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Pet results, stage 3 ?? NO surgery.... Doctor does not like and husband does not want!

Wife of patient...
Posts: 129
Joined: Oct 2011

Had an appointment with Medical Oncologist and Surgeon yesterday, Medical Oncologist was 2 hours late for appt.During this period the nurse came in from the T Surgeon Office and indicated That my husband will not require an appointment with him at this time. I started to panic and starting thinking stage 4. Finally Oncologist graced us with her presence andstated that my husband was stage t3n1 m0. Tumor has grown outside of the esophageal wall, there is activity with 2 lymph nodes a hillar and cannot remember name of second kind. The Oncologist indicated that the surgery is nasty. She has patients who have under gone the surgery and the cancer has comeback. My husband had decided before we went to the his appointment that he would not elect to have the surgery anyway. I ask Ms. Oncologist about a MIE surgery, she said no we do not offer that surgery here. So on the 17th my husband will start Chemo treatments of Cisplatin/ Paclitaxel/ Cetumimab once a week and radiation 5 times a week. The Cetuximab will enable the Doctors to give higher does of Chemo and Radiation. Absolutely no feeding tube unless really needed. Husband has gained 12 pounds since 1.5 months ago 145 to 157. I disagree I do not want to see him wither away again. The doctors call the use of surgery in my husband case “salvage” …..last resort. I thought if one waited to long after radiation too much scar tissue would hinder surgery?

My husband will not research, I have provided him with a lot of information and with the most positive info I could find which was hard to do. He quit reading and said “I do not want to know any more it is too depressing” “I’ll do what the Doctors recommend.” I want them to give all I can take to get rid of this excluding surgery

Ha anyone taken or had experience with this cocktail of drugs and radiation combo. If so were the side effects real bad. I am really nervous.

Roller coaster ride from hell has began!
Sal

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Sal,
I could not agree with your husband any more! He is making his decision.
I would support him 100%.
THIS IS MY OPINION. Remember that.
This is NOT one of my positive posts, but I feel being honest is the right thing to do.

I KNOW that the surgeries are WHY many here are alive today, I get that. I understand that the desire to live is the STRONGEST instinct that there is. But I, for one, like your husband, do NOT have any interest in being alive on the other side of that type of surgery, or the lifestyle that it would require....WHY?...
I NEVER liked doctors OR hospitals. To willingly undergo a procedure that is all but going to guarantee that I will have a life filled with many visits to doctors and hospitals for the rest of my days was and would not be a choice I would ever make! Again, this is ME. MY decision, my feelings. YOU have your feelings and your husband has HIS.

I was in the same position, when they originally thought my cancer was operable. Then the Thoracic surgeon said he didn't want to see me, through his nurse as well.
They wanted me to do almost the exact same routine, then they dropped the radiation due to location of some affected nodes. So then it was Stage IV and chemo only, palliative, incurable, so mine was not as "hopeful" as your diagnosis.

That said, it IS a salvage surgery, if any of the surgeons want to be honest about this. Our oncologists and two others told us this as well. I get that. There is also a VERY VERY high recurrence rate for this type of cancer AFTER any of the surgeries, with or without chemo and radiation. The "official" numbers are like 75% recurrence rate for even early stage III and I believe (that means ME, not scientists and doctors!) that it is much higher, even for late stage II. This is a NASTY cancer, one of the WORST. Having read these boards for months now, I have seen SO many have recurrences after surgery and all the pain and suffering and all that it entails. It is SO horrible and heartbreaking. Again, I am ONLY being honest here. It is not nice nor is it pretty. I WOULD seek our William's surgeon if you ARE going to have surgery, or at the very least, one of his proteges. They are the ONLY ones that seem to have real success. Others will refute me I hope. I am not trying to rain on anyone's parade. Really.

At some point, you MUST get behind him, and support what it is HE wants or is willing to do. He is in the fight of his life. He WANTS to live, and it sounds like he is making a decision. He may change his mind. Give him some time to absorb. But if not....

MANY MANY MANY here are going to tell you to go to another hospital or cancer center, run, get another opinion, fast. Nothing wrong with that. Just know that they mean well, too.
You may NEED and want a second (or third) opinion. We did, in the beginning. We got three.
After all the evidence was in, I had to make MY decision.
I chose NO chemo, NO radiation, NO surgery (NOT that I had the option at that point), but if they called me today and said "we can fix it with an MIE or THE ot IL" I would say thank you, but NO thank you.

IF your husband does NOT want to do the surgery, or even chemo, I highly recommend thinking LONG and HARD about WHO has to endure the TREATMENT. You BOTH have to endure the cancer. Only HE has to endure the chemo, surgery, etc. So think it through and consider what HE wants and is willing to do. Otherwise, there WILL be resentments and problems later on down the road. And this is a rough road.

I will pray for the both of you. I hope I don't get slammed for being so HONEST here, but I am sharing my EXPERIENCE and my TRUTH. I trust everyone else will do the same.

As I did NO chemo, I cannot advise you there. Others here will offer many great replies besides mine. READ THEM. Trust this group. They are great people. This is just one mans opinion, me.

May God bless you and heal you both.

