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Dad diagnosed of squamous cell carcinoma (update in comments, another update surgery completed)

Mayflower18
Posts: 8
Joined: Jun 2017

Thos may be a long post. My dad had some symptoms like pains in the chest area which was unbearable other than that he always had reflux. He immidiately went to dr and got  a  CT scan. Everything normal except mid esophageal wall thickening of 10 mm. lymph nodes normal everything else basically says normal. Did endoscopic biopsy next day result came back 3 days later positive for moderately diff. Squamous cell carcinoma involving mid esophagus. The upper and lower esophagus and GI junction seems normal. This is in India. We showed the reports to a top dr in another city who specializes in MIE. They have fixed the surgery date to June 19th. No pet scan or anything. Except the dr said we got lucky we caught it in the beginning and he is optimistic of cure . He is going to do a latest procedure called robotic assisted laparoscopic surgery. The difficult thing is me(dd) , sister and mom all in USA now. My mom is leaving day after tomorrow and my sister next week . None of us or my dad talked to the dr directly . A relative of my sister who is pretty knowledgeable and knows the dr showed the reports to him and set up a surgery date. My dad is eating normally solids and liquids only symptom he gets the chest pain now and then . 

Now my doubt is when I read here it seems chemo/radio is always first and then they do the surgery. But for my dad it's going to be surgery first then probably radiation and/or chemo if needed. Should I get a second opinion?

 

paul61's picture
paul61
Posts: 1367
Joined: Apr 2010

I had a diagnostic history similar to your Dad’s. I had adenocarcinoma of the esophagus; but had the same initial tests that your Dad had. They said “good news we have caught it very early and we will go straight to surgery”. When they got the pathology results back on the tissue removed in surgery they found that I had active cancer cells in one of the lymph nodes removed during surgery. They then recommended follow up chemotherapy after surgery.

Chemotherapy is difficult under the best conditions, but going through chemotherapy while trying to recover from a major surgery, is very difficult.

I would very much recommend a second opinion and perhaps a PET scan to insure the cancer inside the esophageal wall.

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
Seven Year Survivor

 

Mayflower18
Posts: 8
Joined: Jun 2017

Thank you Paul. I will keep this post updated as things move on . Do you remember what symptoms you had ? My dad for now is feeling and eating normal. He does get the pain in chest once in a while but said it's bearable. 

paul61's picture
paul61
Posts: 1367
Joined: Apr 2010

My initial symptoms were not very pronounced. It included occasional pain when swallowing and sometimes a feeling like my food was getting stuck on the way down but it always cleared when I drank something. I originally went to my primary care physician because I was having frequent acid reflux at night. In fact I had been having acid indigestion for most of my adult life but I had heard that there was a medication I could get from my doctor that would help more than the Tums I was taking on a regular basis. He said “Let’s run some tests just to be safe” and that is when they found the tumor.

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
Seven Year Survivor

 

Deathorglory's picture
Deathorglory
Posts: 327
Joined: Jul 2013

Hello Mayflower,

When I started down this road in 2008 with Stage III EC, I had had reflux for years (decades actually).  What spurred me to get checked was that food was getting stuck in my throat.  I found out this is called dysphagia and is a common symptom of EC.  Reflux generally leads to adenocarcinoma, which is what I have, not as frequently to squamous cell carcinoma like your dad has.  Hopefuly, they've caught him very early (Stage I is ideal) like you've said.  Treatments are generally much more successful when EC is caught early.

As far as your dad's proposed treatment goes, my understanding (I'M NOT A DOCTOR!!) is that somoetimes surgery will be done by itself if the cancer is caught early enough.  Trimodal (radiation/chemo/surgery) therapy is what I understand is the most common path if it is possible.  I would certainly ask about this with your dad's doctors and perhaps seek a second opinion.  EC isn't something you want to treat casually, you want to make sure you're doing the best you can do the first time, because too frequently there isn't a second chance.

Wishing you & your father the best,

Ed

Mayflower18
Posts: 8
Joined: Jun 2017

Thanks Ed. The surgery is fixed now on June 20th. But they will be doing a lot of tests before the surgery. They will also do a cardiac test it seems. The dr seems confident on a cure through surgery. They will follow up with chemo/radiation if necessary. Again the issue is I am not able to talk directly with the doctor. He and my mom are traveling next week from their home town to the city where surgery will take place. We may be getting a clear picture next week. I will keep updated.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Mayflower ~

My letter turned into more of a mini-book, so I put it on a separate link.  https://csn.cancer.org/node/310120

You won't be expected to "digest" all of this in one sitting.  Surprised But it will give you a guide as to what the Ivor Lewis Minimally Invasive Esophagectomy involves, plus results of clinical trials, and some videos as well regarding Esophageal Cancer.  Hope all the family that's traveling will have safety and that Dad will have the very best surgeon in India. 

Prayers for you and all your family. 

Loretta

https://csn.cancer.org/node/310120

Mayflower18
Posts: 8
Joined: Jun 2017

Loretta there are no abnormal/enlarged lymph nodes in the CT scan. The 10 mm I said was the esophageal wall thickening that is absorved in the CT scan. According to CT scan this is the only abnormality noticed. All else regarding other organs and lymph nodes say normal. Also says the fat planes in surrounding structures are preserved which I got to know from Dr.Google usually rules out Stage IV. But we have not done a PET scan or endoscopic ultra sound to exactly stage the cancer. But the first dr we initially saw also thinks surgery followed by chemo/radio if necessary would be the best option.The surgeon who is going to do this is one of the doctors who introduced MIE in India. They are going to do the da Vinci method which uless robotic fingers. The hospital specializes in digestive cancers. I will keep this post updated. As of now surgery is still fixed at June 19th. we will get a clear picture once they start  doing all the test by end of next week.

