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sjbo659

I was diagnosed with Esophageal Cancer in December 2017.  Its a T3-No-Mo localized in the junction.  I have done all of the testing required and the plan as set out by my surgeon is to do 6 weeks of Chimo and Rdiation combined, then to do the surgery. I begin the Chimo today 1/23/2018.  Now I want first to say that even though the thought of Surgery is not a pleasant one that I look forward to I am also not afraind if it goes that way.  My concern is more on my location and the number of these operations that are performed every year.  I do have a surgeon that is no doubt qualified but I have to ask myself how long has it been since he was doing them on a weekly basis and how many since he moved to here as well as how much of his skill has deteriorated over that time period.  Second thing on my mind and maybe even more important to me at this time is the statisitics we all have read many times after we found out we were dealing with this cancer.  I keep coming back in my mind to the same place and that is what is more important to me at this time in my life.  I am 69 years old and will be almost 70 by the time we do the surgery.  The question I keep asking myself is this.  Is the quality of the rest of my life more important then the few years I might gain.  If the kimo and radiation are successful and when we do the pet a few weeks later and it looks to have killed it do I flip the coin and hope for the best and do a booster to make sure we killed all of it or do I go thru with the surgery.  I went back to work after 5 years last year and pulled my family pretty much our of debt and am suppose to go back this year about the time I am suppose to have the surgery.  I work seasonal so time is always a factor when I work.  Do I put my family first and try and pull us compeltely out of debt so if the worst happens they are debt free and our home is in good condition so they do not have  that burden or do I say to heck with it and do the surgery and become a burden for at least the next 9 or ten months and never have the chance to go back to work like I can now.  I know a lot will say life is worth more then anything else but I am thinking of those I leave behind before myself in this case.  I hope there are others who had to face a similar decision and can help me tounderstand your thoughts when you made the final decision.  thank you. Steve

paul61

I was in your situation 8 years ago

Hello Steve,

Making a decision about surgery, particularly if you are somewhat older, is difficult. And, of course, the statistics that are published on the internet about survival outcomes are dismal. One thing to remember about those statistics; they are almost always dated and in many cases just plain obsolete. Survival statistics for esophageal cancer in general; and surgical outcome statistics in particular, have improved significantly in the last few years.

I had my treatment and surgery in 2009; with follow up chemotherapy in 2010. I would not be honest if I did not say that 2010 was probably the most difficult year of my life. Even though I was assured through a number of tests and scans that my esophageal tumor had not penetrated the walls of my esophagus and that my cancer was “localized” the surgical pathology analysis of the lymph nodes removed around my esophagus showed positive for cancer cells. So, while I was recovering from surgery, I had five more months of aggressive chemotherapy.

I was 61 years old when I was diagnosed, and like you, I asked, “do I really want to go through all of this just to become a burden on my wife and drain our savings for one medical “let’s try this” after another”? All the while, being sick and miserable from the side effects of the treatment? Not to mention, I was just plain scared of the surgery itself. I have to admit, the first time my surgeon described what she was going to do to me, it made me sick to my stomach.

I had the “old style, open, Ivor Lewis” surgical approach. Not the approach I would recommend for anyone who is considering surgery today. Back when I had my surgery there were not a lot of surgeons who were experienced in minimally invasive esophagectomy surgery. Doctors like Dr. James Luketich at UPMC were just starting to educate the medical community about laparoscopic surgical approaches for esophageal surgeries. If I were going to have surgery now I would go to a leading teaching hospital with a proven history of positive outcomes using minimally invasive surgical techniques.  Places like UPMC, Duke, MD Anderson, Mayo, etc. If I knew where you were located I could make a better suggestion. Your surgeon’s skill and experience along with the capabilities of the aftercare facility will make a huge difference in your recovery time and your life style after surgery.

