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Just starting on this unknown journey

trentster
Posts: 18
Joined: Nov 2013

A routine endoscopy told us the terrifying news, my husband has this dreaded cancer. It has only been a week and I feel as if I have lived a life time. We have all of the tests in place, except for the PET scan on Monday. We have met with an amazing team and are scheduled to start treatment after Thanksgiving.  I am scared, confused and hopeful. He has Stage 3, a non smoker and drinker. We have an 11 and 15 year old. We are a very positive and strong family. Hoping to stay strong in the coming months. Would love to hear from others going through this.  It is comforting to know there is a support group out there.

Deathorglory
Posts: 63
Joined: Jul 2013

Hello,

 

You're right about the "unknown" part of your journey.  There are a thousand and one different things that might come up and you don't know which of them will hit you and in what way.  Everyone winds up with a different experience, it's not a one-size-fits-all kind of disease.  Whatever you run into, though, it's likely that someone here has had a similar experience and will be willing to offer whatever insight they can to you.

 

Hope everything goes as well as possible for your family,

 

Ed

kellysierra
Posts: 2
Joined: Nov 2013

Hi,

I'm new to this site.I'm new to talking on forums.

My husband has Stage 3 esophagul cancer . He has started raidiation(3 times) and chemo once. He is really having a hard time eating. Has lost alot of weight. He's really having alot of pain with this. He can hardly drink anything without it hurting his stomach. At first when we heard the news(cancer) about a month ago, he was very positive. But just tonight he sounds REALLY down. I'm lost, i'll do whatever I can to help. He's really losing his stregth to fight. He's had very little nutrition.

I'm lost

2013 Esophageal Survivor's picture
2013 Esophageal...
Posts: 5
Joined: Dec 2013

Hi Kelly, I've been through what your husband is enduring, and I believe being REALLY down after 3 radiations and a chemo treatment is normal.  Get prepared, it will pobably get worse depending on how many more treatments he has down the road.  I believe most people go in to this with a positive attitude, but chemo and radiation does strange things to the brain, and no one knows what to expect until "their body" reacts to the medication. I have a friend who had a reoccurrence, and his reaction was, "The good news is that this time, I know what to expect.  The bad news is that "I know what to expect"".

Nutrition?  I know you are scared to death, and whether he tells you or not, so is he!  Is the doctor concerned with his weight?  I went from 195 to 125 and the dr (a very concerned doctor) eventually got to the point where he admiited me for nutrition purposes.  I'm sure they will if they see the need, but ask them specifically if you are concerned. Your husband will never look at "steak and potatoes" (what my nurses called my IV "meals") the same way.

I posted something earlier today about my experience and I'll tell you the same. To take care of him, you have to care of yourself, both mentally and physically.  Find support in your community to help yourself deal with this, so you can be better equipped to help him.  He needs you to be strong Kelly!  You can do this!

Prayers and Support!

Respectfully,

203 EC Survivor 

adamray's picture
adamray
Posts: 4
Joined: Jan 2014

Nutrition and weight loss is the hardest part – the options are tube feeding if really stuck particualrly with radiaton but also ask about Megace or perhaps Dexmethadone short term – it's helped me build some appetite whilst on chemo...

Best of luck

 

paul61's picture
paul61
Posts: 1115
Joined: Apr 2010

I know how frightening it can be to hear “you have esophageal cancer”. I first heard those words in November of 2009. The next three weeks were filled with tests; and the difficult wait for results. The original endoscopy was followed by extensive blood tests, CT scans, another endoscopy with ultrasound, biopsies, and various exams by oncologists and surgeons. It seemed like getting treatment started took forever. All I wanted to do was get the cancer out of me!!!

It has now been four years since that difficult start. I will not suggest that the surgery and chemotherapy that followed were easy; but they are survivable, and I am now back to living my life as before, with some lifestyle adjustments as a result of surgical changes.

Some things I learned as I went through the process:

Getting ready:

  1. Whenever possible have someone attend doctor’s appointments with your husband and have that person take notes. You will hear lots of words you will not understand in a very emotionally charged situation, and it is helpful to have two people listening and recording.
  2. Always ask the doctor to give you a few minutes to review your notes at the end of the appointment to identify any questions or terms that require explanation.
  3. Keep a notebook of all appointments. Ask for printed copies of all test reports and keep them in the notebook for reference in future medical appointments.
  4. Have your husband carry a list of all medications that are prescribed for him and dosages in his wallet. I carry several of them in my wallet on small business card size notes so I can just hand them to medical professionals when they ask for a medication list. Be sure to indicate any medication allergies in red on the card.
  5. Ask if the medical facility where he will receive treatment has a patient portal for access to appointment and test information. If they do it can save a lot of time dealing with administrative items.
  6. The Esophageal Cancer Awareness Network (ECAN) has excellent informational pamphlets on esophageal cancer. Consider contacting them and obtaining some of their informational materials. It will be helpful in telling your family and friends about your battle. Esophageal Cancer is not very common and not well understood even by many medical professionals. For example; there are two kinds of esophageal cancer, squamous cell carcinoma that typically occurs in the upper or middle esophagus and can be life style related (e.g smoking, drinking, etc.) and adenocarcinoma that occurs lower in the esophagus and upper stomach that is not particularly life style related and is often related to a history of acid reflux. Here is a reference for their web site: http://www.ecan.org
  7. Your family and friends will ask how they can help. Don’t be afraid to ask for help with shopping, child care, cleaning, meals, and yard work. You have to be specific; they want to help but don’t know what you need, and don’t want to be intrusive. After spending a long day in testing appointments or at the chemotherapy center you won’t want to spend an hour fixing a meal, having one waiting for you is very comforting.
  8. Ignore the statistics you find about esophageal cancer survival rates on the internet. They are often dated and do not include the impact of recent treatment advances. In addition, each cancer patient has a different age, health profile, and support system background so everyone is a “statistic of one”. A positive attitude is very important. There are lots of survivors of this disease 

