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30 yr old female dx EC

cindyrk23
Posts: 12
Joined: Feb 2018

My wife was dx few weeks ago with EC , she is 30 yr with no GRED , no smoking & no drinking history , not obesse , very athelitic & fitness girl . Started as swallowing problem , few months went through as acid reflux and when EGD was done it revealed 3 cm tumor in EJ . Awaiting for PET scan , MRI showed no mets to liver as of now . She is being treated at James center in OHIO . Most likely will be radiation and follow up surgery . Any one who has experience with James for EC treatment ?  Initially I thought this is big center with research but our experience till now is not giving me confidence , they seem to go standard route of treating her case as any other 70-80 yr old case . 

Thinking if we should consider Cleveland clinic for surgery . The process here at James is also so slow with appointments for MRI , Doc , PET scan taking atleast 1 week for each , since 3 weeks we just 1 doc initial visit and MRI . 

Good luck to all ,

Thnx

Iamajeep
Posts: 1
Joined: Feb 2018

Hubby was diagnosed 1/17/18 with a "tumor" and then further testing in the next 2 weeks showed the tumor has gone in to his stomach and distant lymph nodes. We went from a plan of radiation for 5 days a week, 5 weeks and included one day of chemo each of those weeks to chemo, every 2 weeks, for 3 days at a time (fanny pack type of thing for 48 hours after clinic treatment) for the rest of his life. Telling that to a 57 year old man is not good. We are currently waiting to hear back from MD Anderson in Houston for a 2nd opinion. I strongly suggest you do the same if you are not happy or impressed with the current place :( 

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello,

You are on the right track getting a second opinion at a world class cancer center.  Way too many folks are content dealing with their local hospital.  Local hospitals are just fine for a sprained ankle, but not so much for life & death stuff like advanced EC.  The folks above you (cindyrk23) would do well to go to the Cleveland Clinic, as they are also a world class cancer center.  

In 2011 I had a recurrence of my EC.  It had spread to a lung and was therefore stage IV.  As you are undoubtedly aware, stage IV is really bad.  My path out of my death sentence was that I was HER2+++.  I had folfox for 12 rounds and have been getting weeklt herceptin ever since.  The folfox/herceptin killed the cancer and the ongoing herceptin has kept another recurrence at bay.  I'm a medical train wreck (cancer isn't my only medical thing), but I'm alive and doing as well as possible.  It is possible to beat this SOB.  Please be the next ones to do so.

Besr Wishes,

Ed

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello Cindyrk23,

Whether you should consider the Cleveland Clinic for surgery is the smaller issue.  You should certainly be getting a 2nd opinion from somewhere good (Cleveland Clinic is somewhere good).  I've never heard of the James Center, but I've certainly heard of the Cleveland Clinic.  EC is not some minor thing that can be properly dealt with at your local hospital.  EC is major big deal stuff that requires folks who deal with it specifically for a living.  By mathematical definition 50% of hospitals/doctors are below average.  You guys deserve to be with the better ones.  You don't mention chemo as part of your teatment plan.  I'm not a doctor, but I know that chemo goes along with radiation in preparation for surgery.  It's called trimodal therapy.  It's been proven to be the best route to beating EC.  I hope that's an omission on your part, not your doctors'.

Best wishes,

Ed

cindyrk23
Posts: 12
Joined: Feb 2018

Thanks , we are awaiting her2 results . hoping we are her2+ .  Since no mets to liver , doc said not sure about chemo now . Also we are concerned of cardiotoxicity with folfox regimen since one of her parents had this toxicity for CC. we plan to start partial dose if we decide to have chemo and watch for cardiotoxicity and then decide if we have to continue folfox regimen or not . 

PaulT
Posts: 10
Joined: Dec 2017

i would definitely go to the Cleveland Clinic for a Esophagectomy consult. Thanks to Loretta you have great information at your fingertips. According to US News Health Report the Cleveland Clinic is ranked #2 in the nation for this kind of surgery. Really need to look at this as some hospitals may be ranked #1 overall for cancer but may not be in the top 50 when it comes to Esophageal Cancer. Not only would I look into how a hospital ranks nationally for Esophageal cancer I also would be looking for a teaching hospital and a surgeon that does many many esophagectomys a year.

CancerEclipse's picture
CancerEclipse
Posts: 15
Joined: Jan 2018

I'm so sorry to hear about your wife, and so young to deal with this. I don't know anything about your specific clinic or doctor, but from my experience (fought this off for 3 years) I do know it's vital to have a good surgeon who does a lot of these surgeries each year. Check out the Cleveland clinic as an alternative for sure. Life hangs in the balance.

Dave

1979bmg
Posts: 31
Joined: Sep 2017

I am saddened to hear someone younger than me have to deal with this...

Heck I was a truck driver that ate junk food for 10 straight years, not an alcoholic but I drank my share...I sort of deserved it in a way.

 

I agree with deathorglory, try and get into a top notch cancer center like Mayo Clinic, the idiots at one of the local clinics tried to tell me I had heartburn, threw Prilosec at me and barely wanted to look at me.