-Eric

Wife of patient...
Posts: 129
Joined: Oct 2011

Eric hi, I have had conflicts. Surgery or no surgery. At first I thought oh my god that is the nastiest surgery I have heard of. The more I came to this board I thought wow.... people survive and there is some kind of life after surgery. But as I kept reading, these brave people and families are going through this nasty surgery and the cancer comes back. I also do not want to offend or sound negative either but the facts are here on this board. My Husband does not want the surgery, I agree, it is his cancer, he has to own it. All I can do be there for him and supoort his decisions.

Eric, I am behind my husband 100%, I am glad he does not want the surgery, I am suprised by his Oncologist. She is either not following the normal protocal chemo/radiation/surgery or my husband is stage 4 and they are not informing us. Or maybe this doctor is a cowboy. One of the drugs that my husband is taking is in clinical trials.
I dont know Eric... but yes ...I try to make my husband laugh, I make him his special ensure drinks with whipping cream and carmel. When he becomes real quite... I grabb his hand.. I hide my tears often! Eric thank you for your reponse...you are truley amazing!
Sal,

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Sal,
One more thought....

KEEP grabbing his hand. Often!

THAT is the kind of memories we ALL need to be making all the time, cancer or not.
And don't worry about holding back the tears. They will overpower you. If you can't cry WITH him, please feel free to cry with US!
WE ALL DO!

-Eric

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

I am so sorry to hear of your husband's diagnoses. My husband was diagnosed at a ivb, so we had no option for surgery. I do feel that although the surgery is daunting, it is a chance. To face this cancer with chemo alone is just not enough. As Eric said, get a second opinion. There are plenty of doctors that will do the MIE surgery, and I don't know where you are, but I'm sure others here can recommend a good surgeon for a second opinion, if your husband is willing to hear what may be offered. We are in Canada, so I can't help. I do know that most people here highly recommend Pittsburgh for MIE surgery. I would probably butcher the surgeon's name if I tried to type it, but I know that someone here can give you more information.

Off hand, I can think of 3 people who post here that have survived for several years past surgery, and all with no recurrence. Donna, Sandy and William are the names of the ones I'm talking about. Hopefully they will see this thread and give you their stories, or you can click on their name and their profile will come up for you to read. William has celebrated his 9th anniversary cancer free!!! There are survivors, no matter what you may read. I know 25% may not seem like much, but it's better than 0%.

I acknowledge what Eric said, that it is ultimately your husband who will have to suffer from the chemo, radiation and surgery effects, no small feat!!! However, if he's refusing to educate himself on the pros and cons, he may be dealing himself a short straw. There are survivors, there are people who pay their dues to this monster and live to tell. They have happy, full lives. I'm sure none of them regret the pain and suffering they went through, and if there are still lingering issues, I'm sure they would rather have a bit of gas and discomfort after meals than the alternative.

As Eric said, this is opinion only, I hope your husband makes the best, most informed decision possible. With this cancer, none of the options are great, but there is hope.

Be well,
Chantal
wife of Lee (stage ivb)

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

Hi Sal,

I appreciate Eric sharing his view point, and all opinions are welcome on this board, I also recognize the reality of this cancer in regards to re-occurance. While it is true that this cancer recurs more often in later stage (III & IV), it does also occur in early stages (I & II). But, to Chantal's point and the hope that I hold onto every day is that there are people on this board who had stage III cancer who have been cancer free for 2-9 years without re-occurance. And, this is only one board, on the ACOR mailing list there are a number of long term survivors, and there are also survivors who never share their story. I just want to say that there is always HOPE, don't lose sight of that. If we didn't think there was HOPE then none of us would go through with surgery, it seems like a large price to pay but my husband who is only 1 month past surgery says he has no regrets. Every one has the right to choose their own treatment plan, but I couldn't let this post go by without saying something. There are many people who never post but read these boards looking for hope in very dark moments, I know this because I was one of them 4 months ago. I wish for your husband strength during chemo and clean scans shortly there after :)

Niki
Wife to Jeff
dx May 24th T2N1M0
6 rounds of Oxaliplatin and continuous 5-fu, 28 radiation treatments
IL 9/6/11, clean pathology

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

I should be against surgery and I was totally against it. My mother had EC about 10 years ago and had all the treatments that money could buy. Back then the surgery was first then chemo/radiation. Now the standard of care is chemo/radiation together if you can handle it and then if operable then the surgery. My mother had some leakage and infections and was never the same. Ended up living for about a year past diag. So, when I was diag with EC in November 2011 I was way beyond words. I felt that I was going to die anyway and only did the treatments to satisfy my grown children.
Ok so to finish this post and go make some chicken before the wife gets home, I will jump ahead.
I felt like crap during chemo/radiation. Spent 14 days at Mercy Hosp after round 3 of chemo. Then when I got out and about 6 weeks went by I felt like a million bucks. Gained weight back and even felt like going to work. Why even risk the surgery??? Then the surgery talks. Wife then oncologist then a doctor buddy of hers then the nurse coordinator at Virginia Piper Cancer Institute and finally the surgeon, Dr. Eric M Johnson. Robotic surgery the next week. Zero time in ICU and 7-8 days at Abbott Northwestern Hospital. 6 months now downstream of surgery and 1 clean PET/CT/MRI scans and blood tests later I feel terrific.
My and all our biggest fear is recurrance but if I have a 1 in 4 shot of cure then I am going to take it and run. I used a surgeon with a quality track record and a team that is up on the latest technology.