 Some questions for your oncologist:

  1. What kind of esophageal cancer do I have?
  2. What is my specific staging T?? N?? M??
  3. What tests have you run, and what tests are available?
  4. Has my tumor been tested for HER2
  5. How many cases of esophageal cancer have you treated?
  6. How advanced is the cancer? Has it spread to more than one area?
  7. Why are you recommending this particular treatment?
  8. Are there other treatment options available for this cancer, and what are the pros and cons of each?
  9. Is there any written material about the recommended treatment that we can take home to read?
  10. What are the goals of this treatment, and what is the success rate?
  11. How long will the treatment last?
  12. What are the risks of this treatment?
  13. What are the side effects of this treatment?
  14. Are there ways to manage the side effects?
  15. How do we know if a side effect is severe enough to warrant calling you?
  16. Is there a number that can be reached 24 x 7 for on call assistance?
  17. What do we need to do to prepare for this treatment?
  18. Is there anything that's important to avoid before or during treatment?
  19. Can you tell us what to expect during treatment -- where does it take place, how long does it last, and is it uncomfortable?
  20. How do patients typically feel after treatment, both immediately afterward and in the days that follow?
  21. Is it a good idea to make certain diet or lifestyle changes, and how can friends and family help with these?
  22. Are there any new treatment options or clinical trials we should be aware of?
  23. What's the best way for us to contact you when we have more questions about the treatment?

  When you are ready to pick a surgeon: 

  1. Esophageal cancer surgery is MAJOR surgery. Make sure you find a surgeon that specializes in esophagectomy surgeries. You do not want a local thoracic surgeon that has done a few of these surgeries each year; you want someone who does MANY of these each year
  2. Consider a second opinion from a National Comprehensive Cancer Network certified facility. These facilities often have access to leading treatment and surgical techniques not available at local facilities.
  3. Here is a reference to the NCCN website: http://www.nccn.org/members/network.asp
  4. Ask your perspective surgeon for the number of esophagectomies he has done, the surgical approach he has used, and his treatment outcomes. There are a number of different surgical approaches, some less invasive than others. Ask your surgeon what approach he will use and why that approach is the best approach for your husband. “I don’t do the other kind” is not the answer you are looking for.
  5. Be sure to investigate the outcomes of the facility where the surgery will be done. Esophageal surgery is complex and the aftercare is important. Here again, NCCN facilities tend to be better equipped to deal with complex recovery requirements.

 I know this is all very frightening at this point, but take one day at a time. There are many of us here who have made this journey and are here to help. If you husband would like to talk with someone who has been where he is, send me a private message on this web site, and I will send along my email and telephone number.

If you are a Facebook user there is also a Facebook page with EC survivors and caregivers that can be a very helpful resource in real time.

 

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 - Three Year Survivor

 

 

 

 

trentster
Posts: 18
Joined: Nov 2013

Thank you so much. We are being treated at Sloan Kettering. We have an amazing team. Yesterday my husband had his medi port placed and we are starting treatment on Monday. He was diagnosed exactly two weeks ago. We are both trying to stay positive and strong. It is Stage 3 and we realize we have a long journey ahead of us. He feels great at this point and his attitude is extremely positive. Taking each day and focusing on the successes.  He is in a clinical trial and are hopeful for a postive outcome. Comforting to know so many are on this journey as well.

dfd24
Posts: 82
Joined: Mar 2011

hello,

Paul61 has a great list to prepare for the treatment. It does help to have things written down and then ask questions when you see the doctors.

It would be interesting if you could give details about the trial and the kind of drugs your husband is receiving.

Wish you all the very best possible .

Danièle

trentster
Posts: 18
Joined: Nov 2013

Hello. 

He is in a national PET scan trial. he is on will be getting his third chemo treatment this Monday. We begin the chemo/radiation daily January 6th for 5 weeks. I worry about the side effects. He is doing very well. Sometimes tired, but has bursts of great energy.  When he is tired he rests. Very good appetite. Trying to stay postive and take each day as it comes. Trying not to look past today, it is hard and becomes overwhelming at times. Let me know if I can give you any more information. Hoping all is well with you. 

