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Surgery First?

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Good afternoon everyone.

The medical oncologist from UofM looked at Don's information today and called to say that Don could go right to the thoracic surgeon. We are thinking this is good news - that perhaps he won't need radiation or chemo prior to surgery. Is this possible?

Bracing for our first big snow here in Michigan,

Judy & Don

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

Hello Judy & Don :)

I believe even Stage I's get radiation or chemo or both PRIOR TO surgery. I don't believe in my 6 months on the forum that I have ever heard of skipping both or either.

The reason for radiation and chemo is to kill the cancer cells PRIOR to putting a surgeon in the mix stirring things up. You wouldn't want to take a chance that a live cancer cell remains behind when the surgeon is done. The goal is to knock the cancer DEAD then operate.

I'm sure others can put it much more eloquently than I have.

Terry

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Terry:

I was wondering about that, because everything I have read says radiation and/or chemo prior to surgery. Maybe the thoracic surgeon will take care of this? UofM has on the esophageal team: Medical Oncologist - she is the one who said Don needs to go to see the thoracic surgeon. Also onboard at UofM are some radiology oncologists.

Is it typical to see the surgeon first do you think?

Thanks again

Don & Judy

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

Right or wrong....my husband had surgery first. He was stage 1. That has been almost a year now. There are studies indicating advantages and disadvantages for stage 1's to go straight to surgery. So far we have been happy with the decision, but there are others on this site that have gone straight to surgery and had reoccurrence.

I think you have to decide, if in the future there is a reoccurrence will the decision be unbearable regret or will you be able to accept the chance of reoccurrence is the same (for stage 1 )even if he did go through chemo and radiation?

Admittedly I have had times when I questioned whether we made the right decision. Since the surgery was done before I really researched the advantages and disadvantages. But hind sight I think we would have made the same decision. In the end it is an individual decision with many factors to be weighed. Not the least of which is the health of the patient going into surgery.

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

My tumor was very early Stage 1, and no chemo or radiation were prescribed pre or post surgery. Both the Gastroenterologist who did my EUS and the Thoracic Surgeon (at Mass General) said the lesion was so early Stage that pre-op treatment was not indicated. I think like so much else, it's case dependent.

Bob
dx 8/3/11
MIE 9/23/11

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Thank you Bob! Between you and birdiequeen - that answered our question as to 'yes' it can be done. How are you doing? I see that your MIE was Sept 23. Also, I asked birdiequeen where is Mass General and that question should have been asked of you. The gastroentrologist who did the endoscopy and biopsy on Don could not get the scope past the tumor - would you think that maybe this indicates the tumor is only on the inside wall of the esophagus? Where was yours located? (same question to you birdiequeen if you read this).

Thank you Jesus for letting us find each of you - we so appreciate your experiences and comments - you all are so helpful and that means so much to us.

Thank you again!

Don & Judy

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Massachusetts General Hospital is a major medical center in Boston, and I live 60 miles south of town. My journey was that I had no symptoms and was diagnosed during "routine surveillance" endoscopy due to Barrets Esophagus that was diagnosed 6 years ago. My local GI biopsied a suspicious spot at the bottom of my esophagus that he said looked "ulcerated," and the path report came back as distal esophageal adenocarcinoma. He said the next step should be an Endoscopic Ultrasound (EUS). I was fortunate to have an "in" with the head of Mass General's Endoscopy clinic and I had an EUS and a Confocal Endomicroscopy the following Tuesday. A week later the doctor called and said his procedures and the path report had confirmed EC, that the lesion was very small ("barely more than microscopic") and had grown only into the 1st layer of my esophagus. He recommended an MIE, explained what it is, and referred me upstairs to a thoracic surgeon (Dr. Christopher Morse) who did a fellowship with Dr. Luketich at UPMC, and who has done hundreds of MIE's.

I had a CT scan later that week and an appointment with Dr. Morse the following week, where he expressed surprise that my local GI had even seen my "very early Stage 1" lesion, and said that the results of the EUS, Confocal Endomicroscopy and CT scan all indicated this was such early stage that there was no reason to suspect any nodal involvement and he recommended we go directly to surgery. My MIE was a couple of weeks later, and the path reports indicated the surgical margins and all 28 nodes he took during the surgery were clean, so he recommended no follow-up chemo.

