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Optimistic survivors of Stage 3 and 4 adenocarcinoma?

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

Hello all, this is my first post. I am so moved by the posts I have read -- your stories of battling this terrible disease, and struggling with caring for loved ones who suffer from it. Here's my story: I'm a 49 year old female, married, with two kids (ages 15 and 9). Last June, I was diagnosed with Stage 3 adenocarcinoma of the esophagus. I was a very fit and healthy woman, a long distance runner, so this diagnosis was shocking and very surreal. I immediately underwent chemotherapy and radiation, then this past September, I had a minimally invasive esophajectomy, and 17 lymph nodes removed. I am recovering from the surgery, with the most difficult physically being getting used to a new digestive physiology that has decreased my quality of life. But I don't mean to sound ungrateful -- I am so thankful for each day I now have. As the doctors like to say nowadays, there is "no sign of disease." I am optimistic and hopeful that I can live many, many more years and see my children grow to adults, but realistically, who knows. I am looking for survivors who are beating the odds. Are you out there? How long have you been cancer-free? Can you offer some real hope to me? Blessings to each of you.

llamp0922
Posts: 40
Joined: Jul 2010

Hopefulsurvivor,

I am a 4 1/2 year survivor of stage 3B inoperable squamous cell e.c. I was 38 and healthy when diagnosed, the mother of two, happily married and totally shocked. The road through treatment was very difficult. You can read my story by clicking on the about me tab. I have been NED since December 2007, and have just gotten great results from my 4/26/12 CT scans. I remember reading the statistics upon diagnosis and being fearful and concerned, but I always tried to believe that I would be one of the ones who made it. There are survivors in every cancer statistic. Why not me or you? Stay positive and believe! I have lived to see my son graduate from high school and head off to college. I have seen my daughter dress for the prom. I am grateful for those moments, and so, so many others.

I don't think most survivors ever feel that they have ever totally beaten the odds. The diagnosis and fear is still quietly there, but there are people that have survived and thrive. Life, swallowing, and eating is never the same; taking each day for granted is never the same, either. Try to enjoy each day!

Peace, Love & Positive Thoughts!
Lisa

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

I am so happy to hear from you. I, too, have tried to maintain a positive attitude. One of my best friends, a gastroenterologist who helped me navigate the treatment process, said from the very start: somebody has to be in the 20% and it might as well be you. These words have carried me through some rough times. Still, as I read more and more about EC, I can't help but get discouraged. So thank you so very much for responding with your success.
Blessings to you and your family.

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

Dear William,
Thank you for your reply. I am very happy to hear of your 9 years anniversary! I, too, was very fortunate to be in a place (Boston) where I had an outstanding team of doctors, including my brilliant surgeon (Dr. Chris Morse at MGH). Every morning I wake up and thank God for the day. I struggle with the eating, but looking back to September, I am so much better than I was then.

I will take a look at your page. Thank you for your inspiration.

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

Hi William (BTW, that is my 9 year old son's name!),
Yes, you have identified my surgeon, Dr. Christopher Morse. I did not realize he had trained with Luketich. Morse is not only a gifted surgeon, he is caring, and a straight shooter. My husband and I often joke about how even when Chris is saying something difficult to hear, he says it with such gentle conviction that you know it will be true, and you know you can deal with it. To anyone looking for medical help in the Boston area, the rest of my team, also at MGH, is equally amazing: Dr. Alice Shaw (oncology), her Fellow, Dr. Elizabeth Stover (she rotates b/w MGH and Dana Farber now), and my radiologist Dr. Willers.

Thanks for the suggestion about food. I forgot that drinking separately is best. I will get back to that. Yes, sugar is a nightmare for me right now.

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

I, too, had an MIE performed by Chris Morse last September. He’s both a great surgeon and a great guy…and a life long sailor, as am I, so I really liked him when I met him. I was referred to Chris by Dr. Bill Brugge, who is the head of the Endoscopy clinic at Mass General and who did my EUS and staged my cancer. But then I did my homework, which included this board, and when I “heard” William singing the praises of Dr. Luketich and saw that Chris had trained under him I was sold. When we first met him we personally liked him, but I was also impressed with his compassion and his very human approach, which is not always the case with doctors in large hospitals.