Jim

Wife of patient...
Posts: 129
Joined: Oct 2011

It sounds like your surgery went very well. The choice is my husbands. If you should op to have sugery I would support his decision.If he should op for surgery we would certainly research. At this point I cannot get my husband to get a second opinion. I cannot make him. I have been through what I like to call the cancer game and rollercoaster with my dad. I still do not understand why the thoracic surgeon indicted that it would not be necessary to make our appointment. I wonder if my husband is a stage 4. My husband is not proactive; he does not ask questions and becomes upset if I do. He grew up in a military family his father was a Lt Cornel mom army nurse WWII. He will not question authority.

Jim, It sounds like you have had exceptional medical care.
I wish you peace & happiness!
Sal

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Sal,
I GET that you are supportive and 100% behind your husbands choices. I appreciate your response and I am glad that you seem to have SOME peace with his decision or at least your ability to accept his choice.
I am never sure so I posted all of that.

I am glad you are here (as paradoxical as that sadly has to be) and I am glad that you seem to have it so "together" in the midst of all this hell.

I wish you well and I will have you both in my prayers.

May God bless you and hold you through this horrible journey of EC.

-Eric

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

While I don't wish to sway someone either way I also don't want to leave a stone un-turned. Doctors welcome 2nd opinions because it relieves them of some of the stress of being the final say. I suppose that if your husbands current oncologists recommended that he talk to someone just to be sure... I dont know or want to cause problems. Do you live near a large medical center?

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Many of us here agree with the respecting the authority of our doctors. I am NOT one of them. Had we not questioned out doctors every single step of the way, I honestly feel that Lee would be dead right now.

We had to fight, and fight hard for a feeding tube. In July of this year, he was barely able to consume 300 calories a day. His weight was dropping drastically and he was vomiting daily. Lee was so weak, dehydrated and malnourished, he could not walk from one room to another without having to stop and rest. We asked for a feeding tube 3 times, and were told that he did not 'need' one. Had we not kept fighting, I honestly think Lee would not have made it more than a few more weeks. Finally, they consented, and he got it placed in August. He has been maintaining his weight, and has regained some of his energy. He was supposed to start another cycle of chemo the week before the feeding tube was inserted, and he was so weak, sick and starved that he decided to quit chemo for good. I hate to play the what if game, but I wonder, if he had the tube placed when we initially asked, would he have been able to face chemo and lengthen his life? We'll never know of course, and there's no looking back..... but again, doctor error.

Our next battle was over having an esophageal stretch done. Again, we were told that it was not 'needed' yet. Shortly after this, we switched to a palliative care doctor, and she was quite surprised that we were denied the stretch. They finally put it through as an emergency procedure, and he had it done 2 days later. His esophagus was so badly closed up, the surgeon could barely get the wire down for the endoscopy. Lee had been at the point for weeks where he could barely swallow water, and was constantly spitting up saliva and anything he tried to drink. His medication was getting stuck, and not being able to get your much needed pain pills down is not a good thing, trust me!!!

We have had several other smaller incidents, which were not life and death issues, but still..... Doctors are not god. They make mistakes, they have heavy caseloads, are overworked and often overlook critically important things, especially if you are just nodding your head and saying yes, yes, yes to everything they say.

As you will hear by others, QUESTION EVERYTHING, don't take no for an answer if you strongly believe you need some form of treatment. You need to stay one step ahead of the doctors, and the treatment at all times. We found this site supremely helpful, for making lists of questions to ask at our appointments. If you don't think to ask something, they likely won't be able to read your mind.

Take care,
Chantal

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Sal,
I agree with Eric that it is your husband’s decision to make but if he is not willing to research his condition and find out all he can before making the decision then I, as a caregiver, may have regrets. To be honest, I don’t agree that the surgery is not worth a 25% chance of living more than 5 years. Because it does offer a high quality of life after recovery.
As far as the military upbringing and questioning authority….it is his body he is the authority here. There are experts (doctors/medical staff/ect) that can provide him input but in this case he is the five star General. Even Generals seek the opinions of experts before making a decision. They want to be informed! Even if the mission is particularly daunting, and this one is. Is this surgery life changing? Yes, but my husband who had the surgery last December is doing very well. He was very glad to have the cancer out of his body. Will it reoccur? Who knows, but we do know that his surgeon got rid of all visible cancer…..it’s gone!

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Like birdiequeen said, it is a VERY personal decision.

I can completely understand thinking that a 25% chance is worth whatever hurdles you may have to face. I was simply not willing to face those hurdles or make those sacrifices, just to stay here or say I am "alive". I have a VERY different version of quality of life than a lot of people. I have a DNR, I refuse to EVER be hooked up to machines, and when it is my time to go, I want to go, not having them try anything to keep me around, again, just to say I was here.

I have had 43 beautiful, wonderful, incredible years of life (so far) and I am totally AT PEACE with ALL my decisions. Of COURSE I would love to live forever! But that is not realistic anyway. In our culture, we NEVER are taught to deal with or face death in any kind of realistic way. Death is something that happens to someone else, to them, to others. Like it is NOT supposed to happen to us, ever. This is not the way I see it and not the way I was raised. But I DO realize that this is how most American's and many others see death. THAT makes these kinds of decisions and treatments and cancers even more horrible for the entire family. Just saying. MY opinion.

