Just starting on this unknown journey

2013 Esophageal Survivor

Tkincaid2 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? 

5FU/Cisplatin

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

trentster

2013 Esophageal Survivor said:

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!

Thank you so much for your

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

Tkincaid2 said:

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

Hi.  
We are doing well. We

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. 

lornal

paul61 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:

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

 

 

 

 

I'm printing this out

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

lornal said:

I'm printing this out

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.

I am so sorry to hear about

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

trentster said:

I am so sorry to hear about

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. 

Don't know yet

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.

 

trentster

dfd24 said:

hello,
Paul61 has a great

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

Hello. 
He is in a national

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. 

adamray

kellysierra said:

Hi,
I'm new to this site.I'm

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

Appetite

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

 

trentster

Sharing positive news!

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!

dwhite0002

hope

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

Deathorglory

trentster said:

Sharing positive news!

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!

Congratulations!!

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

dwhite0002 said:

hope

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

Congratulations!

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. 

 

trentster

Deathorglory said:

Congratulations!!

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

 

Thank you!

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

Grateful4Forum

Newly Diagnosed - Seeking Information

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

Grateful4Forum said:

Newly Diagnosed - Seeking Information

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.   

It sounds like they are doing the correct tests for staging

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

paul61 said:

It sounds like they are doing the correct tests for staging

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

 

 

Thank you paul61

Hi Paul,

 

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

 

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

Grateful4Forum said:

Thank you paul61

Hi Paul,

 

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

 

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.  

My staging took about three weeks

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

paul61 said:

My staging took about three weeks

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

You're a gem

Wonderful resources, thanks so much.

dfd24

Grateful4Forum said:

Newly Diagnosed - Seeking Information

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.   

her2 testing

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

dfd24 said:

her2 testing

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

Thank you dfd24

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.