Need Survival Stories
My mom (56) went in last friday to stretch out her sphinter ring (huge difficulty/painful swallowing) and instead found out that she had tumor near the bottom of the esophagous. Biopsy came back today and it's the squamous cell. Cat scan shows swollen lymph nodes but no biopsy on the lymph nodes yet. She had difficulty since Jan of this year but took awhile to see the doctor. I've been seeing nothing but horrible stats and information on the internet. I've been crying non stop and I feel like I'm having panic attacks. Meeting with an oncologist tomorrow. I need to hear some uplifting survival stories. I'm looking to find hope that she has a chance to beat this no matter what stage it comes back at. She hasn't been able to eat normal food for months. 4 times she thought she was choking and she's been suffering in silence. I'm so upset with myself for not pushing to get her into the doctor sooner. We made the original appointment in May and we just got into the doctor about a week and 1/2 ago. She could have been getting treatment this entire time. Please, post some positive stories on here. I need some hope.
Comments
-
Welcome
Hi and welcome to this site. I am so sorry to hear about your mom, and the issues she's facing. Until you know the staging, however, there is no way of giving you any idea of what's in store for her. Although the stats on the internet are unreliable due to many factors, know that this is a nasty disease, and to be totally honest with you, it's a lot harder to fight than some other cancers.
If she is below stage iv, she most likely can have surgery, which could put her into NED (no evidence of disease) On this site, there are several people who are NED, and have been for years. On the other hand, any major surgery has it's possible complications and side effects. Also, it's not guaranteed to rid her of the cancer or that it won't come back at a later time.
On the other hand, if she is stage iv, surgery is not an option, and the only care they provide is palliative (quality of life). This usually includes chemo and sometimes radiation. There are some stage ivs here that have been fighting for 2-3 years. Some only last months. Everyone is totally different, and handles treatment differently.
The one thing my husband (stage ivb) and I learned the hard way is to get a feeding tube ASAP, especially since she is having such a hard time swallowing. You don't want her to lose too much weight or become dehydrated, especially during chemo, radiation or surgery. She needs to maintain as much calorie and liquid nutrition as possible to fight this disease. Chemo takes a toll on you, and the stronger she is going in, the better, no matter what her stage.
Please know that there are many kind people on here that will welcome you with open arms, and offer you all the information, advice and support you need to help your mom fight her way through this.
Take care,
Chantal0 -
Welcome
Welcome Heeran:
Welcome to the site, but wish you were not here out of necessity. Since you find yourself in the same shoes as many, please feel free to ask as many questions as you like and vent whenever.
I know what your mom has been going through, many of us here do. I choked many times for over a year before I went to the doctor. I went to have esophagus stretched and they found a tumor. I was diagnosed Nov. 11 2010. You can read more about me on about me page.
I had the Ivor Lewis surgery in March. Some recommend the MIE, as far as I am concerned, I would do the Ivor Lewis all over again.
Before surgery, I did 186 hours of Cisplatin and 5 FU along with 29 radiation treatments. Surgery, then 4 rounds of Carpolatin and something. Chemo brain has set in. I am doing fantastic, only missed work during surgery. I have worked everyday of chemo treatments. What the future holds, I have no idea, I have PET/CT tomorrow hopefully I will be NED.
What I have learned one is thing, enjoy every minute of every day regardless what any test shows. I pray for you and your mom, no matter what the results, it will be a long battle and very frustrating at the least. Life can be enjoyable during treatments.
You will find some on here that are years ahead of me, and some not so far behind. May God bless you and again, feel free to vent or ask anything.
God Bless
chad0 -
Diagnosed Date vs. Treatment Datepreacherchad said:Welcome
Welcome Heeran:
Welcome to the site, but wish you were not here out of necessity. Since you find yourself in the same shoes as many, please feel free to ask as many questions as you like and vent whenever.
I know what your mom has been going through, many of us here do. I choked many times for over a year before I went to the doctor. I went to have esophagus stretched and they found a tumor. I was diagnosed Nov. 11 2010. You can read more about me on about me page.
I had the Ivor Lewis surgery in March. Some recommend the MIE, as far as I am concerned, I would do the Ivor Lewis all over again.
