What a difference 4 years makes!
llamp0922
Member Posts: 40
Four years ago my husband and I were at a place that so many of you sadly are right now. After having a sore throat that dragged on for several months, difficulty swallowing, a primary care appointment and finally the Heimlich due to choking, testing began fast and furiously. On July 12, 2007 an endoscopy ended with the GI doctor using words that didn’t make sense to us. I finally understood the word malignant, in my post-procedure fog and discovered that the doctor believed I had cancer. On Friday, July 13th we met with the GI doctor who confirmed my diagnosis via biopsy: Squamous Cell Esophageal Cancer. Damn, I didn’t even know how to spell Esophagus, how could it be cancerous? I was a 38 year old woman, non-smoker, light drinker meeting absolutely none of the criteria for “typical” esophageal cancer patients. After treatment I discovered CSN and found that so many of us are anything but typical.
I got a second opinion at Mass. General and got bad news at most every junction. The Esophageal Ultrasound couldn’t be done because the tumor was too large and obstructing the passageway so the equipment wouldn’t advance. The thoracic surgeon attempted to place a feeding tube, but couldn’t pass it by the tumor, and while in there discovered that the tumor had left the esophagus extremely narrowed and blocked 50% of my trachea. My oncologist met us in the recovery room to deliver the bad news. Not only was I now inoperable, but now needed surgery to place a feeding tube and also a tracheostomy. There was a good news moment, when the PET scan showed no metastasis, only some lymph nodes close to the tumor lit up. I was staged at 3B (T4, N1, M0) inoperable. It was hard to be hopeful, but I tried to keep positive.
The treatment plan of chemo and radiation, followed by an Esophajectomy was changed to 4 rounds of Cisplatin and 5-FU with 37 (changed to 39) concurrent IMRT radiation treatments. The side effects were really miserable: pain, exhaustion, nausea, vomiting, diarrhea, mucositis, dehydration, multiple pneumonias, and skin infections-really yucky stuff. My doctor described it as “Kicking your butt, and then kicking it even harder the next time.” After 2 rounds of chemo, the ringing in my ears and loss of hearing meant that I couldn’t have any more Cisplatin, but still could do 5-FU. It was a very difficult time. Each treatment meant one step closer to being done, to being well. I worked hard at trying to stay positive. In October I finished up radiation. In November, the final chemo was complete. The tracheostomy was pulled. My g-tube obstructed and was pulled. Scans showed tumor shrinkage. On Thanksgiving I ate mashed potatoes and stuffing (the first real food since late June). My family took a dream Disney vacation in December, and then I got the best news ever: NED (No Evidence of Disease) on December 30, 2007. I am blessed!
For those of you (both caregivers and patients) who are fighting the fight know that there are people out here who don’t know you in an ideal sense, but feel your struggle and offer prayers, support, hope and strength. I tell my story as a celebration since each milestone, holiday and moment is a gift. I also share my experience to offer some hope for those of you starting out or in the throes of treatment. There are survivors of Esophageal Cancer. I pray for the day when all of us celebrate our silver and gold anniversaries.
Peace, Love and Positive Thoughts!
Lisa
I got a second opinion at Mass. General and got bad news at most every junction. The Esophageal Ultrasound couldn’t be done because the tumor was too large and obstructing the passageway so the equipment wouldn’t advance. The thoracic surgeon attempted to place a feeding tube, but couldn’t pass it by the tumor, and while in there discovered that the tumor had left the esophagus extremely narrowed and blocked 50% of my trachea. My oncologist met us in the recovery room to deliver the bad news. Not only was I now inoperable, but now needed surgery to place a feeding tube and also a tracheostomy. There was a good news moment, when the PET scan showed no metastasis, only some lymph nodes close to the tumor lit up. I was staged at 3B (T4, N1, M0) inoperable. It was hard to be hopeful, but I tried to keep positive.
The treatment plan of chemo and radiation, followed by an Esophajectomy was changed to 4 rounds of Cisplatin and 5-FU with 37 (changed to 39) concurrent IMRT radiation treatments. The side effects were really miserable: pain, exhaustion, nausea, vomiting, diarrhea, mucositis, dehydration, multiple pneumonias, and skin infections-really yucky stuff. My doctor described it as “Kicking your butt, and then kicking it even harder the next time.” After 2 rounds of chemo, the ringing in my ears and loss of hearing meant that I couldn’t have any more Cisplatin, but still could do 5-FU. It was a very difficult time. Each treatment meant one step closer to being done, to being well. I worked hard at trying to stay positive. In October I finished up radiation. In November, the final chemo was complete. The tracheostomy was pulled. My g-tube obstructed and was pulled. Scans showed tumor shrinkage. On Thanksgiving I ate mashed potatoes and stuffing (the first real food since late June). My family took a dream Disney vacation in December, and then I got the best news ever: NED (No Evidence of Disease) on December 30, 2007. I am blessed!
For those of you (both caregivers and patients) who are fighting the fight know that there are people out here who don’t know you in an ideal sense, but feel your struggle and offer prayers, support, hope and strength. I tell my story as a celebration since each milestone, holiday and moment is a gift. I also share my experience to offer some hope for those of you starting out or in the throes of treatment. There are survivors of Esophageal Cancer. I pray for the day when all of us celebrate our silver and gold anniversaries.
Peace, Love and Positive Thoughts!
Lisa
0
Comments
-
Thank you
Dear Lisa,
Thank you so much for sharing your story with us. My husband just had his 6 month scan and was NED. I pray he is still NED four years from now! What a battle EC is and you have survived it and are now giving back to us. We need to hear these stories, thank you.
Linda0 -
Hi Linda,linda1120 said:Thank you
Dear Lisa,
Thank you so much for sharing your story with us. My husband just had his 6 month scan and was NED. I pray he is still NED four years from now! What a battle EC is and you have survived it and are now giving back to us. We need to hear these stories, thank you.
Linda
I am always so
Hi Linda,
I am always so happy to hear the good news about NED. You and your husband have had a tough fight. Hopefully it's smooth sailing from now on! Here's to many more happy checkups! Cheers!
Lisa0 -
Best of luck getting the MIEEricalynn said:Positive Thoughts
Thank You for the positive thoughts and for posting your story. It is so nice to hear a positive outcome, I can hear hope & (hopefully) see NED in the future.
Erica
Best of luck getting the MIE covered! Keep up the fight!
You and John will be in my thoughts and prayers!
Lisa0 -
Thank you. Hope is oneBMGky said:Thank you for posting. You
Thank you for posting. You really went through it as so many with EC are doing and have done. It offers hope to all of the EC family.
Thank you. Hope is one thing that all of us have. I always had hope and verbalized to all of my medical team that I was going to make it. I knew that statistics showed survivors-I included myself in those numbers. I know that it isn't as easy as that, but hope was where I started in the fight, and I tried my hardest to never lose sight of that hope.0 -
helloGatoraid said:Glad to hear you're NED
I also was treated at Mass General. May I ask who your Oncologist and surgeon was?
Hi there,
My oncologist is Jennifer Temel, radiation onc Noah Choi, and thoracic surgeon John Wain. The care I got at MGH, from the doctors, nurses, fellows and residents, specialists, to the desk workers and valet parking attendants was nothing short of wonderful. How was your experience? Did you have surgery? How are you doing today?
Lisa0
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