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Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Hello to All~

I have been reading posts for about a month, ever since my dad was diagnosed with what I think is stage 4 EC. This has been a little hard for me to talk about because I know the path we are on, and because we lost my mom a little less than a year ago so the thought of losing my dad is tough.

Ok, here is his story.

My dad will be 70 on March 27 of this year. He is not overweight, is active and takes pretty good care of himself. He had prostate cancer a little over 10 years ago. The prostate was removed and he had no need for further treatment. 2012 was particularly tough in our home with mom and she passed away on April 27. It was around September when he started to feel a little irritation down close to his abdomen but he thought it was because he was eating a little too much, so he cut his meal portions down. He didn't tell me anything about it until he went to the doctor in October. His doctor wanted him to go for a stress test but my dad thought that was crazy because he is physically active and he wasn't having chest pain, it was lower. The doctor referred him to a gastroenterologist. In December, he saw the gastro and he thought it could be a hiatal hernia and they scheduled an appointment for an endoscopy a little over a month later. We went on a Wednesday, and when the doctor called me in to his office, I knew it wasn't good. Things went very fast after that, which was great for dad because he is always saying "if you gotta do something, just get up and do it, none of this lollygagging around." Smile The very next day (Thurs) he had the EUS with biopsy and the day after that, a CT Scan. By Monday we had the follow up appointment with the doctor and met with the oncologist on Wednesday. The following Tuesday he had a port put in and the following Monday he had his first chemo treatment.

So here are the results and where the uncertainty of staging and treatment comes in. EUS stages him T3N2Mx. I think the Mx means mestastases cannot be determined at that time. It also showed the liver to be clear and a possible lesion on the spleen. The CT scan however, revealed multiple lesions on the liver but does not mention the spleen and both indicated metastatic lymphadenopathy. The EUS also states it has invaded the MP and is moderate to poorly differentiated and ulcerated. The oncologist said to him "we can't cure you, but we can fix what we can." I am not sure what that means, and he never told us what the stage was, I had to get the reports and read them myself, and stage it after researching how. I realized once they located it in the liver, it was stage 4. The doctor said he is not a candidate for surgery and that he would be treated with chemotherapy only. Now my dad seems happy with the treatment plan and with the doctor and I know this is important, but as far as I know, my dad is not aware of the lymph node involvement. The oncologist never said it and I only know from the reports and I am afraid to tell him because he is content with the information we have and I think he has put his trust in the oncologist, he likes him and that is a big thing. I don't want to make it seem like the doctor is a bad guy, I don't think he is and the truth is, the questions I have I don't really want to know the answers to. I don't think I can handle the answers and like I said, dad seems happy and is approaching the situation with a positive outlook and has said he doesn't think he needs to see someone else. He has been able to eat just about everything and swears that he can swallow better because of the chemo and I am not about to put a kink in that thinking. Something important to know about this is the oncologist is also treating another family member for stage 4 stomach cancer and it has been 2 1/2 years since his diagnosis. It's tough to see them together.

I guess I am just wondering why only chemo. The recommendation from the gastro and the doctor who did the EUS was neoadjuvent therapy but our oncologist said that was not for my dad.  Is it not for him in a negative way, or does the doctor believe this is all my dad needs to help him? He is getting a combination of 5-FU and Oxaliplatin every other week, coming home with one of them in a pump for two days. I know the doctor is the only one to answer all the questions I have but I am just curious about what insight you may have. I do believe that we shouldn't look at statistics because ultimately they do not tell the whole story and besides, I believe in the power of prayer and positive thinking. Innocent

Wishing you all the best on your life's journey,

Theresa

Ladylacy
Posts: 515
Joined: Apr 2012

So sorry to hear about your father.  When the oncologist said they couldn't cure your dad's cancer, it means that they can only prolong his life.  My husband is going thru this right now.  First he was diagnosed with laryngeal cancer in 2010, radiation, chemo and then surgery.  In 2012 he was diagnosed with cancer of the cervical of the esophagus (rare we were told) and surgery was out due to location and previous radiation treatment.  Told only radiation again and chemo since the tumor was small and no spread was seen.  So he underwent another 35 radiation and 7 chemo which ended 7/2/12.  In September he had a PET/CT scan which showed some light up in the same spot.  But specialist thought that was due to the radiation.  In October he had a dilation of his throat and the doctor went all the way down his esophagus into his stomach and said everything was clear.  Nothing to biopsy.  In late January he had a follow up PET/CT.  Well needless to say there was a recurrence at the same spot -- cervical of the esophagus -- but there was also something in his lung which required a needle biopsy.  Cancer had spread to the lung so surgery was out.  Chemo is the only thing offered at this stage.  Tumor in esophagus is large and the doctor went thru it when he was dilating my husband's throat and was trying to do a biopsy.  The esophagus is very narrow and he wasn't able to do anything else.

