was then sent to get a CT scan that showed no abnormalities elsewhere, and I had an endoscopic ultrasound that showed no penetration of the esophagus by the tumor. They felt I was Stage 1 or possibly Stage 2; so I went directly to surgery.

On December 3, 2009 I had Ivor Lewis surgery and was in the hospital for 12 days. My stay was extended for three days because I contracted a hospital infection in both of my major incisions and that required two days of IV antibiotics to clear. I went home with two large open incisions and a “j-tube” for nutritional support.

Unfortunately for me, the pathology from my surgery showed one of the lymph nodes removed had active cancer cells. So I was now re-staged as Stage IIB and would be treated as Stage III. This indicated that I would need to complete six rounds of chemotherapy over a five month period AFTER surgery. I have to admit, when I got that news while lying in bed attempting to recover from surgery, I was very concerned about my ability to complete an extended period of chemotherapy.

My surgeon suggested I take eight weeks to recover from surgery so I began my chemotherapy in mid-February of 2010. I have to admit, completing my chemotherapy was not easy, but it was survivable. So far, five and a half years later my scans have been clear.

Some lessons I learned from my post-surgery chemotherapy:

 

1. Don’t give up your “j-tube” until after you have completed your chemotherapy. As I recovered from surgery I was using my “j-tube” less and less so I had it removed about 6 weeks post-surgery. When I started chemotherapy I found staying adequately hydrated was a challenge. Keeping my “j-tube” would have made both hydration and nutrition much easier to manage.
2. If you still have incisions healing; the healing process will slow dramatically when you start chemotherapy. Don’t panic, they will heal, it will just take longer. The major incision on my back healed completely about the same time I completed my chemotherapy about eight months after my surgery.
3.  Hydration is a challenge because most of us who have esophagectomy with pull up have “dumping syndrome” after surgery. It does get better with time; but the combination of learning to manage our new stomaphagus, and the side effects of chemotherapy (diarrhea) make hydration an issue. My chemotherapy consisted of a bolus infusion of Cisplatin and Epirubicin every three weeks on Monday; and continuous infusion via personal IV pump of 5FU. I found that if I scheduled IV hydration the Wednesday after each bolus infusion I felt much better and was able to manage the side effects much more effectively.
4.  I also found that during the week after each bolus infusion if I took a medication called Lomotil to manage diarrhea; I found that if I took it as a precaution prior to each major meal, I did much better.
5.  I was hesitant to make an issue about my side effects with my oncologist because I thought that all people had side effects issues with chemotherapy why should I be different? My oncologist quickly informed me that since I was dealing with both surgical recovery and chemotherapy at the same time they wanted me to tell them about all my issues so they could address them as quickly as possible. So don’t hesitate to talk to your oncologist about side effects even if you had them before when you did your pre-surgery chemotherapy.

So I am not going to try to convince you that post-surgery chemotherapy is easy. It is not. But it is survivable and a good insurance policy for a long term remission.

When I was going through this I had doubts about the need for chemotherapy, “after all didn’t they remove the affected nodes”? I had days when I was not sure I could complete one more round of chemo.

 Luckily I had William and Loretta to tell me “I have been where you are at.” “Hang in there you will get through it and there is great quality of life when you are done.”

So Ralph:

I know more chemo sounds daunting. It did for me. But I have been where you are now.

Hang in there you will get through it and there is great quality of life on the other side.

Wishing you the best as you move forward with your treatment.

If you wish to talk; send me a private message, and I will send along my contact information.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

slpmom

Ralph - my husband is 49 and

Ralph - my husband is 49 and had his surgery on July 15th (Ivor Lewis). He was Stage 2 but they upped it to Stage 3 after surgery - it was not in the lymph nodes but it was found in the blood vessels leading to the lymph nodes. We were originally told "we got it all - its not in the lymph nodes" by the surgeon, only to be told a few weeks later by the oncologist that because it was in the blood vessels, he would need more chemo after surgery. My husband is very ill right now with severe dumping syndrome. He even gets dumping from the j-tube feeds. We are looking into changing the formula. My husband is going through a depression right now because he cannot imagine going through more chemo with all the pain/nausea he has. I keep telling him about all the wonderful people on this site who have been there and gotten through it. I know you will get through this too. Like you, my husband just wants to go back to work and get on with his life. His surgical wounds have healed but they are waiting for him to not be so sick and get a better grip on nutrition before they start anything. Maybe you will both be going through it at the same time. Let us know how you are doing, and hang in there...

NLMCEM

slpmom said:

Ralph - my husband is 49 and

Ralph - my husband is 49 and had his surgery on July 15th (Ivor Lewis). He was Stage 2 but they upped it to Stage 3 after surgery - it was not in the lymph nodes but it was found in the blood vessels leading to the lymph nodes. We were originally told "we got it all - its not in the lymph nodes" by the surgeon, only to be told a few weeks later by the oncologist that because it was in the blood vessels, he would need more chemo after surgery. My husband is very ill right now with severe dumping syndrome. He even gets dumping from the j-tube feeds. We are looking into changing the formula. My husband is going through a depression right now because he cannot imagine going through more chemo with all the pain/nausea he has. I keep telling him about all the wonderful people on this site who have been there and gotten through it. I know you will get through this too. Like you, my husband just wants to go back to work and get on with his life. His surgical wounds have healed but they are waiting for him to not be so sick and get a better grip on nutrition before they start anything. Maybe you will both be going through it at the same time. Let us know how you are doing, and hang in there...

dumping from feeding tube

My husband had this problem so we lowered the rate down. The nurse wasn't happy but it worked to get his body use to it. We slowly raised the rate and there were times we lowered it back down...