I completely agree with everyone who recommends writing down every question that comes to mind BEFORE you meet with the oncologist and/or the surgeon. We did, and still there were so many things running around my and my wife's minds during our first meeting that we almost forgot some of our questions! There is so much information being passed around, and there will be so many thoughts and questions running around your head that you can't possibly keep it all straight. And, of course TAKE LOTS OF NOTES. The doctors will be using terms you've likely never heard before, they'll be describing processes you've likely never heard of before, and they may be presenting you with options including the pros and cons of each, and if you don't write them down you won't be able to accurately remember it all. I know that for me, the whole time the surgeon was talking I was trying to pay attention, but in the front of my mind was the constant thought that I can't believe I have cancer and am here talking about having parts of my guts taken out. Thank God my very level-headed wife was with me! It's scary and confusing, but if you have an experienced medical team they will put your mind(s) at ease and take good care of you.

Enough rambling for one night. Best of luck to you.

Bob
T1N0M0
dx 8/3/11
MIE 9/23/11

Freida
Posts: 191
Joined: Nov 2011

Bob,
that is almost exactly my husbands story. Diagnosed with Barrets in 2006. Took nexium. Cancer found on a check up for the Barret's. Unfortunately he had been putting off going back for the check up so his is larger. We still have no idea the size. All we keep being told is that the scans show a "thickening of the esophagus". I am not sure what that means as far as staging. Unfortunately the PET showed a hot lymph node (though no other spread), so I am thinking it is a 11 or 111 (hoping 2).

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

I'm no doctor, but we all learn more than we'd ever dreamed we would, once we becomd involved with this beast, and it's my understanding from my own case and many others I've read on this wonderful board, that the next step after "finding" the cancer is an EUS for staging. Between the EUS and, at least in my case, the Confocal Endomicrosopy, they can both measure the dimensions of the tumor and see into the tissue to measure how deep, if at all, it has grown. If they haven't mentioned it yet I'd certainly be asking my doctor if an EUS is indicated and, if not, specificially what's next and when. And if you don't like the answer, GET A SECOND OPINION!

BTW, recovery from the MIE isn't a walk in the park, but I'm almost 10 weeks post-op and I'm feeling physically really good. I still have some nerve issues in my rib cage that get better every week, I have some emotional issues related to this whole mess that I'm working on, and of course I'm still getting to know my new digestive system. But if you were to ask me if the MIE was worth it I'd say, "You bet your bippy!!!"

Bob
T1N0M0
dx 8/3/11
MIE 9/23/11

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Thank you so much for your reply. Just read it to my husband and this was very positive. Wouldn't it be wonderful if he is only Stage 1 and they could do this! How long did it take from diagnosis to surgery? Aslo, where is Mass General? Right at this minute, I don't ever want to chance a recurrence of this s.o.b.

Any advice on a second opinion anyone? Seems like the EC specialist teams are all booked out for 2-3 or 4 weeks. I think I'll ask our daughter to switch her major from physchology to thoracic surgeon! What the heck is a few more years in school right?

Thank you again birdiequeen!

Don & Judy

Freida
Posts: 191
Joined: Nov 2011

Judy
We are not sure what stage Bill is yet. We were hoping it was stage 1 as he is pretty much symptom free (no problems swallowing or anything). If that had been the case we were hoping he would be eligible for a much less invasive surgery (mucosal resection) where they do not remove the esophagus, just the lining. If there is any chance your Don's stage is very early I would for sure look into this as an option. You would probably need to go to a major cancer center for this. In Bill's case, the PET scan did light up one lymph node near the esophagus, which I think means his is too advanced for this procedure.

There also seem to be different approaches for the regular surgery. One is called Minimally Invasive esophagectomy (MIE). It sounds like the recovery from this is less painful and also quicker than some of the other options. Ask about that and again if the surgeon has done many of them.