Now 8 years after surgery I am happy for the time it gave me. I did have some life style changes to accept. The first two years after surgery I had to be very careful what I ate. Many of the things I used to love just did not work with my modified digestive system. And eating much more than half of what I used to eat made me miserable because I felt “stuffed and bloated”. But over time I learned to eat seven small “meals” a day and I have learned to avoid certain foods that are high in sugar content or very spicy. Now I can eat pretty much everything I want, just not as much as I used to.

So, surgery was the right decision for me, but it is an individual choice and not without risk. But this surgery IS NOT something for your local thoracic surgeon to perform, even if he says he has done a few. If you decide to have this surgery find yourself a surgeon and an aftercare facility that does MANY of these surgeries every year. Even if you have to travel, most of the leading centers have facilities where you and your wife can stay before and after surgery until you are ready to return home.

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
Eight Year Survivor

 

Life may not be the party we hoped for, but while we are here we might as well dance!

LorettaMarshall

Steve~Life's more than a game of Russian roulette or a coin toss

Dear Steve –

Although I’m on sort of a self-imposed sabbatical because I am currently on chemo treatments for my own Stage IV Ovarian Cancer diagnosis, I feel compelled to answer you.  I have two good “responders” on this site who are always helpful and they’ve been doing the “heavy lifting” for some time now.  I see Paul has answered you and please take his advice.  He knows what he is talking about.  However, I cannot resist answering your questions.

Steve – you’ve asked some very direct questions and I’m not averse to giving you some very direct answers coming from the viewpoint of a cancer patient myself, with a terminal diagnosis.  So bear with me.  For tonight, since it is late already, I will only cover the basic questions you have asked.  Normally, I compile a very detailed list of things each “newbie” should know, but for tonight, let me give you some “sage advice” from an “oldie” writing to a “newbie”. 

FIRST off, don’t write yourself off at age 69!  With a Stage III diagnosis and no lymph node involvement and no metastasis (spread) to distant organs you are in a good place.  I imagine your diagnosis is Adenocarcinoma at the Gastroesophageal junction.  Although it is never a diagnosis that you would desire, you are in an enviable position.  If you were a Stage IV, you would only be eligible for palliative surgery that would most likely include radiation and chemotherapy, and even then the meds would depend on where the cancer had spread.  Different chemos work differently on different diagnoses.  So count your blessings to be able to have the prospect of surgery in your “long-distance vision.”

SECONDLY – You may fare well with the chemo and radiation or it may send you for a loop that will make you wonder if you will survive it.  You haven’t included any extra info on your “about me” page, so I have to guess at what you’re going to be having in the way of chemotherapy.  The schedule you’ve outlined is normal for a person after all tests have been completed.  Since chemo is cumulative, you will probably have an interim CT scan to assess your progression and how the chemo is working.  Then after completion of the 6^th cycle (that depends on an individual as to how often the chemo is given and how often the radiation is given).

At the end of treatments, it is not unusual to wait 3 weeks or so to perform the final PET/CT scan to see how effective the treatments have been.  And because scar tissue buildup is common from the radiation especially, a surgery date will then be scheduled.  So this is taking for granted that all will go well, and that the neo-adjuvant (pre-op) treatments will all go along well without a hitch.  I would suggest that you key in http://chemocare.com/.  Then find the names of the drugs that you are receiving and you will understand the side effects that many of us will experience.  Some sail through with little difficulty while others are “sick as a dog” to use an old phrase, meaning “bad off!”  Remember, I’m not about dancing around the truth about Esophageal Cancer. 

THIRDLY, you write “My concern is more on my location and the number of these operations that are performed every year.  I do have a surgeon that is no doubt qualified but I have to ask myself how long has it been since he was doing them on a weekly basis and how many since he moved to here as well as how much of his skill has deteriorated over that time period.”…………………..Now Steve, are you talking about the location of your cancer or the place where you live?  Are you wondering about the medical facility at which you are currently being treated and wondering just how well qualified your surgeon is to perform the operation.  I believe you’re talking about where you’re being seen presently.  Those are very important questions to ask.  There are surgeons and then there are “surgeons” and they didn’t all make the same grades at school.  I know some very bad surgeons at performing esophagectomies and I know some excellent ones. 