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Hello again Mayflower ~

All that you say sounds like all the preliminary “checks” will be completed prior to the scheduled surgery date.  What you have written sounds encouraging, and perhaps it really is in the “earliest” of stages.  If all continues to show no abnormalities elsewhere, it certainly isn’t a Stage IV diagnosis.  I, too, consult with “Dr. Google”, and have received a self-conferred “Internet degree in Peritoneal Carcinomatosis, Ovarian Cancer Stage IV as well as my entry level studies in Esophageal Cancer that dates back to 2002!  Laughing I’ve graduated from “Egads and Yipes to “How utterly interesting” while viewing different kinds of surgeries relative to the female anatomy as well as, in particular, Esophagectomies.  So when viewing the surgery from Dr. Ninh Nguyen at UCIrvine, I look at it from the standpoint of—thank God Innocent that He gave some surgeons the ability to know how to “fix” things that break our earthly bodies down.

I hear some doctors tell their patients, by all means “stay away from the Internet”.  Surprised I both agree and disagree.  We can learn all we need to know from consulting with major medical hospitals once we know what to look for.  When I began my searches way back then, I would always put “UPMC” as the last part of my search subject.  That way I could verify what was “floating around on the web” by what UPMC had to say about it.  Now I know what to believe and what not to believe.  Often when I’m reading, and I’m sure it is the same for you, there will be sidebars that say, “You can be cured if you eat this, or you don’t eat that!”  We’ve had several write here over the years asking about a “Blue Scorpion venom that is said to cure cancer.”  If that were really true, someone could make a billion bucks by hiring workers to go catch those critters, and drain every last drop of venom from their little bellies.  So I’m glad you’re not going down that road.

I’m happy to know that this surgeon has been trained to perform the Ivor Lewis Minimally Invasive Esophagectomy that my wonderful thoracic surgeon, Dr. James D. Luketich @ UPMC pioneered.  "It's the best thing since sliced bread" as the old saying goes.  (Some younger folks may not know that bread hasn't always come sliced in a loaf!)  Smile 

I believe I’ve only corresponded with two people in my years here who were being treated in India.  So you can fill us in on the name of the surgeon, and the medical hospital that he works with.  We’ll keep it for future referrals.  You will certainly know all you need to know when you use my long letter as a “guideline” as to what questions to ask, and be able to understand some of the “big” words the surgeons throw around when speaking to you.  They use those words every day, but we the patients—we have to consult the dictionary.  I especially like the links that has a medical dictionary with an audible pronunciation of the word.  So here are a few more links that will be useful as you continue your education into Esophageal Cancer, both “Adenocarcinoma and Squamous Cell Carcinoma.”

I’ve put June 20th on my calendar as a day to remember your family and the surgical team on that special day. 

Hoping & praying for all of you,

Loretta

P.S.  Here in the states we have to fill out a form stating who may converse with the doctor about our condition.  I don't know the rules in India, but make sure you inquire and if there is such a list, that your name is on that list. 

Incidentally, I'm always amused by the way our "privacy act" actually works out when I go to the doctor.  First I put my name on a check-in sheet--then the receptionist covers it up with a piece of semi-transparent tape so other patients will not know who I am--then when it's my turn to see the doc, the nurse comes the door with a piece of paper in her hand and loudly calls out......"Loretta Marshall."  How private is that?  Smile

___________________________________________________________   

Here’s a link for learning “medical speak”.  I’ve keyed in EC words as an example. 

1.  https://www.merriam-webster.com/medical

1a. https://www.merriam-webster.com/medical/esophageal

1.b https://www.merriam-webster.com/dictionary/squamous#medicalDictionary

And here are a couple of references that I did not put on your other letter that sound an alarm about patients who FAIL to get a second opinion.  This one is published by the MAYO clinic in Rochester, MN, which by the way is rated #1 for Gastroenterology and GI surgeries.  Even all MAYO clinics do not enjoy the same rating, so this one in Rochester rates the highest.  I’m always safe with MAYO clinic references and they are “user friendly” so that the patient can better understand the meaning of certain diagnoses

______________________________________________

2.   https://www.studyfinds.org/second-opinion-doctor-diagnosis-study/

SECOND OPINION FROM DOCTOR NETS DIFFERENT DIAGNOSIS 88% OF TIME, Study Finds

8Apr - by Daniel Steingold -  232 - In Health Studies

ROCHESTER, Minn. — When it comes to treating a serious illness, two brains are better than one. A new study finds that nearly 9 in 10 people who go for a second opinion after seeing a doctor are likely to leave with a refined or new diagnosis from what they were first told. 

Researchers at the Mayo Clinic examined 286 patient records of individuals who had decided to consult a second opinion, hoping to determine whether being referred to a second specialist impacted one’s likelihood of receiving an accurate diagnosis.

The study, conducted using records of patients referred to the Mayo Clinic’s General Internal Medicine Division over a two-year period, ultimately found that when consulting a second opinion, the physician only confirmed the original diagnosis 12 percent of the time.

A new study finds that 88% of people who go for a second opinion after seeing a doctor wind up receiving a refined or new diagnosis.

Among those with updated diagnoses, 66% received a refined or redefined diagnosis, while 21% were diagnosed with something completely different than what their first physician concluded.