Many here have made a VERY good and a VERY important observation:
You simply MUST research ALL of your options, know all of your choices, and understand all of the risks and hurdles involved.
I do NOT agree with your husbands apparent "sticking his head in the sand" approach as it sounds. I think he is still in the denial phase of having been diagnosed, personally.

There is a LOT of great material out there about this, and about treatment options and so forth. He really NEEDS to inform himself to be able to MAKE an informed decision. Otherwise, as it was said, there WILL be regrets, notably for him, and also for you.

I could not agree MORE with the excellent analogy that birdiequeen (I assume someone likes golf?) has made about even four star generals asking for advice, especially when it involves major decisions. I doubt that the Generals went in to Iraq or any other war without many meetings and consultations with their superiors and their subordinates! It simply is the right way to do things. Maybe you can try to use this analogy with your hubby?

I will continue to pray for you and hope that this progresses in a POSITIVE direction for the both of you. We are all here and willing to offer ANY advice we might be able to, many having been exactly where you are now, and many more having gone through this already, living on the other side and having a lot of great advice to give, freely and with love.

Also, I NEVER meant to even IMPLY that the surgery is never worth the cost. It simply was not a cost I would pay. Obviously, many are here and alive and happy and would not trade being alive, no matter how long that may be for, for being gone.

Chantal explains the need to educate and be ahead of the doctors and so well informed so well in her post. I cannot tell you how many things WE have now taught the oncologists that they didn't even know!!! FIGHT for the feeding tube, fight for good, no great, pain management, and fight for whatever your husband decides he is willing to fight for.
This is his life and I hope he doesn't take that lightly.
I did WEEKS of research, ALL DAY online, in the library, talking to people on the phone, at cancer centers, calling even friend and family member I could find that ever had any type of cancer, chemo, etc. MY decisions came with a LOT (a TON) of research and learning LONG before I decided what I decided. KNOW THIS. It did NOT come lightly.

I wish you well and may you find peace on your journey together.
God bless,
-Eric

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Sal,

First I want you to know no matter what happens or what path you and your husband take you will have the support and advice of the folks on this board. All of us know that this is a personal and difficult decision from the moment you hear those dreadful words you have Esophageal Cancer. Even if you don't have surgery there are many folks here who can provide you insight, advice and yes a shoulder to cry on or a place to vent.

My father, who was 78 when he was diagnosed, originally was staged as a T3, N2, MO --- he underwent chemo and radiation and also had a stent inserted to allow him to eat. Unfortunately the stent caused him many problems, he ended up in the hospital with several surgeries to remove the various stents that kept slipping into his stomach and by the time he had completed his chemo and radiation the cancer had spread to his liver and he no longer had a choice of surgery. This is a very aggressive and deadly cancer, and it requires proactive actions and the best treatment you can possibly get. I found during my dad's journey that there are doctors who are overwhelmed with the odds and then there are doctors who are interested in advancing the treatment and cure for Esophageal Cancer. Hopefully one day the dismal statistics you read can be reversed and one day we will read about an 80% cure rate instead of the dismal ones we see now.

I travelled all over the country with my dad and went to the best cancer centers in the world – he survived long past his “expiration date” and toward the end it wasn’t the cancer which took him but a complication – ironically the cancer had been tamed somewhat and was stable from an experimental treatment he received in Pittsburgh at the UPMC.

You see my dad was a Lt. Col. in the US Army Corps of Engineers – a military man and a scientist to his core. We researched tirelessly to find options and to understand the disease. He even was willing to try clinical trials --- as he once told me maybe it won’t cure me but perhaps one day they will find a cure and be able to save someone I love. It wasn’t always easy, and he was stubborn (his saying was “My mind’s made up don’t confuse me with facts) and he did decide toward the end that he wanted to stop fighting and pass away with dignity and hospice. And although a very difficult decision one which we honored – but we spoke about it during his treatments, we spoke about it to his oncologist and with the nurses. The opinion was that when the treatments didn’t work, or when the treatments made him so sick that he couldn’t stay out of the hospital or out of bed then it was time to stop. But if he was enjoying life and the treatments were keeping the cancer stable we would continue.

I remember one of the gifted surgeons we spoke to early in the process spoke to us that the only way to hope for a cure was to have surgery, that the pre-op chemo and radiation had greatly improved the odds of success over the years and the introduction of the Minimally Invasive Esophagectomy (MIE). There are no guarantees in life but it is a surety if you don’t get surgery and have Esophageal Cancer you will die much sooner than you would have. My dad said that he wanted to have as many days as possible with his bride of 53 years and enjoy his family and maybe even see some great- grandchildren. He had too many projects to complete that are still undone and left to us to complete.

If my dad could have had the chance for surgery to get the cancer out of his body, he said he would give up eating steak for the rest of his life. I have watched with heartbreak as other stage III’s have fought through the pre-surgery chemo to have the cancer spread before they can get the surgery and then lose their battle to this monster. I have watched others have a recurrence and then make the hard decisions about what type of treatment and when to stop. I have seen even more successfully get through the pre-op chemo and the surgery and live their lives with their loved ones – having scans and praying that the cancer stays away.