JKGulliver
Posts: 82
Joined: Apr 2013

You are being treated at one of the best places in the country.  They have a long and distinguished history of advancing cancer treatment in this country, so you are probably in very good hands. All the best.

trentster
Posts: 18
Joined: Nov 2013

It means the world to me to hear you say that. It is such a scary time. On Monday we begin treatment. The unknown is the scary part. Trying to stay positive and strong. I realize we are on a long road, but staying positive and taking each day as it comes is the only way to move forward.

lornal's picture
lornal
Posts: 254
Joined: Sep 2013

I just started the journey today.  The GI doctor called with the results of Monday's biopsy. Squamous cell carcinoma. 

I had tonsil cancer in 2007.  Now I have to start this all over again.

trentster
Posts: 18
Joined: Nov 2013

I am so sorry to hear about your diagnosis. My husband was diagnosed November 6th. He is receiving Chemo treatments now and will begin the chemo/radiation treamtents January 6th for 5 weeks.  Then 4 weeks off and surgery. We are at Sloan Kettering. Where are you going fo rtreatments? I know it is a diificult and long road. Praying for you. 

lornal's picture
lornal
Posts: 254
Joined: Sep 2013

I dn't know yet where I'll have treatment.  Probably Siteman cancer center in STL for chemo and radiation.  They have several locations - one across the street from work - asuming I'll be able to work some.  Another is close to home.  The main campus is at Barnes-Jewish hospital.  They called this afternoon and said they have my records and are sending them to a medical oncologist - with a "rush".

I have appts w/ 2 surgeons - one from the original tonsil treatment - and one that does esphagus reconstruction - I was going to try to see him in Jan or Feb to discuss reconstruction - but now I"ll see him next Friday for this.

 

ebawa
Posts: 39
Joined: May 2012

 

Hello Trentster,

I strongly recommend that you and or your husband read the book Knockout by Suzanne Somers.  It will open your eyes to the fact that their are many types of treatments besides chemo, radiation and surgery.  I was originally stage III then had mets to my liver, which put me at stage IV.  I did chemo (twice) and radiation but did not have surgery.  I continue to do lots of holistic things to stay healthy and I have been cancer free for 2 years now.

I am not suggesting anyone refuse traditional treatments, I am just presenting additional options.

I believe each person should decide how they want to fight cancer,  I found mixing traditional with holistic treatments were best for me.

 

Take care,

 

Alan

 

Mrs.Mack
Posts: 11
Joined: Nov 2013

I too am just starting on this trip with my father (T2N1M- unknown).  I really find this site helpful. Paul61 is very informative. His question list is very good. I Made a list  - 2 pages (double spaced of course to allow room to write) and I asked every one of them. Then I made a similar list for the surgeon. The biggest thing I can say is dont hesitate to ask your doctors ANYTHING.  I have also since made my dad a 3 ring binder. It has a few pocket folders, calendar, pens, and loose leaf paper. So I can write down appointments, save all the business cards keep, phone numbers, keep our copies of test results and various paperwork, and take notes write down questions etc. There is alot of information that comes at you and lots of appointments.Being organized and getting our plan of action with all these doctors really helps me tamp down my scared feelings. Reading all these stories and talking to our surgeon really keeps me hopeful.

* we/dad were told on a friday close to the close to the end of the business day, "you have cancer, you will need to start chemo and radiation immediately, well set it up" and the dr walked off. I spent all of 3 am saturday morning crying after looking at the statistics. Then I started researching, and then I found this site. Its very scary getting starting, try to get sleep and eat well so you dont get worn out, take snacks with you protein drinks etc if your appointments/wait is long or you have multiple appointments on one day. My dad needs to eat, or rather drink, alot to help just barely maintain his weight and our first day we have had 2 appointments+ the wait times- we didnt bring anything and he went 5 hours without drinking/eating and Nutrition is a big deal with this. We know for next time.

Always ask questions if you dont understand or want more elaboration ask. You cant know enough with this. Have faith. Stay positive. They have came alog way in their research and continue to improve everyday.  Prayers are with you.

trentster
Posts: 18
Joined: Nov 2013

Yes, I agree ask questions. I find myself asking the smallest question and understanding more and more about this disease.  The doctors and nurses have been amazing. Monday we start treatment. It is the unknown that is so hard.  Staying strong and positive is the only way to move forward.  It sounds as if you too are just starting on this long journey as well.  Keep me updated on your journey. My husband loves the Ensure drinks with blueberries, strawberries, honey and almond/coconut milk for breakfast or as a snack during the day.  They are great source of protein! Be well and my prayers are with you too!

Dallas1pd
Posts: 2
Joined: Nov 2013

Sorry this was the attitude - sounds like one of the idiots we used.  

Dallas1pd
Posts: 2
Joined: Nov 2013

My husband was Stage 3 - 5 years ago.  It's going to be a tough journey for all of you, but keep positive and a sense of humor.  Sealed

My husband ended up with 33 radiations and 8 chemos.  Followed by over 25 endoscpies to widen his esophagus because of scaring.  We later saw a thorasic surgeon - and wish we had founf him earlier.  He was awesome and did in one treatment more than the 25 did.

I recommend Ensure Plus for your husband - it saved mine's life.  He lived on it for over a year before he could eat again.