My surgery was just over 7 months ago and I eat almost everything I used to eat, just not as much at a sitting. The one thing I have to be careful of, of course, is sugar, but even that isn’t a problem in limited doses as long as I already have something in my stomach…or, as Judy calls it (and I love this!), my stomophagus. Imodium is part of my life now, but that’s a small price to pay. As William has often said, it’s better than having cancer!

Granted, I was Stage 1 and didn’t have any chemo or rads, but right now I have to say life is good, all things considered. You have a lot to look forward to, and with the help of people like Chris Morse and the support of your loved ones and the good folks on this board, you’ll be in good hands.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

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

Hi Bob,
Congratulations to you! I am so happy to hear more good news. Small world -- I saw Bill Brugge today (for a follow-up). He did my staging, and he is also a terrific doctor and great guy. We are fortunate.

I love Judy's term! I may borrow that one!

llamp0922
Posts: 40
Joined: Jul 2010

I was at MGH on Monday getting great news from my team. I have seen Alice Shaw when my oncologist Jennifer Temel was away. My radiation onco was Noah Choi and the surgeon was John Wain. The medical care, from nursing to residents to fellows to oncologists was top-notch. It seems that there is a growing group of us MGH folks here!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hah! That is a great word for what some of you now have. I cannot take credit for that word though. Someone and I'm sorry I don't remember who, called it that on a post here awhile back and I liked it too. It should be in the dictionary because it perfectly describes your new plumbing.

Hugs and FEC,
Judy

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

Welcome Lisa, I was diagnosed Nov. 2007 with stage 111 adenocarcinoma. I had chemo and surgery in May 2008. I am still cancer free. I know I can have a reoccurance,but I won't live in fear. Our time in this life is limited, so why worry.

My quality of life is very good. There are some things that are different. The main complaint I have is sleeping on a wedge. Eating is pretty normal for me now. I don't eat as much as I did before, but I enjoy it as much as I ever did. I have had a few dilations, and my esophagus is still not completely dilated , but by paying attention to how I eat, I have no problems.

You join me in being one of the rarities.This is more of a mans cancer than a womans, and it is a puzzle to me how I could have gotten it. My daughter is your age and it would have devistated me if it had been her and not me.

We are lucky for the stage 111 diagnoses. Our odds are good. Enjoy the children and as you continue to get better, enjoy everyday that God gives you. My life is more precious than it was before.

Keep us updated on your progress,
Sandra

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

Dear Sandra,
I am happy to know your success story. When I heard how rare this cancer is for women, I was astounded. I'm grateful to "meet" another woman with the adeno form of EC.

Thank you for your encouragement. I hope to be able to enjoy eating again some day! A month or so ago, I was watching a travel show on PBS, and when the host cracked his spoon into his creme brulee in Paris I actually burst into tears thinking I would never be able to eat that again.

I thank God every day for the day, and hope for many more. I appreciate your support.

mardigras's picture
mardigras
Posts: 207
Joined: Sep 2011

Welcome to you!!
How we need more survivors here.
I am a carer and my husband was also diagnosed last summer with Stage 3 Ardenocarcinoma.
I'm afraid that his tumour was huge and he was not able to have the MIE. Even so his
operation on 29th February was successful as far as we know and they also removed 29 nodes during his esophajectomy. The closest of these nodes on biopsy proved to have cancer cells in them.
He underwent three months of Chemo prior to his surgery.
He is now rising to the challenge of his altered diet.
We too are hopeful of a positive outcome, even though we know that the odds are not good.
I will pray for you every day as I do for all the brave people on this site.
May God Bless you.
Love and hugs,
Marci x

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

Dear Marci,
Thank you for your note. I am so sorry that your husband is going through this and coping with this dreadful cancer. I will pray for his health and for your strength as caregiver.
Blessings to you both.