And mind you, you may be saying just who is this lady and should I listen to her?  I’ll save my “credentials” to the end if you don’t mind.  For now, I’m concerned about you and your present state of mind as far as your future is concerned. Believe me—my husband and I have had all the misgivings and misconceptions you are presently entertaining.  We know you are in a dither and don’t know what to do.  And believe it or not, we’re glad you wrote here.

 FOURTHLY -     If I were you, I would always have a second opinion, and that can take place by presenting your medical records to a well-known hospital that specializes in Gastric surgery, the category under which Esophageal Cancer is listed.  You’ve got some legitimate concerns there.  There are different types of esophagectomies ranging from “TransThoracic (TTE) “open” (the most invasive) to totally laparoscopic (Ivor Lewis Minimally Invasive Esophagectomy) – aka MIE – the very least invasive.    I would settle for nothing less than the totally laparoscopic surgery. 

Then it would also have to be at a highly-rated hospital that has as one of their specialties the “Minimally Invasive Esophagectomy”.  Don’t “settle” for less than the best, and sounds like you may have good insurance since you’ve been taking care of your finances very well.  So much for that on surgeries for now--remembering that it’s late already tonight.  You’re getting a condensed version of what I would normally write.

FIFTH – You write:  “I keep coming back in my mind to the same place and that is what is more important to me at this time in my life.  I am 69 years old and will be almost 70 by the time we do the surgery.  The question I keep asking myself is this.  Is the quality of the rest of my life more important than the few years I might gain?  If the chemo and radiation are successful and when we do the pet a few weeks later and it looks to have killed it do I flip the coin and hope for the best and do a booster to make sure we killed all of it or do I go thru with the surgery…”

Steve, 70 years old is not ancient and esophagectomies have been performed on people in their 80s. So don’t let your age be a factor.  Now you haven’t told us what your symptoms were that made you go to the doctor in the first place.  Most often people complain of difficulty swallowing and as a result change their eating habits or suffer with heartburn and take some kind of acid reducer trying to stop the pain.  Nevertheless, forget your age—that’s immaterial here!

You ask, “Is the quality of the rest of my life more important than the few years I might gain?”  Seems to me you are “figuring out how the rest of your life will go if you don’t have surgery and if you do!”  Since you’re a newbie, I’ll accept the fact that you’re in a dither and rightly so.  But Steve, you’re not in charge of the rest of your life, are you—I’m certainly not! 

You seem to be saying I’m not feeling so bad right now so do I want to forfeit the way I feel presently and take a gamble on surgery that may or may not work?  Steve, this chemo may not be a “piece of cake” and you may ask yourself if you’re gonna’ live through it, so you’d better take it one day at a time, instead of getting that far ahead of yourself.

Steve, when my husband was diagnosed his doctors told him that even if the pre-op chemo and radiation prove to be successful and checked out as completely eradicated on the follow-up PET scan, you will have the surgery.  They explained that even with scans, there are sometimes cancers that are not actually discovered until the actual surgery is being performed.  So there’s no guarantee that “it’s all gone” and there certainly isn’t any “booster shots” to make sure it’s all gone.  I must tell you that “recurrence” is always a possibility.  The earlier the stage, the better the chances that it will not recur, but you need to know that Stage III Esophageal is not “early”—it is in the advanced stage category!  So forget that notion please!

Your life is worth more than the “flip of a coin” Steve. I liken a person that thinks that chemo and radiation will completely eradicate esophageal cancer to a game of Russian roulette.  Only in this case, instead of one chamber loaded with a bullet, how about all the chambers but one are loaded with a bullet?  That’s the game you would be playing.  So if there are 6 chambers, and 5 of them are loaded, do you want to take that chance?  And with the flip of a coin, there’s a 50% chance you’ll be “dead wrong” in your decision-making process! 