“Effective and efficient treatment depends on the right diagnosis,” says lead researcher Dr. James Naessens in a Mayo news release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling ─ not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we a_s_s_ume are not being referred at all…”

 _______________________________________________________

3.  https://qz.com/949860/get-a-second-opinion-doctors-usually-arent-right-the-first-time/

“…Misdiagnosing a patient can sometimes be fatal, but how often is unclear. Last year, a controversial study from Johns Hopkins University said that medical error—which includes mistakes in diagnosis—are the third-leading cause of death in hospitals behind cancer and cardiovascular diseases in the US. As ProPublica notes, doctors don’t list medical errors on death certificates, so counting the actual number of deaths presents its own set of challenges. That said, the National Academies of Medicine estimates (pdf) that diagnostic errors lead to up to 10% of all patient deaths, and up to 17% of all hospital complications…”

____________End of references___________

Mayflower18
Posts: 8
Joined: Jun 2017

i have provided a link to his wiki page. So people can use it for future reference. 

https://en.m.wikipedia.org/wiki/Dr._C_Palanivelu

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 Thanks so much. 

I've copied some links into my file.  Dad’s surgeon obviously has a passion to help his people, and certainly is well respected in both civilian and medical circles.   I'm impressed and relieved! 

That reminded me that among my husband's doctors back in 2003, there were two doctors who were in charge of his 25 radiation treatments.  They were both young.  One was from India—one was from Russia.  We asked the doctors what motivated them to come to America.  The Indian doctor said it was for the opportunities that were available here.  He had some small children.  He added that there were advantages and disadvantages though.  He liked all our freedoms but he thought we had a very permissive society here, more so than in India.  In other words he meant very loose morals here.  Those weren't his exact words, but that was what he meant.  He wanted his children to enjoy all the freedoms to excel academically and financially, but he thought we were a bit undisciplined as a society.  I agreed with him.  There are a lot of tears in our "moral fiber!"  

I grew up in a time when we were much more respectful of each other.  Love of God and country were in vogue.    We were proud to pledge allegiance to the flag of the United States of America, and proud to say “ONE NATION UNDER GOD! I’m still proud to say that, but I believe like the Indian doctor, that we are too permissive in many things we tolerate these days.  Surprised However, I'm really appreciative of the advances we have made in the medical and technological fields.  Even Dr. Ivor Lewis would be amazed at how far we’ve come in the way Esophagectomies are performed today.  And I'm so grateful for our Thoracic Surgeon, Dr. James D. Luketich, the pioneer of the MIE, and I'm glad to know that the Ivor Lewis Minimally Invasive Esophagectomy is also being performed in India by Dr. Palanivelu.

Now if we could only find a cure for cancer and the common cold, wouldn’t that be fantastic? Smile

So here's hoping for all the best in every way on June 20th

Loretta

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 Okay - This is the day that will determine how the rest of your Dad's days will go.  Just know that we are praying that the surgeons will have gotten a good night's sleep, because Dad probably might not have rested so well.  We know how the anxiety builds as the day of the surgery approaches.  Just be thankful that your Dad has been able to have surgery, and especially that there are good surgeons in India experienced in performing the Ivor Lewis Minimally Invasive Esophagectomy like Dr. Palanivelu. 

We pray that there will be no difficulties--and that there will be no residual cancer in the lymph nodes that will be removed and biopsied for malignancy during the surgery.  We hope that the stage is as "early" as the doctors think it is. 

We'll be praying for the family who is "sitting on pins and needles" in the family "WAITING" room.  What a suspenseful time that is!  And don't be surprised when you get to go in and see your dad for the first time after he "comes to!"  He will be in immense pain, and will have "zillions" off tubes and machines all "doing their thing."  When my husband had his MIE, when I first went into the room, I was amazed at how many pieces of equipment were there to monitor him.  If he is like my husband, he will have a "naso gastric tube", and hopefully a "morphine drip" that he can activate when his pain becomes intolerable.  My husband is capable of tolerating a lot of pain, but he said that he felt like he had been run over by a "MACK TRUCK".  But by the end of the first day, he was out of ICU, and into a step down unit.  By the end of the SECOND day he was transferred out on the regular ward.  He was discharged on Day 5 and downtown shopping with me on Day 8.  How does a wife celebrate such a victory--first by giving God the praise--and then going shopping!  Kiss

Oh, and of course, the nurses will have him up and walking within the first 18 hours, even if he doesn't want to!  Surprised You don't want to have pneumonia.  Dad should get stronger with each day.  And no doubt, Dad will have a Jejunostomy (J-tube)  tube implanted in the second section of his small intestine in order to supplement his intake of food.  And of course, we pray that there will be no leaks--the "ANASTOMOSIS"- is the place where the organs are rejoined when it's all over. We can't have any leaks!

And, so as I think of you and your dad, in my mind, I'm right back in the waiting room at the University of Pittsburgh Medical Center, and oh how I hope that your dad's outcome will be as great as ours has been.  We're celebrating now the 15th year of survival without a recurrence.  I could never have imagined that when we first received the diagnosis of Esophageal Cancer Stage III (T3N1M0) back in November of 2002!

Wishing your dad every SUCCESS!

Loretta (& William) 

 

 

Deathorglory's picture
Deathorglory
Posts: 327
Joined: Jul 2013

Hey Mayflower,

Hoping your father's surgery was a success.  Both technically and also as far as the pathology goes.

