38 and diagnosed with stage 4 esophageal cancer

Hello,

Hopefully you've saved your life by quickly realizing that the 1st doctor you went to wasn't any good at doctoring.  It happens too frequently that folks don't act quickly and the cancer spreads as a result of a doctor telling them to take some prilosec and don't worry about it.  Those stories are on this site. Getting to good doctors & hospitals, like the Mayo Clinic, is the most important thing that you can control.  Too many people just go to the hospital down the street because it's convenient.  You mention that you think attitude and support are important, and I agree with that, but I can't stress enough that good doctors are simply better than bad doctors.  By definition, 50% of all doctors and hospitals are below average.  It's critically important to go to the other half.  That is what you are doing, Mayo is a top of the line hospital.

I started out on this journey in 2008 at roughly your age, I was 40.  38 is way too young for this.  I was stage III and had really bad reflux for 20+ years.  Adenocarcinoma is usually a result of reflux.  Squamous cell carcinoma (the only type your first doctor seems to be aware of) can come from years of drinking and smoking.  I noticed food getting stuck in my throat.  I didn't know it, but that's called dysphagia and it"s a very common symptom of EC.  I had chemo/radiation, then surgery then a bonus course of chemo that was the same stuff as pre-surgery, but stronger.  I had a "complete response" and thought I was done with it.  A couple of years later (2011), I had a recurrence in a lung and was stage IV.  I was given 7-8 months (give or take).  I tested HER2+, so the clinical trial I was considering was replaced with Herceptin.  I had a very good response to the folfox/herceptin combo and was told again that I'd had a "complete response".  I've been testing clean (except for a recent nodule in a lung which is hopefully nothing) ever since.

You asked about the surgery.  It is in fact major big deal surgery.  I'd strongly recommend that you look at having it done laproscopically, instead of the open procedure.  It does take a while to adjust to the new way of life.  The two most obvious changes are that you cannot eat as much as before (not even close) and you'll need to sleep in an elevated position (perhaps even more than you're doing.  It took me a long time, but I've been living as close to a normal life as possible for years, now.  I eat and drink whatever I want in near whatever quantities as I want.  That's a big deal for EC folks.  

You mention that you're a little worse off after your second round of chemo.  The side effects are cumulative.  They will get progressively worse.  The side effects then slowly go away after you've stopped, but they don't just disappear right away.

My husband has esophageal cancer, and we live in Western Wisconsin, and he has been treating at Mayo as well.  I am curious to know who you are treating with, and whether you had a surgery consultation.  Are you having the chemo in Rochester?  My husband saw Dr. Harry Yoon for his Stage III adenocarcinoma, and then had Dr. Francis Nichols do his esophagectomy three years ago (traditional open Ivor Lewis).  Hopefully your chemo will shrink the tumors enough that surgery is a possibility.  If you have any specific questions about life after the surgery I can give you some insights. 

I hope your chemo goes well, and they are able to do radiation.  You are in our thoughts and prayers. 

1979bmg said:

October 13th update.

Just an update, I can say that a week after chemo #3 I feel much better overall, outside of the side effects of the chemotherapy itself. So far it is usually the day after I unhook my 46 hour pump that I feel the worst, usually I just sleep a lot and it it pretty much chicken soup and toast as far as food goes for about a day and a half.

I didn't even need my anti-nausea pills after my first treatment, after the 2nd one I took them for about 2 days and after the third treatment I took them for maybe 3 days. The side effects from each treatment have been progressively worse, but still nothing severe yet. The nausea this time seems to linger just a bit even a week later, it is a strange feeling to have nausea and be hungry at the same time. My appetite is back to normal except for the 2-3 days shortly after treatment, I can eat like a horse again. The swallowing problem is still there and noticeable, but significantly less. I used to be able to feel the food and pain as it passed both tumors, now I can only feel the larger one. 

 

The NP that I saw on the 4th said that my blood work literally looks amazing for someone with both cancer and chemo drugs in their system, other than slightly low iron and calcium all vitals are completely normal.

 

So far I am able to exercise and am pretty much back to normal 2 days after unhooking my pump. I have worked myself up to running over 3 miles every other day, and go to the gym every other day. 

