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Just Diagnosed with stage 4 E.C.

mam132
Posts: 20
Joined: Nov 2011

I was seeing a very slight flicker in my left eye and went to an opthamologist who discovered a tumor inside of the eye. I went to the Cleveland Clinic the next day and visited an eye oncologist who confirmed,after several tests,the tumor and stated it was met cancer. The next day they did a complete ct scan they and could find no primary site. I had a previous scan 5 months prior that wasnegative when I was suffering from back and neck pain. Turned out to be a pinched nerve. For some reason they were looking for cancer back then. Anyway, back to Cleveland and a biopsy was performed by the eye oncologist. The biopsy proved that the tumor was cancerous, however could not provide information as to the primary. The Doctor felt this would be learned within three hours. After two weeks, the pathologist reported he could not locate the primary site. In the mean time I met with another Cleveland Clinic oncologist who would treat me with chemo. He stated he would treat me for lung cancer as I had smoked in the past. He advised me that I would not live very long and did not think it was worth any further investigation. This did not sit well with me and I got a second opinion from a local oncologist. She did blood work and suspected the primary site to be in the colon or exophagas. I went though the test and learned that I have E.C. I met with the oncologist who says she does not recommend surgery at this time and is giving me three differnt kinds of chemo. Two by I.V. and one in the form of a pill. My first treatment was yesterday and I feel great today. Im as strong as a bull and have no symptoms such as difficulty swallowing or anything else. The tumor in my esophagas is less than 2" and the one in my eye is less than a quarter inch. Both of my current docs want to be very agressive with chemo before making any decissions about surgery. I have changed this post to make things a little more clear.

mam132
Posts: 20
Joined: Nov 2011

I live in in Northeast Ohio. The tumor is inside the left eye. A test was conducted by Dr. Sighn who is an eye oncologist at the Cleveland Clinic to determine if the tumor is a met, It is. He by the way is a very well respected eye oncologist and has written many books on the treatment of eye cancers. Then I had a biopsy on the tumor that was located in my esophagus. It too was the same cancer and determined to be the primary site. I have been taking previcid for acid reflux for a few years now. I had and still have no symptoms. No swallowing problems as the tumor is small and there is no cancer in my family. The Doctors are confidant that the only cancer I have is in my eye and esophagus. My eye oncologist has said the chemo will destroy the eye cancer and my vision should resume to almost normal. She had a pet scan scheduled however she dicided to cancel it and get my treatment going asap. This was requested by the eye oncologist.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

As much as I hate to say... welcome to this site. You will find it full of helpful and very knowledgeable folks!

Wife of patient...
Posts: 129
Joined: Oct 2011

Welcome,I am glad you found this message board. I agree with Sheri, perhaps another opinon. There is a vast amount of experience within this board. Search for Marshall William's posts, alot of info there. You can expect compassion,understanding, experience and knowledge here. Others will post soon. We have experienced a loss that has broken all of our hearts. Stay Strong, be positive, others will post soon and provide you with support.
Sal

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

I want to write more later, but quickly, there is a very well-known EC doctor and the Cleveland Clinic named Dr. Rice. I'd try to get seen by him.
Cora

mam132
Posts: 20
Joined: Nov 2011

What can this man do? I have been told that they will not operate now and other than the chemo that I am getting, what else is there. I am new to this and am trying to read everything I can get my hands on. Right now I am still feeling good, however after reading some of these comments I don't know what I am in store for.

mam132
Posts: 20
Joined: Nov 2011

What can this man do? I have been told that they will not operate now and other than the chemo that I am getting, what else is there. I am new to this and am trying to read everything I can get my hands on. Right now I am still feeling good, however after reading some of these comments I don't know what I am in store for.

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Hate to say it, but welcome to our home of hell here on earth, mam.
I would get the Dr Rice opinion because you can NEVER have too many choices or options or opinions and also you NEVER ever know what one might offer or know that another doesn't.

Please keep us posted.

God bless,
Eric

mam132
Posts: 20
Joined: Nov 2011

I refuse to be welcome to hell on earth. I do however uderstand what you are saying based on reading these blogs. People are looking for answers that are not there and for hope that in most cases will not be found. I have decided to place my situation in Gods hands and the Doctors that care for me. I will say a prayer for you and your family.