Best Wishes,

Ed

Mayflower18
Posts: 8
Joined: Jun 2017

So the group of doctors saw the CT scan before they just saw the written report which said no enlarged lymph nodes. Since the initial diagnosis is done in different city and hospital and he is getting treatment now in another hospital/city. He just emailed them the endoscopy biopsy and CT report. He didn't send the CT scan pictures. Once he went there to get admitted they saw the CT scan pictures and they thought a lymph node looked suspicious even though the report didn't mention it. They advised us to go for 3 cycles of chemo and then do the surgery. We asked them if we need to do a PET . The dr was pretty confident the PET is not going to make a difference this is the treatment plan he would recommend he asked us to go ahead and do it for our sake. We did do a PET scan and like the dr said there are two lymph nodes that has been effected . The dr said according to the research in US they follow the trimodality treatment that is chemoradiation then surgery then chemo again after surgery. This way they will be able to get clean margins when doing the surgery and the reoccurrence would be less. But due to his age (76) they are going to do chemo no radiation. So 3 cycles of chemo then surgery then another 3 cycles of chemo. It's what the treatment plan they have come up with. He has started chemo today. Any idea how chemo worked out for everyone here ? They have given him nausea medicine before starting the chemo. He will get the chemo 3 days in the hospital and then a pill every day. He has to do the chemo every 20 days.

paul61's picture
paul61
Posts: 1367
Joined: Apr 2010

Hi Mayflower,

As I had written in an earlier post, your Dad's situation sounds very similar to my diagnostic situation. It is very good that they found the affected nodes prior to surgery. In my case, they found an affected node in the surgical pathology, so I had all six rounds of chemotherapy after surgery. Chemotherapy is difficult at best, but very difficult when your body is in a weakened state from surgery. If he can get three rounds in prior to surgery, and then have some time to rest and recover prior to surgery that will help.

Having chemotherapy in the hospital is also helpful because they can provide support that is not always available as an outpatient. For example many folks find IV fluid support a few days after chemo helps to deal with dehydration and fatigue.

I know your Dad is probably disappointed that surgery has been delayed but in the long run it will be easier on his overall treatment experience.

 

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
Seven Year Survivor

 

Mayflower18
Posts: 8
Joined: Jun 2017

So my dad has finished 2 cycles chemo and has started 3rd cycle today. Every cycle is 3 weeks. 2 days of chemo through iv in the hospital  followed by 19 days of chemo tablets. My dad side effects are manageable ( knock on wood) so far. Weakness & tiredness especially for a week after the iv chemo then the tiredness is manageable. Every end of the cycle he needs to get blood work done to check on RBC & WBC . His rbc count has decreased gradually but his WBC is still within normal. But after each cycle he says he feels progressively more tired. No other major side effects as of now. But on the positive side sometime in his first cycle he started eating a normal diet. The pain when swallowing solids was gone after first cycle. And he even put on 4 pounds weight after first cycle of chemo. Now my question can chemo work this fast? And my other question is regarding next step. So initially they recommended 3 cycles of chemo pre surgery. So after this 3rd cycle is over they are going to take CT scan immediately . I thought usually doctors here wait for one or two weeks after chemo is finished to take the scan? But they want to take the test immediately and everything looks good for surgery go ahead with MIE surgery within a week. Can someone please who have been through share their surgery and CT scan timeline after chemo ? That would give me some idea. Thanks in advance.

Deathorglory's picture
Deathorglory
Posts: 327
Joined: Jul 2013

Hello Mayflower,

Glad to hear that your father is dealing well with the chemo.  It can be a beast and make you wonder if you're strong enough for the surgery (at least it did for me).  I think the scan/chemo timeline is dependent on the doctors, although I'd rather wait a couple of weeks to let the chemo do its stuff before checking.  I finished my pre-surgery chemo/radiation in July and had surgery in September.  

Best wishes,

Ed

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Well Hello Again “Mayflower”

Thanks for the update.  So many write here and we try to be a help, but often we never hear from them again.  I will say that this report is good in that your dad seems to be “no worse for wear”.  That’s a positive and we’re pleased to hear from you. 

As for tiredness, all we chemo patients can identify with that.  Personally as for me with my own cancer, I’ve been in 3 different treatments since 2013 and “tiredness” during the first treatments were especially debilitating.  I couldn’t walk up and down the driveway twice without having to sit down, and my husband had to push me in a wheelchair when I went to the doctors for treatments.  I had to use a shower seat to shower.  And I’m left with residual neuropathy from that very first series of treatments.  On the second series, I broke out in a terrible rash that covered my torso and legs.  So that introduced me to another set of physicians—dermatologists.  Prednisone was prescribed and that came along with its own side effects.  Hopefully, I never have to take that again.  Not to mention that all my hair came out with each series.  By the second week of my first set of (6) treatments, my hair was coming out in “clumps.”  So the next series I just had it shaved to begin with.  The 3rd time around, I didn’t bother to go to the beauty shop, I shaved it myself, with some help from my husband.  With each series I always had to use a cane.  I now use one because of the neuropathy.  During the last treatment regimen which ended in January of this year, 2017, my fingers were numb and tingly.  That went away, but the neuropathy from the first treatment of Carboplatin and Paclitaxel (Taxol) still remains.  I totally understand Dad’s weakness, believe me. 

But I will say that as for my husband, he fared much better than I during his neoadjuvant treatments.  Within 6 months he totally regained his ability to do everything he had done before his MIE. He was 65 when diagnosed and 66 at the time of surgery.  Now of course strength increases with time but he had minimum decrease in energy soon after surgery.  Now I must say William was an exceptional case.  He was only in the hospital 5 days and we were downtown shopping on Day 8.  We rode the bus to town, but during the first 3 months, we “had a SECOND HONEYMOON” so to speak.  We toured several adjoining states and William (Billy) did ALL the driving.

