Choosing not to have surgery - Am I crazy?

Cabobob~Thoughts from a "T3N1M0" surgical survivor of 14 yrs!

 An early Good morning to you “Cabobob”

  Are we reading from the same New England Journal report?  You’ve asked are you crazy?  Do you want an honest answer?  I’ll hold off on that, but I already have an answer on the tip of my tongue!  Since you asked for “comments” might I make a few?

 I’m not used to seeing the phrase “chemo/beamo”.  Is that one and the same as chemo and radiation?  In any event, is your diagnosis the same one that is most often termed, Adenocarcinoma at the Gastroesophageal junction? 

 You say your diagnosis is “T3N0”. 

•  This link:  http://www.cancer.net/cancer-types/esophageal-cancer is very informative and is a trusted site. 

 The stages of Esophageal Cancer are outlined here:

•   (http://www.cancer.net/cancer-types/esophageal-cancer/stages)

 “…Here are more details on each part of the TNM system for esophageal cancer:

           Tumor (T)

 Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the tumor, including whether the cancer has grown into the wall of the esophagus or nearby tissue, and if so, how deep. Some stages are also divided into smaller groups that help describe the tumor in even more detail. Specific tumor stage information is listed below.

 TX: The primary tumor cannot be evaluated.

 T0: There is no cancer in the esophagus.

 Tis: This is called carcinoma (cancer) in situ. Carcinoma in situ is very early cancer. Cancer cells are in only one small area of the top lining of the esophagus without any spread into the lining.

 T1: There is a tumor in the lamina propria and the 2 inside layers of the esophagus called the submucosa. Cancer cells have spread into the lining of the esophagus.

 T2: The tumor is in the third layer of the esophagus called the muscularis propria. Cancer cells have spread into but not through the muscle wall of the esophagus.

   T3: The tumor is in the outer layer of the esophagus called the adventitia. Cancer cells have spread through the entire muscle wall of the esophagus into surrounding tissue.

   T4: The tumor has spread outside the esophagus into areas around it. Cancer cells have spread to structures surrounding the esophagus, including the large blood vessel coming from the heart called the aorta, the windpipe, diaphragm, and the pleural lining of the lung.

          Node (N)

 The “N” in the TNM staging system stands for lymph nodes. In esophageal cancer, lymph nodes near the esophagus and in the chest are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes.

 NX: The lymph nodes cannot be evaluated.

  N0: The cancer was not found in any lymph nodes.

  N1: The cancer has spread to 1 or 2 lymph nodes in the chest, near the tumor.

 N2: The cancer has spread to 3 to 6 lymph nodes in the chest, near the tumor.

 N3: The cancer has spread to 7 or more lymph nodes in the chest, near the tumor.

           Metastasis (M)

 The "M" in the TNM system indicates whether the cancer has spread to other parts of the body.

 MX: Metastasis cannot be evaluated.

 M0: The cancer has not spread to other parts of the body.

 M1: The cancer has spread to another part of the body…”

  Accordingly, your diagnosis of “T3” seems to be thus:  Your cancer has penetrated ALL four walls of your Esophagus into surrounding tissue!  The “N0” indicates that thus far it has not spread into the lymph nodes.  You are blessed.

 In my years of reading about Esophageal Cancer and my firsthand knowledge of it due to my own husband’s diagnosis of Esophageal Cancer, “T3N1M0”, his thoracic surgeon said he should  have the surgery, even if the pre-op chemo of 5-FU and Carboplatin showed a complete removal of the cancers.  The surgeon said that often microscopic cancer may still be present and not picked up by the scan.  During surgery usually a minimum of 22 lymph nodes are tested by the pathologist for cancer that may not have been previously detected. 

The “T3N1M0” diagnosis meant that all 4 walls of my husband’s Esophagus had been infiltrated with cancer.  The “N1” category as noted above, meant that it had already begun to spread into the lymph node system and had affected 2 lymph nodes.  The “M0” was a godsend category.  It meant that the cancer had not yet made its way to another major organ, as it so often does with patients who are diagnosed with Esophageal Cancer!  Many patients have symptoms of acid reflux and heartburn and fail to go to see a Gastroenterologist.  And to the patient’s dismay, often the diagnosis when they finally consult one is that the Stage is already advanced to Stage IV. 

 My husband had 25 consecutive radiation treatments in addition to two 96-hour infusions of Carboplatin and 5-FU.  Chemo has a residual effect of about 3 weeks, so a post-treatment PET/CT scan showed “complete eradication” of the cancers as previously noted.  However, the doctor said, “You need to have an Esophagectomy even if all the pre-op work shows complete eradication PERIOD.”  He explained that surgery is best performed as early as possible after the neo-adjuvant treatments are complete because significant scar tissue can build up making the surgery more difficult, the longer the wait. 