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

your statement of

" I have decided to place my situation in Gods hands and the Doctors that care for me."

confuses me. It makes it sound as though you will not be pursuing other opinions.

It is my belief that God makes intelligent people available to become doctors so they can be available to you for 2nd opinions. God gives us the means to get to those doctors for the 2nd opinions. Wouldn't it make sense to take advantage of God's gift of talented medical professionals for multiple options?

Just my opinion, certainly not meant to offend. I hope you take my words as they are intended - with concern for your health.

Wishing you the very best,

Terry

mam132
Posts: 20
Joined: Nov 2011

As I suspect just as all of you, I have been on the roller coaster ride of my life. I went to the eye doctor expecting to get some drops or something and wound up being told, (by the opthamologist), that I have a tumor inside my eye that was a result of lung cancer. My wife and I were to leave on a cruise in a couple days and just wanted to get me checked out prior to leaving. We were numb and cried the whole way home. I have been a Supervisor for a Sheriff's Office for many years and am running for Sheriff next year, at least I thought. Since then I have been told three times that I will die within 12 to 18 monts based on statistics. I really don't care about statistics and I know they are doing the best they can and they don't really know. But being as healthy as I am this stuff is really hard to take. I didn't mean to sound like I am giving up, that is the farthest from the truth. I will fight this like a mother and talk to everyone I can.

I am really trying to keep my head on straigt. I have been married to the love of my life for 33 years and have two great adult children. I don't want to leave them. So rest assured, i WILL FIGHT THIS LIKE NOT OTHER.

Thanks for your advice.

Mike

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

I was hopeful that I had misundersood. Glad of that.

Give 'er hell, Mike! That's the attitude you will need for this fight. A positive attitude will take you a long ways - both in life and in treatment.

As far as statistics go, you are a statistic of one. Everyone has a unique reaction to the treatment. I hope you have an easy time of it.

We will be here to support you AND your family. We will answer questions to the best of our ability.

Hugs and prayers of strength to you and your family!

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11
Clean Path 09/13/11

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I think I understand what you are saying... you are placing your trust in God (as mom and I do and have done all our lives), and that you are not accepting hell on earth cuz you believe and you are fighting. If that's what you mean, I get it. Mom and I just pray for God's will and that we can accept His will. Nothing more.

That said, we do go from one doc to another. 3 docs confirmed inoperable EC. Ok, so what's the next step? We were given our options and made our choices - chemoradiation for now.

I'm very interested in whatever you find out. My mom is legally blind, and recently started to say that what's left of her eyesight is getting worse. Then I read about EC going to the neck, eyes, and even the brain. Two weeks ago mom told me to call her eye doc to cancel a check-up that was set for the 14th (tomorrow). Something told me not to cancel.

I sorta kinda "reminded" her that she had an eye doc appt tomorrow to which she got very excited and said she told me to cancel it -- that she is too sick to go. I told her she's too sick NOT to go and we are going. I finally had to tell her that I just want to rule out any spreading to the eye.

So, she's resigned to going to the eye doc tomorrow a.m., the Oncologist at 3, the PICC line and chemo bag at 3:30, and her radiation treatment at 6. What a day. She'll be zonked to be sure.

Anyway, Mam - keep us informed of your findings. (My hubby is in law enforcement -- over 35 years - DOJ, Bureau of Investigation - Organized Crime - a veritable cape crusader! ha ha ha!)

mam132
Posts: 20
Joined: Nov 2011

I have now had 4 treatments with I.V. Chemo, 2 types and on the second round of 14 days of the chemo pills. If you want the names I will give them to you. I am doing very well and have had no side effects. I have not lost my hair as they said I would and the vision in my left eye has returned to almost normal. I had a chemo treatment on Wednesday and saw my oncologist who gave me an A++. I am going back to work on Monday. I have cleaned everything that doesn't move and fixed everthing that I could on my house and barn. I am going back to work on Monday. I feel going back to work will help me a great deal. I am still running for Sheriff next year and it's not that I am in a state of denial, I know how serious my condition is. It's just that I have no symptoms of cancer nor any effect from the chemo. Why I have no Idea. Maybe it's to early but the Doctor say's I more than likely won't feeling anything if I have not yet. I am going to my eye oncologist at the end of the month so he can take a measurment of the turmor in the eye. I don't know if it's still there. It was very small to begin with. That is the only met tumor that I had. Had a full CT scan in late October.