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

Hi, I'm not a long term survivor but, I do consider myself a success story none the less. I was diagnosed with very very early adenocarcinoma in November of 2011. My diagnoses was so early I wasn't even staged. Anyway, I had a THE at the University of Washington from a Great surgeon Mike Mulligan. The pathology on my removed esophagus was no cancer found and a couple cant rule out cancer findings. This and the fact that the original cells were only found in the squamous layer of the esophagus I was declared cured, cancer free! My recovery from the surgery has been as my Doc says "stellar". I was back to work piloting boats exactly two months after the surgery. I am leading a fully normal life and feel like I'm 100 percent back to my pre-surgical self. So I consider myself a success story with EC. I also have two cousins who have had EC and both had THE's. One had stage four and ended up being a surgical candidate and he is now six years from his surgery. He also had the same great surgeon that I did. The other had very early stage and he is four years from his surgery. So there is hope and there are success stories all around you. live life and never take your eye off the prize! eat right exercise and live life to the fullest.

Dave

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

Dear Capt. Dave,
Thank you for sharing your success story -- and those of your cousins -- with me. I am uplifted to hear there is hope to beat this cancer. Continued good health and blessings to you and your family.

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

Dear Hopeful,
As others have attested to, there are many survivors here and we are living fully functional lives. I was Stage III squamous cell with one positive lymph node, had the full chemo and radiation and then the open esphagectomy with 3 incisions, had one positive node at surgery, did post op chemo. Now have been having all negative CT scans. Did have some bumps after all this, it took about 7 months before I started feeling normal. Had a long time on the j tube and some lung damage but I am happy and doing well. You will too!! In fact, I am doing too well in the food department, it took about almost a year from surgery for me to gain any substantial weight, now I have to watch it. So, your eating will improve, it just takes time and patience. This is the place where hope is nourished and encouraged and everyone here will answer questions and give any input that they think you can use. As everyone told me, just be patient, one step at a time. Welcome to our board!!
Donna70

TinasVoice's picture
TinasVoice
Posts: 10
Joined: Apr 2012

Hi,
It helps to hear from other survivors. I am scheduled for surgery next week, May 8th. My story is complex. I will have an esophagectomy and laryngectomy at the same time. My anatomy complicates everything, as you can imaging reading my story. I'm 51, and this also came as quite a surprise in the beginning of January 2012. I was strong, did not have any of the typical symptoms, exercising several days a week at the gym, feeling fine. I remain positive and strong, I have been able to eat and maintain my weight. It will be a new
world for me next week, I will have so much to learn. I welcome you and everyone in these discussions to continue this well needed communication.

Tina

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

Dear Tina,
Your fitness will help you so much through recovery from surgery. It sounds from what I read on your profile that you have squamous EC (not adeno -- different parts of the esophagus, different tissue, different treatments, prognosis, etc.), so I don't know anything about what to expect from your upcoming surgery, but I do know that being otherwise fit and strong will help you recover. Are you happy with your surgeon and doctors?

I am happy to hear you are staying strong and positive -- both are so important to treatment and recovery.

Blessings to you.

TinasVoice's picture
TinasVoice
Posts: 10
Joined: Apr 2012

I do have adenocarcinoma, but I also have a complex condition because my Aorta is wrapped around the back of my esophagus and attaches to my heart on the opposite side from normal anatomy. I don't smoke, I did not have any of the typical symptoms: reflux, indigestion, swallowing issues. The MIE surgery is not an option, because my cancer is located in the upper esophagus near the trachea, heart, major vessel area. I have a very experienced Dr. Reisner at Cancer Treatment Centers of America. Three surgeons will be in the OR during surgery, I will be in good hands. I still feel strong, next week will be a new world.
I'm hopeful to be patient with recovery, I will be able to speak again eventually, not the same way, but it can be done. I will use an electrical device to speak right after surgery, then three months after surgery they will place and implant to help with speaking.
Thanks for the well wishes...will continue to stay in touch.