  • I will tell you that it’s nothing short of a feeling of totally not knowing what is going to happen when you see your loved one wheeled down the hall and out of sight, and you sit in the “family waiting room for 7 hours.”  Family members were with me.  Our relationship hung in the balance and only God knew what was happening in that operating room.  In that moment, I think the possibility of not ever seeing my husband alive again was real.  As one wife of a Stage IV EC 48 yr.-old patient said, 6 weeks into their diagnosis, Having the future tense stripped out of your language when you’re talking to the person you wanted to spend the rest of your life with, and now probably can’t, makes talking sometimes really awkward.”  Well, perhaps “numb” or “limbo” fits, but certainly a totally helpless feeling and a total dependence on the Lord for strength brought me through.  And now, it’s my husband’s turn to “wait”.  So we thank God that the “wait” has lasted 4 and 1//2 years longer than we expected, and I’ve had the joy of having my husband by my side for now going into the 15th year of survival.  So miracles do happen.  Pardon me, but a Stage IV diagnosis is “emotional experience” in the strongest sense of the word, and those who are there, either as the patient or as the caregiver, will certainly attest to that. 

And so I never fail to give God the credit for giving the doctors the expertise to know what to do.  What a relief to see my husband again.  I know that everyone doesn’t have this kind of a “Cinderella” story.  Esophageal Cancer is the 6th largest killer of male men in the US today.  It’s a stealth killer and many present with Stage IV from the very beginning.  For them there will be no opportunity for an Esophagectomy—only palliative measures.  It grieves us deeply every time we read of another patient that has EC at any stage.  So we’re really pleased that your Dad has fared well all things considered, and that he has a good thoracic surgeon that will perform the Ivor Lewis Minimally Invasive Esophagectomy. 

(Now we’ve got to take into consideration the time it takes to readjust to a “new normal” way of eating and sleeping.  Initially problems with “eating, digestion and dumping” will be the biggest adjustment.  But we’ll cover that subject when Dad gets there!  Everyone goes through that cycle no matter the type of surgery, but for minimally invasive esophagectomy patients, return to normal activity is quicker than for those who experienced an open (Transthoracic) esophagectomy.  (This is barring unforeseen circumstances of course.)

Exactly what is the name of the chemo combo they’re giving Dad, just curious?  Since 5-FU comes in a tablet form called Xeloda (pronounced zuh loda), is that the pill form he takes daily when he comes home?  My husband was given 5-FU and Carboplatin via infusion.  Now he didn’t lose his hair.  Of course, hair is incidental, and having much or little “does not a man or woman make!”

In any case, as for the ability to swallow after the first treatment—most often people are able to swallow better after they’ve begun radiation because radiation is designed to “shrink the tumor” itself, while chemo circulates throughout the whole body.  So I usually associate the ability to swallow better with a treatment regimen that includes radiation.  So it’s great that he was able to swallow better even without the benefit of radiation, and to gain some weight.  Now after surgery, if he is like most, a weight reduction is normal, because of the limited intake of food possible.  That new “gastric tube” will not hold much.  The one “tube” serves as both the stomach and the Esophagus.  But those are instructions for a later time.  We’re just elated that according to your update, “so far I would say the news is all good!”  Neoadjuvant chemo and/or radiation isn’t for sissies!

Now about the treatment schedule and CT afterwards. 

In all the cases that I’ve been familiar with, the normal practice here in the states to wait approximately 3 weeks after the last treatment to access the total effectiveness of the treatment sessions.  Chemo has a residual effect of up to 3 weeks after completion of the regimen.  I know that in my own case, my tumor markers continued to decrease even after my last treatment.  And on a side note, I noticed that my “eyebrows” continued to decrease in “number” even after I finished my last treatment.  And I said to myself, “Hhmmm I guess this is proof that the chemo still is working even after I’ve stopped treatment.”  So in my case the chemo continued to do its work even after my last treatment.  Now, 6 months later, I awoke this morning with a full set of eyebrows and at least 2 inches of hair—enough white hair on my head to brush.  (After all, I’m 78 and there aren’t too many natural brunettes, blondes and redheads at my age!)  Now that’s a double blessing—first that I woke up—and secondly that I had some hair to brush

I am a bit surprised that doctors did not decide to use radiation in addition to chemotherapy since radiation is given to “specifically target and shrink” the tumor.  Incidentally, people older than 76 have had an MIE.  From your previous correspondence a PET scan was given that indicated 2 lymph nodes were affected.  I don’t think the doctors thought this to begin with.  And so, I’m not sure why a repeat PET/CT scan will not be given, but only a CT scan. 

A PET (Positron Emission Tomography) scan shows “metabolic activity” while a CT (Computerized Tomography) only shows shapes and sizes and measurements.  In reading about the advantages of a combined PET/CT, it seems that the CT scan will show the shape and size (measurements) of a suspected tumor in millimeters or centimeters, but the PET will indicate if there is “live” activity there.  Sometimes cell activity is so small that it doesn’t show up on a scan PERIOD.  However, during surgery it’s not unusual to find more cancer present than was first detected on the scan. As for me, I would certainly want a combination PET/CT scan as opposed to just a CT scan, knowing what I know NOW!  But I know you’re not the doctor.  That is why it is usually at least 3 weeks after the neoadjuvant chemoradiation before surgery is performed.  Here in the states, it is customary to not break up the chemo cycle into 3 weeks before surgery and 3 weeks after the surgery.  Some doctors may order additional chemo after surgery just to be sure of a “clean sweep.”  But most often, if NO tumors are found in any of the lymph nodes removed during surgery, no post-op chemo is recommended.  Just recovering from the surgery is a big enough job to tackle in itself.  And those who have to undergo adjuvant chemo because of residual cancer discovered in lymph nodes that were removed for biopsy during surgery are really in for a tough time!  Paul can attest to that.  No additional chemo was recommended for my husband because no residual cancer was found in the 22 lymph nodes removed during surgery.

