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Uncle Mike~Stage IV Esophageal Cancer~helpful references & info 4U

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

Dear Uncle Mike

You’ve obviously come to a good site to find out more about your cancer.  You state that your diagnosis is Stage IV Esophageal Cancer.  However, you are talking about having surgery!  Usually Stage IV EC patients are treated palliatively, with chemo and/or radiation.  So I’m wondering if you have had a SECOND opinion.  This is most advisable. 

Furthermore, I see that you have made 3 entries today all on the same topic forum.  The one post you chose to answer on first began on May 23, 2008 and there are no “currently active posters” on this particular forum.  Therefore you may not hear anything from anyone you have addressed on this site.

For your information, when you “click” on the picture or name of anyone who has made a post on this forum, it will give you two specific dates.  It will list the date that person first joined, and then the date they were last on.  So in that regard you may be interested to know that you probably won’t hear from any of the following to whom you made inquiries for the following reason.

This particular posting was first written here 10 years ago.  It has been read by 17,905

https://csn.cancer.org/node/157909

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This is what you wrote today in that particular posting, and I see that you have addressed 3 different people all of whom were “here” at one time, but are no longer.  You said you were Stage IV Esophageal Cancer.  I have included references as to “stages & treatments” in some references below.  Has your cancer spread to another organ?  If so, normally no surgery is prescribed.

Your comments were posted here and then you asked 2 others about their experience. 

https://csn.cancer.org/comment/1643817#comment-1643817

“Uncle_Mike

I have just finished 3 weeks

Oct 28, 2018 - 2:44 pm

 I have just finished 3 weeks of intense Chemo & Radiation. I am now trying to heal before surgery, but my stage 4 esophageal & stomach cancer is pretty advanced. The way the surgery was described by the surgeon is to totally remove the esophagus & the top 1/3 of my stomach and then use the rest of my stomach/large intestines to make a new esophagus. This seems very desperate with many potential disasters. The last 6 weeks have been pure torture. What is your quality of life like? What are your limits and pain level like? What can you eat? How do you sleep? As you can tell I am a little nervous. Your feedback is greatly appreciated. “

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“C0399” hasn’t posted anything since November of 2011

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“Cyn0418” hasn’t been online since Sunday, November 10 2013

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“tanseyj” hasn’t made any comments here since March of 2018.

However, in his post he gave a site with the address below:

https://thetanseys.webs.com/Cancer%20Update.htm

I took a look at it.  It is exhaustive, but at the very bottom, he gives his personal telephone numbers, personal address, and e-mail address.  I’ve no idea if that is still current or not, and therefore, I will not list those things here.  However, you might be able to contact him personally by using that information.

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So may I suggest that you post a “new separate topic” on this forum, if you wish to talk to other Stage IV EC patients that are more active?  Some of them may answer you, but I do know that there are several battling this stage of cancer presently.  None of them that are Stage IV are talking about having an Esophagectomy. 

While the surgical procedure you mention has been performed, it is usually performed on Stage III or under.  There are different types of Esophagectomies.  But the bottom line is I know anyone that has been diagnosed with Esophageal Cancer benefits by talking to other patients and knowing about procedures, treatments, stages, options.  So may I suggest that you will probably receive a quicker response from patients currently active on this site?

By way of information, my husband (Stage III EC – T3N1M0) has been blessed to be alive and well now 15 1/2 years after his Ivor Lewis Minimally Invasive Esophagectomy.  (A series of small band-aid incisions.  Also known as the MIE.)  It was totally laparoscopic and performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center, (UPMC) on May 17, 2003.  Dr. Luketich pioneered this newest and latest type of Esophagectomy in the mid-90s.

So since I don’t know how much you have researched this cancer, I will give you a few references below that may be helpful.  I can believe you when you say “the last 6 weeks have been pure torture.”  Mike my concern for you is that you may not be having the best surgical advice, and I would implore you to be certain to have a SECOND opinion before allowing any surgeon to perform an esophagectomy on you with an “advanced stage IV Esophageal Cancer.”  Also it should be with a major hospital facility that has at one of their “specialties” Esophageal Cancer.  Not every hospital is equipped to perform this surgery, and just because the facility may have “cancer” in the name of their hospital that doesn’t necessarily make them “qualified” to treat EC patients.  So I believe it would be in your best interest to seek out a major facility that has a good reputation for dealing with this type of cancer.

It would be tragic for you to endure any more pain than you are already in presently.  EC patients that qualify for surgery can, and do make, a full recovery often, but usually, as I said in the beginning, surgery for a Stage IV EC diagnosis usually includes only palliative measures.  Many have lived a long time with those measures while others have not, I am sorry to say.  I trust you don’t mind my being so blunt, but I’m worried for you, and want you to be at a place where “competency and experience” rates are excellent!

Loretta Marshall - (William’s wife)

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1.     http://www.sandiegouniontribune.com/business/biotech/sd-me-second-opinions-20170404-story.html

“First medical diagnosis often incomplete or plain wrong, study finds…

When your doctor gives a diagnosis of a complicated disease, it often pays to get an independent second look, according to a study from Mayo Clinic published Tuesday.

Second medical opinions given at the famed medical institute most often result in a refined or totally new diagnosis, the study found.

In 21 percent of cases, Mayo Clinic doctors gave a completely different diagnosis than the original.