 And so my husband was diagnosed in November of 2002.  He had the neo-adjuvant treatment here at home locally, and then traveled to the University of Pittsburgh Medical Center where he had the Ivor Lewis Minimally Invasive Esophagectomy May 17, 2003.  Dr. James D. Luketich pioneered the MIE procedure in the mid-90s and today it is the main type of surgery performed at UPMC.  It is totally laparoscopic with less hospital stay, less blood loss, less morbidity, etc. and band-aid size cuts.

 My husband had no complications, was in and out of the hospital in 5 days, and downtown shopping with me on Day 8 from surgery.  Now this is not always the normal, but it is our story of success.  And to this day, we are rejoicing that we made the best choice and went with the surgeon’s wise advice!  My husband, William, is now celebrating his 14^th year of survival with currently NED (No evidence of disease.) 

 So as I scan this NEMJ article, I come away with the conclusion that those who had the tri-modal treatment survived the longest. 

•  http://www.nejm.org/doi/full/10.1056/NEJMoa1112088#t=article

 The last paragraph in this article reads thus:  “In conclusion, preoperative chemoradiotherapy (five courses of carboplatin and paclitaxel, with 41.4 Gy of concurrent radiotherapy) is safe and LEADS TO A SIGNIFICANT INCREASE IN OVERALL SURVIVAL AMONG PATIENTS WITH ADENOCARCINOMA OR SQUAMOUS-CELL CARCINOMA OF THE ESOPHAGUS OR ESOPHAGOGASTRIC JUNCTION.”

 Seems to me that the conclusion is that those who had the tri-modal treatment of neo-adjuvant chemo and radiation followed by an Esophagectomy led to a “SIGNIFICANT” increase in “overall” survival!  Isn’t that what we all wish for?

 Might I pose some questions? 

 You say, You’re now in a 5 to 6 week treatment period.  If it is shown to be successful and there is no evidence of disease, you are going to WAIT and surveil the situation for a couple of months.  You mention a “salvage surgery” if you find the cancer has returned, as I understand it.

 (“ If my condition changes from NED during the survellance period, I would then have a what they call a "salvage" surgery.”)

 Question 1:  WHAT IF your treatment period did result in a NED result?  What’s to say that there were not still microscopic cancers not detectable on the scan?   

 Question 2:  WHAT IF in that 2-month wait/surveillance period, those same tumors surfaced and metastasized to another major organ?  When cancer has advanced to another major organ, then surgery is not the usual option.  At that point usually only “palliative” measures are taken, but not an actual Esophagectomy.  I’m not sure of what type of “salvage surgery” you’re speaking of.  What if conditions have worsened in that surveillance period to where there are no surgical options?

 Question 3:  Have you had a SECOND OPINION at a major medical hospital where Esophagectomies are one of their specialties?

 My final comment:  If I were you, and know what I know now, I would not wait 2 months after the treatment period to see if the cancer has returned.  It might have indeed “returned with a vengeance” which it can, and even a “so-called salvage surgery” would not be possible.  Personally, that’s a gamble I would not take.  I'll stop short of saying "You're crazy.  That's a question to be answered by someone "above my pay grade."  But perhaps you are just woefully uninformed!"

 Loretta Marshall, wife of William, EC Stage “T3N1M0), now in his 14^th year of survival after surgery and so far with no evidence of disease.  That’s a miracle.

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Videos relative to Esophageal Cancer and surgical procedures which you should find informative.

 1.  https://www.youtube.com/watch?v=FvgEaDVCKfA

 Illustrative video explaining Esophageal Cancer

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2.  http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy

 A lecture by Dr. James D. Luketich

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 3.  http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy/item/2

 A second lecture by another UPMC surgeon.

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 4.  https://www.youtube.com/watch?v=hx4hS21AbuI

 “This is a noted Thoracic Surgeon, Dr. Ninh Nguyen” who served with Dr. Luketich in the mid-90s when the Minimally Invasive Ivor Lewis Esophagectomy was first pioneered.  He is a gifted surgeon and has written extensively articles that have been published in medical journals on the subject of Esophageal cancer as has Dr. Luketich. 

