Just starting on this unknown journey
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.
Comments
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Best Wishes
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
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Some suggestions on starting your journey
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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
- 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.
- 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:
- What kind of esophageal cancer do I have?
- What is my specific staging T?? N?? M??
- What tests have you run, and what tests are available?
- Has my tumor been tested for HER2
- How many cases of esophageal cancer have you treated?
- How advanced is the cancer? Has it spread to more than one area?
- Why are you recommending this particular treatment?
- Are there other treatment options available for this cancer, and what are the pros and cons of each?
- Is there any written material about the recommended treatment that we can take home to read?
- What are the goals of this treatment, and what is the success rate?
- How long will the treatment last?
- What are the risks of this treatment?
- What are the side effects of this treatment?
- Are there ways to manage the side effects?
- How do we know if a side effect is severe enough to warrant calling you?
- Is there a number that can be reached 24 x 7 for on call assistance?
- What do we need to do to prepare for this treatment?
- Is there anything that's important to avoid before or during treatment?
- Can you tell us what to expect during treatment -- where does it take place, how long does it last, and is it uncomfortable?
- How do patients typically feel after treatment, both immediately afterward and in the days that follow?
- Is it a good idea to make certain diet or lifestyle changes, and how can friends and family help with these?
- Are there any new treatment options or clinical trials we should be aware of?
- 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:
- 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
- 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.
- Here is a reference to the NCCN website: http://www.nccn.org/members/network.asp
- 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.
- 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 Survivor0 -
Staying strong and positivepaul61 said:Some suggestions on starting your journey
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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
- 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.
- 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:
- What kind of esophageal cancer do I have?
- What is my specific staging T?? N?? M??
- What tests have you run, and what tests are available?
- Has my tumor been tested for HER2
- How many cases of esophageal cancer have you treated?
- How advanced is the cancer? Has it spread to more than one area?
- Why are you recommending this particular treatment?
- Are there other treatment options available for this cancer, and what are the pros and cons of each?
- Is there any written material about the recommended treatment that we can take home to read?
- What are the goals of this treatment, and what is the success rate?
- How long will the treatment last?
- What are the risks of this treatment?
- What are the side effects of this treatment?
- Are there ways to manage the side effects?
- How do we know if a side effect is severe enough to warrant calling you?
- Is there a number that can be reached 24 x 7 for on call assistance?
- What do we need to do to prepare for this treatment?
- Is there anything that's important to avoid before or during treatment?
- Can you tell us what to expect during treatment -- where does it take place, how long does it last, and is it uncomfortable?
- How do patients typically feel after treatment, both immediately afterward and in the days that follow?
- Is it a good idea to make certain diet or lifestyle changes, and how can friends and family help with these?
- Are there any new treatment options or clinical trials we should be aware of?
- 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:
- 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
- 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.
- Here is a reference to the NCCN website: http://www.nccn.org/members/network.asp
- 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.
- 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 SurvivorThank 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.
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hello,trentster said:Staying strong and positive
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.
Paul61 has a greathello,
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
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Suggested reading
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
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I too am just starting on
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.
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Sloan Ketteringtrentster said:Staying strong and positive
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.
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.
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Hi,Deathorglory said:Best Wishes
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
I'm new to this site.I'mHi,
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
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Thank youJKGulliver said:Sloan Kettering
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.
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.
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My prayers are with you too.Mrs.Mack said:I too am just starting on
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.
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!
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Treatments
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.
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.
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SorryMrs.Mack said:I too am just starting on
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.
Sorry this was the attitude - sounds like one of the idiots we used.
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Long roadDallas1pd said:Treatments
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.
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.
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!
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I just got my diagnosis 11/7/2013 of EC
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?
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This Unknown journeyTkincaid2 said:I just got my diagnosis 11/7/2013 of EC
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?
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.
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Thank youtrentster said:This Unknown journey
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.
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!
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Thank you. It Can be soTkincaid2 said:Thank you
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!
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.
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Hope things are going well!
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
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Hello Trenster
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!
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Be Strong Kellykellysierra said:Hi,
I'm new to this site.I'mHi,
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
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
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