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just starting out

onetuffmudder
Posts: 7
Joined: Jan 2014

Just diognosed 12/18/13. I am a 52 year old female, very athletic, thin and never realized I had acid reflux.  I just had trouble swallowing, and some stomach cramps.  Now my PET scan shows a tumor at the juntion to the stomach and LN near the stomach and pancreas.  Still in shock , talk about a life changer.  I have not started any treatment, trying to get a second opinion at UCSF.  I am terrified of surgery..survivors please give me some encouragment

JKGulliver
Posts: 81
Joined: Apr 2013

You don't say whether or not you've been staged, but the details of your post sounds like you may be stage 3.  You will find many stage 3 survivors on this site.  Don't despair.  Email them directly to get their stories and advice.  Now is the time to draw on your network of family, friends and colleagues.  It is surprising and heartening to find out how many people want to help and care about you.  I have found that when you reach out, surprising things happen.  

Second opinion of diagnosis is good.  Also ask for a second opinion on treatment.  I have found that treatment varies widely by institution and region of the country.  Don't forget to ask about clinical trials.  There are alot of them going on all over the country.  You should have a treatment team made up of at least an oncologist and surgeon.  A radiation oncologist may be added if your treatment includes radiation.  You may also have a GI doctor or even a GP as part of your team, depending on your healthcare system.  It is important to feel comfortable and confident with each member of your team.  You have the right to ask that any or all of them be replaced with another doctor.  If you want to go out-of-network for treatment, talk to your insurance company right away and keep insisting. 

Remember that the commonly cited EC statistics apply to large numbers of people, so they do not make any accurate statement about an individual.  My husband was Stage 2 N0 M0 and he had surgery.  The treatment consumed 8 months of our lives.   There were many, many adjustments, that did not end with surgery.  But we've taken one thing at a time as we've probed to understand what may lie ahead.  You can do this, too, with courage and strength, and the love and care from those around you.

Good luck. 

onetuffmudder
Posts: 7
Joined: Jan 2014

Thanks Big Hug, I am trying to ignore the satistics and be brave. Still waiting for a second opinion.  Update coming soon

dfd24
Posts: 79
Joined: Mar 2011

hello,

i say this to everybody who is new: make sure you have been tested for HER2 or are going to be tested for her2 if you have an operation. it affects treatment. if it isnot  mentioned to you make sure to ask about it.

all the best,

danièle 

 

onetuffmudder
Posts: 7
Joined: Jan 2014

I was HER2 tested, Iam HER2 negative.  Not really sure what is next.  I am stll waiting for my second opinion from UCSF....meanwhile.....chemo here I come.

onetuffmudder
Posts: 7
Joined: Jan 2014

I was HER2 negative.  Looking for advice on the best way to make it thru chemo.  Nutritionaly and mentally. Have not even started any treatment as of yet.  They say I am stage 3 or 4, they dont know for sure.  I feel too good to be so sick, still in denile.

dfd24
Posts: 79
Joined: Mar 2011

my husband has had a lot of chemo since diagnosis march 2010  including cisplatin and folfox which can be "heavy duty". . he also had the operation which is also heavy duty. 

throughout it all he continued a lot of physical activity. at times even pushing himself to get started even when feeling tired. he said that even if tired as soon as he started the exercise he felt better.

 

his exercise is bicycling, he uses it as his normal mode of transport and even carries heavy loads on the bike.

also, he's the kind of person who is always on the move, always doing things. i'd say his energy level even on chemo is higher than a lot of people's , including me.