Prayers for you and your family as you travel this road.

 

 

 

trentster
Posts: 18
Joined: Nov 2013

Yes we are staying positive and keeping our sense of humor. It is so important in times like these.  We just had his first chemo treatment this Monday. He came home with a pump and he was able to detach it himself. He is feeling tired today, but has a pretty good appetiite. I have been giving him the Ensure drinks mixed with blueberries, strawberries, almond milk and honey. He loves them.  I am so happy to hear your husband is doing well. That is so wonderful to hear! Hope you have a wonderful Thanksgiving!

Tkincaid2
Posts: 12
Joined: Nov 2013

I'm 46 and female..l am told how lucky I am to have caught this at early stage 2 with no lymph node involvement. I had a portacath placed yesterday (11/26) and will begin treatment on Monday. I will start with 5FU/cisplatin and radiation. I am really trying to keep a positive outlook but sometimes reading the posts make me wonder if I can keep it up. I have spoken with a surgeon at Duke University And am very pleased with our discussion and plan. I dread the surgery but I'm beginning to dread the treatment leading to it just as much. I guess we just need to support each other! My esophageal ca is closer to my stomach. I have an intimate relationship with God which has really helped in the past few weeks! I am married with 2 girls...ages 12 and 20. My mom is a basket case and my dad just said to take a day at the time. I'm a nurse anesthetist and want to continue working full time until the surgery...is that realistic? 

trentster
Posts: 18
Joined: Nov 2013

Hi. So sorry about your diagnosis, but how wonderful you are starting immediate treatment. My husband just started chemo treatments. He will continue for 6 weeks and tgen do a chemo/radiation combo. please let me know how you are feeling. You are young and will be successful in besting this. I know it is overwhelming. i feel positive thoughts and taking each day helps. We are bew to this as well. Only three weeks since the diagnosis. Sending you prayers and hoping everything goes well on Monday for you. 

Tkincaid2
Posts: 12
Joined: Nov 2013

I will be praying for your husband as well! I am praying for more good days than bad but I agree....a day at the time! 

trentster
Posts: 18
Joined: Nov 2013

Thank you. It Can be so overwhelming. Taking each day at a time is the only way to deal with it. I know it is hard around the holidays. I am praying for you as well. 

2013 Esophageal Survivor's picture
2013 Esophageal...
Posts: 5
Joined: Dec 2013

Nothing is unrealistic until you get started and see how it effects you.  I was given the same "formula" and I wasn't able to keep up my work on a consistent basis, but that doesn't mean you won't be able to do it.  Wait and see how it goes.  Hope for the best, deal with it later if you have to.  I feel for you!  BTW, your dad sounds like a very smart man, and you should take his advice!

Prayers and Support!

2013 Survivor

Tkincaid2
Posts: 12
Joined: Nov 2013

I am hoping that things are going well! I was scheduled to start chemo on Tuesday but could not start radiation until next week so all treatments were postponed until next Monday. Just curious how your husband and you are coping. My thoughts and prayers are with you! 

Tammy

trentster
Posts: 18
Joined: Nov 2013

Hi.  

We are doing well. We have only been through one round of chemo and other then being a bit tired there were no other side effects. It sounds as if there is a build up after more treatments, but everyone's experience seems different. i think a great support system is key. We are in a pet scan clinical trial. Where is your treatments? Have you started? How are you feeling. Thinking of you. Be well. 

2013 Esophageal Survivor's picture
2013 Esophageal...
Posts: 5
Joined: Dec 2013

I am not in the medical field, but do have first hand experience with Esophageal Cancer.  I was diagnosed with stage 1 in July of 2012.  I started chemo in August and radiation in October.  Yes, it kicks your butt both mentally and physically.  Thankfully, I was one of the lucky ones that didn't have a lot of nausea associated with the treatment.  I did experience a lot of weght loss.  I was 6' 1" and weighed roughly 190 lbs, age 48, at the time of diagnosis.  I believe my low weight was around 125 (even now only 140 on good days). 

I started off with the monthly chemo.  I hate to say it, but the first couple of treatments for me weren't too terribly bad.  I'm comparing that to what was yet to come.  They changed my chemo treatment to weekly and after the first weekly dose, I stayed in bed for a couple of days.  The next treatment, three days.  By the time the third, fourth, fifth and dreaded sixth doses occured, I basically was in a complete fog with more time in bed, asleep and in the dark, than I was upright.  My only contact was with my two daughters, age 7 and 9, who came to say hello when they arrived from school and at night when they went to bed. Don't get me wrong, my wife was there with me every step of the way, but I was frankly so sick, I really wasn't aware.  Btw, I started my radiaton about the same tme I started my weekly chemo.

I started losing my hair about the same time we started the weekly chemo.  Not sure if it was from the chemo, radiation, or both.  Really doesn't matter.  I mainly just saw hair in the shower, nothing damatic, but depressing to see every day.  So, what did we do?  I had my girls shave me a mohawk and dye it pink for Cancer Awareness.  After a few pictures and a lot of belly laughs, my wife shaved me bald.  As "different" as I looked, I wouldn't have changed it for the world.  Instead of both my girls (and myself) having to slowly watch it come out over time, we have one fond memory through the entire ordeal. 

