RevaB~U R Welcome 2 talk 2 EC patients&survivors here as well~EC needs as much attn. as Breast Cance

LorettaMarshall

Good afternoon Reva -

Glad to know you’re EC free!  In response to your request, I see that Paul has already sent you a private message.  Here is what you wrote this morning. 

"https://csn.cancer.org/node/307597 - Facebook Page -

Hi. I'm Reva and have been EC free for just over one year! May I be added to the page please?? I wish I had found this site when I was first diagnosed. I have often said breast cancer patients have a community to converse with and I felt quite alone."

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I'm choosing to answer your letter on a separate forum because I agree with you.  Breast cancer patients have world-wide publicity not afforded to Esophageal Cancer patients.  If you need to ask us any questions, you can always come back here to this particular link, and your questions will be all in one place.  Now you will have two sites that can help you along in your recovery from Esophageal Cancer. 

My husband and I "simply don't do FACEBOOK."  I have many friends there, but we just "don't go there!"  I know exactly why and when the FB group was formed.  Paul is a “life-long founding member” and most knowledgeable about EC.  Now I often read things that relatives send me, and I say, "You put too much personal stuff on FACEBOOK", but to each his own.  I just want to say that I agree with you.  I’m going to be frank. Absolutely too much emphasis is put on “Breast Cancer” as opposed to the fastest growing cancer, Esophageal Cancer. 

Now don’t get me wrong.  My own sister had breast cancer, was successfully treated and never had a recurrence.  Naturally we’re sad to hear that anyone has been diagnosed with cancer.  But I am disappointed that more people don’t know anything about warning signs of possible Esophageal Cancer, and are just settling for some kind of antacid or omeprazole.  And far too few doctors send their patients to a gastroenterologist to have an endoscopy.  Rather it seems most often that the doc will just write them a prescription for Nexium for instance.  And it has been shown that Nexium can actually mask the symptoms of Esophageal Cancer even while the heartburn may be relieved.  Many EC patients presenting with Stage IV at their initial diagnosis were regular NEXIUM users.  So I have a problem with doctors who are not more aware that acid reflux and heartburn can be far more serious than they realize. 

 When I see “pink on all the ball players, including socks and shoes” I see RED!  I say, “You would think that Breast Cancer is the deadliest cancer.  It is not.  LUNG CANCER is #1.  Moreover, Breast Cancer patients have a longer survival time, on average, than do Esophageal Cancer patients.  I can speak as a Stage IV cancer patient myself, and my Ovarian Cancer average life span is not as long as that of BC patients.  There’s no preliminary checkups that we can have on a regular basis to “catch” OC in its infancy—much like EC is most often not discovered early. 

And so, I say this.  While I know BC patients and am happy to see them “alive and well”, far too little emphasis is put on finding a cure for Esophageal Cancer as compared with Breast Cancer.  There is one great improvement in surgical procedures—namely the Ivor Lewis Minimally Invasive Esophagectomy (MIE) —but so far traditional chemo meds and radiation haven’t changed for years and years.  Currently there are many immunotherapy clinical trials ongoing, but nothing that has surpassed the traditional treatments thus far.  Now Reva—don’t be discouraged by my remarks.  I’m thrilled that you are still around and I wish for you a long life with no recurrence.  But we EC patients for the most part are “realists” and are aware of statistical data.  And we always pray that we will “beat that number.” 

Sorry it took you a year to find us here.  Many of my friends on FB know of me and my husband, William.  They are a great group of caring and informed individuals.  Not everyone knows about EC, so keep in touch with those who do.

Best wishes,

Loretta (Wife of William – DX November 2002 – Adenocarcinoma @ the Gastroesophageal Junction – Stage III (T3N1M0) – Neoadjuvant chemo 5-FU & Carboplatin plus 25 radiation treatments—then the Ivor Lewis Minimally Invasive Esophagectomy on May 17, 2003, by Dr. James D. Luketich at the University of Pittsburgh Medical Ctr.)  So far William is still cancer free 15 years later!)

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 1.   https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/breast-cancer-survival-rates.html

“…5-year relative survival rates for breast cancer, by stage

The outlook for women with breast cancer varies by the stage (extent) of the cancer. In general, the survival rates are higher for women with earlier stage cancers. But remember, the outlook for each woman is specific to her circumstances.