As far as the regular surgery. When I asked our family doc what she would do, her response was "well, I wouldn't go here" (locally). Nothing against our local surgeons, but she said that it is a difficult surgery and should be done by someone who has done a lot of them and she knew no one local had (we live in a small town). So I would definitely make sure you re going to a surgeon who does a lot of them. My understanding is the prognosis is much more favorable at a major center with a surgeon experienced in this surgery.

I am not an expert as we are at the beginning of this, like you and Don. But everything I have heard and read indicates that you want a specialist team. We are frustrated by the wait, but I think (hope, pray) going to the specialists is the right choice for us. (May die of old age before we get in anywhere!!). In our case, Bill is not very healthy to start with. But I would like to get a few more years out of him!!

Hugs and good luck with your decision
Freida

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Boy oh boy - our stories are so much alike. We too are quite frustrated - yesterday we were told he would probably see the medical oncologist on Thurs and today she called and said he needs to go to the surgeon. The one on the team that has the first available opening is booked out 2-3 weeks so we still don't have an appt.

I am sure tired of this and I know my hubby is. All things in due course right? You know I think we ought to approve payment of our insurance premiums to our insurers in the same fashion these danged insurance companies give us their approvals on referrals. What a bunch of crap! You would think the medical experts would know (and they do) who you need to go see and when and the insurance companies should be cut out of this part completely. All this does is cause the wait times to be longer due to their red tape - of which I'm sure they know how to wrangle through quickly for their loved ones.

We just want this tumor staged - tell us what we need to do to get it out there and let's go! That's not too much to ask is it?

One step forward and two steps back - whoever said that really had no idea did they?

Anyway, enough of that tantrum - I am keeping a notepad for all of these comments, suggestions and questions from all of these ACTUAL EC patients and caregivers so when we do finally get to see someone - we will know exactly what to ask and expect to hear. And you can be darned sure, I'm going to check with the people on this site to be sure whatever they tell us sounds right.

Love & hugs,
Don & Judy

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

Don and Judy,
My husband’s Doc worked fast. He was less than one month from dx to surgery. I have never seen the medical industry work so fast in my life, which includes our insurance company. We saw so many doctors and had so many procedures in two weeks my head was spinning. But, to their credit many of them were meeting with us on their lunch hour or when their office was closed. It was quite obvious that they all knew how serious the situation was and that time was of the essence. He decided to stay locally to have family nearby and because he had a lot of confidence in the surgeon here. Because this is not an “everyday” surgery for our local hospital the nurses and surgeon were very attentive. We got great care the whole 8 days were where there. My husband has the THE surgery so recovery might have been longer than those who have had the MIE surgery.
My husband’s tumor was very flat, which is untypical from what I understand. It was located in the lower section of his Esophagus.
Hope this helps!

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

@BirdieQueen & BobHaze,

I should have remembered about Bob as he started posting after I joined, but truly, BirdieQueen, I did not realize that your husband was so fortunate!

You both are blessed to have caught this beast so early!

@Judy & Don - I hope the same is true for you then. Fortunate are those that are early enough in the catch to avoid the rigors of rads & chemo.

btw, Nick & I had a meeting with his surgeon before we ever saw radiology or oncology.

Terry

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Terry - that's good info and thank you for that. I don't know why my husband got this stupid cancer, but I do know that we are very, very thankful for each of you pioneers.

There is as you know, so much guessing going on when you don't know anything. I do know we are looking at another two to three weeks before the thoracic surgeon can see Don and we found out that in the meantime he needs to get clearance from his cardiologist for any surgery. Don had a heart attack and stent placed in 1996 - there truly was no damage to his heart (which is nearly unheard of, but lucky for Don) so after a few years, they decided that our primary care doc could handle the bp med and cholesterol meds and Don wouldn't need to go back to the cardiologist - who by the way was killed in a car accident in Kalamazoo two years ago on his way to his daughter's graduation. (RIP Dr. Azevedo) So now we'll have to see what our primary care doc is going to do about this - sounds like we got a couple of weeks to figure that out.

Still waiting for someone to do something soon - patience is definately not one of my virtues. I swear if this cancer had struck me instead of Don - it would have left my body just because it couldn't stand me!

