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Newly diagnosed, looking for advice & inspiration

anclawson
Posts: 3
Joined: Apr 2013

My sister was just diagnosed, and we were all shocked -  she had no symptoms with the exception of a swollen lymph node.  my sister is only 43, and has a young family, she has an extremly active lifestyle. They have currently staged her a IV, is it possible for this to change once we get the finalized pathology report?  What can we expect?  Does her lifestyle give her a better chance at survivoring?  We are not ready to lose my sister.  What can we do to help her?

JKGulliver
Posts: 81
Joined: Apr 2013

To my knowledge, staging is done after a PET scan.  If the diagnosis was just made, you may be in the endoscopic ultrasound stage where a biopsy is made.  The oncologist will give you the final staging decision.

In Stage IV, chem/radiation is done and this is where her lifestyle will be a help your sister.  The healthier and stronger you enter into chem/radiation, the better off you are.  It is still difficult, however.  Usually, surgery is not done with stage IV.

My understanding is that at the end of the chem/radiation round, the oncologist will stage her again, usually using CT.  Depending on where you go for treatment and care, there seem to be a large number of clinical trials going on all across the country.  Your sister may be asked to take part in one.  After that, there will be regular followup.  Chemo may be resumed depending on the followup results.

These are the things I have just recently found to be of great help to me:

1.  Help clean the house                                         2.  Help with cooking                                     3.  Take kids for outings

4.  Help maintain the car - washing, inside and out     5.  Help maintain the yard.                           6.  Do grocery shopping

7.  Do laundry                                                        8.  Bring favorite movies to her, do a music compilation of her favorite songs

9.  Help research her condition, treatments and alternative treatments for her. You might also research cancer treatment centers in your state.  This might help you; http://health.usnews.com/best-hospitals/rankings/cancer

10.  Help her deal with her medical insurance company.  Depending on the type of coverage, this can be a bigger pain that you realize prior to this experience.

11.  Tell her how beautiful she is and how much you all believe in her.

ebawa
Posts: 37
Joined: May 2012

I strongly suggest she read the book "Knockout" by Suzanne Somers.  This book will show there are many alternitives to just traditional trewatments.  I strongly believe that traditional medicine alone will not allow someone with EC to survive for long.

I was stage three on Feb 2011 went to stage iv in May 2011 but have had clean scans since Oct 2011.  I did 26 radiation sessions and two rounds of chemo.  I juice carrots and apples, drink Essiac tea and do H2O2 therapy every day. I changed my diet to greatly reduce red meat, sugar, white bread and alcohol. 

I have not allowed them to remove my esophagus and I doubt I ever will.  I believe traditional medicine helped kill my tumors but I feel that holistic treatments are what keep me healthy.  I currently feel great, work full time running two companies and eat just about anything I want.  I am very blessed.

Take Care,

Alan

JKGulliver
Posts: 81
Joined: Apr 2013

What is H2O2 therapy?

ebawa
Posts: 37
Joined: May 2012

Hydrogen Peroxide therapy

mandygrv2240
Posts: 1
Joined: May 2013

Hello,

My father was just diagnosed with stage 4 esophageal cancer this past Tuesday. We are all in shock and devistated. He is 62 years old, and for the most part, healthy. Through cat scans and endoscopes with biopsy, they have discovered it has spread to the lymph nodes, liver, and stomach. He has about a 8in tumor right on his esophagus. We are currently discussing our options with the Dr's, as surgery has already been ruled out. I'm hoping he will be a good canidate to go to University of Michigan hospital and get a new treatment they have there. I am just wondering if anyone has any advice, or survival stories to give us a little bit of encouragement? Thank you.

eternalife
Posts: 36
Joined: Apr 2013

Hi ,

My husband has stage iv EC,  diagnosed in Dec. 2011, has taken chemo for a year and will start 5 weeks of radiation on Monday, you mentioned a new treatment at the Uof M, do you know what that is?

tx

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I'm so sorry that you have found your way here. However you will find many survival stories also. My husband was treated at U of M. He was a stage 3 surgical candidate. I have nothing but wonderful things to say about U of M. I have met 2 people there that were stage 4. One ended up being a surgical candidate after 2 years of treatment, he is 6 years out from surgery NED. The other is still in treatment, however I do not know what regime he is doing. Everybody is different and everyone has different outcomes. They are very experienced with EC. I have met people there from all over the world. I have heard that Dr Urba is wonderful, and Dr Beer is a world reknowned researcher there. Good Luck to you.