Before surgery, I did 186 hours of Cisplatin and 5 FU along with 29 radiation treatments. Surgery, then 4 rounds of Carpolatin and something. Chemo brain has set in. I am doing fantastic, only missed work during surgery. I have worked everyday of chemo treatments. What the future holds, I have no idea, I have PET/CT tomorrow hopefully I will be NED.
What I have learned one is thing, enjoy every minute of every day regardless what any test shows. I pray for you and your mom, no matter what the results, it will be a long battle and very frustrating at the least. Life can be enjoyable during treatments.
You will find some on here that are years ahead of me, and some not so far behind. May God bless you and again, feel free to vent or ask anything.
God Bless
chad
Hi,
Thank you for your reply. I went to your about me page and it says that you were diagnosed in November but didn't start treatment until January. Was there a reason for that? Isn't time of the essence? I thought EC was an aggressive cancer?0 -
Sorry to Hear
Heeran (That's Korean isn't it? My wife is Korean and a colon cancer survivor)
Sorry to hear about your mother, but you've found a very good place for support and information. I was diagnosed 04/07 with Stage IIA (T3N0M0) and I found this board. As I went thru chemo/radiation and some of the difficulties and side effects that come with this disease, I found the support and information to be of great benefit.
Like I said, I have finished chemo/radiation and just did my CT/PET scan where they found a suspicious (enlarged node). The biopsy results came back today and it was negative for cancer (praise the Lord). So nodes can be swollen due to other reasons also.
As far as the stats......don't pay attention to them. Mark Twain once said, "There are three kinds of lies......lies, damned lies and statistics." Yes, this is a horrible disease and we see many less than desired outcomes, but we also see some great victories. Many of the EC stats you see on the web are outdated and don't take in consideration recent advances in treatment options.
Please post more information about your mother as you find out.....the more info you can provide the more detailed the feedback will be, and trust me, there's some real experts on here.
In the meantime, I will pray for you and your mother. Regardless of what is going on around us God is still in control.
God Bless you
Michael Daniels (T3N0M0)
Brandon, FL0 -
Yes, I thought time is ofHeeran said:Diagnosed Date vs. Treatment Date
Hi,
Thank you for your reply. I went to your about me page and it says that you were diagnosed in November but didn't start treatment until January. Was there a reason for that? Isn't time of the essence? I thought EC was an aggressive cancer?
Yes, I thought time is of the essence also. One thing that caused the delay was, my oncologist had never seen and EC patient. His partner had, and she recommended radiation and chemo for 7 weeks then it would all be over.
My wife found this site and knew that was false. We asked for a second opinion, and that took a couple of weeks. The Thanksgiving and Christmas fell into play. (Oncologist do not like to work normal hours apparently). So we started in January. That is the story.
Oh, taxol was the other chemo I was on. Please overlook spelling and gramer, I do not review post after typing just hit post comment.
chad0 -
Statistics without staging are misleading
Heeran,
It sounds like your mother is in the early stages of diagnosis. Some additional tests should be completed to define the extent of her cancer. Each stage has a different set of survival statistics. Most of the published statistics you will find on the internet are based on past treatment outcomes and do not reflect current treatment options and outcomes.
Your mother has squamous cell carcinoma and many of us here had adenocarcinoma. Make sure when you are looking at treatment outcomes, you are looking at the right type of cancer. It is true that esophageal cancer is difficult to treat. But you will find there are a number of survivors here that are living with even Stage IV squamous cell cancer.
Time is certainly of the essence in treating any cancer; but you want your mother's medical team to take time to do a full battery of tests to accurately stage your mother's cancer before they define a treatment plan. Once you have accurate staging then we can offer better input into sources for treatment and potential outcomes.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
"Welcome" to the boards you're in the right place...
Heeran,
I cannot really add allot to what all has been said already, but I do want you to know that there are a LOT of us here just waiting to help and offer REAL advice as you may now see.
Please, come back often and post just as much information as you can stand to type.
Know that you could NEVER ask too many questions, and that we all love nothing more than to share our experience and group strength.
I think others said it best. They type of cancer that you mom has tends to be more aggressive than the type that I have, but then again, even THAT depends on the person and how their body deals with it.
As for staging and type and all of that, everyone address it well. You simply MUST get all the tests done and get a proper staging. If it is stage IV, it really doesn't matter what type or stage it is. At that point, it is palliative care to extend life. But lets not get further in to that as she could well be st stage II or III and be ready for surgery after more tests!