I finished up my treatments in November and tried to gather my strength for surgery.  Surgery was scheduled for Feb and they went in and removed what was left of the tumor.  The chemo and radiation reduced it to "almost" nothing, but to be safe, they went in and removed the surrounding tissue.  About seven days later, I was ready to check out of the hospital, actually packed up the night before, but had complications during the evening that was the first of MANY complications I endured.  Didn't get out of the hospital until May.  Not saying this to scare you, but more so to explain that almost eveything that could have gone wrong, did go wrong. The doctors started calling me "Murphy" as in Murphy's Law.  My point in telling you this is after EVERYTHING, I'm still here and kicking.  Just yesterday, I was able to land a new job with a good company and GREAT benefits should this ever happen again.

As the loved one of a cancer patient, I'll give you this advice from my experience.  Your husband is going to be mad, frightened, depressed, rude, and downright ugly at times.  His emotions are going to be all over the place.  He's going to be scared for himself, scared for you, and will agonize about your children on top of dealing with the medication running wildly through his veins.  It used to drive me absolutely crazy when my wife would ask, "Sweetie, can I get you anything?"  "Honey, are you hungry?"  99 out of 100 times, the answer was not only "no", but "HELL NO!".  If he needs something, he knows you are there, he'll ask.  It's going to scare you to death as the lbs start coming off and you'll have to bite your tongue not to ask, "Baby, can you eat something? Drink something?" or God forbid, "What sounds good to you?"  The answer is "nothing" sounds good!  My poor wife would try and list my favorite foods, willng to spend all day in the kitchn if she had to, but with every "favorite", my appetite for anything only worsened.  His body will talk to him when it HAS to eat or hydate and he might want some water or gatorade, maybe some eggs.  Let him come to you.  Unless the doctor has an issue with his weight, don't you worry about it.  Nutritionist?  Very helpful information, but as a patient, the info went in one ear and out the other.  I will say that now, after getting out of the hopital, I used a lot of the info to "get healthy".

Visitors?  I didn't want to see anybody, not even my brother or sister.  Have close friends stop by "unannouned".  He needs contact outside the home, and you will probably find it just as therapeutic.  A little white lie is worth the benefit, but don't overdue it.

Last thing, and most importantly.  You are just as important to your husband's recovery as all the healthcare folks he will see, if not more so.  Keep yourself heallthy, both mentally and physically.  You will not be able to take care of him if you don't take care of yourself first and foremost.  Eat right.  Get plenty of rest.  Get out of the house and have some "me" time. Never pass up an offer from others to help, you will need it regardless how capable you feel you are.  Take a break!  As much as I went through, I can honestly say that I had it easy compared to what my wife had to deal with while I was in "the fog".  I'm here today only through the Grace of God for having her in my life.

I read somewhere in this list of posts that every situation is different, and they couldn't be more correct.  I don't mean to offend anyone in anything that I have written, and it certainly isn't the right advice for all people...this is simply what I wish someone would have said to my wife if she had reached out a year and a half ago.

Good luck to boh of you...I say a prayer every night for all cancer patients and family.  It's tough on everyone, but be his rock!

 

Respectfully,

2013 Survivor!

trentster
Posts: 18
Joined: Nov 2013

Thank you so much for your honesty. it was from the heart and I am so happy you are doing so well! We just met woth the radiologist oncologist today. It is very overwhelming and scary. My husband has had only one treatment this far and has been well. Juat a little tired but tolerable. Our next treatment is Monday. He wears the pack for 48 hours. 6 weeks of chemo and 6 weeks of chemo radiation and then surgery. It is very stressful and as positive as i am I know this is a long road Ahead of us. I have an 11 year old and own my own business. Trying to make time for myself, but it is so difficult. I really like your advice. If you can share any other thoughts they are welcomed! Be well and thank you!

trentster
Posts: 18
Joined: Nov 2013

I wanted to update everyone with positive news to help anyone fighting this disease! My husband was diagnosed on November 6th with Stage 3 Esophogeal Cancer. two lymph nodes were involved. We went through 3 months of Chemo/Radiation and then last Friday he had the Ivor Lewis Surgery.  There were times we did not know if the surgeery was  going to happen. We never lost hope or a positive attitude. We went through the worst winter in a long time and traveled to NY daily for treatments.  The surgery was a tremendous success. John was up and walking the next day. The doctors confirmed the pathology, and said there is no trace of cancer.  He was discharged on the ninth day and is home today.  I want to give hope to all that are out there. Miracles do happen!

Deathorglory
Posts: 63
Joined: Jul 2013

Hello,

 

Glad to hear you guys have had success.  I hope everything continues to go as well as it's been going.  "No trace  of cancer" is exactly what you want to hear.

 

Congratulations,

 

Ed

 

trentster
Posts: 18
Joined: Nov 2013

Thank you for your positve and kind words! No trace is exactly what you do want to hear! Thank you!

dwhite0002
Posts: 130
Joined: Jan 2010

Grace and Peace to you,

I am a 7 year survivor. I was only 32 when I was diagnosed. I also have a family of 3. If you would like to talk, shoot me a message.