What do you guys think? What's next? She wants to do some testing in January. I guess this will tell the story in terms of the cancer spreading. Please advise what I should be doing next.

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

Welcome to this site and you sound like a fighter!!! Good for you. I just went through 3 months of treatment since my mom was diagnosed with Stage 3b EC, and this site has been a godsend. From what I've seen, there's good days and bad days both physically and mentally. With your wife and children, you are very lucky to have great support. Please keep us posted on your progress.

Wpturner05
Posts: 120
Joined: Aug 2011

Mike,

I have read through all of your posts and applaud you for your positive attitude. I promise you, it will make a difference. I would be remiss if I did not say that I am either confused or concerned, maybe both, about your treatment plan to date. Is it my understanding that you are being followed primarily by ocular oncology? Or is your primary oncologist a GI oncologist? You are correct in saying that there are limited options if you are stage IV, but as was mentioned before - if your primary site is GE junction - and indeed adenocarcinma, you should be followed PRIMARILY by a GI oncologist. I hope that my understanding is incorrect and you are receiving all of the proper treatment plans. My guess is that at Cleveland clinic they would send you to the correct oncology group.

I replied in this manner in response to your request on feedback and what to expect. I am not sure we can advise you until we understand a little better. I know it is all dizzying!! It was for all of us too. Unfortunately at this time, many of us have become very wise to the treatments and plans in regards to many stages of this cancer. I wish you well in you treatments. God speed.

We look forward to helping you in any way we can.

Sincerely,
Whitney

oriontj
Posts: 390
Joined: Jul 2009

that it has spread to other organs or lymph nodes. In your case it's your eye. Surgery is usually not done for stage 4 ec. It doesn't mean though a quick end. My husband was staged between 3 and 4. He goes to the U. of Chicago to an ec specialist. Now he was diagnnosed July 2009 and he's still alive. In fact we leave for Vegas tomorrow. We also went to Alaska in June 2010. After a year it came back very small and he's been on chemo for a year now.

He trusted his doctor and so far it's been fine. But stage 4 is a tricky beast. It can go away and come back or never go away at all.

A Pet Scan would let them know if it's anywhere else. It's really important to know this. I can't believe they just said they'd treat you for lung cancer just because you smoked and couldn't determine what type of cancer you had. That's not very encouraging. My husband would be somewhere else.They misdiagnosed my husband but they ordered more tests and found out exactly what it was. They never just guessed what kind it was. They found out.

You do need another opinion just because of what they did in the beginning. You are of course a statistic of one. Everyone is different and reacts differently to their treatment.

Reading everything you can has it's good points and bad points. I'd say people here know about what happenings with this disease, the web just tells symptoms and stats.

Get another opinion.

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Mike, I'm very happy to hear that your eyesight has improved and that you are tolerating the chemo well. It's great that you are a fighter and making plans for the future. I'm a little unclear and concerned on a couple of issues. I hope you didn't mean that you have finished with chemo already. Less than one month of chemo for cancer that has metastasized can't be right. My husband was diagnosed with Stage IV EC June 21. He just finished his 6th round of chemo (which he has tolerated very well, also) and is scheduled to start the 7th round on Tuesday. If you are still continuing with chemo, I would certainly ask (insist) that your oncologist order a PET scan along with the CT in January. That way they can see if there is any evidence of the cancer in lymph nodes or other organs.
Angie

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

I am also so glad to hear that you are feeling so well and returning to work...... But, like Angie (above) mentioned, 3 weeks of chemo sounds incorrect for EC. If you could please tell us which drugs you were on, and the schedule you had for them, perhaps our advice could be a bit more informative.

Most people on here seem to be on a similar schedule to what my husband was on. He was stage ivb, EC with mets to the liver at diagnoses. Each round consisted of 2 iv chemos, Cisplatin and Eprirubicin (on the same day) followed by 2 weeks of pills, Capecitabine, then a week off. This was repeated 4 times, lasting over 3 months. Many people do even more than 4 rounds, which would of course be at your doctor's discretion. This seems to be a pretty standard cocktail, and the fact that you are finished your chemo after only 3 weeks is a bit worrisome. In my many months of posting here, I do not recall reading anyone's story that completed chemo in that short a period of time. I don't want to alarm you, but I really hope that you fill us in on your treatment plan, and also talk to your oc about it. It just does not sound right.