As for the symptoms and the time before she starts treatment, I think you will find that almost all of us here either had some type of trouble swallowing and not many of us ended up at the doctors office very quickly, as that is not the way anyone runs to the doctor! I think we ALL like to think 'maybe it will just go away!' quite often! I had trouble for almost a YEAR and when I DID get to the GI doctor for a Colonoscopy, he said it was excess scar tissue, just skin, that he could remove with a simple balloon treatment. Turned out to be a tumor at the junction of my stomach and esophagus, and another IN my stomach and it has metastasized from there to all the nodes and now to other areas as well. I am stage IVb. Inoperable.
We wish you all the love in the world and we are all here for you and for your mother.
May God bless you and keep you calm. I also understand the panic attacks and breathing problems that will come with thinking about this too much. Try to take it easy and take it one step at a time as best you can.
All the best. Please post again!
-Eric and Michelle0 -
Time is of the essenceHeeran said:Diagnosed Date vs. Treatment Date
Hi,
Thank you for your reply. I went to your about me page and it says that you were diagnosed in November but didn't start treatment until January. Was there a reason for that? Isn't time of the essence? I thought EC was an aggressive cancer?
My husband is 10 months since diagnosis and all appears well. He was stage 1 and avoided chemo and radiation and was able to go directly to surgery less than a month from diagnosis. Life is fairly normal, with a few adjustments in eating and sleeping. May you only get the best possible results for your mother! Take Care.0 -
Survival story.......
I had trouble swallowing in Dec 2009, had endoscopy in Feb 2010 and was diagnosed. Had Iver Lewis surgery in March 2010 followed by 3 months chemo. I was staged at 2N1M0. I just had my 18 month check up, no evidence of cancer. My best and prayers for you.
Gerry0 -
What Stage Were You Diagnosed?preacherchad said:Welcome
Welcome Heeran:
Welcome to the site, but wish you were not here out of necessity. Since you find yourself in the same shoes as many, please feel free to ask as many questions as you like and vent whenever.
I know what your mom has been going through, many of us here do. I choked many times for over a year before I went to the doctor. I went to have esophagus stretched and they found a tumor. I was diagnosed Nov. 11 2010. You can read more about me on about me page.
I had the Ivor Lewis surgery in March. Some recommend the MIE, as far as I am concerned, I would do the Ivor Lewis all over again.
Before surgery, I did 186 hours of Cisplatin and 5 FU along with 29 radiation treatments. Surgery, then 4 rounds of Carpolatin and something. Chemo brain has set in. I am doing fantastic, only missed work during surgery. I have worked everyday of chemo treatments. What the future holds, I have no idea, I have PET/CT tomorrow hopefully I will be NED.
What I have learned one is thing, enjoy every minute of every day regardless what any test shows. I pray for you and your mom, no matter what the results, it will be a long battle and very frustrating at the least. Life can be enjoyable during treatments.
You will find some on here that are years ahead of me, and some not so far behind. May God bless you and again, feel free to vent or ask anything.
God Bless
chad
When you were diagnosed last November, what stage were you? And when you started the chemo, did they put a feeding tube into you?0 -
Congratulationsbirdiequeen said:Time is of the essence
My husband is 10 months since diagnosis and all appears well. He was stage 1 and avoided chemo and radiation and was able to go directly to surgery less than a month from diagnosis. Life is fairly normal, with a few adjustments in eating and sleeping. May you only get the best possible results for your mother! Take Care.
Congratulations for the early detection. We went to our first oncologist meeting today and the doc. ordered endoscopic ultrasound and PET Scan before determining the stage. She did mention that the from the Cat Scan, the tumor went through the esophageous wall. My mom just stood there saying, "Why didn't I have this checked out in January when I knew something was wrong?" It just breaks my heart inside.0 -
Thank youhopper52 said:Sorry to Hear
Heeran (That's Korean isn't it? My wife is Korean and a colon cancer survivor)
Sorry to hear about your mother, but you've found a very good place for support and information. I was diagnosed 04/07 with Stage IIA (T3N0M0) and I found this board. As I went thru chemo/radiation and some of the difficulties and side effects that come with this disease, I found the support and information to be of great benefit.