 

David,

Hillsboro, OH

trentster
Posts: 18
Joined: Nov 2013

Thank you for reaching out. Yes, I would like to talk. It is so helpful hearing stories of survivors.  My husband is eating everything, just in small portions.  He came home this past Sunday. The surgery was performed two weeks ago this Friday.  He lost a lot of weight, but has an amazing attitude and a desire to be independent.  He is doing great! Everything is looking so positive now.  If anyone has any questions about the surgery, Stage 3 esohogeal cancer or anything, I would love to help with their personal journey. It's a long road, but we and you are perfect examples of a positive outcome. 

 

Grateful4Forum
Posts: 13
Joined: Apr 2014

This board is such a wonderful resource, I'm so grateful to have found it. 

 

My dad has had trouble swallowing for a couple months now and started to lose weight this past month along with pain in his chest.  He had shingles in November 2013 on his chest so we thought the pain was related and went to the doc due to pain.  Pain persisted so doctor did EKG which is fine.  Then ordered Barium Swallow.  On 3/25/2014 his Barium Swallow showed a thickening in the esophagus.  On 4/7/2014, the endoscopy biopsy confirmed Adenocarcinoma Esophogeal Cancer.  Since then he has had an MRI, a chest CT scan and an abdominal CT scan to determine staging.  He also had blood work done.

 

According to the doctor, all scans show the tumor contained in the esophageal lower GE junction, and blood work is normal.  However they see something on the abdominal CT scan in the liver that they want to check and scheduled a liver biopsy for tomorrow.  Doctor thinks the tumor has been there for a while and probably triggered the shingles late last year.

 

Questions:

1.  For some reason doctor doesn't think a PETscan is needed because liver biopsies are 100% accurate.  Is this normal?

2.  Doctor said he's not seeing any spread to lymph nodes in scans, would that be evident in scans if cancer has spread to liver?

3.  Are liver biopsies common in this situation?

4.  Do we need to request for HER+ testing during the time of the biopsy or can that be done later using same slides?

 

My dad feels fine other than lack of appetite and dull chest pain.  He has same level of energy, has always and continues to be very active.  He'll turn 76 next month.  He's feeling really depressed recently which is heartbreaking but understandable.  Really appreciate hearing about everyone's experiences here, it's honestly the only place I can find hope.   

paul61's picture
paul61
Posts: 1115
Joined: Apr 2010

Hello Grateful4Forum,

I am so sorry to hear that your Dad has been diagnosed with esophageal cancer. When I was diagnosed it was a tremendous shock; but the good news is with early diagnosis and current treatment regimens, there is life beyond EC.

It sounds like your Dad is having all the appropriate testing to determine staging and a treatment plan.

When I was diagnosed I had:

  • Blood work to look for cancer tumor markers
  • CT scan of neck, chest, and abdomen with contrast
  • Endoscopy with biopsy
  • Endoscopic ultrasound

Various oncologists have different opinions about the value of PET scans in the staging process. Since many insurance companies push back on PET scans many oncologists are hesitant about requesting them early in the process.

Since your Dad’s oncologist is requesting a liver biopsy I assume the CT scan results indicate something there that requires investigation. The good thing about a biopsy is that it can provide clinical pathology results that are very accurate. PET scans show glucose uptake levels where elevated uptake levels indicate “probable” cancer, but pathology results are much more accurate about specific cancer cell structure.

I would definitely ask for HER 2 testing if the biopsy yields enough material to facilitate the testing. Targeted cancer cell intervention is always better than the old “kill everything that is multiplying quickly” chemotherapy approach.

Examining lymph nodes for cancer can be difficult because it is so widely spread through the body. CT scans can show nodes that are enlarged, endoscopic ultrasound can examine nodes adjacent to the esophagus for cancer indications, and of course PET scans can show elevated glucose uptake in lymph nodes. But the reality is that there is no replacement for pathology results.

 All my testing showed no involvement in my lymph nodes, but when they examined lymph nodes removed adjacent to my esophagus, they found active cancer cells in one of the nodes. The good news is with post surgery chemotherapy I am four years out from surgery and still getting clear scans.

It is normal for your Dad to be depressed, I know I was. But tell him to ignore the frightening statistics and to take one day at a time.

Hoping you get good news from staging and biopsy pathology.

  

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 - Four Year Survivor

 

 

Grateful4Forum
Posts: 13
Joined: Apr 2014

Hi Paul,

 

Thanks so much for the information as well as your knowledge and reassurance.  It's a huge help~ Smile

 

Would we ask for the HER+ testing at the time of the biopsy or can it be done later?  That's great advice and I'd really like to know if the tumor in the esophagus (already biopsied) can be tested also.  

How long does the initial testing and staging normally take?  Since my dad was diagnosed 4/7/2014, it seems like time has stood still while we wait for all of these steps.  We're anxious to get treatment started.