 

I definitely do not feel 100%, the fatigue sometimes hits me when I least expect it, but I try to listen to my body and know my limits. 

 

I am hoping that this gives some hope to all stage IV's, and hopefully we are getting to the point where stage 4 is not an automatic death senfence for young and old alike.

Hello,

It's good to hear that you're doing well with your treatment.  It hits different people in different ways, but I'd assume that your youth and physical fitness are factors working to your advantage. 

You mention that you've completed round #3 of chemo.  What chemo are you on and how many rounds are you scheduled for?  My stage IV go-around was 12 rounds of bi-weekly Folfox with weekly Herceptin.  It was brutal (especially at the end), but it was effective. 

I'm six years from my stage IV diagnosis this month.  Unfortunately, there aren't a ton of stage IV success stories out there (though there are a few).  Please continue posting/updating here, you are, in fact, giving hope to others.  If you look at the counter on your post, you can see that a whole lot more people read your posts than actually reply.  Each of those readers may well be someone you've positively impacted.

Best Wishes,

Ed

Funoutsyd said:

2 1/2 yrs and numbers are low and manageable at this time.

Greetings,

I am now about to turn 56yo and I was diagnosed stage 4 grade 3 undefined esophageal adeno carcinoma in April of 2015.  I've learned to take a more wholistic approach to my own care, but I'm very interested in finding out what others are finding successful.  Just logged into the site today.

Dennis

 

HI Dennis,

My name is Deirdre and my father (60 Years Young) has just been diagnosed with Stage IV Esophageal Cancer on the 5th September. We are from Cork, Ireland and do not know of anyone else who is dealing with this type of cancer. My father started Chemo yesterday, Cisplatin & 5FU and HER2. I have had him on several supplements up until yesterday.

1) Beetroot, Apple, Carrot & tumeric Juice (all organic) daily - with Vitamin C powder & Wheatgrass powder added.

2) Cottage Cheese & Flaxseed - small quantity in the morning.

3) Salvestoral Platium - 3 times a day.

4) Smothies with - Almond butter, Almond Milk, Banana, 2 x TBS Chia Seeds, 1 x TBS Sunflower Seeds, Coconut Oil, Vegan Protein Powder, Milk Thistle & Essiac Capsules x 2.

5) Lemon, Baking Soda, Echinchea Water

6) Looking to start him on Curcumin Capsules from Life Expansion soon

However the hospital he is attending right now are very anti any alternative treatments and have told him to stop all of the above. I would be really interested in knowing you story and what you did and did not over the past 2 1/2 years.

Great to hear about survivors doing so well. <Content removed by CSN support staff>

Best Regards,

Dee 

I declined the esophajectomy because of the negative posts I have read about the poor quality of life post op and a surgeon at Duke Medical that does about 100 of these surgeries a year and attends conferences to speak about the High risk for these surgeries being the  #1 risky surgery in this country.  I went to MD Anderson in Houston and had a very minor surgerical procedure (EMR) where the EC tumor was removed and I am currently desease free. MD Anderson has been ranked as the #1 cancer care center in the nation.

Wishing you all the best and thank you in advance for sharing your stories as I watch my Man tackle this monster.  Stage IV Esophageal Adinocarcinoma post esophagectomy, second round FOLFOX/Radiation.  Very interested in knowing how to manage eating and hydration without a functioning stomach, and dealing with radiation side effects such as ulcerated "everything".  We've been pretty proactive and smart about nutrition and treatment.  But now, mucus is setting in and it's difficult to sleep when needing to spit every few minutes, and at a 40 degree angle I might add.  He has all the "concoctions" to minimize all the side effects.  Very difficult ride . . . . feel free to chime in, I'll be checking in.

Dear BMG,

I've fought with ec for 3 years, but not stage 4 level. Sorry yours was so advanced when they found it. I started my treatments with chemo-radiation then switched to naturopathic means for a couple years. Actually this regenerated my esophagus somewhat, kept my immune system strong (chemo really knocks that down) -- haven't had a cold for 3 years, and contained the cancer in the tumor area. If interested in how I dealt with this through the medical, natural, and spiritual, let me know.  cancereclipse@gmail.com