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ptom -- How ARE you doing?

BMGky
Posts: 666
Joined: May 2010

When you first posted, I must have overlooked or it did not appear until later that your form of EC was the squamous cell form. From what I have read, if I am recalling correctly, this type of EC is on the rise here in North America, that it used to be or still is the more prevalent form in Asian countries. Again, I may be confused as to this.

Anyway. I have no idea as to the recommended treatment protocol for your type of EC. While I stand by my original reply to you regarding surgery, it was addressing adenocarcinoma EC, which is a different disorder and may require different treatment. This being said, I would like to know more.

You may have posted this somewhere else, and I have missed it, but, I would like to know the following information. [It does seem the squamous cell form has few members posting. For this reason, your input is invaluable to those who have this form.

Is a squamous cell EC staged in the same manner as the adeno-carcinoma? Is it located in one area of the throat more frequently than the A-C form? Are its symptoms the same as A-C? What is the recommended treatment protocol? Can there be a curative treatment or positive prognosis for S-C? Is life expectancy similar or the same as A-C?

Now, How ARE you doing? What treatment have you had or were offered but rejected for what reason. How is your overall health? Are you still being followed by an oncology team?
Hopefully, you are enjoying a great quality of life in spite of your having S-C EC.

I hope you will reply to these questions as I would sincerely like to know. Additionally, it will help others. Thanks. BMGky

oriontj
Posts: 390
Joined: Jul 2009

It's usually located toward the middle of the esophagus. They generally don't like surgery for it. My husband one node and the u of c chief surgeon would not operate. My husband choose not to go anywhere else. Couldn't persuade him to get a second opinion.

He was initially treated with a clinical trial erubitux, taxol and cisplatin.

Ned for a year, came back same place and more chemo. The chemo caused severe neurophy and the initial radiation left scary tissue.

Right now he is in the u of c hospital since they did an endoscope and may have caused a hole where the scar tissue is.

Either cancer is a bad scene...so many other things can happen along the way.

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

I have or hopefully had sqamous cell and had I or Lewis over a year ago now, surgery is an option but as other type it depends on what stage, also sometimes where it is located. Sqamous cell is less common than it used to be but of the two I have read it is more aggressive but who knows.

ptom
Posts: 33
Joined: Jun 2012

SC EC is staged in the same manner and is usually located in the upper third of the esophagus. SC EC is more aggressive than Adenocarcinoma but luckily my tumor was well differentiated (which apparently means less aggressive than poorly differentiated SC.) The symptoms are the same. I started having trouble swallowing in May 2011 and thought it was due to dental work and adjusting to new upper and lower partials.

I was diagnosed on 7/7/11 with a well differentiated squamous cell tumor in my esophagus near the trachea junction. A PET scan on 7/20/11 showed the cancer was contained in the esophagus and no nodes were involved. A bronchoscopy biopsy came back negative. Results - T3N0M0.

I had thirty days of radiation which started on 7/27/11 ending on 9/2/11, concurrent with three weekly rounds of Cisplatin that started on 8/9/11. I also had two 96 hour rounds of 5-FU started on 8/9/11. All chemo was cancelled on 8/22/11 because my body wasn’t metabolizing 5-FU fast enough.

On 10/03/11 I had a PET scan which showed a complete response to chemo and radiation and was then classified NED. I had my first esophageal stretch on 10/10/11 with biopsies - no trace of cancer.

On 11/16/11 I started thirteen weekly rounds of Taxol. I was only scheduled for twelve rounds but due to peripheral neuropathy they reduced dose ten and eleven to half strength. I talked the oncologist into increasing dose twelve back to full strength and then requested one more full dose (number thirteen) to make up for the two reduced doses which ended on 2/8/12.

My second stretch was on 12/5/11. Third stretch was on 1/31/12, biopsies taken, no cancer found, esophagus visually normal. CT scan on 3/5/12 - NED. PET scan on 7/13 - NED. My next scan is in October.

My treatment was the same as Adenocarcinoma up to the point of having surgery. I fought for surgery but due to the location of my tumor (directly behind my breast bone in the clavicle area - quite rare as I have been told) surgery is off the table and will only be considered if it returns. My oncologist and three surgeons (EC specialists) said it would be horribly disfiguring as they would have to remove my esophagus starting at the base of my tongue, not behind the breast bone as is the case of Adenocarcinoma. Both doctors also felt that because of my complete response to both rounds of chemo and radiation that I have a good chance of the cancer never returning. We’ll see. And yes, I’m still being followed by my oncologist.

I’m doing really well physically. My cancer center offered a free wellness program at a local gym twice a week for 10 weeks of strength training. I decided to join the gym so I’ll be stronger for a fight if it does return. I’m 5’10” and have weighed 120 since high school. I was down to 95 pounds during radiation but have been able to work my way back to 116 on a good day and 118 on a great day. Banana flavored Ensure has become my best friend.