STEVE – SHORT ANSWER – YOU GO THROUGH THE SURGERY and be darned thankful that you are a surgical candidate!

You also write: “I went back to work after 5 years last year and pulled my family pretty much out of debt and am supposed to go back this year about the time I am supposed to have the surgery.   I work seasonal so time is always a factor when I work. 

 Do I put my family first and try and pull us completely out of debt so if the worst happens they are debt free and our home is in good condition so they do not have that burden or do I say to heck with it and do the surgery and become a burden for at least the next 9 or ten months and never have the chance to go back to work like I can now.”  

Well Steve here again I’m glad you asked.  My husband was 65 at the time of his Stage III EC diagnosis, T3N1M0 meaning all 4 walls of his esophagus were infiltrated and two of the local lymph nodes near his esophagus.  As newbies, we heard the words “chemotherapy” and thought, “Heck no way—that stuff will  kill you!”  Little did we know. 

The surgeon explained that if we wanted to see our grandchildren grow up, we would take care of ourselves first or else they would be without one of their surrogate grandparents.  And Lord knows, I didn’t want to be a widow at age 63 with 4 grandchildren to raise all by myself.  That put things in perspective.  In other words, if you care about the rest of your family, you will do what you have to do NOW or you won’t be around to raise your grandchildren!

So Steve, if you want to be certain that your family is “taken care of”, you must first take care of yourself.  Does that clarify things for you?

 
LASTLY – You ask, “Do I say to heck with it and do the surgery and become a burden for at least the next 9 or ten months and never have the chance to go back to work like I can now.”  

Steve—that is not so difficult to answer if you’ve lived with a Stage III cancer survivor as long as I have.  YES—YOU SAY “TO HECK WITH IT”—I’M GOING FOR THE SURGERY!

I believe your wife will be glad to have the opportunity to be your caregiver, because she wants you to be around for a long long time!

If you read my “about me” page by clicking on the photo of me and my husband, you will find a summary of our story.  It’s difficult for me to be short, but in summary—

My husband was diagnosed at age 65 with Adenocarcinoma at the GastroEsophageal (GE) junction – T3N1M0 in November of 2002.

He had pre-op treatments of Carboplatin & 5-FU plus 25 radiation treatments here locally.  We live in Virginia Beach, VA.

After treatments, Final PET/CT showed tumors completely eradicated.

SECOND OPINION @ the University of Pittsburgh Medical Center.

We chose to have the totally laparoscopic minimally invasive esophagectomy performed at UPMC by Dr. James D. Luketich.  He pioneered the MIE in the mid-90s.

Surgery took 7 hours, although some may take less—some may take more. 

Surgery date was May 17, 2003 and was totally successful—no complications.

He had small Band-Aid size cuts—no massive incisions. 

Total hospital stay of 5 days—only one day in ICU. 

Discharged on Day 5 and downtown shopping with me in Pittsburgh, PA on Day 8. 

Recovery time is shortest with the MIE and husband’s energy level was back to normal within 5 to 6 months. 

The first 3 months after surgery, we toured 3 different states and he did ALL the driving.

Nowadays his limitations are based solely on being 81 in February.  All of us “oldies” know what that is like.

We are proud to be able to share our story of success that took place 15 years ago! Our grandchildren are grown now and we have 3 great grandchildren.  We are blessed and even though all will not enjoy the same joyful story, who knows that yours will not be similar to ours.

So Steve—don’t play Russian roulette or flip a coin—your life is too precious—take care of yourself first so you can take care of your wife for hopefully many long years to come! 