 

Just some encouragement, you say your wife is young and athletic...don't let this cancer diagnosis keep her from that. I think exercise and fitness is one of the keys to beating this, she already has that and more youth in her favor than pretty much everyone else here.

 

I was diagnosed Stage IV (T3, N2) in August, two tumors in my esophagus, 1 big one right above my stomach, one smaller one in my mid esophagus, with a thin band of tissue connecting the two. My N number probbably should have been a lot higher, as I had at least 8 infected lymph nodes scattered around my torso. I also had a small spot on my liver, so small they couldn't tell what it was. 8 rounds of chemo and it disappeared. I was not even offered radiation due to how widespread it initially was. Surgery may never happen either.

 

Fast forward less than 6 months later and twelve rounds of chemo. No cancer visible in my esophagus, the only thing left that is visible is one infected lymph node in my upper right chest. It has decreased in size by half in all 3 scans since August, and if the progress continues we may be looking at a complete response or remission by mid summer. 

 

My journey is here.

https://csn.cancer.org/node/312093

 

 

 

cindyrk23
Posts: 12
Joined: Feb 2018

Thanks to all for your comments . PET showed small dots on liver , they did biopsy and confirmed it is spread . So surgery is not the option . They are going to start Chemo sometime next week . Port was placed this week . 

GeriR
Posts: 20
Joined: Dec 2017

So very sorry to hear this. I guess if there's any positive about this its that she didn't have surgery and then find out shortly after that it had spread like my husband has experienced.  I pray for a positive outcome for your wife and will keep you in my prayers. 

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

Dear Husband of Cindy (Cindyrk23)

I’ve chosen to answer you on a separate topic forum.  Please see:  https://csn.cancer.org/node/315232

The posting is quite exhaustive and hope that some information I have provided there will inform you even more about the treatment of Esophageal Cancer.  As always, it is devastating to learn that you or a loved one or even a close friend has been diagnosed with cancer.  Please be sure that your wife is getting the very best treatment advice.  Based on the fact that Cleveland Clinic ranks #2 as Paul has stated, and James Hospital ranks #23 should give you pause.  (They don’t rank in Gastroenterology and GI surgeries AT ALL!  Furthermore, I’m unhappy with their “speedy” testing and results.  It isn’t too late for a SECOND opinion.  And as stated in my other letter, not only does Cindy need a medi-port, she also needs a “J” tube to keep her body adequately nourished during the chemotherapy she will be having. 

Don’t be intimidated and shy about getting a second opinion.  Any doctor that expresses displeasure at your wish to have another opinion would be a good enough reason for me to go elsewhere.  (Especially when you read what Mayo Clinic in Rochester, MN said last year!)  It’s your wife and you need the peace of mind to know that you are at the very best possible place to get the latest up-to-date treatment and expert care. 

Sincerely,

Loretta

cindyrk23
Posts: 12
Joined: Feb 2018

Hi All - First , thank you to all who shared inputs and am sorry for not able to frequently share updates. She started with CarboTaxol+ herceptin in mid March. After 2 months , the Primary tumor which is HER2+ shrinked 50% but the Liver spots grew. So we switched to FOLFOX+Herceptin in May. After 2 months , in july both primary ( GE junction ) and liver showed  shrinkage and we felt she is on path to remission but in Sep Scan , the primary tumor is growing back. Doc said cancer develops resistance to Herceptin in 6 months and that could be happening. She was taken off Oxaliplatin in Aug due to suspected delay hyper sensitivity and is on 5FU + Herceptin since mid Aug. Doc is now suggesting 1) Try Ketruda  OR 2) Put back Oxalipalitin & continue 5FU& Herceptin. We opted to try Keytruda. 

Am trying to get second opinion to see if surgery is still an option. In her case , her mets to Liver are exhibiting different charactistics compared to Primary. Her liver mets are not as aggressive as primary , not HER2+ ,  and are responding well to FOLFOX and are now indiscernible. Whereas her primary is very aggressive , HER2+ positive responded only to Herceptin and not for FOLFOX. Her overall state is relative healthy other than chemo induced side effects for few days which goes away after 1 week. There is no spread of cancer to other places. That being said , if we remove the primary tumor by doing surgery , followed by chemo to clear the liver mets , won't be able to extend her survival ? 

To share on her chemo: 

She had reactions for carbotaxol first 3 times during infusions. She was given anti-reaction agents ( benedryl , steriods etc ). She has usual side effects - pain, fatigue , hair loss.

On folfx - she had a mild infusion reaction on 7th infusion. Usual side effects of fatigue , cold neuropathy , loss of appetite which would go away after 1 week. But she later developed Itching which was initially considered as delayed hyper sensitivity and hence they took her off Oxaliplatin and kept only 5FU. But itching is still there so we guessing its due to Herceptin and not oxaliplatin. She aslo had few dizziness episodes and had go to ER to check but all looked good and was advised to hydrate more.

Her swalloing difficulty improved by April ( after 4 weeks of Herceptin) and was able to eat normally until recently. She is not having mild swallowing difficulty which confirms the regrowth of the Primary tumor growth.

I Thank you everyone for your inputs , support and wish you all good luck . 

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