I know that we tried all we could, that my dad gave it his best and that he “Did it his Way” as the famous Frank Sinatra song says. He lived his entire life in charge and in control. He was scared and he worried but he maintained an amazing spirit, he had more good days than bad. I wish he could have had the surgery – I wish he had that option – and yes it makes me a little sad to see someone with that option not willing to even check it out and get information. I would have done anything to help my dad beat this cancer and be here today. I wish he could have had the surgery and a chance. And just so you know I started talking to my dad when the cancer spread to his liver about not doing anymore treatment – so I am not a radical that believes you should hang onto the chemo until they pry it out of your dying hands.

In order to make a decision you should have all the facts and get different opinions. Once you have those facets and understand the situation then you sit down and weigh out the risks, the benefits, and then you decide what is important to you. If after all that you decide that you don’t want treatment, or don’t want surgery, or do want treatment, or want surgery then you are making a fully informed decision and doing it your way.

Again, please understand that many of us here have been where you are today. And many more of our Stage IV’s wish that they had discovered their cancer earlier so they could have had a chance for surgery.

Best wishes,
Cindy

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

Hi Sal,
My name is Michelle and I am wife to ChemoSmoker. I have lurked around these halls since my husband joined a while back now. It is your post that brings me out of the background for my first post on the board.
Our journey is one of 'quality' not 'quantity'. This was my husband's choice early on in his diagnosis. I did like you and researched much, but unlike you, I only gave him what he wanted to know. Early on he became very overwhelmed with the information and began having a dialog that surrounded the quality vs. quantity. This is a terrible diagnosis for anyone to hear.
All that said I will tell you my thoughts on the matter. As difficult as it was for me in the beginning and now, I stayed in the background of my husband's decision of 'what' to do with his treatment options. He repeatedly asked for my opinion and I stayed still in my response, which went something like this: "As much as I love you, and you know that I do, I could not even imagine what I would do in your shoes. You have a huge decision to make and if I tell you what I think, you will likely make a decision based on some form of my opinion. I could not handle the thought that if things don't work out the way you wish them to, a resentment may form against me. This has to be your decision and your decision only, as this is your body, your life, and your ability to endure what may come." I also let him know that I would stand by him with whatever his decision was and would do everything in my power to see to it that he receive the care he wants and desires. I could never imagine presuming to know what that walk 'feels' like. I have never had cancer, so I can not know how it feels. I can observe, but I can NOT feel his pain, his emotional burden, his fears, his doubts, his comfort level. These are all things that hinge on his ability to articulate them to me. This is where my words for you come in to play.
I urge you to have a conversation with your husband and ask him to agree to a set time and place with a time frame ahead of time. Let him know your intent with this conversation. The forum will be a Q&A dialog. When you have the time and place set, then you know what time frame you have to build your case. Know your questions, know your motives, and know your feelings (fear, anger, abandonment,etc...). This agreed upon talk will be "your turn" for answers. You are entitled, as a wife of so many years, to the understanding of your husband's decisions. The answers to you questions will help to ease your anxiety. He does, as your husband, owe you an explanation. He does not owe you his commitment to your idea of a treatment plan. Plan these questions well in advance. Make a list, and write them all down. Go over it several times, because your thoughts will change as you move forward. He is human, and he has feelings about this. He is just not doing a good job of helping you understand his decisions. Communication is key as I am sure you know. You sound like a very smart and caring person and I completely understand your fear and your position as you set forth here. What ever his choices, as caregivers we have to carry the burden of our own journey and I personally do not want to think for a minute that I pushed my husband away during a time that should be filled with an appreciation for the time we DO have, whether it a day or several years.
I also understand that there are two sides to every pancake and though we are not hearing from your husband at this juncture. If the information is depressing to him, then find out from him how you can 'best' help him to live happily and with joy. This is what you will take with you in this journey. Also know that not all hope is lost in his decision. There are a few cases out there that had absolute remission or completely cancer free results with chemo and radiation alone. They are very small numbers, but they do exists. Love him much and unconditionally.
With much care and concern for you and your husband,
Michelle

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Sal,

I know the idea of a surgery as extensive as an esophagectomy is daunting to be sure. Even after surgery the chances of recurrence are always present.

However; before your husband makes a final decision without the benefit of a second opinion; I would like to submit something for him to think about:

I am a 63 year old male and was diagnosed with EC in October of 2009. I had an Ivor Lewis esophagectomy with gastric pull up in December of 2009. To give you a picture of my life 22 months post surgery; I would like to describe how I spent today.
_______________________________________________________________________
I got up early this morning (at 7:00 AM) because I had an 8:15 AM Tee Time at the golf course.

I ate my breakfast consisting of two scrambled eggs and a bagel with cream cheese.

I played 18 holes of golf with my buddies.

I had lunch with my golfing partners after golf. Lunch consisted of a turkey sandwich with cheese and potato chips.

Got back home around 1 PM and took a nap in my recliner.

I spent the remainder of the afternoon doing some minor chores around the house.

This evening my wife and I went out to one of our favorite local restaurants where we split a prime rib dinner with mashed potatoes and steamed vegetables.

I spent the evening watching TV and reading posts here and eating my pre-bedtime snack consisting of an apple and frozen yogurt.