You have a wonderful story to tell, which offers us all great hope.  I'm so happy for you ~ thanks for your response.  

paul61's picture
paul61
Posts: 1115
Joined: Apr 2010

My staging took about three weeks and treatment started about a month after my initial endoscopy and biopsy results were back. Most hospitals retain biopsy samples for some time after they are taken but I would ask about HER testing early in the process to insure that things don’t get lost and things move along. As long as they maintain the tissue samples from the tumor HER testing can be done some time later if your oncologist feels it should wait. It should be noted that some patients who initially test negative test positive as time goes by.

It is very important to seek out an opinion from a facility that treats many cases of esophageal cancer. There is a standard published protocol for treatment. Here is a reference for the published protocol: http://www.nccn.org/patients/guidelines/esophageal/

But the leading cancer centers in EC tend to take a more aggressive approach to treatment and have access to the newest chemotherapy protocols and clinical trials. It appears there are a number of NCCN certified Cancer Centers in California but I don’t see any listed in Oregon. That is not to say that your local center can’t provide adequate care but make sure your oncologist is following the latest NCCN treatment protocols.

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 - Four Year Survivor

Grateful4Forum
Posts: 13
Joined: Apr 2014

Wonderful resources, thanks so much.

dfd24
Posts: 82
Joined: Mar 2011

hello,

i would also add to get the HER2 tested right away, both  on the liver sample and the original.

my husband had his operation 2010 at the time HER2 testing was not routine. he had recurrence 2012 . Her2 testing had become routine but they forgot to test his tumor at the  time of recurrence . it was only in 2013 when i asked about it that he was tested and turned out positive. had he been tested before he could have gotten the herceptin right away when he had the recurrence instead of chemo for one year without the herceptin. he is still on chemo and herceptin .

what i am trying to say is that it is best to know right from the start if your are HER2 positive  because they also give stage four patients who have no operation herceptin if they are HER2+++  .

in fact my husband's tumor sample is now participating in a trial about Her2 testing. so they can use the samples for some time 

 

wish you all the best,

danièle

Grateful4Forum
Posts: 13
Joined: Apr 2014

Hi Danièle,

Thanks for the advice, I really appreciate it!  I will definitely look into the HER2 testing ASAP.  May I ask where your husband's trial is taking place?  We're trying to determine the best place to go for treatment and where the best chances to participate in a trial may be.  Does the trial have to take place at the facility you are being treated at?  

 

Thanks again, this is so new and overwhelming, I really appreciate hearing about everyone's experiences.  Take care.

dfd24
Posts: 82
Joined: Mar 2011

hello,

we are in fact in Paris France. My husband in person is  not in t the trial, it  is just being conducted on a sample of what was removed

during the operation and is conducted by roche, the maker of herceptin, the targeted treatment 

used to treat her2 positive breast cancer and now gastric and esophageal junction cancer. they want to find out how best to test for it.

right now herceptin is being given only in the case of metastatic or recurrent cancer, but it is now routine

here in FRance to test EC patients for HEr2.( at least on what is removed during the operation, i don't know about initial biopsies)  if you are able to get it tested it can't hurt to have the knowledge . if you are 

positive it is especially useful to know it  in case you ever need the herceptin.

wish you all the best,

danièle

Grateful4Forum
Posts: 13
Joined: Apr 2014

Thansk so much for the info, it's very helpful.  Smile

Deathorglory
Posts: 63
Joined: Jul 2013

Hello,

 

Sorry to see your family wind up where the folks here have been.  Here's a couple of thoughts about some of your concerns.  Please do not mistake my thoughts for advice from a medical professional.  My understanding is that PET scans can see wider areas, but that biopsies are much more definite in their conclusions.  So, if there is only one area of concern, a biopsy will give the surest answers.  HER2 testing can be done later, but I'd suggest getting an immediate determination.  If your father is positive, the treatment can be set up to be as effective as possible from the beginning.  The staging will make an enormous difference in the prescribed treatment plan as well as in expected outcomes.  Stage I or II are vastly different animals from stage IV.  Things will fall into place once you find out exactly what you're dealing with.

 

I strongly recommend seeking out the best care you can reasonably get.  This is a serious illness that requires serious care.  Your local/regional hospital may not be equipped to deal with your situation.  Find folks who specifically deal with this disease for a living.  This is not the time to be providing on-the-job training to people.

 

I wish you the best possible results from the tests and with treatment.

 

Ed

Grateful4Forum
Posts: 13
Joined: Apr 2014

Hi Ed,

 

Thanks so much for the post and your kind wishes.  Hearing about everyone's experiences and what you've all learned along the way is such a huge help at this time.  I keep going from shock over how our lives have instantly changed, feeling absolutely heartbroken,  to getting ready for the battle and searching for hope, which I've found on this board.

 

Thanks again.

Grateful4Forum
Posts: 13
Joined: Apr 2014

Well, my dad had his liver biopsy yesterday and today the doctor's office called to schedule an appointment for Monday to discuss surgery.  I'm hoping this means the liver biopsy didn't show anything.  

I still have a lot of questions (paul61's question list is so helpful) and we'll still request that the esophageal tumor biopsy be tested for HER2 (thanks everyone for that great advice!).  