I seem to have missed this thread until this morning, and am also going to take this time to 'welcome' you to our little family. I find so much love and support here, and I hope you are able to as well, as your journey continues.

be well,
Chantal

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

WOW old post with new info today...

I would NOT want them to GUESS what I should be taking to stay alive with my palliative care, why anything else?

GUESS??? WORK, not guess.

More input!!
WHOA!

Eric

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Mike,
I am sorry for what you have been going through. Hearing those words --- you have cancer is a life altering moment.

I must be blunt, however, I do not understand if your cancer is Esophageal Cancer and the primary site of the cancer is in the Esophagus why you are being treated by an eye oncologist. Esophageal Cancer is rare and many doctors are not familiar with the protocols for treatment --- and in your post it appears that your treatment is focused on the eye tumor and when you said she wants to check you in January sent chills up my spine.

You have cancer in your esophagus --- and you need treatment for that and it should not wait even though you have no symptoms because the esophageal cancer has already started spreading to other parts of your body. As Chatal said --- a 3 to 4 week course of chemo is not the standard of care for Esophageal Cancer and most certainly you should have had scans to evaluate what is going on in your esophagus and other parts of your body. Perhaps we misunderstand your post but it sounds like the treatment has solely focused on your eye and not the rest of you.

It sounds like you should really check into a second opinion --- having faith is important and having confidence in your doctors is important too --- but you can have trust and faith, but you should independently verify the information is correct. The old Reagan saying "Trust but Verify". Anyway you are indeed fortunate that the chemo has not had a really bad effect on you but again for EC patients they use the really big guns because it is such an aggressive cancer and we don't know what chemo they administered to you or the dosages.
Good luck and keep us posted.

Best,
Cindy

mam132
Posts: 20
Joined: Nov 2011

I do have two oncologists. One for the eye and one for upper G.I. I got rid of the oncologist that was going to treat me for lung cancer. He wanted to do no further testing and advised me I had a short time to live. He told me to tell my adult children that I was going to die and that's what I did. Since then I have a new Doctor and she is working very well with me. Maybe I didn't explain myself, I know that I may go through many rounds of chemo. She has me scheduled for three rounds now. She will then do further testing to determine what my next move would be. I also must visit the eye oncologist for measurment of the turmor if there is any left. I just wondered what you guys thought about my treatment so far. Like I say I am feeling wonderful. I am going to stay positive as I know of no other way to be. I have done this my whole life and have been extremely sucessful and reufuse to stop because of this. I will live life to the fullest one day at a time and go from there.

Wpturner05
Posts: 120
Joined: Aug 2011

Mike,
So glad I am clear. YOU GO!!! Stay in the positive. This EC road can be difficult and a strong positive attitude will do wonders. I am happy you seem to be getting a good plan and enjoying life.

Sincerely,

Whitney

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Hi, I think you have us all confused here...... are you still taking chemo treatment? It seemed by your last post that you were done, and returning to work, which is why we all replied with the "3 weeks is not enough chemo" Now this post sounds like you are still receiving treatment......

Could you please clarify for us so that we can understand what you are going through? Also if you tell us the names of your chemo drugs, that would be a great help as well. It's hard to answer your question about how we think your treatment is going so far without more information.

Glad you are feeling great! Hope it stays that way
Chantal

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Mike,

I know it seems like we are a terribly nosy group of *strangers*, but! We ask our questions from understanding the path.

Is the 3 week chemo then reevaulate maybe a "let's see how current chemo has done before we decide which chemo "cocktail" to use next"? Has the doctor laid out a treatment plan for you that you might share with us?

We have many (too many) here with Stage IV experience. I know they are wishing to help, but really do need clear understanding of the treatment plan set out by your oncologist. There is likely to be someone here that has traveled that exact path before you. That shared experience and the ability to make use of the knowledge they gained during their EC journey is invaluable.

Keep the positive thoughts strong! Keep planning for the future! Keep us in mind for the days you need to ask for a hand or wish to share a victory moment.

Love & Hugs!

Terry

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