  “Uploaded on May 4, 2011

 DUE TO THE GRAPHIC NATURE OF THIS VIDEO, VIEWER DISCRETION IS ADVISED.
  Minimally Invasive Esophagectomy featuring Ninh T. Nguyen, MD, Professor of Surgery Chief, Division of Gastrointestinal Surgery, University of California, Irvine Medical Center (SDMK13CD0800259)”

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 5.  https://www.youtube.com/watch?v=s3UmyJX-7nM

 There is another type of surgery known as Transhiatal Esophagectomy (THE).  It is not as minimally invasive as the surgery Dr. Luketich performs, the (MIE) but it is better than the “open” Esophagectomy known as the Transthoracic Esophagectomy or (TTE)

  “Published on Jul 26, 2013

  James Luketich, MD, interviews Mark Orringer, MD, who discusses the procedure that Dr. Orringer, Univ. of Michigan, pioneered: the Transhiatal esophagectomy. He reviews the key steps in the procedure to make this a successful operation.”

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6.  https://www.youtube.com/watch?v=vkxE7ABaq3Y&list=QL&feature=BF

 “A surgery you definitely do NOT want.  But he is a noted Russian surgery.”  This is an “OPEN” surgery as you can see!  It is filmed in 2009.  I'm sure our facilities here in the states are not this "primitive" but none the less, it is what it is--OPEN surgery.

  _________________________End of references________________

 

This is an aggressive beast

Hello Cabobob,

I can't give advice, only share my decisions and outcomes.

Last July, 2015, I was 75 years old and had just had a routine lower endoscopy which went well.  In discussion with the gastroenterologist afterwards I described some other symptoms which led him to immediately suggest an upper endoscopy.  The result of that was that I had been experiencing what he called “Silent GERD” and had developed Barrett’s Esophagus which he biopsied.  A week or so later the results came back that this contained cancer cells.  I asked him how aggressive this was.  The answer “very!”

If only my dentist would have suggested an upper endoscopy a year or more earlier!  The symptom I had was serious wisdom tooth decay.  Instead I got heavy fluoridated toothpaste + a couple of fillings.

I am fortunate that I live close to the Medical University of South Carolina and they have some wonderful physicians there.  A quick repeat test at MUSC involving sonar indicated that the cancer was deep enough that I was not a candidate for the easiest treatment…floating off a layer or two of cells with saline.  It turned out that it was T3N1 and probably M0.  Still it appeared to be relatively encapsulated.

As others have said, there is a statistics of this stuff.  I have been doing statistical stuff all my life since I am a scientist.  However, I am not a statistical universe and I didn’t want to be part of the group that doesn’t succeed.  I elected to have the Ivor Lewis surgery immediately which I did at the end of August.  The surgeon performs a significant number of these procedures each year.  We decided to have surgery first and do the radiation and chemo second. No fooling around with aggressive stuff.  A cell starts to migrate and blooey...there you go.

I wish I could say that things went well.  They didn’t.  Within three days of returning home I experienced a collapsed right lung due to fluid buildup.  Back to the hospital in an ambulance for the insertion of drains and some suction to eliminate the fluid.  The amount removed was measured in liters.  Multiple!

After going home again a week later my surgeon was unhappy with the CT scan results and my progress.  I had acquired an infection.  After struggling with that via antibiotics for a week or two he recommended another surgery to decorticate my lung (and diaphram as it turned out) and remove the infection directly which was done.  All in all I had been hospitalized for 6 weeks.

The surgery removed two-thirds of the esophagus plus part of the stomach plus some lymph nodes.  One lymph node had cancer in it.  The mdeical oncologist suggested that was very good news as cancer cells rarely jump a large number of lymph nodes.

Following surgery I experienced a numbness along the cartilage that encapsulates the front of the ribs.  There is no doubt that the Ivor Lewis surgery with rib spreaders is the cause.  This has gradually dissipated and now, about 15 months afterwards it is receding. 

Oh, and the radiation oncologist said he wouldn’t know where to aim.  The cancer was all gone as far as he was concerned.  The medical oncologist said that there was no point to chemo.

Oh, and now I have an incisional hernia which is to be repaired next month.  It will involve another couple days in the hospital for observation.

I guess you could say that I probably define the meaning of the word outlier when it comes to this particular experience.  I understand your reluctance to take it on. 

Today, 15 months later, the CT scans all show good results.  No evidence of disease!

So, would I do it again?  Absolutely.  The cancer appears to be gone.  I am feeling better and better.  Do I like the lifestyle, sleeping on an angle?  No.  However, my confidence is now high that I no longer have that disease. 

I wish you well in your decision.