So far my dad has had a CT scan with contrast of his chest, another of his abdomen, an MRI, blood work and the liver biopsy.  It seems they would still need to do an endoscopic ultrasound to properly determine the T stage?  At our last appointment they said none of the lymph nodes were showing anything in the scans but I now realize there still could be lymph node involvement that doesn't show on the scans.  

Anyway, that's one of the questions I'll be asking on Monday.  I'm also going to see if a PET scan or laparoscoy would be recommended?  We're meeting with a thoratic surgeon who is a faculty member at University of Nebraska Medical Center and was recruited to our area a couple years ago.

We're considering a second opinion (something that doesn't require too much travel) and also looking at NCCN facilities in CA or WA.  

I'm very grateful to have found this discussion board.  Have a nice weekend, everyone.

Grateful4Forum
Posts: 13
Joined: Apr 2014

So after my dad's liver biopsy, we were scheduled with an appt with a thorasic surgeon to plan for surgery, which we thought was a good sign. However at the appt we were informed the liver biospy did confirm two liver mets and surgery is not a option.  I have no idea what caused this confusion but it's been a hard week.  The surgeon is referring us to UCSF for treatment, hopefully soon, as I am panicking.  

Trying to stay hopeful and just want to get treatment going rather than all this waiting.  Trying to eat as healthy as possible in the meantime so we don't feel absolutely helpless.  We are also still waiting to hear back about the HER status.  I don't know how I'd cope without these discussion boards.  Thanks to everyone out there who understands.

trentster
Posts: 18
Joined: Nov 2013

Update from my husband....

I am a 56 year old non smoker and Stage 3 survivor of esophogeal cancer. I was diagnosed with Stage 3 on November 6, 2013. I was treated at Memorial Sloan Kettering in NYC.  My treatment began with 6 weeks of chemo therapy with infusion pump. My next 6 weeks consisted of chemo therapy with infusion pump and 27 radiation treatments. I then returned home for 5 weeks of rest and recuperation in preparation for my surgery.  My surgery was Friday, April 4th, 2014. I had the Ivor-Lewis procedure. I am now 12 weeks post esophagectomy surgery, I would like to share my personal experiences. I had been an avid golfer for 40 years, and was anxious to return as quickly as possible. That motivated me to aggressively begin my rehabilitation day 1 post op I was instructed to begin walking. My first day I walked nine laps around the hospital floor. 14 laps was equivalent to one mile. I increased my laps and pace daily, refusing to take a wheelchair to daily Xray tests instead choosing to walk a great distance and back.  Within 3-4 days I was walking 28-32 laps a day and was rewarded for my progress and released on day 9 post op.  I was previously told to expect to remain in the hospital for 14 days.  I continued this walking regimen and included climbing up and down stairs. On my 4 week post op surgeon follow up visit, I was told to begin golfing, exercising which included push ups and 10 pound dumb bell weights. During my 6 months of treatment, surgery and recovery, I had lost 43 pounds and weighed 137 pounds. For the last 3 weeks I have been 9 holes of golf  2-3 times a week with a golf cart. I have also carried my golf bag and walked 7 holes. My exercise regimen now includes 12-13 push ups daily and arm and shoulder dumb bell weights.  My strength has increased considerably and my weight has increased by 7 pounds.

I have had my challenges, but everything has been manageable. 

* First week Post op  - 2 naps a day - purchased an adjustable bed. Sleeping on the wedges was uncomfortable and deprived me of much needed sleep.

* Eating small portions, but not limited to what I could or couldn't eat

* Was Sensitive to milk shakes and protien drinks - caused the dumping syndrome

Today 12 weeks later, I am eating larger meals, still have occasional bouts with dumping syndrome. They are not as severe, however predicting when they will occur is still a mystery.

Overall, my complete experience from when I began treatment,  through surgery and now recovery has been easily tolerated and manageable. I believe a great surgeon, great oncologist, positive attitude, supportive family and my unbounding faith has been the secret to my rapid recovery.

Should anyone have any questions, I would be glad to help in anyway.

bassman1968
Posts: 5
Joined: Jun 2014

Good luck with my wife is 41 we was told she has stage 4 esophageal cancer she has 3 chemo treatment we also have to boys 11 and 13 just wanted to let you know your not alone good luck hope everything works out for you

 

John Char
Posts: 19
Joined: Jun 2014

I have stage 3 esophagus cancer that has spread to my lymph nodes in my stomach and into my bad. The doctor has given me 2 to 4 months to live. I'm not ready to leave my wife yet. We had so much we wanted to do And now this

dfd24
Posts: 82
Joined: Mar 2011

I know someone else who was given a few months to live and it's two years later and there is no evidence of cancer, his tumors shrank and nothing is visible any more.

everybody is different and I don't know why doctors want to be so precise. It's a definite trauma hearing something like that.

 discuss things with your wife ,get your affairs in order,and  get the best treatment possible even if it means asking for a second opinion.

do ask if you have been tested for HER2 . if you haven't insist on getting tested as there is targeted therapy called herceptin if you are Her2 positive.

wish you all the best,

danièle

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