 

i'd say exercise helps psychologically as well as physically as he is extremely positive and in a good mood almost all the time.

all the best,

danièle

Deathorglory
Posts: 59
Joined: Jul 2013

You're right about this being a life changer.  Accepting that is a large part of finding ways to deal with what lies ahead for you.  No one can tell you exactly what you'll experience b/c everyone gets affected differently even if they're receiving similar treatment for a similar situation.  The one thing you can be asssured of is that you will be affected in ways that are different from your first 52 years.  Speaking of which, it is in your favor that you are relatively young and that you say you're in good pysical condition.  In enduring treatments, young & strong is the thing to be.  Stage IV will not usually include surgery as an option to you, but stage III will frequently be operable, especially if the person is relatively young & fit.  As far as getting chemo goes, it can certainly be very disquieting when you are first approaching it, but hopefully your oncologist is adept at managing the side effects.  As far as nutrition and eating go, ask your doc about taking some vitamins or other supplements (for protein or calories or whatever you may need).  I don't think there will be any impact on your ability to eat from chemo (actually, a lot of folks report that it's easier to eat b/c the chemo is shrinking the tumor), although it may well reduce your desire to eat and your enjoyment of food/drink.  It's been my experience (and I believe most other folks' as well) that radiation and surgery have a vastly more significant impact on your ability to eat.  As long as you're getting enough calories and nutrition, I'd suggest eating whatever is most appealing to you at any given time.  For dealing withh the mental aspects of what you'll be doing, looking at it as a time-limited thing that you just have to endure might be helpful.  Realizing that it's short term and that you've already completed xx%, so what's another yy% can be a motivator to continue and complete your treatment.  

 

A further couple of things:  This is a very personal thing, base your decision making on what you think is going to work best for you, not on what someone else thinks is best for you.  Also, while no one else will have the exact experience you're going to have, someone will undoubtedly have experienced each aspect, even the craziest sounding things.  Someone here will probably be able to share their own experience and let you know what worked/didn't work for them.

 

Best wishes as you start down this road,

 

Ed

 

 

teodor's picture
teodor
Posts: 2
Joined: Feb 2014

hello

I am an 51 year old man diagnosed with esophageal cancer adenocarcinoma in 16.10.2013. I was also playing sport, no acid reflux, no weight loss....in the beginning of October 2013 I started to have difficulties when swallowing. After endoscopy I was diagnosed with esophageal cancer adenocarcinoma, stage IIIA. It was like a thunder on my head.
Because surgery was not an option in that moment, my doctor recommended me CRT(chemo and radiotherapy). I passed through 5 sessions of chemo with CISPLATIN and 28 sessions of radiotherapy.
In the same time a started a diet without sugar, meat, coffee, tea, and other acid foods. I eat o lot of leaf, berries, fish, plant tea(alcaline foods).
I crossed well the CRT without major effects. I was swimming, jogging but in very moderate way. 
One month after finishing treatment doctor started to evaluate my level of health. The surprise is that after CT, PET-CT, endoscopy and eco-endoscopy, biopsy from tissues where my adenocarcinoma was, are negative. No apparently sign of illness.
I still keep a diet and making sport, but also rest.
Praying to God gives me confidence and power.

Don't give up, the cancer can be beaten.

God bless you

 

trainscotch
Posts: 9
Joined: Aug 2013

I toowas to healthy to be sick, but last year a this time I was in chemo and radiation. Surgery was later in July. I was lucky, I had known my abdominal surgeon for 15 years, I was an emergency department Registered Nurse. I hope things are going well, maintain a positive atttitude.

Now I only have slight difficulty getting a deep breath while running, I was a miler.

Good luck!

 

Loretta04
Posts: 6
Joined: Mar 2014

Last month I went to the hospital for chest pains , did a ct scan of my stomach, liver , pancreas , pretty much all my lower extremities, also a chest x ray , head and neck ct. I am having trouble swallowing , and feel like there is something stuck in my chest with burning and the pain is awful. Nothing showed up on any tests at the hospital, but I am having a scope on Monday . Im scared to death its ec. Why would nothing have shown up at the hospital. Im so scared , I know I have barrets . They also said all my blood work was fine as well . Is this common , that nothing would show up. I have my gi and my family doctor telling me that they dont believe its cancer. Why do I hurt so bad. Im so scared . Im 44 year old woman . 

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