Most sincerely,

Loretta (William’s wife)

 

 

sjbo659

paul61 said:

I was in your situation 8 years ago

Hello Steve,

Making a decision about surgery, particularly if you are somewhat older, is difficult. And, of course, the statistics that are published on the internet about survival outcomes are dismal. One thing to remember about those statistics; they are almost always dated and in many cases just plain obsolete. Survival statistics for esophageal cancer in general; and surgical outcome statistics in particular, have improved significantly in the last few years.

I had my treatment and surgery in 2009; with follow up chemotherapy in 2010. I would not be honest if I did not say that 2010 was probably the most difficult year of my life. Even though I was assured through a number of tests and scans that my esophageal tumor had not penetrated the walls of my esophagus and that my cancer was “localized” the surgical pathology analysis of the lymph nodes removed around my esophagus showed positive for cancer cells. So, while I was recovering from surgery, I had five more months of aggressive chemotherapy.

I was 61 years old when I was diagnosed, and like you, I asked, “do I really want to go through all of this just to become a burden on my wife and drain our savings for one medical “let’s try this” after another”? All the while, being sick and miserable from the side effects of the treatment? Not to mention, I was just plain scared of the surgery itself. I have to admit, the first time my surgeon described what she was going to do to me, it made me sick to my stomach.

I had the “old style, open, Ivor Lewis” surgical approach. Not the approach I would recommend for anyone who is considering surgery today. Back when I had my surgery there were not a lot of surgeons who were experienced in minimally invasive esophagectomy surgery. Doctors like Dr. James Luketich at UPMC were just starting to educate the medical community about laparoscopic surgical approaches for esophageal surgeries. If I were going to have surgery now I would go to a leading teaching hospital with a proven history of positive outcomes using minimally invasive surgical techniques.  Places like UPMC, Duke, MD Anderson, Mayo, etc. If I knew where you were located I could make a better suggestion. Your surgeon’s skill and experience along with the capabilities of the aftercare facility will make a huge difference in your recovery time and your life style after surgery.

Now 8 years after surgery I am happy for the time it gave me. I did have some life style changes to accept. The first two years after surgery I had to be very careful what I ate. Many of the things I used to love just did not work with my modified digestive system. And eating much more than half of what I used to eat made me miserable because I felt “stuffed and bloated”. But over time I learned to eat seven small “meals” a day and I have learned to avoid certain foods that are high in sugar content or very spicy. Now I can eat pretty much everything I want, just not as much as I used to.

So, surgery was the right decision for me, but it is an individual choice and not without risk. But this surgery IS NOT something for your local thoracic surgeon to perform, even if he says he has done a few. If you decide to have this surgery find yourself a surgeon and an aftercare facility that does MANY of these surgeries every year. Even if you have to travel, most of the leading centers have facilities where you and your wife can stay before and after surgery until you are ready to return home.

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
Eight Year Survivor

 

Life may not be the party we hoped for, but while we are here we might as well dance!

Thank youfor the reply

Thank you Mr. Adams for your thoughtful response.  I am in Alaska and the only place here where I can have the surgery is Providence Hospital.  It is the largest in the state but when you check ratings it does not score very well  in some areas such as infections, and 30 day survival after surgery and in other areas even though it is an NIC hospital.  My surgeon is Dr Charles Portera, MD, F.A.C.S did his fellowship at MD Anderson but most of his career was spent in Tennessee until he moved to Alaska 4 years ago and from what I can tell is probably the best Surgeon in the state of Aalska for this particular surgery.  But since the entire outcome is dependent on all aspects of the treatment from the beginning to the end all things must be taken into consideration before the final decision is made.  Even though I am married I do not consider my support system to be very strong so in a worse case senario even if I were not here to have it done I would probably fair just as well after the surgery as I would here.  I am dealing with a spouce that has a very serious drinking problem and once she starts I could be on my death bed and she would be telling me to do something around the house regardless of my condition.  That said I do not want to use that as an excuse but we all have very different situations and we have to base our decision on our circumstances.  The second thing I need to consider if I were to go to a place like MD Anderson which my insurance would pay for so the cost at this point is not a hindering point is the aftercare once I return home as a lot of Dr. would not be as willing to do it if something were to become a complication and I would be 5000 miles away from the surgons there.  I have talked  to a lot of cancer surivors here and the majority of them made the decision to go elsewhere  becuase of the same reasons I have but most had very good support systems and had loved ones who made the trip with them.  In my case it would be me going alone to someplace I have never been and getting a Dr. I have never met.  All these things are weighing heavily on my right now and I do hope they are not going to cause me to make the wrong decision in the end.  Anyway, thank you again. Steve