On that note, when I was first diagnosed with Peritoneal Carcinomatosis via CT scan, nothing showed up in my ovaries.  When I went to the University of Pittsburgh Medical Center for a SECOND opinion, exploratory surgery and a PET scan revealed cancer in both ovaries as well!  But remember, I’m speaking as a cancer patient myself, and also in the case of my husband, William, who was diagnosed with Adenocarcinoma @ the Gastroesophageal junction, Stage III, (T3N1M0) in 2002.  We are “elated” to still have him in remission still in 2017!  And one more advantage to having a few weeks in between the last chemo and the surgery would be that your dad would have a little bit more time to recuperate and be stronger to undergo the surgery.  But then again, I’m not the doctor.  My husband was in great shape when the time for surgery came.

Now, of course, pathological examination will be made of the lymph nodes that are removed during surgery.  Should there be any residual cancer detected during the surgery, adjuvant (post-op) chemo should be recommended.  And we sure hope that this will not be the case.  But it happens, so just so you know, that this is the usual protocol post-surgery.  Usually a minimum of 22 lymph nodes are removed for examination.  

So on that note, I will give you my husband’s treatment schedule together with other links that usually put a 3-to-8 week time interval after neoadjuvant chemoradiation treatments prior to the actual Esophagectomy.

William’s last treatment was on March 17, 2003.  The follow-up PET scan was conducted 6 weeks later.  This allowed for optimum time for chemo to have maximum effect.  Then his Minimally Invasive Esophagectomy (MIE) was performed 19 days later on a Saturday, May 17, 2003, by our beloved thoracic surgeon, Dr. James D. Luketich at UPMC.  We thank God for giving us talented physicians who actually can understand the human anatomy!  My husband’s surgery took place in the 9-week time frame.  He underwent neoadjuvant chemo/radiation treatment here.  He was due to have the OPEN Ivor Lewis surgery (Transthoracic) here in Norfolk, but while awaiting the actual surgery, we learned about the MIE.  We immediately called UPMC.  They worked us in because my husband already had a surgical date set.  We didn’t need a referral.  UPMC said, “Bring all your records and if you’re a good candidate for our type of surgery, then we will perform it.”   So that caused a short delay of the surgical date.  Otherwise, my husband would have been operated on during the 3-to-8 week interval after the last neoadjuvant treatment regimen. 

Most all the abstracts that I’ve scanned show a surgical starting time frame of 3 weeks to 8 weeks after completion of neoadjuvant chemo treatment.  Of course, there are always exceptions to the rule, but this is the general time frame most often quoted.  That makes sense to me, since chemo does have a residual effect after the last treatment.  I am in total agreement with Ed.  I think waiting at least a few weeks for chemo to accomplish its maximum effect is preferable.  Both my surgeon and my husband’s surgeon waited for chemo to have its fullest effect prior to our surgeries.

As usual, I’ve included more than you asked for but I thought some insight into how chemotherapy works is inciteful along with the articles that gives a “best time” frame in which to undergo an Esophagectomy after neo-adjuvant chemoradiation treatment.  You also mentioned your dad’s blood counts so I put in a link relative to understanding blood counts.

Continuing to keep you and Dad in our prayers,

Loretta (& William)

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1.       William’s treatment schedule was as follows:  Diagnosed in late November 2002.  After a barrage of tests, chemo/radiation regimen began on(Feb. 10 & completed March 17, 2003.)

  ·       Week 1 ~ (02-10-03) Chemo 96-hr. continual infusion of Carboplatin/5-FU (via Fanny pack)

  ·       Weeks 2, 3, and 4 ~ (02-17-03) Five days-a-week radiation treatment.  (No CyberKnife equipment (targeted radiation) in this area in 2003, but now we do have one in our Tidewater area.)

  ·       Week 5  ~ Combination radiation plus SECOND chemo continuous 96-hr. infusion (via Fanny pack)

  ·       Week 6 ~ (03-17-03) Final week of radiation.

   ·       Repeat PET Scan on 04-28-03 ~ results - COMPLETE ERADICATION OF TUMOR in Esophagus and the 2 affected lymph nodes.

           Laparoscopic surgery was scheduled for May 17, 2003 at the University of Pittsburgh Medical Center (UPMC) by the pioneer of the Ivor Lewis Minimally Invasive Esophagectomy (MIE) Dr. James D. Luketich, approximately 3 weeks later after successful pre-op treatment.  Radiation does cause scar tissue, so the sooner the surgery after the pre-op treatments—the better.

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2.       http://news.cancerconnect.com/cancer-treatment/chemotherapy/understanding-and-monitoring-your-blood-counts/

Understanding and Monitoring Your Blood Counts - Overview

A reduced number of blood cells in circulation is a common side effect of chemotherapy. Blood is composed of three basic blood cell types: red blood cells, white blood cells, and platelets. Blood cells are produced in the bone marrow and regularly released into circulation. Chemotherapy destroys rapidly dividing cells, a characteristic of cancer cells. However, bone marrow cells also divide rapidly and are frequently damaged by chemotherapy. Blood counts are monitored with a laboratory test called a Complete Blood Count (CBC). The best way to treat low blood counts is to prevent them before they occur. This can be accomplished with the administration of blood cell growth factors. In some circumstances, blood transfusions may also be necessary.