Thank you all again,
Don & Judy

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

Judy and Don,

I would have to guess it has to do with how early stage the tumor is...but it's HARD not to agree that free-floating cancer cells let lose during surgery could go to other areas of the body. But since I am not a thoracic surgeon or a doctor I don't know. Maybe clean-up chemo is safe enough, but you didn't specify if they were going to do THAT? I can see having the strength at 100% due to NO chemo or radiation being a benefit as well as your recovery would seem so much more safe and sure. There are so many factors with all the things we learn reading and watching others go through these very issues here that it rises so many options/questions.

I would certainly want to write all of this down and then sit with the thoracic surgeon and radiation oncologist and oncology team and ask what and why and why.

Let us know what YOU decide and what happens and if you get any more information I would love to know what the reasoning is. There are already some great responses here. I will be following this post for sure.

Would like to hear what William has to say on this on with all his years of observation.

God bless and good luck!
Eric

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

OMG! I feel like I am writing to a Rockstar (you got the moves like Jagger? LOL) I have read all of your posts and replies and you are my Hero! You brought up a good point - to write all of this down and ask questions - Paul had suggested that early on and by golly we're going to start this list tonight. And, I'm going to keep adding to it with all of your suggestions and let you know what the replies are.

I hope you and Michelle (I hope I remembered her name) are doing well and snuggled in - we are getting our first snow storm here in Marshall, Michigan today and I slid home about an hour and half ago - lived here all my life and still don't like the snow and ice - it's pretty but not fun if you have to travel in it for sure.

Nice to meet you - we'll be sure to keep you posted on this. Kind of interesting isn't it - we are going to be two of the best armed with information patients these docs have seen thanks to you guys!

God Bless you too Chemosmoker and lil'chemosmoker!

Judy & Don

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

Yes, proper staging is a must. Plus as other have said, I don't think surgery first would be a person’s best decision if they were anything other than stage 0 or 1. Assuming their health is good enough to survive the surgery. Maybe I miss understood but I thought Judy and Don just have not yet been told the stage. I had not understood that proper staging had not been done. Judy, Has Don been through all the staging steps that Bob outlined in his reply?

paul61's picture
paul61
Posts: 1110
Joined: Apr 2010

Judy,

When my initial staging was done via endoscopic ultra sound(EUS); they believed I was Stage 1. They felt we had caught things early enough so that pre-surgery chemotherapy and radiation was unnecessary. They were wrong, my post surgery pathology indicated that one of the lymph nodes removed in surgery was positive for cancer cells. As a result I had to complete 6 rounds of chemotherapy after my surgery.

Chemotherapy is difficult at best, but much more difficult when you are trying to recover from surgery and you have a compromised digestive system from surgery.

I would say you have received good news. First, that Don is a candidate for surgery. Second, they believe he is diagnosed at an early enough stage so that chemotherapy and radiation MAY not be required. What I don't see is Don's specific staging information. You should have a T number N number and M number. That then translates to a stage. Here is the staging information for Esophageal Cancer:

Stage Information for Esophageal Cancer

When you meet with the surgeon I would ask for Don's specific staging information. If it were T1N0M0 I might be tempted to take the chance and go directly to surgery. If the staging was any thing other than that; I would want to discuss the risk of proceeding directly to surgery without chemotherapy and radiation therapy.

I would ask "What is the NCI Standard of Care" for Don's specific staging.

It sounds like you have some really good news; but I think you need more specific information to evaluate Don's treatment plan.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

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

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Paul!
I was hoping to hear from you on this. That is great information - thank you for sharing this. I just got my notepad out and all these things are going on the question list. Actually, I'm going to print yours out and take it with us. You know that we do not want to ever, ever, ever, deal with this again and if it can at all be prevented, we are sure going to seek that route.

Sounds like we are still in the waiting mode for at least another 2-3 weeks which is very disappointing. Sounds like we need more esophageal cancer specialists.

Actually, where I work (Michigan State University) contributed much to PET technology and the particular project I am on right now is for the Facility for Rare Isotope Beams project - which is a huge collaboration of scientists and physcists to develop the medicines so greatly needed for these cancers. So I am familiar with the radiation and PET aspects of the science as well as linear acceleration which the radiologists use to get the meds in the right place. Let's keep our fingers crossed that we can continue to receive the funding we so desperately need for this project. MSU and DOE have a cooperative agreement so we undergo monthly, quarterly and yearly reviews to be sure we are where we should be and that Uncle Sam is ok with continued funding of this science.