Tina

mabailey48
Posts: 6
Joined: May 2012

I was a 52 year old male in seemingly perfect health in early 2004 when I went in for a routine checkup and admitted to having trouble swallowing breakfast every day. I was diagnosed with stage 4 adenocarcinoma. My tumor was as big as both fists together and I had widespread lymph node involvement. They told me it was too late for anything but palliative treatment but we continued looking for a clinical trial that would accept me.

We got into the Winship institute at Emory U in Atlanta and after 6 weekly chemo cycles and the max radiation I could take, the surgeon said he would give it a try. I had radical surgery in March of 2004. My weight bottomed out at 140 (down from 220). But slowly I began to be able to swallow and every day I got a little stronger.

It has been 8 years now and I'm as strong as a horse again. My weight is 170. My diet is not limited in any way except for volume. I eat about 6 times a day. I still have occasional dumping and rare vomiting but other than that I'm good as new.

Statistics are just that. No one knows who will survive and who won't. My advice to you is simple: do not fear dominate you. Concentrate on others, not yourself. Smile and have fun as if you were never sick. Have courage. If it seems to be killing you, look the cancer square in the eye and tell it, you may kill my body but you can't kill me. My soul, my personality, my individuality is indestructible. If you go out, go out like a warrior. Make people remember you as a happy warrior who never gave up, never complained, and never blamed God. Don't be angry, be brave. You can beat this.

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

mabailey48,
What a wonderful and upliftin story. Thank you for sharing it, and for the pep talk. I am so inspired by you and the others I have "met" on this site.

JDO
Posts: 1
Joined: May 2012

I signed up today for this site after my father was given the news this morning that at 55, he likely has stage IV EC. He has not had a PET Scan yet, but based on a CT Scan that showed 2 lymph nodes enlarged in his abdomen the oncologist said that it was Stage IV and he would receive palliative treatment only. My father and my family were stunned; he developed symptoms 1 month ago and prior to that was a healthy guy. We were told there was no hope for cure and no hope for remission, that he would need chemo every month until he died. Reading your story has given me hope; we are not quitters and plan to fight this. I am glad to read about others who have faced this with such strength and had positive outcomes. I shared your story with my father, and he was moved as well. Thank you!

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

It's so great to revisit this site and reread the success stories. Sometimes I get incredibly sad wondering how much time I have left with my mother but when I read posts like these, it gives me hope again even though it's a bit smaller than it was 5 months ago. Thanks to everyone for resharing your success stories.

mabailey48
Posts: 6
Joined: May 2012

I had my treatment (chemo, radiation, and radical surgery) in Q1 of 2004. The first two years after were a struggle but things have gotten steadily better since 2007. The quality of life issues (constant vomiting, inability to eat much, enduring pain when you do eat too much, unpredictable dumping of the digestive system) do improve over time. Be patient and try not to get preoccupied worrying about yourself. Try visiting your old treatment locale and visiting with strangers with cancer. Anything to shift your focus from you to others. Good luck!

nickgunboat's picture
nickgunboat
Posts: 37
Joined: Dec 2009

You have every reason to be. Just reading through all the responses you got was quite inspiring, so thanks for getting the ball rolling. I too was diagnosed a stage three. Went through 6 weeks of chemo/radiation followed by an en bloc esophagectomy. This is the type where they take out a bunch of lymph nodes too. Anyway, I am close to celebrating my three year post surgery mark and life is great. I'm feeling better, have learned how to eat better, and overall just enjoying life. This thing can be beaten, people do it every day. One at a time. All the best!

Kirk
T3N1M0
6weeks chemo/rad
enbloc esophagectomy 7/09
Dr Tom DeMeester USC

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

Kirk --
Thank you for your post! I haven't been online in a while, and I was so happy to see your post, and so grateful to hear your positive story.
-- Margaret

monica_sss
Posts: 57
Joined: Dec 2011

Hello,

My Mom was diagnosed in late November 2011. She had 6 weeks of chemo/rads followed by THE surgery in early April. She is almost 2 months past the surgery. She is doing well now and her "pep" is finally returning. She's eating most things, and learning what not to eat (mainly fresh citrus is tough on her). She's finally smiling and laughing again. It's a pleasure to see her like this after what seemed to be a dark cold winter. Her next scan isn't until September, for now she is cancer free and enjoying her second chance.