3.         https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4041623/

DOES THE TIMING OF ESOPHAGECTOMY AFTER NEOADJUVANT CHEMORADIATION AFFECT OUTCOME?

[My note here:  When reading these articles most often certain procedural words are spelled out completely in the beginning and from then on abbreviations are used.  And in this report, I understand that the “C” stands for Chemo, and the “XRT” stands for radiation therapy only.  So in this article, when “CXRT” is used, it is speaking of a combination of chemotherapy and radiation.  As usual, one has to read this entire article to understand the full meaning, but I always give enough of an excerpt so that one knows it is applicable to their inquiry.] 

Abstract - Purpose

After neoadjuvant chemoradiation (CXRT) for esophageal cancer, surgery has traditionally been recommended to be performed within 8 weeks.  However, surgery is often delayed for various reasons. Data from other cancers suggests that delaying surgery may increase the pathologic complete response rate. However, there are theoretical concerns that waiting longer after radiation may lead to a more difficult operation and more complications. The optimal timing of esophagectomy after CXRT is unknown…

INTRODUCTION

Successful treatment of locally advanced esophageal cancer remains challenging. Randomized trials have shown that the addition of neoadjuvant chemoradiation (CXRT) leads to a survival benefit compared to surgery alone for the treatment of locally advanced esophageal cancer.[13]

Most of the clinical trials evaluating neoadjuvant therapy have stipulated that surgery be performed within a defined time-frame after completion of therapy.

Traditionally, this has been within 3–8 weeks after completing radiation therapy.[27] An extrapolation from this tradition is that surgery is recommended within a pre-defined duration whether patients are on or off clinical protocol. However, for a variety of reasons, many patients do not undergo surgery within that time frame.

Some patients have suffered adverse events from medical therapy or simply have not adequately recovered from their neoadjuvant therapy. Other patients have their surgery delayed for personal or logistic reasons.

Radiation-induced tumor necrosis may increase over time and studies of neoadjuvant radiotherapy for rectal cancer suggest that a longer interval between radiation and surgery may actually result in improved pathologic complete response and decreased postoperative morbidity.[8,9]

On the other hand, there are theoretical concerns that waiting longer could make the dissection more difficult due to increased radiation fibrosis.[10]

There is also a possibility that delaying surgery could allow for tumor regrowth, increasing the risk of recurrence. The optimal timing of surgery after CXRT for esophageal cancer is unknown. We thus decided to analyze patients who underwent esophagectomy after neoadjuvant CXRT at our institution to explore what effect the timing of surgery had on perioperative complications, pathologic response, and long term outcomes…”

[My note:  This is a similar article noting the fact that waiting longer than 9 weeks post surgery was associated with increased mortality rates.  Likewise, remember that chemo does have a residual effect of approximately 3 weeks post last treatment regimen.]

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4.       https://www.ncbi.nlm.nih.gov/pubmed/26652139

 “Esophagectomy Timing After Neoadjuvant Therapy for Distal Esophageal Adenocarcinoma.

Franko J1, Voynov G2, Goldman CD3. - Author information - 1Department of Surgery, Mercy Medical Center, Des Moines, Iowa. Electronic address: jan.franko@gmail.com. – 2 Department of Radiation Oncology, Mercy Medical Center, Des Moines, Iowa. – 3 Department of Surgery, Mercy Medical Center, Des Moines, Iowa…

Abstract - BACKGROUND:

The time elapsed between completion of neoadjuvant therapy and esophagectomy may influence response rate and possibly allow for avoidance of surgical intervention in selected cases ("wait and see" approach). However, a very long postradiation interval has been associated with worsened surgical outcomes in esophageal carcinoma. Therefore we analyzed outcomes of patients with invasive distal esophageal adenocarcinoma treated with neoadjuvant chemoradiation and esophagectomy based on the time elapsed between completion of neoadjuvant chemoradiation and resection…

A postradiation interval of 9 weeks or more was associated with increased perioperative mortality odds both at the 30-day (adjusted odds ratio [OR], 2.160; 95% confidence interval, 1.099-4.242; p = 0.025) and 90-day follow-up (adjusted OR, 1.912; 95% confidence interval, 1.290-2.835; p < 0.001). Similarly, a postradiation interval of 9 weeks or more was associated with an increased mortality risk (adjusted hazard ratio [HR], 1.194; 95% confidence interval, 1.032-1.380; p = 0.017).

CONCLUSIONS:- Perioperative mortality and overall survival are significantly associated with the time interval between neoadjuvant chemoradiation and esophagectomy. A "wait and see" approach after neoadjuvant therapy for esophageal adenocarcinoma may not be safe. Further studies based on more detailed data are needed…”

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[My note:  Just for your satisfaction – This 2016 article PROVES the benefit of an MIE over OPEN surgery.  Five year survival rates are similar though the “OPEN” recipients will have a longer period of recovery during the initial period following surgery due to the large incisions and possibility of post-op complications.  So your dad will benefit from having the MIE.]

5.       https://www.ncbi.nlm.nih.gov/pubmed/26652140

“Outcomes With Open and Minimally Invasive Ivor Lewis Esophagectomy

After Neoadjuvant Therapy.