 

surgery experience

My father was originally not a candidate for surgery due to advanced age and poor health.  He was turned down by more than one surgeon but he wanted surgery to get best chances.  He tolerated the chemo and radiation so well that he was later approved for surgery.  It was not an easy surgery but he had no complications at 80 years old with a host of pre-existing health problems.  He can eat anything he wants now just smaller portions.  we recently added digestive enzymes to his daily routine and that has helped significantly with indigestion.  about 18 months after surgery they found one tiny distant recurrence in lung (1.5 cm) on a routine scan. he was recently treated with cyber knife radation.  no side effects or discomfort from that.  CT results today show significant shrinkage of the tumor and no sign of any new tumors.  its been over two years since original diagnosis now and he is doing well with very good quality of life.   no regrets.  

"KB"-Stage 3 EC is advanced & requires surgery as part of trtmnt

Hello “KB”

You and I have spoken briefly earlier in December.  Your husband may be entertaining the idea, like a few others, but only a few I might say, thinking that if the chemo/radiation treatments show “no evidence of cancer” after the treatments, then there will be “no need” for an esophagectomy.  May I tell you frankly, he is “playing Russian roulette” with his life, and yours too.  Having monitored this site for years, I can tell you the same thing our surgeons told us, “even if the pre-op chemo shows total eradication of the tumors in the Esophagus, surgery is still NECESSARY.  This for the reasons I have outlined above already in a previous response to “Cabobob.”

If your husband knew what we “survivors” knew, he would be thanking God that he is a potential candidate for an esophagectomy.   And may I say as always, please get a SECOND OPINION from a major hospital that has as one of their SPECIALTIES, THE IVOR LEWIS MINIMALLY INVASIVE ESOPHAGECTOMY (MIE).

And another piece of advice, during my years here, stents do not have a “good reputation” for the most of our fellow patients.  I know one daughter who said her dad never had another well day after the stent was inserted.  He had a back ache and a constant cough.  I would not advise a stent.  Often during the radiation designed to shrink the tumor, it will cause the stent to migrate to the stomach and then it has to be surgically removed.  At other times the stent, depending on the type can actually become enmeshed with the tumor itself, and be impossible to remove.  At other times it has been shown to cause the food to lodge at the base of the esophagus and hinder the food from passing into the stomach.  So knowing what I know from reading behind others and listening to their complaints, plus doing research, a stent would be a “non-starter” if this were my husband.

Futhermore, a “J” tube would be the best guarantee for successful feeding during this time of chemotherapy/radiation.  This is surgically placed into the second section of the small intestine known as the “Jejunum”.  If a medical team suggests putting in a G-tube that goes into the stomach for feeding, that will have to be “removed” prior to surgery.  One of the best surgeons that I know about says in his excellent videos, he personally does NOT LIKE a G-tube because it has to be removed a couple of days prior to surgery.  As he uses the stomach for a new “gastric tube” he prefers it not be compromised previously with a gastric tube.  I suggest you view some of the videos in "Cabobob's" letter I wrote to him.

You haven’t asked a lot of questions, but we know where you are in this process, and we know of your anxieties.  They are common to all.  We here, care deeply, that our brothers and sisters get the very best care, and avoid the many pitfalls that can be encountered by not being truly informed about the “do’s and don’ts” of this major surgery.  And as “ED” always says, this is not an operation that can be done at any corner hospital.  And may I add that all hospitals do not rate the same when it comes to their skills in performing Esophagectomies.  So I say, a word to the wise is sufficient.  Do your homework and please dissuade your husband of any ideas of just bypassing the surgery.  Surely his surgeons have already advised him of this.  If not, they should have.  There are oh so many stage IVs who come here who would “give an arm or a leg” to be able to have the surgery, but cannot because the cancer has already marched on to one or more other organs.  Those IVs only have the possibility of palliative treatments, but can never entertain the hope of being made “whole” again. 

There are successes and I know it is your prayer, as is ours, that every possible measure will be taken to insure that this cancer is stopped in its tracks before it can advance to another organ.  The esophagectomy gives you and your husband the best chance of a happier NEW year and many more to come.  May God guide and bless you in all the days that lie ahead.

Sincerely, Loretta (William’s wife)

(William DX 11-02 w/EC Stage III (T3N1M0), II opinion, pre-op chemo/radiation Carboplatin/5-FU plus radiation, then surgery May 17, 2003, at the University of Pittsburgh Medical Ctr. (UPMC) by thoracic surgeon, Dr. James D. Luketich, who pioneered the minimally invasive esophagectomy (totally laparoscopic) in the mid 90’s.  It’s not a “new kid on the block”—it is the preferred surgery for the quickest recovery (barring complications of course.)

 

Greetings / What did you decide?