Pretty boring huh?????
________________________________________________________________________

My point is that my life, post surgery, is about the same as yours and his before cancer arrived.

Yes I have had to make some adjustments in my life style to accommodate my new digestive system. Sugar is not part of my diet. I eat six small meals a day (my wife and I typically split a normal restaurant entrée). I need to eat slowly and chew thoroughly.

I won’t try to suggest that recovery from surgery and completion of chemotherapy was easy or quick. It took me eight months after surgery before I felt somewhat normal again. But given the chance to make the choice again I would do it again in a second. I know there if every possibility that my next scan could show the dreaded ‘recurrence”. One of the things all cancer survivors live with is the chance of recurrence. Every new pain or days of not feeling up to par bring the shadow of recurrence to the back of our mind. But we learn to take each day, one day at a time. And we learn to view each “boring” day like I described above as a gift.

There are no guarantees that treatment and surgery will provide a permanent “cure”. In fact we all have a “terminal” illness, it is called time. Some of us just have a better guess at what might end our life than others. But none of us know how much time we have.

I really hope your husband considers at least talking to another surgeon before making a final decision.

And by the way; any oncologist who would leave you both in suspense for two hours without at least taking a few minutes to let you know why she was not there, is not worth your time. I would suggest you find someone with some empathy.

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
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!

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I so admire your activity level Paul! It is certainly very inspiring. You are a vibrant and active person for such a 'boring' day...lol. We can only pray that Sal's husband would have an about face and start to investigate ALL of his options, or at the very least hear his wife's pleas and plug into her needs as well. This is a traumatic time for all of us and when in trauma, you can't start the healing without stopping the bleeding first.

Sal:
From what I read in your post your first problem is you husband's lack of willingness to be open to any new information. Your husband has you panic stricken. Please let me know if I am wrong. If you don't get a dialog started with him, how can you possibly help him to see other alternatives offered in these posts? Military or not, he is your husband and needs to communicate with you about his reasoning and his feelings if you two are to move towards options and understanding. Please do take care and I pray for a door to be opened for you to communicate with him, so you both may start preparing for what is to come in either direction.

Sincerely concerned,
Michelle

dodger21's picture
dodger21
Posts: 83
Joined: May 2011

Paul,
what a lovely post. I hope you have many more 'boring' days to come.
Danielle

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

Please get a second opinion and somehow let your hubby know many of us are out here with the same staging. We got the chemo and radiation and then the surgery. In my case the big surgery and more extensive one and like Paul, I am here almost 2 yrs later and I am gardening, housecleaning, helping other people, enjoying my grandkids and my son and my sibs. Everyday I am walking a mile and thanking God for every day that I have with my hubby, family and friends. It is hell during the treatment and for me post op chemo did me in but I started feeling more normal at the 7th month mark.I don't understand the dr you spoke to. I know every person gets to make their own decision about their care and I respect that but I have never heard a dr dismiss this stage as inoperable or a salvage operation??? There were many here who would have given anything to have the chance to walk in this world much longer. Even in my hardest times, I knew that my hubby needed me to go on and I did and boy am I glad I did. My thoughts and prayers will be with you and your hubby. take care,
Donna70

BMGky
Posts: 666
Joined: May 2010

What Paul has to say is right on target. He was a great help to my husband with his kind support as my husband was recovering from an IL esophagectomy.

Granted, be it an IL or an MIE form of surgery following chemo and radiation, it is not for the faint of heart. His oncologist informed him that the treatment is brutual and some cannot finish it. An MIE does not have all the problems an IL surgery does. Husband had quite a few issues; HOWEVER, he is 18 months post op and last scan showed no evidence of disease!! Woo! Hoo!

He continues to practice everyday. Was at the opening day of a nearby racetrack yesterday. Is planning our annual visit with our grandchildren to Disney World; his second since the operation.

Does he still have the dumping events? Sure. But it's because he doesn't follow the eating recommendations of frequently, slowly, and chew, chew, hew. Went to the State Fair, and he ate polish sausages, pork chops, ice cream--not a problem.

We had our annual physical recently, and except for a slight anemia that is improving, his results are better than mine!

There are so many on this board who would love to be given the opportunity to try. Their door was shut on them even before they reached to open it. They almost considered not doing surgery on my husband due to prior medical history and age. When they decided to, I told him we owed it to all the other "senior in age only" citizens to give it our very best because if he is successul, it may open the door for others to be given the opportunity for surgery.

The post-op period had a lot of recovery issues. It took some seven months for him to feel like he was normal again. [He was hospitalized a month following his surgery and had to be hospitalized twice during his treatment] Small price to pay. Right now, he's outside on this gorgeous fall day, riding his beloved John Deere rider mower, happily mowing leaves and whatever else gets in his way, enjoying the changing fall colors, and the flowers he has so carefully watered and tended since I'm somewhat remiss on taking care of my plants.

My reason for posting is that I felt like you had been given no hope for a normal life after surgery, and that is not the case in many instances.
Yet, it is an arduous journey with great risks and a long haul back up the hill to functionality. Also, I don't know just what is your actual staging, medical needs, etc. All of this information is very important to your decision.

So, best of luck to you. I pray you are content with your decision and that your family is comforted by what you decided. I just didn't want you to think that there is no life after surgery. BMG

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

BMG-

BEAUTIFUL post. ALL of it was So very well said.
Amen, and amen.
Thank you for giving to others as you always do, yet again.