Coach B's picture
Coach B
Posts: 21
Joined: Apr 2012

I have EC right at distal juction and protrude to my stomo... I am still struggling sending u the private inbox but i dont mind discussing with you about this... I start Cisplatin and 5FU last week and radiation for 5 weeks and 5 days in a row sound similar to yours and but a lil different case... I wud appreciate if we share the info. So u're an avid runner and I am deaf but I teach at public school not at the deaf school and i can speak and sign language as well... but I love to do cardio and weight room because I am PE teacher and Health education as well as coaching HS football and baseball and was coaching wrestling in past... however, I accept that I have EGC and wud like to have your feed back... Looking forward to hear fromyou and have a happy day!

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

Hi Coach,
I am happy to hear from you and share any helpful information I can with you as you start your journey through treatment and to being cancer-free. It does sound like a similar diagnosis. Can I ask where you are being treated, and what your EC was staged at?

By the time I was diagnosed, I had a tumor well into the esophagus wall, and the cancer had spread to some lymph nodes. I was Stage 3, and was told that the goal would be to get through the chemo and radiation, shrink the tumor and nodes, and be a candidate for minimally invasive surgery (esophajectomy). That was one year ago. I had the surgery last September, and although I will be honest, it was tough, and my quality of life is not as good as it was, I am grateful and happy to be on this Earth still with my family.

So, my advice: stay positive. One of my best friends, a gastroenterologist who helped diagnose my cancer, kept telling me, it's a low survival rate, but somebody has to be in the survivor percentage, and it might as well be you! There is research showing that a positive mental attitude helps, so keep telling yourself that you are becoming cancer free every day with treatment.

I would lie on the radiation table every day and close my eyes and visualize the light energy taking the cancer cells out of my body. Try it. It's very calming.

Rest as much as you can. I could not believe how incredibly exhausted I was every afternoon after radiation. I asked why, and the doctor told me that our bodies are working very hard to heal from the radiation. This takes a lot of calories and a lot of energy. I had to nap every afternoon, and I was fortunate enough to be in a position to do that.

Take the anti-nausea meds you are given. Don't try to be tough. They help. Stay ahead of the nausea.

Every time you have an appointment, if possible, take someone with you to take notes. You will be tired and your head will be spinning from information overload. I kept a notebook and had my husband or friends write down what the doctors told me. I also logged my questions in there.

If you have the energy to do light weight lifting, ask your doctor if it's O.K. for you. Honestly, I found that I had very little energy. You are lucky to be fit pre-cancer. That will help your recovery immensely. Also, you will find it easier than most to get active again post-cancer. It took me months after my surgery, but I am now able to do water fitness classes and walk briskly, weight training and spin. Recently, I was able to alternate walking and running on a treadmill. I still don't feel up to running, and I'll never be able to take in enough calories to run more than a few miles, but it feels great to be getting my fitness level back. You will get there.

More advice: ask for help. Accept help when offered. Your friends, co-workers and loved ones want to help you. It is a blessing for both sides. You will need help, and they will feel great to be able to give it.

Finally, if you have a faith, rely on it. Pray, meditate, whatever works for you. I could not have maintained my strength and attitude without God's help.

I hope this helps. Please feel free to reply to this, although I don't get the chance to check the site every day. Here is my personal email of you feel more comfortable writing to me there, or if you need urgent answers from someone who has been there: mcrouse-skelly@comcast.net.

Monday I have my next round of CT scans. I am realistically anxious, but optimistically hopeful they will be clean!

Best to you--
Margaret

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

margaret, Good luck on your scan. Let us know results so we can celebrate with you,
Sandra

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