ps They are very demanding and strict. I would encourage you to start to gather all test results, films, cd's included. Make a file. They will demand this of you. They have a whole team that will look at the results. Also were you aware there are only 3 Drs in the state that are considered experts in EUS(Endoscopic Ultrasound)?

scottdd69
Posts: 2
Joined: May 2013

i was diagnosed with stage 3 in 2011 did the chemo and radiation and surgery twice in same day due to they found a leak and had to go back in spent 21 days in icu did follow up chemo  and last month all my tests came back negative pet scan etc as long as you keep your faith up in yourselve and stay positive anything is possible set goals for yourselve dont dwell in next month next year etc focus on here and now if she was always active and in good health before she stands a good chance im 44 now and am thankful for were im at although i do miss work lol always get a second and third opinion if someone says something cant be done remember what might not work on one person may work on someone else

lyndez
Posts: 22
Joined: Apr 2011

My name is Rick and I'm Lyndez's husband I was diagnosed at the age of 48 with EC with mets to liver, possible lymph node and they saw something on the lung  and was sent home to take care of my affairs. My belief is that EC in most cases is self caused, caused from lack of fruits and vegetables , smoking and alcohol . My wife juiced beets, carrots,red and green apples and anything else she could get her hands on for the past 2 1/2 yrs , along with taking vitamins daily and changing my diet all is clear except a small tumour remaining in my esophagus, my lifestyle is normal but I will never quit my daily routine of eating healthy and juicing. If you research EC treatment you will learn that it is ineffective and has not changed since 1978. Come on let's face it pharmaceutical companies have all of us brainwashed but either I got lucky or giving your body something to fight with really works . If you read further on this site I,m not the only one that has juiced and survived .

Look I'm living proof you have nothing to lose , and everything to gain , give your body the neutrient's it need's start juicing and taking vitamin's and see what happen's. It's now two and a half years later I've seen my daughter get married , I'm now going to be a grandfather and these are things that I originally thought I was not going to see . So stay healthy eat properly and stay positive and fight you have nothing to lose except your life Take care Rick

ebawa
Posts: 37
Joined: May 2012

I was stage IV and have been N.E.D for 18 months and I believe holistic is helping me stay healthy.

I did chemo and radiation and I feel they helped kill my tumors but traditional does not keep it from comming back, in my opinion.

Alan

AKRN2013
Posts: 22
Joined: Apr 2013

Rick,

I would love to hear what kinds of juices you are using.  Do you have recipes you use or just whatever you happen to have on hand.  Also what vitamin regimine are you using? 

 

Thanks! 

lyndez
Posts: 22
Joined: Apr 2011

We make our own juice , we buy carrots , beets, red and green apples,oranges,celery, broccoli , all berries and put them in a juicer and I have two full glasses every morning.

I have two ounces of frozen wheat grass and take (pill form) curcumin, vitamin c vitamin d,a good multi vitamin , vitamin b complex and milk thistle for my liver.

As far as regular food at the start of my journey I avoided all suger, and anything that turns into sugar , I ate mostly fish , chicken and fruits and vegetables. For sugar replacement I used either Honey or Maple syrup which are both natural and alkalining.

For the record I also did Chemo and radiation but my swallowing had improved with juicing and diet before treatment to the point that my stent fell into my stomach after a few weeks.

The biggest test is to purchase PH strips and test how alkaline your body is two or three time daily . If you can keep your body alkaline the cancer can't grow. The most alkalining assistant is diet , cucumbers and lemon are the highest in keeping your body alkaline.

My sister in law also juices and takes vitamins and we are not sure if she will make it but she has definitely stronger and still here because of it. She has triple negative breast cancer, spread to the bone,brain,liver and lung and right now appears to be rebounding and has been off chemo for two months.