Abstract- BACKGROUND:

Neoadjuvant therapy is integral in the treatment of locally advanced esophageal cancer. Despite increasing acceptance of minimally invasive approaches to esophagectomy, there remain concerns about the safety and oncologic soundness after neoadjuvant therapy. We examined outcomes in patients undergoing open and minimally invasive (MIE) Ivor Lewis esophagectomy after neoadjuvant therapy.

METHODS:  - This was a retrospective series of 130 consecutive patients with esophageal cancer undergoing Ivor Lewis esophagectomy with curative intention after neoadjuvant therapy at a tertiary academic center (2008 to 2012).

RESULTS:  - An open procedure was performed in 74 patients (56.9%), and 56 (43.1%) underwent MIE after neoadjuvant therapy.

MIE patients had shorter median intensive care unit (p = 0.002) and hospital lengths of stay (p < 0.0001). The incidence of postoperative complications was similar (open: 54.8% vs MIE: 41.1%, p = 0.155).

 However, observed respiratory complications were significantly reduced after MIE (8.9%) compared with open (29.7%; p = 0.004).

 Anastomotic leak rates were similar (open: 1.4% vs. MIE: 0%, p = 1.00).   Mortality at 30 and 90 days was comparable (open: 2.7% and 4.1% vs MIE: 0% and 1.8%, p = 0.506 and p = 0.634, respectively).

Complete resection rates and the number of collected lymph nodes was similar. Overall survival rates at 5 years were similar (open: 61% vs MIE: 50%, p = 0.933). MIE was not a significant predictor of overall survival (hazard ratio, 1.07; 95% confidence interval, 0.61 to 1.87; p = 0.810).

CONCLUSIONS:  MIE proves its safety after neoadjuvant therapy because it leads to faster progression during the early postoperative period while reducing pulmonary complications. Open and MIE approaches appear equivalent with regards to perioperative oncologic outcomes after neoadjuvant therapy. Long-term outcomes need further validation…”

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6.       http://blog.dana-farber.org/insight/2015/12/how-long-does-chemotherapy-stay-in-your-body/

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7.       http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/chemotherapy/side-effects/late-effects

“Late side effects of chemotherapy

Most chemotherapy side effects are temporary and disappear once your treatment is over. For some people chemotherapy can cause long term changes in the body months or years after treatment.

Many people feel more tired than usual for a long time after chemotherapy treatment. This is most likely to happen after a lot of treatment, or very intensive treatment. For example, after high dose chemotherapy or if you are having a bone marrow or stem cell transplant. 

After intensive treatment, you are likely to have a lower resistance to infection for quite a long time. This will gradually get back to normal, but can take some months…”

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8.       http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/chemotherapy/how-chemotherapy-works

How chemotherapy works

Chemotherapy works by killing cancer cells and has different effects on different types of cancer. Find out how it works and the different ways you might have chemotherapy…”

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9.      http://news.cancerconnect.com/cancer-treatment/chemotherapy/most-frequently-asked-questions-about-chemotherapy/

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10.  http://www.mayoclinic.org/tests-procedures/ct-scan/basics/definition/prc-20014610

______________________End of references________________

Mayflower18
Posts: 8
Joined: Jun 2017

Update on dad. Please bear with me as this is a long post. So we completed 3 cycles of chemo. Dad was doing ok eating almost normal diet but just weak from chemo esp after the 3 red cycle. After almost 3 cycles we did the CT scan. CT scan showed lessening in thickness compared to pre chemo but few nodes were still showing. So the dr saw the CT scan and according to him the tumor was now starting from upper eso originally it was at mid eso. To confirm they did an EUS and confirmed tumor starting at 20 cm instead of 24 cm pre chemo. So their opinion was chemo didn't work also tumor location is now upper esophagus so they won't get clearance for surgery as the upper eso area was a complex one and they cant do laparoscopic and they refused to do the surgery and asked us to go for chemo/radiation instead. We were not convinced as dad was lot better after chemo he didn't have any symptoms of cancer post chemo.We went for second opinion in one of the best cancer hospitals in India in another city. The dr here gave a completely contradictory opinion that the CT scan showed lots of regression in tumor and nodes. They said surgery is definitely possible but wanted a PET/CT done. So the PET/CT report showed good regression in tumor size and lymph nodes but no significant change in suvmax value. Pet scan also showed few lymph nodes nearby to the tumor. So again the dr here also said chemo didn't work that well as suvmax has not changed much even though tumor shrunk by 2 cm. He said surgery is now the best option since reports showed cancer has not spread to other organs. We went to another famous thoracic oncological surgeon and he gave the same opinion . So the esophagectomy was done last Tuesday. He is doing well post surgery no icu stay . He is 6th day post surgery today and has started taking liquids by mouth. Today we got the pathology report and that's where there is confusion. They did 3 field lymphadectomy but all the nodes came back clear even if the PET showed nodes post chemo. And to add to that the tumor has invaded only the 3rd layer of esophagus there was some fibrosis that the pet scan has showed as cancer. These are all positive but the negative news is although the radial margin is clear of cancer the cancer starts at 0.2 cm below the radial margin. Anyone have any idea on what all this means. He was staged as T3N1/N2M0. But now it looks more like T2N0 except for the radial margin being too close. Does this mean his chances of reoccurrence is high?

Deathorglory's picture
Deathorglory
Posts: 327
Joined: Jul 2013

Hello Mayflower,

Sorry, I don't understand all of the technical information you gave, so I don't know about your father's chance for a recurrence.  I'm glad to hear that he seems to be doing well and I am sending positive thoughts his way.

Best Wishes,

Ed

harry458
Posts: 4
Joined: Mar 2020

Hi Mayflower, how is your father doing now.

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