• The 5-year relative survival rate for women with stage 0 or stage I breast cancer is close to 100%.
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• For women with stage II breast cancer, the 5-year relative survival rate is about 93%.
• The 5-year relative survival rate for stage III breast cancers is about 72%. But often, women with these breast cancers can be successfully treated.
• Breast cancers that have spread to other parts of the body are more difficult to treat and tend to have a poorer outlook. Metastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%. Still, there are often many treatment options available for women with this stage of breast cancer…”
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2.  https://www.cancer.org/cancer/esophagus-cancer/about/key-statistics.html

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3.  https://www.cancer.org/cancer/esophagus-cancer/detection-diagnosis-staging/survival-rates.html

“…Survival Rates for Cancer of the Esophagus by Stage

Survival rates are often used by doctors as a standard way of discussing a person’s prognosis (outlook). Some people may want to know the survival statistics for people in similar situations, while others may not find the numbers helpful, or may even not want to know them. If you decide that you don’t want to know them, stop reading here and skip to the next section.

The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. Of course, many of these people live longer than 5 years.

Five-year relative survival rates, such as the numbers below, assume that some people will die of other causes and compare the observed survival with that expected for people without the cancer. This is a more accurate way to describe the chances of dying from a particular type and stage of cancer.

To get 5-year survival rates, doctors look at people who were treated at least 5 years ago. Improvements in treatment since then may result in a better outlook for people now being diagnosed with esophagus cancer.

Survival rates are not readily available for each stage in the AJCC staging system for esophageal cancer. The survival rates below come from the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) database, and are based on patients who were diagnosed with esophageal cancer between 2003 and 2009. The SEER database doesn’t divide survival rates by AJCC TNM stage. Instead, it divides cancers into 3 larger, summary stages:

• Localized means that the cancer is only growing in the esophagus. It includes AJCC stage I and some stage II tumors (such as those that are T1, T2, or T3, N0, M0). Stage 0 cancers are not included in these statistics.
• Regional means that the cancer has spread to nearby lymph nodes or tissues. This includes T4 tumors and cancers with lymph node spread (N1, N2, or N3).
• Distant means that the cancer has spread to organs or lymph nodes away from the tumor, and includes all M1 (stage IV) cancers.

Stage	5-Year Relative Survival Rate
Localized	40%
Regional	21%
Distant	4%

These survival rates for esophageal cancer do not separate squamous cell carcinomas from adenocarcinomas, although people with adenocarcinomas are generally thought to have a slightly better prognosis (outlook) overall.

Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they can’t predict what will happen with any particular person. Knowing the type and the stage of a person’s cancer is important in estimating their outlook. But many other factors are also important, such as the treatment received, how well the cancer responds to treatment, and a person’s overall health. Even when taking these other factors into account, survival rates are at best rough estimates. Your doctor can tell you how well these numbers may apply to you, as he or she knows your situation best.”

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4.  http://www.medicinenet.com/script/main/art.asp?articlekey=192981&ecd=mnl_day_011216

Heartburn Meds Linked to Chronic Kidney Disease

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5.  https://www.nlm.nih.gov/medlineplus/news/fullstory_158267.html

 “Doctors Often Overestimate Promise of Newly Approved Drugs

Many misinterpret FDA 'breakthrough' designation, survey finds…”

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 6.  http://www.post-gazette.com/home/2011/08/01/Heartburn-meds-tied-to-cancer/stories/201108010183

 Heartburn meds tied to cancer - Popular drugs may mask risk for disease

August 1, 2011 12:00 AM - By David Templeton Pittsburgh Post-Gazette

 Drugs such as Nexium, Prilosec and Prevacid that control production of stomach acid and treat heartburn, reflux, peptic ulcers and related conditions are some of the most popular medications on the market.

But long-term use of these drugs, known as proton pump inhibitors, can have unexpected consequences, a new study shows.

Blair A. Jobe and his research team at the University of Pittsburgh School of Medicine say the severity of symptoms for GERD, or gastroesophageal reflux disease, has an inverse relationship with the presence of Barrett's esophagus, a precursor to a lethal form of esophageal cancer known as adenocarcinoma.