Again I don't know if I'm just lucky or if diet is the answer but I honestly believe that it's diet Rick

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Hi there,

My husband was diagonosed with stage 4 EC on April 5, 2012, a day before his 57th birthday. On April 24th, a day before our wedding anniversary he had surgery to have a MediPort (aka Power Port) and a G-Tube put in for feeding as he lost a lot of weight because he could not eat. I CAN NOT STRESS ENOUGH THAT IF CHEMOTHERAPY AND EXTENSIVE TESTING IS IN THE FUTURE, GET A POWER PORT!!! Having this saved my husband's veins from not only being accessed so many times, but saved him from A LOT of pain. With a power port, it is inserted right below the skin and attahced to an artery. A half hour before we went for chemo, blood tests or what ever test required him to be poked with a needle, they go through the power port. A half hour before the procedure he puts on numbing cream and he does not feel anything when the needle is inserted. I have sat in the chemo area and watched nurses's try to find a vein and see grown men and women cry becuase it hurts so much. My husband does not even know the power port is there except for being able to see the buldge under his skin. 

Here are the two types of esophageal cancers-my husband was AC as he had a tumor that was at the base of his esophagus which connected to the stomach. Once the pathology reports come back then treatment will be decided.

  • AC: About 12,000 Americans will be diagnosed with AC (adenocarcinoma) of the esophagus in 2013. In the United States, AC is the most common type of esophageal cancer. Usually, AC tumors are found in the lower part of the esophagus, near the stomach. AC of the esophagus may be related to having acid reflux (the backward flow of stomach acid), having a disease of the lower esophagus known as Barrett esophagus, or being obese.
  • SCC: About 6,000 Americans will be diagnosed with SCC (squamous cell carcinoma) of the esophagus in 2013. In other parts of the world, SCC is the most common type of esophageal cancer. Usually, SCC tumors are found in the upper part of the esophagus. SCC of the esophagus may be related to being a heavy drinker of alcohol or smoking tobacco.

We decided to have surgery to remove his entire esophagus as the cancer had spread to some lymph nodes. While it was a tough recovery from the surgery, he id doing better but we are only 8 months post-surgery. Some people only go through radiation, chemotherapy or a combination. It all depends on the medical team and the options available.

My best advice is do NOT research the internet for a lot of the information is old and medicine has come a long way as far as sruvival rates and treatments. Take it one day at a time and only research the medical terms that you are given for you will find a lot of crap on the internet that may sound like they fit your sister's situation but truly are not. I made that mistake and worked myself up thinking the worse. Once the treatment course has been decided, then you will have a better idea of her options. At this moment we are cancer free.

Hang in there and take things one day at a time. Having cancer is not always a death sentence. I have many friends who are survivors and many who faced what seemed impossible odds of living are still here..my one friend has been cancer free from esophageal cancer for 11 years next month..so do NOT give up hope and think the worse until the worse is present. 

Good luck to you all.

dwhite0002
Posts: 130
Joined: Jan 2010

Hello,

I am 38 years old. I was diagnosed at 32. I am a survivor!

If you'd like to talk, feel free to email me: dwhite0002@aol.com

Godspeed,

David

Hillsboro, OH

francesN
Posts: 1
Joined: Jun 2013

I was dx'd in april, very scared I looked up this site but feel worse these stories seem scary. I was looking for hope stories. I was happy to finally hear your story.

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

There are many many stories of hope here. Keep on scrolling!!!!!!Remember you are not a statistic, keep us posted

goty2001
Posts: 71
Joined: Jul 2012

I'm a week away from 1st anniversary of stage IV diagnosis ... already on borrowed time!

 

Agree with others - Juice (grow your own wheatgrass if you can;t buy fresh)

reduce sugar

chemo - reduced tumors - the mets almost diappeared

live to the full (good advice for everybody)

lyposheric Vitamin C (10g per day)

and .. get checked for HER2 - if positive go for Herceptin and/or TMD-2

jrdials's picture
jrdials
Posts: 8
Joined: Feb 2013

I was diagnosed Apr/2012, Stage 3. Even though I was only stage III, I was told that I wasn't a candidate for either surgery or radiation because of spread to 4 lymph nodes, 2 in chest area, 2 behind stomach. Received chemo therapy for about 4 months. CAT scan was NED on July 15. I've had 2 more CT scans and 2 PET scans since then, ALL cancer free ! Praise God ! Just went for another CT scan Tuesday that marks the one year anniversary since my last chemo treatment. Haven't got the results yet. No Radiation, No surgery, no special diets or exercise programs, just lots of prayer ! Not knocking any of the other approaches, just adding my experience. I have had substantial neuropathy damage to my legs that seems to be permanent from the chemo. Can't walk well or very far, but feel very Blessed to be alive !!

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