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Bermudagirl
Posts: 120
Joined: Jun 2012

Good morning. I stumbled upon this site while researching information prior to an ultrasound endoscopy that my guy is having on Thursday. He's had two endoscopies, the last which biopsied two suspicious areas, and the results coming back positive for a malignancy. Right now we are in the wait and worry stage, as he can't have the ultraound til the end of the week. His gastro guy said there was a "fragment" of cancer? What the heck? A fragment? That sounds so misleading... either you have cancer or you don't just like you aren't a "little bit pregnant"! The gastro guy also told him to start thinking about having surgery, either at Hopkins or Maryland. (We live in the Baltimore area).

Accurate information is sketchy at the moment. We've been told that it most likely was found at the juncture of the esophahgus and stomach. Again, Thursday will be the gold standard, we'll know exactly what we're dealing with then.

Dave has had a history of acid reflux, is a former smoker (heavy) but not a drinker. He has not lost weight prior to this Dx, and is not having problems swallowing. Our fervent hope is that we've caught this early.\

I'm a cancer survivor myself (Hodgkins lympohma) but it looks like that was childs play compared to this. I do know my way around the medical field, and will advocate long and hard for the best possible care.

With limited information I've given, does anyone have any words of wisdom, thoughts or suggestions prior to Thursday? I appreciate any insight you can give. Thanks so much!

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Hi, what you are describing sounds very similar to my circumstances when diagnosed. I was in a Barrett's research program through the University of Washington and the Fred Hutch cancer center. During one of my routine surveillance's they found three biopsies that indicated cancer. The same pathologist at Harvard had been reading my biopsies for the last dozen or more years so he had a very good point of reference as well as a good library of samples to compare to. He is also, I was told by my research Doc, very conservative and will only call cancer when he is certain that's what it is. With all that said, I was also told that of the three biopsies none showed what you would call a complete cancer cell structure. This means they said that the cancer was luckily detected so very early that they literally found a needle in a haystack and that the cancer hadn't yet formed into any type of tumor etc.. but that the cells were just beginning to change. So I can understand why they were called fragments in your Dave's case if what they found were similar to mine. If so he is very very lucky.

After the original diagnosis I was sent to see several different experts at treating EC. one did it endoscopicly, one a combination of endoscopic and minimally invasive surgery and two that did it surgically. I choose to go with the strictly surgical option
because the other options didn't give the assurance of a total and complete cure. There were possibilities that they may not get all of the cancer or that it might reoccur in what was left of my esophagus. I choose to go for the "Gold Standard" of care and had a THE preformed at the UW by a very highly skilled thoracic surgeon, Michael Mulligan. The surgery went very well and my recovery was to use his term "stellar". I couldn't have asked for a better surgeon or outcome. One thing that my diagnosing Doc had prepared me for was that with having my EC detected so early that when they did the pathology on my esophagus after surgery not to be surprised or disapointed or second guess my decision if they didn't find cancer. She said that it was entirely possible that she had gotten all the cancer cells that were present when she took her biopsies. But, she said that there was no doubt that I had EC and that I had made the right choice and I totally agree with her! I didn't want to live looking over my shoulder all the time wondering when it would reappear etc... I already have a heightened awareness of anything that's not normal with my body and it always makes me wonder if its back.

I had my THE January 6, 2012 went back to work full time March 9 2012 and just last Thursday June 7, 2012 had a surgery to repair a hernia that had developed on my incision on my abdomen.

It sounds like Dave is very lucky to have been diagnosed at such an early stage. If you want to be sure of the diagnosis I'd sent the biopsies to another pathologist at a major cancer treatment center that specializes in EC. I'd recommend Brian Reed at Fred Hutch in Seattle, he runs a great program and is one of if not the worlds premier researched in Barretts and has great facility and group of experts in this area. He or one of his staff should be able to recommend a top notch pathologist for a second opinion if you're not comfortable with the original diagnosis.

Best wishes to you and Dave and if I can be of any help at all please ask. It sounds like Dave is in the exact same position I was a few short months ago.

Dave

BMGky
Posts: 666
Joined: May 2010

Sorry, but glad, you found us. This is a family of esophageal cancer survivors, caregivers, and those dealing with Stage IV.

Sounds like you are getting needed information. There are many excellent cancer facilities; however, you want one that is very experienced with esophageal caner; you want a team of doctors that work together in the treatment plan. [I prefer a team to a board per se (my personal opinion)]

Staging will tell you what you need to know and will determine your treatment plan. Unless the esophageal cancer is in a very, very early stage, surgery is not done first. Currently, the seeming protocol is combo chemo/radiation followed by a month's respite and then surgery. Many facilities are now doing minimally invasive esophagectomy which is usually much quicker for recovery.

The treatment is also affected by the presence of nodal involvement and/or metastasis. The diagnosing ultrasound will give you the staging which will guide your oncologist, surgeon, radiation oncologist, and other team members the information needed to attack the cancer. My husband was first thought to be Stage IIB--can't rule out Stage III, but post-op, was determined to be Stage IIA. Following his chemo/radiation treatment, his PET scan was clear; however, our oncologist said he must have the surgery. Due to reasons, he had the invasive Ivor Lewis. Well done but very long recovery. Upon biopsying the removed esophagus, live cancer cells were found under the scar tissue from the radiation. Our oncologist emphatically stated, "That's the reason you do the surgery."

He also advised us that the treatment is brutal and many cannot complete it. He was not inaccurate in his statement. Hyration during chemo is essential and stay on top of that. Once the surgery is over, recovery can take awhile, adjusting to smaller amounts to eat; recovering strength; learning which foods to eat and to avoid.

If a jtube is needed for supplemental nutrition, welcome it. It is a lifesaver. Avoid reading the negative statistics on EC. Yes, they are grim; however, there has been progress that has not reached the internet for review. Come to this board. These people know. I have just a smattering of knowledge.

Having given you the rough part of the road, the journey is worth it. It is a privilege to be eligible for surgery. Once you figure out your new stomach, life is good. My husband was 70 when operated on. He continues to practice fulltime, is in to more than he was before his diagnosis, and is very thankful for his treatment.

When you get some more information, please report it here and the truly experts who help others on here will post to help you.

BMGky
Caregiver
Husband two years post op. Last scan NED (No evidence of disease) We continue to be thankful.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

One more thing if I may, The endoscopic ultra sound is typically used to stage for surgery as I understand it. It looks for lymph node involvement and tumors. It will only measure if the suspected cancer has moved to or shows involvement of other ares. If the cancer hasn't moved past the inermucosal wall you're in the best possible position. I also had a EMR (endoscopic mucosal recetion) at the same time as the ultra sound to determine if the cancer had breached the mucosal layer. Hope that my experience and information is helpful.

Once again best wishes,

Dave

Bermudagirl
Posts: 120
Joined: Jun 2012

Thank you so much everyone, for your comments! You have put my mind at ease just a bit. I couldn't understand the fragment comment, but now it makes more sense. Dave did call his gastro doc this morning, and the doctor said he "thinks" it's in the beginning stages. So of course we are holding on to that until Thursday! I will sift through much of the information on this forum, to just familiarize myself with terminology and all the nuances of EC. If he lucks out with beginning stages we will be so thankful! I shall keep everyone posted, and again many thanks for taking the time to respond and care! Sandy

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