-Eric

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Sal,

I fully respect everyone's right to make *informed* choices. As I also respect the comments of those made by others here in the thread. Everyone has very valid points.

I was initially aghast at the complexity of the surgery. And it isn't a small surgery. But a few things that our surgeon said have stuck with me.

* After completing a full radiation & chemo treatment plan, the surgery is a minor inconvenience compared to the rad/chem treatment.

* 15% of those that complete a full treatment consisting of radiation, chemo & surgery will have reoccurance.

* 85% of those comleting radiation & chemo, but not electing surgery, will have reoccurance.

I would have to agree with the 1st point. Today is my husband's 1 month anniversary of his surgery. He feels well, participates in family outings, is finding balance with his "new & improved" but smaller stomach. He is more "himself" now than he was during the radiation & chemo.

And to add to the number of "unspoken survivors", my boss' father is a 15 year survivor of Stage II EC. He had radiation, no chemo, and had an Ivor Lewis surgery. He has NO regrets.

Terry
wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11
Clean Path 09/13/11

We too have NO regrets.

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

In February I was diagnosed with an 8cm tumor which was T3N1M0. I was presented with an Ivor Lewis surgical option with pre-op and post-op chemo. After some research, I decided to forgo the Ivor Lewis open surgical procedure in favor of the Minimally Invasive Esophagectomy which I had performed in Pittsburgh at UPMC by the incredibly talented team of Dr. Luketich's. Before that I had 9 weeks (3 rounds) of what my chemo nurses said was the roughest chemo regamine they give. I worked 8 of those 9 weeks and actually could have worked all the way through but I decided that in the event I didn't make it, I wanted to spend those last weeks with my family.

Surgery was July 1st and I was out of the hospital after 7 days even though I had some complications. Most get out in 5 days. I was up and mobile the whole time. Sore as heck sure but I always said I'd rather die on my feet that waiting for it to happen.

After surgery, I had another 9 weeks of chemo which I am just finishing. I am 3 months and 1 week out from surgery. Since surgery, I have been on 3 camping trips with my family and planning some day trips with my wife over the next few weeks before I return to work next month. My first camping trip was about 6 weeks after surgery. And I did all the work setting up the RV at the campsite. I actually had to wait until just now to reply to this because I was at the campground last night and the wireless wouldn't stay connected so I could reply there.

My eating has taken some getting used to but I'll be honest, I am healthier than I ever have been. Before surgery I was about pre-diabetic. Since surgery, I have lost weight and now have that completely under control. My eating would be better but the chemo has caused some mild nausea with the post-op rounds.

Some of my family mentioned concerns about what I would be giving up after surgery. I told them I would rather give up everything in order to get to spend more time with them. I was prepared for the worst after surgery and have found it not to be too bad at all. I ended up with the best of both worlds. I got my time with my family and the changes haven't been too bad. And, they get better every day.

I fully respect your husband's decision not to fight. It is a rough fight and the stats are dismal. Whenever I would get down, I would take inspiration from the many Stage IVs here on the site. I would think here I am with a chance to fight this and what many of them would give for that chance to fight. I felt I dishonored them if I didn't do everything I could. That and a lot of prayer. I did take a lot of comfort in my faith.

Shoot, right now, even after all of this, I have a 36% chance of a 5 year survival. My oncologist tells me with my progress, attitude and they way I have handled my treatment, he feels I am on the upper end of the 36%. I'll tell you this though, had I done nothing, my chances were a little closer to 0% which makes 36% look pretty darn good.

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

Hi Sal, Your husbands doctors would scare me. I would definately get a second opinion.

When I was diagnosed in nov. 2007, I thought I had been given a death sentence. I didn't find this site, and all I did find were stats that were all glum.

I was staged T3N1Mo. The doctor ordered chemo (no radiation) and the Ivor Lewis surgery. I didn't know anything about the MIE. The chemo was rough, but mild compared to what some others experience. I had the surgery in May 2008. There were a couple of complications, but I think I did well. It took several months to feel near normal again. I lost 99 pds. I have gained 14 pds back and I'm healthier than before cancer. I was considered diabetic-on medication, and had high blood pressure. I don't have either of these now.

Today, I eat anything I want. I've had to learn to eat smaller amounts, slow and chew,chew, chew. I do have a problem with whats left of the esophagus wanting to close, so I have to be dialated every once in a while. The doctor has said that it might keep recurring. This does not happen with everyone. We all have to sleep elevated to keep down reflux and I take medicine for reflux also.I do have a problem with diarhea sometimes, but it doesn't control my life , I'm dealing with it.

I have tried to be honest. Is the treatment and surgery worth what I have today? Oh Yes! These are small life changes compared to what could have been. Life is a gift and it is beautiful.It was a rough road, but it was so worth fighting for.

I am planning my 50th wedding anniverary celebration in Feb. I didn't think it would ever happen. We have eight grandchildren, that I so enjoy. We now have two great grands, that I wouldn't have known if I hadn't had the surgery.

I am cancer free today. If I do have a reoccrence and it is terminal, I might choose quality over quanity. I don't know, but I would seek help from my friends on this site. They're the ones with the encouraging answers.