The concern is that good symptom control does not reduce cancer risk but actually increases it…”

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ClaCla

Esophageal Cancer

Thanks, Loretta, for sharing that info about Esophageal Cancer.  I know how hard it is to get doctors to act when one is concerned about the possibility of throat or EC.  I learned yesterday that there is a mass in my lung, and am thinking maybe now I will finally learn the condition of my throat and esophagus as well.  Currently awaiting an appointment for the PET scan of my lungs.

LorettaMarshall

ClaCla said:

Esophageal Cancer

Thanks, Loretta, for sharing that info about Esophageal Cancer.  I know how hard it is to get doctors to act when one is concerned about the possibility of throat or EC.  I learned yesterday that there is a mass in my lung, and am thinking maybe now I will finally learn the condition of my throat and esophagus as well.  Currently awaiting an appointment for the PET scan of my lungs.

ClaCla~U R right 2B concerned~PET will confirm suspicions!

Hi there ClaCla ~

I was glad that Reva had found this site.  It’s critical to find others who understand the facts of Esophageal Cancer.  People do “need people” who have walked already where they will soon be going.  Naturally, we wish that cancer didn’t exist, but when it strikes, we need others that have experience in that particular field.  And so, naturally we hope you don’t have cancer, either lung or Esophageal, but should the PET scan show EC with metastasis to the Lung, you will find others here who have had that same diagnosis.  I truly hope that will NOT be the diagnosis, because that is the definition of a Stage IV cancer.  In this particular letter, I was just agreeing with Reva about the public attention afforded Breast Cancer patients, and very little for Esophageal Cancer patients, although BC longevity stats at a 5-yr. interval are much better than those of our EC patients.  Few people realize that is the case. 

However, I see that you’ve also posted remarks on the Lung Cancer site as well. You wrote there: https://csn.cancer.org/comment/1589415#comment-1589415

  “…I just learned this week that a CT scan shows there is a 3.5 x 4.5 cm mass deep inside my lower left lung.  The pulmonologist said there is only a minuscule chance of it not being lung cancer…”

Since I live in the country I love, the United States of America, I have to go to the conversion chart when someone gives measurements in millimeters or centimeters.  I’m more familiar with inches.  And so with measurements that have shown up on the CT scan, you need to be examined further as soon as possible.  Accordingly, these are the measurements in inches -

3.5 centimeters is equal to 1.377953 inches.

4.5 centimeters is equal to 1.771654 inches.

You have every right to be concerned.  I sure hope there will be no delay in the scheduling of the PET scan.  It will show “live” activity and anything that is suspicious will show up in the scan of your chest.  Sometimes a scan is ordered “from head to toe” and sometimes elsewhere in between.  Your scan will include the chest and the pelvis at the least.  So have it done ASAP, and please don’t “mess around with some small-town local hospital” like the one the person spoke about on their new post in the Lung cancer link today.  You say, that the pulmonologist says there is only a “miniscule” chance that it is not lung cancer.  Oh me—oh my! 

So ClaCla, whenever you are scheduled for the PET scan, tell the people conducting the scan that you want a copy for your own personal files.  Just tell them ahead of time, and they will make you an extra copy.  There should be no extra charge.  And then when the report of the scan is read, you can request a copy of that as well.  It’s better than trying to remember what scan you had where.  I trust you have a copy of your CT scan as well.  Often a PET/CT scan is ordered and that’s always good. 

We would always have a SECOND Opinion, and if something does show up, you will already have a copy of your own records that you can share.  It’s good to keep a record of the days you went where, and what took place.  If and when a person goes for a Second Opinion, it will save time.  Nothing is so aggravating as to call up and request a record, and in a couple of weeks, you have received NOTHING.  And then you learn, somebody failed to carry through.  It happens all the time.  The quicker a person acts, once a cancer diagnosis is established the better.

So for now I will just say that I know how you feel since learning that you have a mass in your lung.  That changes your life in a “squinate”.  That’s a southern term I suppose.  It’s somewhere in between a second and a minute.  And if that isn’t a real word, it should be.