sjbo659

Thank you for the reply

1:  I imagine your diagnosis is Adenocarcinoma at the Gastroesophageal junction. YES

2: Chimo is being given ones a week and radiation treatment 5 days a week

3:I livein Alaska and there is only Prividence Medical Cenetr where I can go.  Its a large rural hospitila the way the ranking refer to it.  However some of the scores that have are very disturbing such as the 30 day survival rate and the rate of after surgery infections.  My Dr Charles Portera, MD, F.A.C.S did his fellowship at MD Anderson but most of his career was spent in Tennessee until he moved to Alaska 4 years ago. As far as I have been able to tell him and one other Dr here are the two primary onces that do this operation and he is by far the most recommended even though there are a lot of MD's who say they do them as well. Just last Monday there was an article in the local paoper with the percentage if these operations done in the state and out of all tyes they amounted to only 1.6% of total operations.  Split that between the Drs who do the operation and they cannot be doing very many per year.

4.He wants to do the total opening me up and not the laposcopic which was what I was wanitng but siad because of where its at it woul dno tbe able to be done which did not make sense to me since they have said its not into any other organs and has just reached the outter wall.

5:My symtops started towards the end of last years work station when I would stop during the day to by a sandwich or a fish sandwich as I work for a road company and am in my truck 12 hrs a day and eating on the run every day.  At first it was just a little sore trying to swallow then it got worse over the course of a month.  When I got layed off for the winter on Nover 3rd I made an appointment with my primary care dr who saw me and ordered the barium swallow.  The Dr saw right away the closeing at the GE junction so order me to do further tests. The origional surgen I was refered to could not get me in for three weeks so she refered me to another who turned out to be great and he had me in the day surgey within three days after he saw me and did the scope and biopsey.  By then we were into the second week of Dec. After we got the biopsy report back He made the appointment for me to see Dr Potera and that was a couple days later.  He ordered the next tels which was the ultra sounf buyt that could not be done until the 23rd of Dec and from there things got staged and now I have started the Chimo and radiation today.

6: As I expalined to Paul above I am very well aware of what I am dealing with.  But in my case I am also dealing with a wife and a serious drinking problem that not just once in awhile but daily.  I did explain this to my Dr as well becuase he has to know also what I deal with daily.  Do I want to die prematurely if theres a chance I won't, NO  But do I want to be cut up like a fish and not get the best there is and thats NO too.  MY Dr supposedly is trained in the Lapscopic techniiques but he says he won't do it for some reason.  Maybe its just not his expertise and he feels more confident in the old way of completely opening you up and in my not professional opinion thats just asking for more complecations.  So my plan is this at leasdt for the time being.  I am going to finish the Chimo and the radiation.  I have a six week period after that to recover form it before they want to do the surgery.  I am putting together a packet with all the information in it including the fils I have on disc of the Pet.  Then I am going to send them to Both MD Anderson and to Memorial Sloan Kettering and have the do an evaluation to see if they feel I am a cadidate for the laposcopic suregery.  In either case the Process they are doing here is the Gold standard and is the same process they woudl do there according to my Surgeon.  I think thats being logical.  Your opeion would be greatly appreciated now that you have mroe information.  Steve  PS:  I do hope your treratments are successful and that your husband continues to do well too.  This is an aweful thing to deal with.