If you think of anything that should be added to our list - please don't hesitate to let us know. We certainly appreciate all that you pioneers do for us. We are sure to be the best armed-with-questions patients these docs have ever had! Thank you!

Judy & Don
P.S. I just shoveled off about 2" of that dirty four letter word from our deck - ugghhhh winter

Mazj's picture
Mazj
Posts: 42
Joined: Oct 2011

When my husband was initially diagnosed he was told they had caught it very early, that it was so small that others might have missed it etc and during the surgery the tumor was found to be very large and had touched one lymph node. He had 3 months chemo prior to the surgery and 3 months after to catch the microscopic bits. Nothing seems to be a certain with this disease. After 6 years of great living and traveling it has come back. Do all you can to cover all bases.
Hope it really is an early stage, that would be so good!
Take care and keep reading. This is the best site.
Marilyn

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Your response is very much like Pauls. We are certainly going to be asking about this. I'm keeping a list of all of this information. So sorry to hear you are going through this again - who would think after 6 years? I am calling all of you who joined before we did "The Pioneers" and believe me - you are. Your advice, suggestions and stories are being taken to heart and this is the best site ever. We are truly blessed to have you as a pioneer and any advice, questions, suggestions you think of - be sure to let us know and I'll write them down on the list.

Please keep us posted on how your hubby and you are doing. We'll be checking on you and praying for you both.

Hugs,
Judy & Don

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Keith was diagnosed in August 2011. He is a fresh post-op right now. He was a T2N0M0. He is 52. They called his tumor a "tweener". Meaning that at some institutions they might forego chemo/rads at a stage 2 without nodes. What they said was given his age and stage they wanted to be maximally aggressive. I don't think I would have had the guts to not do chemo/rad at a stage 2, and neither would Keith. So, for stage 1 I'm pretty sure the NCI guidelines do not recommend chemo/rads. So as Paul said, the staging process has to be done properly. Thought I'd share what we were told by two academic centers.
Cora

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Thank you very much. I'm all for being maximally aggressive with this bugger. They are going to have convince us and all of you that radiation and/or chemotherapy would not be an option. I've read so many stories of this coming back - why chance it? We will be consulting with all of you as much as we will with our doctors.

Seems to me that you all have tons of experience and suggestions and I know the doctors are the experts - but the proof is in the patient/s too.

We do not yet know what stage they are going to say for Don - but I want all our ducks in a row when we get there and with the help of all of you, I believe we will.

Thank you!
Judy & Don

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

Hi Judy and Don, After my endoscope amd dx. I was sent to my surgeon.He ordered all the test,and did the staging, at which time he he refered me to my oncologists for chemo. He does not give rad. fo Ec. I was Y3N1M0.

Knowing the people I have known with stage 1 cancer of different types, as well as EC, the results have not been good for the ones that didn't have chemo. I am not a dr. but I would be scared to not have some chemo. I wonder if there has been any long term studies of the survival rate of ones that took chemo at early stage and those that didn't.

Keep a folder, and ask for copies of all test, even the blood work. He will have so many and you won't remember them all.

Waiting is so hard in the beginning. I was dxed on Nov. 13 and had my first chemo on Dec 26, and it seemed like forever.

We were promised a few snowflakes in Atlanta today, but all we got was a verrrry cold rain.

Sandra

topaz1947
Posts: 24
Joined: Mar 2011

I also was stage 1. My team of doctors at Duke saw nothing to warrent chemo or radiation. There was only one small tumor. After surgery the news came back that I had one node involved that did not show up on any of the tests. Of course the node was removed and then it was strongly suggested that I have chemo and rads, which I did. I could not have asked for a better team of docs. They all did what they thought was best.

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

I, too had surgery first. DX in Feb 2010, Stage II. IL surgery one month later in March 2010 followed by 2 rounds of chemo as one node was found with disease. Will be a two year survivor in Feb. 2012. Best to you and all fighting this disease.

Gerry

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