I could have even used the illustration of the “speed of light”!   But only God can “think that fast” so I’ll settle for how a cancer diagnosis changed my life in a “squinate”. 

https://www.grc.nasa.gov/www/k-12/Numbers/Math/Mathematical_Thinking/how_fast_is_the_speed.htm

“How "Fast" is the Speed of Light?

Light travels at a constant, finite speed of 186,000 mi/sec. A traveler, moving at the speed of light, would circum-navigate the equator approximately 7.5 times in one second. By comparison, a traveler in a jet aircraft, moving at a ground speed of 500 mph, would cross the continental U.S. once in 4 hours.”

For now, I will just say hello and goodbye, and if the PET scan shows what your pulmonologist suspects, you should return to this site or the lung cancer site, whichever is most relevant, and make some friends.  You will benefit by their personal stories. 

Most sincerely,

Loretta (Wife of William

P.S.  I have one more suggestion.  If and when you need to return here, please write on your own “separate topic form” here.  That way your entry will be the first one listed, and each time you need to converse with us, you can go back to “home base” (your original entry) and we will then all be on the same page.

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1.      http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

Mayo Clinic says get a second opinion – first ones are frequently wrong

by Melissa Turtinen - April 4, 2017 12:17 pm

 " If you’re diagnosed with an illness, you might want to get a second opinion.

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

• Only 12 percent of patients left the Mayo Clinic with the same diagnosis.
• In 21 percent of cases, the diagnosis was changed completely.
• In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the 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 assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.

How to ask for a second opinion

It may seem a little awkward to ask your doctor for a referral to get a second opinion, but don’t worry – asking for a second opinion is pretty normal, U.S. News and World Report says, noting any doctor who is good at what they do will welcome a second opinion.

Here are some tips about seeking a second opinion:

– Don’t worry about asking for a second opinion for the minor things. Instead, seek a second opinion for serious or chronic issues, especially if you’re unsure about your doctor’s diagnosis or if the treatment for the issue is experimental or risky, U.S. News and World Report notes. But it’s important not to wait too long to get a second opinion, because you don’t want to delay treatment for too long, the Patient Advocate Foundation says.

– When asking for the second opinion, tell your doctor you just want to be fully informed about your diagnosis, prognosis and treatment, Compass Healthcare Solutions suggests. You can ask your doctor for a referral to see a specific doctor you have in mind, but WebMD says don’t see a doctor that is affiliated with your initial doctor – they probably won’t contradict them.

– Before you go see the new doctor, make sure you get a copy of your medical records and test results, the Patient Advocate Foundation says. Sometimes tests can be wrong, though so WebMD says you can ask for a second medical opinion and for the lab or pathologist to do the tests again.

– When you go in for your second opinion, remember you’re looking to confirm your current diagnosis – the second opinion isn’t always right, U.S. News and World Report says. Doctors may differ on your diagnosis or a treatment plan, and ultimately it’s your choice to decide what’s best for you, the Patient Advocate Foundation says.

For more information on when and how to get a second opinion, click here."

2.      http://www.cfah.org/prepared-patient/make-good-treatment-decisions/should-i-get-a-second-opinion

“Should I Get a Second Opinion?

Many people feel uncomfortable with questioning the authority or expertise of their physician. Some fear that they will receive worse care if they appear to be pushy or difficult patients. Others worry that their actions will be seen as a “betrayal” and could damage social ties they have with their doctor.

Gathering multiple opinions on your medical condition can be one of the most challenging decisions that a patient has to make. The following resources can help you with the process.

What’s at Stake in Getting a Second Opinion?

Two recent studies pinpoint what’s at stake in getting multiple medical opinions: changing the course of treatment; and getting a different diagnosis. In a University of Michigan study of breast cancer patients, more than half of them changed their treatment after getting a second opinion on their diagnosis from a “tumor board” of oncologists, surgeons and radiation experts. In a Johns Hopkins study of 6,000 cancer patients, researchers found that one to two of every 100 patients who sought a second opinion after a tumor biopsy had received a wrong diagnosis…”

3.      http://www.cancer.net/find-cancer-doctor

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4.      http://www.cancer.net/cancer-types/lung-cancer-non-small-cell

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5.      http://www.cancer.net/cancer-types/lung-cancer-small-cell

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6.      http://www.cancer.net/cancer-types/esophageal-cancer

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