Hi CaboBob,

I started my esophageal cancer journey in Sept 2014 when it was first diagnosed. I had chemo-radiation, then decided to go the naturopathic route. I did that for 3 years and through some interesting circumstances I finally submitted to the surgery on March 14, 2017. I'm now 10 months out from that surgery. Let me know what you decided and why, if you would. I'm interested because I just wrote my experience in a book to help others both process the operation as well as survive overall. Let me know if you want info on the book. You can write me at cancereclipse@gmail.com

You Are NOT Crazy

I am 56 years old powerlifter/bodybuilder who was struck with this disease with zero symptoms.  Furthermore,  I am professionally employed as a Healthcare Fraud Investigator.  I just finished five (5) weeks of chemotherapy and radiation.  I have lost approximately 45 pounds of my precious muscle that took me 43 years to build.  I am still in a state of shock.

My last solid meal was on or about March 2 and the only nutrients supplied was from that nasty feeding tube.  I was unable to swallow my spit.  Amazingly,  I begin to eat and drink (without restrictions) again approximately two (2) weeks ago. 

I'm a big quality of life guy.  I had rather have 2 years at full speed than 20 with the potential life long devastating side effects brought on by the surgery.  Yes, I am a mathematical numbers person and the odds for quality of life are not in your favor, PERIOD if you elect to have the surgery. I understand that a couple of you took the time to respond with your success stories and I am so happy that it worked out for you but what about the hundreds (likely thousands) that it didn't work for? They would be unrepresented in this forum because they are either deceased or to sick to care. 

Each individual has to conduct as much research as possible and then weigh the cost/benefit factor and make the best decision you can make and stick to it.

I am traveling to MD Anderson to get a second opinion before rolling my dice. At this point I am leaning towards no surgery. 

siutis12 said:

Congratulations

I love to hear stories like this.  Good job for refusing surgery and taking a watchful waiting approach.  Please keep me updated and I will do the same. My tumor was so large they have yet to stage me. Since it responded to chemotherapy and radiation and I can now eat as before, they should be able to perform an endoscopy and ultrasound for a complete staging. 

Take care.

 

Update, metabolically speaking my once very large esophageal tumor went from 10.9 to a 4.2 on the PET. Consequently I flatly refused to submit to the barbaric surgery guaranteed only to give you life London side effects and no promise for a better survival rate. I told my surgeon to pull out my feeding tube  (happiest day of my life) and the mediport.  My medical oncologist opined that I had six months to live last Tuesday.  I had an endoscopy on Thursday.  The tumor was not located. The esophagus is thicker where the tumor once was . The biopsy report will be ready on Tuesday. My radiation oncologist said that this complete response should give me 2-3 years and NOT 6 months.  We are taking a watchful waiting approach.  

This disease ruined my life.  Previously I possesse the energy levels of a teenager and the body of a 30 year old.  I was a competitive powerlifter and bodybuilder.  I did not have GERD, acid reflux. Nothing unclean went in my body. I have lost 35 pounds of my precious muscle mass that took me 43 years to build.  My energy levels resembles a 90 year old man and my appearance follows suit. 

I was professionally employed as a Healthcare Fraud Investigator.  I have been off work several months and will never go back to the job I left. I am not physically or mentally able do to do it. 

Non surgical candidate

I am also a non surgical candidate, diagnosed Stage 4 (T3, N2, M?) August of 2018. They still can not clearly tell whether I had a liver metastasis or not. I had two esophageal tumors, and did have Mets to 6 different lymph node sites, all have completely resolved at this point, according to most recent CT and pet scans. 

I don't think the Original poster is crazy, though I am curious about his outcome and whereabouts.

 

Be thankful at this point that you have a choice, Mayo said initially that I am a non surgical candidate, and at this point I have not bothered with a second opinion. They would set up a consult for aggressive chemo/radiation, but then again quality of life comes into play. And I would have to leave to study trial that has worked so well for me this far. At this point why mess with something that has given me a complete response?

 

Whatever decision you choose is the right decision. There are always "what ifs" after you have already made those choices. I agree with your here, like me you are younger than most and relatively healthy yet, which increases your ability to fight this monster no matter what. And we are not hearing from the thousands of people alone who die in this country even after having the surgery.

 

Statistically I should not be typing this right now. If I made the career change I had planned last August and put the symptoms off a few more months, theres a good chance I would not be writing this right now. By the grace of God, here I am.

 

One thing my oncologist did tell me, is that with most cancers if you can remain NED for 5 to ideally 7 years, there is a good chance you have beat it. Any recurrence puts you back to square 1.

 

There is a big difference between complete metabolic response and complete pathologic response, which is extremely hard to determine with an aggressive cancer like this.