Like I said, I have finished chemo/radiation and just did my CT/PET scan where they found a suspicious (enlarged node). The biopsy results came back today and it was negative for cancer (praise the Lord). So nodes can be swollen due to other reasons also.
As far as the stats......don't pay attention to them. Mark Twain once said, "There are three kinds of lies......lies, damned lies and statistics." Yes, this is a horrible disease and we see many less than desired outcomes, but we also see some great victories. Many of the EC stats you see on the web are outdated and don't take in consideration recent advances in treatment options.
Please post more information about your mother as you find out.....the more info you can provide the more detailed the feedback will be, and trust me, there's some real experts on here.
In the meantime, I will pray for you and your mother. Regardless of what is going on around us God is still in control.
God Bless you
Michael Daniels (T3N0M0)
Brandon, FL
Hi Michael, yes we're Korean. Congrats on the negative node. What a relief. Yes, this site is wonderful. I've been crying non-stop since finding out mom had a tumor Friday but since talking and reading through the posts here, I'm taking a deep breath and just trying to figure out how to help my mom. Once the oncologist specifically gives me the stage, I'll try to do what I can to calm my nerves and be strong for my mom. She just had these symptoms for so long, (since January).0 -
Thank Youchemosmoker said:"Welcome" to the boards you're in the right place...
Heeran,
I cannot really add allot to what all has been said already, but I do want you to know that there are a LOT of us here just waiting to help and offer REAL advice as you may now see.
Please, come back often and post just as much information as you can stand to type.
Know that you could NEVER ask too many questions, and that we all love nothing more than to share our experience and group strength.
I think others said it best. They type of cancer that you mom has tends to be more aggressive than the type that I have, but then again, even THAT depends on the person and how their body deals with it.
As for staging and type and all of that, everyone address it well. You simply MUST get all the tests done and get a proper staging. If it is stage IV, it really doesn't matter what type or stage it is. At that point, it is palliative care to extend life. But lets not get further in to that as she could well be st stage II or III and be ready for surgery after more tests!
As for the symptoms and the time before she starts treatment, I think you will find that almost all of us here either had some type of trouble swallowing and not many of us ended up at the doctors office very quickly, as that is not the way anyone runs to the doctor! I think we ALL like to think 'maybe it will just go away!' quite often! I had trouble for almost a YEAR and when I DID get to the GI doctor for a Colonoscopy, he said it was excess scar tissue, just skin, that he could remove with a simple balloon treatment. Turned out to be a tumor at the junction of my stomach and esophagus, and another IN my stomach and it has metastasized from there to all the nodes and now to other areas as well. I am stage IVb. Inoperable.
We wish you all the love in the world and we are all here for you and for your mother.
May God bless you and keep you calm. I also understand the panic attacks and breathing problems that will come with thinking about this too much. Try to take it easy and take it one step at a time as best you can.
All the best. Please post again!
-Eric and Michelle
Thank you for the post Eric. You seem to be a strong person describing everything you just did. I'm sorry to hear about your stage IVb staging. I actually don't know what to say as I'm still in the process of finding out more about this disease. I go into panic attacks thinking my mom is going to die tomorrow. The posts here are helping me to keep focused, get real information, and to maintain hope.0 -
I'm so sorry that her tumorHeeran said:Congratulations
Congratulations for the early detection. We went to our first oncologist meeting today and the doc. ordered endoscopic ultrasound and PET Scan before determining the stage. She did mention that the from the Cat Scan, the tumor went through the esophageous wall. My mom just stood there saying, "Why didn't I have this checked out in January when I knew something was wrong?" It just breaks my heart inside.
I'm so sorry that her tumor has gone through the esophageous wall. That had to be heart breaking news. There was a time years ago when my husband was offered surgery to stop his heart burn, but opted to take medication instead. We try not to have any regrets as we cannot undo what has already been done. Just move forward and encourage other to get checked early!
Take Care0 -
DXHeeran said:What Stage Were You Diagnosed?
When you were diagnosed last November, what stage were you? And when you started the chemo, did they put a feeding tube into you?
When I was dx, it is a long story, but originally said stage 4 with mets to the liver. I prayed for a week solid, non-stop. One week later, the mets to liver were gone. I was T2N3M0 at that time. (Doctors still talk today about the miracle, and watch my liver very closely at every scan.) I did not get J-tube until surgery in March. I am very fortunate and blessed to have done so well. Some have done better than myself, while others, not so well.