I do find it very difficult to enjoy a quality of life because no one can say what quantity of life I may have. Being a type A/anal retentive/obsessive compulsive personality and hearing “we just don’t know” from a doctor doesn’t work for me emotionally.

There is more information about me under an earlier post entitled “Types of Esophageal Cancer” on 9/5 created by lenlee65.

Well BMGky, that’s my story and I’m sticking to it. I appreciate your interest and hope this helps other SC patients.

ptom

BMGky
Posts: 666
Joined: May 2010

Wow! I learned a lot about SC-EC. Not a nice disorder; not at all.

You have been through it. I hope you continue to be NED and hope you will let us know how your next scan goes.

Oh, my! No wonder surgery is not a clear option with SC-EC. To remove your esophagus just below your tongue and whatever else they would do would reallly be a BIG surgery. It is good to see you are informed about options and working with a good team.

I can understand your angst over no clear answers to some questions. I like answers myself and will dig and dig. Oftentimes I fail to notice the brick wall I'm running into. But ever now and then, I get a good result.

My husband--the "former" EC patient--we always continue to hope--is more mature than I. He says that no one knows how much time we have for life. So as Paul61 says, "Life might not be the party we hoped for but while we're here, let's keep on dancing." (or something like that) So, enjoy the sunrise and sunset, the gentle breezes of the day, read the comic pages and enjoy a laugh, and continue to post here to help other SC-EC patients.

Hope you are not fighting this alone. You do have us. I don't know that much, but I will always try to be of support. BMGky

Sally.L
Posts: 38
Joined: May 2012

My husband also has squamous cell carcinoma. He was fortunate enough to be a surgical candidate. He had a MIE on Friday, the 31st of August and is doing well in spite of a small leak. It is an ugly disease, he had to have his trachia biopsied to make sure there was no cancer there before they would operate. He is currently NED, but he can't eat or drink right now either until they work out the "tiny leak". Doctor seems to think it will take care of itself in a week or so. I feel very relieved right now, but will always be looking over his shoulder for symtoms of a reoccurrence. Hate that.

Here is hoping for lots more clean scans for everyone.

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

ptom,

As a cancer survivor and one of those folks who likes concrete answers I know how you feel about not having any answers about potential recurrence.

I spent a fair amount of time after my surgery waiting for the "other shoe to drop" and one day I came across a book by Eckhart Tolle called "The Power of Now". His premise is that this instant (e.g. now) is all anyone really has. The past of gone and unchangeable, and the future is unknown and may never occur for some of us. Therefore if we focus on this day and live it the best we can, each day is a gift and a victory.

That is how I now try to live my life. Some days I do well at that goal and some days not so well, but I try. It has made things much easier for my OCD mind since I have started the process.

It sounds like you have had excellent results from non surgical treatment. May your good results continue!!!

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

ptom,

I thought you might find this interesting. Posted on ACOR esophageal cancer listserve yesterday

Click Here to go to ACOR Web Site

Date: Sun, 9 Sep 2012 17:38:16 -0400
From: Cynthia Palmatier
Subject: Celebrating 9 Years!

Just wanted to share,
Tomorrow, September 10th, will be 9 years since Ken was diagnosed with EC in 2003. He had chemo and radiation treatment, but no surgery as the tumor was too high up in the esophagus. He did have a recurrence (lymph nodes in his neck) almost two years after his diagnosis which was quickly taken care of with neck surgery and more chemo, and has been NED ever since.

He just had his yearly CT-scan last month and everything were fine, he does have check ups and blood work with his oncologist every six months, but scans are now only once a year.

He just turned 69 in July and is the most active member in our local volunteer fire department, he is very happy, healthy, and active and for that we are very grateful and feel very blessed.

Cindi and Ken Palmatier
Rock City Falls, NY

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

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

Thanks Paul for sharing Ken's story with all of us. Boy do we all like the good stories and happy outcomes. I am sorry Ptom that you could not get surgery but am so happy for you that you have responded so well to the treatment that was given. I was dx'd with Stage III squamous in July 0f 2009 with a positive node. I was lucky, my tumor was in the middle of my chest but I did have surgery the 3 incision Ivor Lewis and then post op chemo. I am hoping that people do realize that even though squamous is more rare in the USA, it is just as survivable as adeno, at least from what I have read of the latest statistics on it. So any survival stories whether adeno or squamous make us here happy campers. Ptom many happy positive thoughts coming your way and hope that you keep responding to treatment. take care,
Donna70

ptom
Posts: 33
Joined: Jun 2012

Paul,

Thanks for the post from Cindi and Ken. It's just what I needed to read today. I've always said I liked "NED". Now I can invite "Hope" to the party.

ptom

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