The diagnosis was refined or extended in 66 percent of cases. In the remainder, the diagnosis was unaltered…”

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2.     https://health.usnews.com/health-care/best-hospitals/articles/faq-how-and-why-we-rank-and-rate-hospitals

FAQ: How and Why We Rank and Rate Hospitals

“What’s behind our specialty rankings and our ratings in procedures and conditions.  By Avery Comarow, Contributor Aug. 14, 2018, at 12:00 a.m.

U.S. News estimates that nearly 2 million hospital inpatients a year face the prospect of surgery or special care that poses either unusual technical challenges or significantly heightened risk of death or harm.

FAQ: 2018-19 Best Hospitals Specialty Rankings

FAQ: 2018-19 Best Hospitals Procedure and Condition Ratings

FAQ: 2018-19 Best Hospitals Honor Roll

FAQ: 2018-19 Best Regional Hospitals

FAQ: 2018-19 Best Children's Hospitals

…2018-19 Best Hospitals Specialty Rankings

Published August 14, 2018

You've been informed by your doctor that you're about to take your place in the parade of roughly 33 million patients a year who are admitted to U.S. hospitals for a procedure or other care. The hospital the doctor suggested for you might be just right for you, but maybe not. Checking the U.S. News Best Hospitals specialty rankings in whichever of the 16 specialties applies to you is in order if your care calls for special expertise or if age, physical ailments or a chronic condition could add a layer of risk. This FAQ explains how the Best Hospitals specialty rankings are produced and addresses questions of interest to media and health care professionals. A formal methodology report, available as a downloadable PDF, provides much more detail.

What are the specialties in which hospitals are ranked?

There are 16 specialty areas. In 12, ranking is determined mostly by data: cancer, cardiology & heart surgery, diabetes & endocrinology, ear, nose & throat, gastroenterology & GI surgery, geriatrics, gynecology, nephrology, neurology & neurosurgery, orthopedics, pulmonology, and urology.

In the remaining four specialties (ophthalmology, psychiatry, rehabilitation and rheumatology), ranking is determined entirely by reputation, based on responses from three years of surveys of physician specialists.

The rankings name the top 50 hospitals for complex care in each of the 12 data-driven specialties and roughly a dozen in the four reputation-determined specialties...”

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3.     https://health.usnews.com/best-hospitals/rankings

2018 Hospital Rankings by Specialty

U.S. News hospital rankings for the top three hospitals in each of the 16 specialties are listed below. For a list of the best hospitals overall, see the ones that made our 2018-19 Honor Roll.

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4.     https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

“Official U.S. News - BEST HOSPITALS FOR GASTROENTEROLOGY & GI SURGERY

U.S. News provides information here about 1,575 hospitals in Gastroenterology & GI Surgery that see many challenging patients. Listed hospitals had to treat at least 430 such Medicare inpatients in 2014, 2015 and 2016. The 50 top-scoring hospitals are ranked, followed by high performing hospitals. Find top gastroenterologists near you…”

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5.     https://stanfordhealthcare.org/medical-treatments/e/esophagectomy/types.html

Types of Esophagectomies

Overview  -

Conditions Treated

Types of Esophagectomies

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6.     https://mavendoctors.io/cancerconnect/esophageal-cancer/overview-of-esophageal-cancer-14zjEuDU5kacbivgYfc5eA/

“Overview of Esophageal Cancer - By Cancer Connect - Sep 27-edited

Signs, Symptoms of Esophageal Cancer: Who's at risk? How is it diagnosed?

Overview of Esophageal Cancer

Medically reviewed by Dr. C.H. Weaver M.D. 8/2018

Esophageal cancer is relatively uncommon and can be very deadly. Each year in the United States, there are roughly 17,000 individuals diagnosed with esophageal cancer and 15,000 deaths from the disease.[1]

  • Signs & Symptoms
  • Risk Factors for Esophageal Cancer
  • Diagnosis & Tests for Esophageal Cancer
  • Biomarker-Genomic Testing for Precision Cancer Medicines
  • Staging of Esophageal Cancer...”

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7.     https://www.cancer.net/cancer-types/esophageal-cancer

https://www.cancer.net/cancer-types/esophageal-cancer/stages

“…Stage IVA: Any of these conditions:

  • The tumor has spread to structures near the esophagus and either no lymph nodes or up to 3 to 6 lymph nodes.
  • The tumor has spread to 7 or more lymph nodes.

Stage IVB: Cancer has spread to another part of the body…”

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8.     https://www.cancer.net/cancer-types/esophageal-cancer/treatment-options

“…Metastatic esophageal cancer

If cancer spreads to another part in the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Clinical trials might also be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your chosen treatment plan.

 For metastatic esophageal cancer, palliative or supportive care is very important to help relieve symptoms and side effects. The goal of treatment is usually to lengthen a person’s life, while easing symptoms such as pain and problems with eating. Your treatment plan may include chemotherapy, as well as radiation therapy to help relieve pain or discomfort. For example, an esophageal stent, laser therapy, photodynamic therapy, or cryotherapy may help keep the esophagus open (see above).

For most people, a diagnosis of metastatic cancer is very stressful and, at times, difficult to bear. You and your family are encouraged to talk about how you feel with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group…”

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 9.     https://www.cancer.org/cance/esophagus-cancer/treating/surgery.html

“Surgery for Esophageal Cancer

  

For some earlier stage cancers, surgery can be used to try to remove the cancer and some of the normal surrounding tissue. In some cases, it might be combined with other treatments, such as chemotherapy and/or radiation therapy...”

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