Keep a positive attitude and never question what if, because that is in the past. Always look ahead.
Many on here think that feeding tube early is the best way to go, I was not well educated, still not, in what order things needed to be done. I would take others advice on feeding tubes. I also had mine removed about 3 week after surgery, and did great. Others, have needed theirs during chemo treatments. Again, everyone reacts differently and I would follow some other's advice regarding feeding tubes.0 -
17 months outGerryS said:Survival story.......
I had trouble swallowing in Dec 2009, had endoscopy in Feb 2010 and was diagnosed. Had Iver Lewis surgery in March 2010 followed by 3 months chemo. I was staged at 2N1M0. I just had my 18 month check up, no evidence of cancer. My best and prayers for you.
Gerry
Heeran, I was diagnosed in April 2010 as a stage 4b. At first they saw what was thought to be mets to the liver but within three months that was cleared and has presented no more trouble. As a stage 4 I was not a surgical candidate and have done fairly well with chemo and radiation. So far I have experienced no spread. I have another CT scan next tuesday so we will see if that remains true. I take each day as a blessing, try not to worry about next week and enjoy the life God has put before me. As many have already stated, this is a monstorous disease with no easy roads. Look to your family, friends and God for support and try to stay strong. Sam0 -
Can You Still Eat With Feeding Tube?preacherchad said:DX
When I was dx, it is a long story, but originally said stage 4 with mets to the liver. I prayed for a week solid, non-stop. One week later, the mets to liver were gone. I was T2N3M0 at that time. (Doctors still talk today about the miracle, and watch my liver very closely at every scan.) I did not get J-tube until surgery in March. I am very fortunate and blessed to have done so well. Some have done better than myself, while others, not so well.
Keep a positive attitude and never question what if, because that is in the past. Always look ahead.
Many on here think that feeding tube early is the best way to go, I was not well educated, still not, in what order things needed to be done. I would take others advice on feeding tubes. I also had mine removed about 3 week after surgery, and did great. Others, have needed theirs during chemo treatments. Again, everyone reacts differently and I would follow some other's advice regarding feeding tubes.
If she get's a feeding tube, does that mean she can still eat normally?0 -
As long as she's able to swallowHeeran said:Can You Still Eat With Feeding Tube?
If she get's a feeding tube, does that mean she can still eat normally?
As long as she's able to swallow she can continue to eat. Think of the feeding tube as an insurance policy. If during treatment swallowing becomes more difficult or impossible, the tube is already in place. I didn't have one installed and the chemo really zapped my appetite and the radiation made swallowing become more difficult so I wish I had had a J-Tube. I was on blood thinners so I couldn't have the surgery to put in the tube and consequently lost about 40 lbs from diagnosis in April until now.
Also, if you would like to speak with my wife (who's Korean)let me know. I'm sure she'd be happy to talk with you. She had colon cancer in 2009 and now is my caregiver while I deal with this EC thing.
Michael Daniels (T3N0M0)
Brandon, FL0 -
J-Tubes are Supplement - unless neededHeeran said:Can You Still Eat With Feeding Tube?
If she get's a feeding tube, does that mean she can still eat normally?
Hello Heeran
I'm so sorry to read about your mom. My prayers go out for a good and operable diagnosis.
My husband, diagnosed stage 3, had a J-Tube (goes into 2nd intestine and bypasses the stomach - makes surgery {if possible} easier) placed before he entered radiation or chemo. The docs wanted to get the tube in before treatments began so he would not have to tolerate a surgery to place it during treatment. He's been "practicing" with it in order to get his intestine up to accepting it's anticipated short-term role of being the primary digester of food. Short-term - at least during the surgery phase.
He has been eating as normal - when he could. Chemo took some tastes and desires away, but now that he has completed rads & chemo, his tastes and hungers have returned for the most part. Radiation caused similar issues. But when he's able to eat - he eats and eats well. On those days, he does not use the pump. He does pump a can or two every other day - just to stay "in practice"
The wonderful thing about the J-Tube is that it is there and ready to supplement or even be the primary when necessary. And there will be days when the added nutrition or hydration possible through the Tube is a Godsend. There will be other days that you hate the durn thing because it's the only visible sign you see of the cancer.
Best wishes and prayers to you and your mother!
Terry
Wife of Nick, Stage 30
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