We do not have any quarantees in life, but I'm so happy for the extra time I have had to enjoy it. Life has so much more meaning than it did before. I thank God I was stage 3 and had the chance with surgery. There's too many that don't have the chance.

Please, show your husband my post and some of the others post. Life is worth fighting for,and I thank God He gave me the chance,
Sandra

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Sandra, Jimbo, Everyone,
THOSE were such beautifully written posts. They really moved me. I have even read your stories before in other posts or maybe your about me pages? But hearing it there, the way you both worded them, so "from the heart", such an encouraging posts that I think ANYONE facing surgery should read them!

I still have my feeling and opinions. Faced with the same odds, I would chose what I have chosen, for very personal reasons. THAT is why it is so important for all of us to share and for people to be given ALL the different perspectives and options, so one that will more closely relate to their feelings and wishes will offer them the most help!
Like I heard years ago about posts and writings and opinions; Take what you can use, and leave the rest for others. I think that sums it up well.

I just wanted to post a note after reading those posts and say THANK YOU.
God bless you ALL,
-Eric

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

You summed up this community so well just as you do all topics. The strength of this community comes from the fact that everyone's journey with this disease is so different. And most importantly, it is their own. I respect everyone for how they deal with this horrible disease. There are no right or wrong ways, just information.

Wife of patient...
Posts: 129
Joined: Oct 2011

Thank you! Such amazing and beautiful posts.

Choices,it is all about choices (informed).... and information. You guys amaze me. Please know I have read every post on this page. I so much appreicate you encouragement,your words of wisdom and support. Michelle, I am glad you’re posting.

Gatoraid's picture
Gatoraid
Posts: 71
Joined: Aug 2010

I also was T3n1m0 with 2 positive lymph nodes along with the tumor. The best chance for success is chemo along with radiation followed by surgery. At surgery they take out additional lymph nodes in the area to biopsy them to see if they got everything. If any besides the ones previously identified are positive, then there is more chemo after the surgery. The risk of reoccurance after all that is a coin toss.

I was not happy about chemo, radiation or the surgery, but the MIE surgery was the safest way to go. In my opinion, without the surgery I wouldn't survive very long going forward. My surgery was in December 2010 and I've had 3 clean scans and am back to living a normal life with some changes to due a smaller stomach, etc.

While this is his choice, I feel his depression and the shock of getting this cancer may be removing his fight to beat this thing.

Don't give up in your quest to get him his best chance for survival. It's very scary..too much information can scare you about things that may not effect you while lack of information causes you to make poor decisions. We are all unique and some of us get through this easier than others.

I wish you and him the best.

megmacmd
Posts: 94
Joined: Jun 2011

Dear Sal,
I was diagnosed with stage 3N1 inmarch 2011 but really its probably stage 4a lesion in esophagus was through the outer lumen and I had nodes in my pelvis and perihilar region They told me I was not a surgical canditate which was fine with me the surgery can be gruesome My whole goal is quality of life to the end My sister and mother died 4years and 1year ago of breast cancermy dad died 5 years ago from bladder cancer Each choose their ownpath my sister went all out and was bedridden for over a year my mom and dad choose a gentlier route and lived their life until the last 2-3 months. I have done 12 rounds of foxflur cisplatinum, oxipatinum and 5FU I did well the first 8rounds but now I have a lot of side effect peripheral nueropathy mouth sores fatique bone pain but my latest was no cancer in my esophagus biopsy and my nodes have shrunk syillnot a surgical candidate which Iam fine with Ihaveno caretaker sincemy husband of 30 year died unexpecably of a brain anuersym 3 years ago and my 3children the eldest girl is 28 married working for JP Morgan and chase my middle girl26 is an occupational therapist my youngest son is at Uni of Virginia 3rd year , My goal is continuingt to work and get my youngest through college. I am a pediatric hospitalist inthe neonatal unit and I love the babies and my job.After 12 rounds of chemo Im taking a holiday and thenI will decide what to do I want quality of life and would rather be able to work to the end and enjoy my children than be bedridden or limited I dont want anyone tohave to caretake me although in the end I know that will be a reality and my eldest daughter has risen to the occasion to have me live with her.But I would rather stay in my house on the water by thebeach withmy little jack russel by my side. Its a tough decision since this is a very aggressive disease and from what Ive read high reoccurance rate yes you read about alll the survivirs but where are those who have succumbed My personal choice is quality all aloong the way Iwill takemy chances and make my decision after my chemo holiday november and december I really dont know what I will choose but chemo is begining to take a huge toll on me and my life and as I said before I really love work and living my life so we will see good luck on your decision its a hard one but your husband has a great care taker so that should factor in his decision butultimately it is up tohimm praying for you Meg McIntyre

Wife of patient...
Posts: 129
Joined: Oct 2011

Meg... thank you so much for your post. It sound like you have experienced alot of pain and agony both physical and emotional. You spirit shines through your post beautiful. Your love of life... for your kids... your work... and of course Jack russel dog too. As I read your post the second time... my eyes are filled with tears. I wish you could have treatment and quality of life.

Thank you for the encouragement. I will send you good stong positive thoughts.... I do not know what to say.....I pray you can find a good balance in your treament and quality of life + decisions.

BIG HUGS To you MEG
from
Sal

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