My husband has elected no more treatment since the chemo will only prolong not cure and could possibly hasten.  He is 76 and did quite well with his previous treatments and the doctors were surprised at how well he did.  But, I can see the changes in him and I agree with my husband as to no more treatments.  He has elected quality over quantity of time.  It is hard, don't get me wrong.   Right now my husband is doing well with minimal pain medication and that is for pain in his right shoulder.   He still goes to the store and works in the yard when the weather is nice. 

Wishing the best for your father and you, but please know that EC cancer is one of the hardest to cure.  I lost an aunt several years ago to EC and she fought it hard for 3 1/2 years and then said enough is enough.  She was only 73. 

Sharon

 

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Hello Sharon,

Thank you for taking the time to respond to my post. I appreciate you sharing your husbands history and everything you have said because it is important to be mindful of the possibilities ahead. I am so very sorry to hear of the place your husband is in now. I can't believe what he has faced these past years and the choice he had to make. I can picture your husband doing the same things my dad does, and it saddens me that they are both in this place. I hope that you and your husband have more time full of life than you expect and lots of love and laughter to fill the days.

Theresa

 

 

Dad'sfight
Posts: 155
Joined: Feb 2013

I know how your feeling, my father at the age of 55 was dx T3N1MO in Septemeber.  I still haven't made peace with it.  In the beginning my father was so positive, he too loves his doctors. Like you I was reading all the reports, researching on the internet, and started to believe that he was given false hope in a sense.  I chose not to dive into the details with him, I thought it was best for him to have the "positive" attitude to make it through the chemo/radiation. He did that for 6 1/2 weeks, 5FU was given to him in a pump 5 days a week, and he went in every Monday for 2 other types of chemo.  His radiation was also 5 days a week, but he did it with such strength. He never had to stop and wait for Blood counts to improve, he made it straight through. I truely believe the positive spirit he had played a big role in that.

However, even though we were told in the beginning he wasn't a great canidate for surgery he was ok with that.  I believe he thought that if he got through the chemo/radiation and it worked the hard part would be over. He definently knew the chance of re-occurance but he really thought if it worked he had a good chance. So we had another pet done 2/20/13 and scope with biopsies. The biopsies come back clean, pet scan showed a complete response, he was SO HAPPY!!! Then he's crushed because he then realizes it got him some "bonus time" as they call it.  Don't get me wrong we are so thankful he responded, the oncologist said out of his 10 years he has only had 2 patients respond, my father being the 3rd. However, he said in the other 2 it did come back. He said best chance of survival is surgery, so now we're in a constant battle trying to figure out if he should do the surgery, who's going to do the surgery and can we get him well enough for the surgery. (You can check out our journey on my home page)  If I had to do it over again, I would have done the same thing. If I would have given him the details I don't believe he would have responded well to chemo. So with that in mind, I guess that's maybe why they don't do details in the beginning.

Now that reality has set in, he is having a very difficult time.  To see him struggling the way he is now with this is heart breaking. However, I know that if his mental state was how it is now when he was doing chemo/radiation it would have been a struggle for him.

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Thank you so much for sharing your dad's story with me and for the encouraging words. I am happy to hear he responded, it gives me hope! I am going to look at your home page and I will keep up with your posts. I wish the best to you and your dad and hope he is one of the small percentage that beats the odds. That is the only attention I pay to the numbers, as long as there is a chance of sneaking through that door, I keep my foot in it.

Thank you agian for your insight.

Theresa

 

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

Hi Theresa, My story is a different. I was diagnosed with Stage IIIB esophagus cancer. Had a 2.5 x 2.5 cm tumor, 2 nodes in my chest and 2 behind my stomach that I was told were also cancerous (no biopsy). I was told that because the nodes/tumor were spread apart so much that I wasn't a candidate for surgery or radiation. So I had chemo only, 4 treatments every 3 weeks of 3 different chemos ( see my profile ). One was 24/7 from 4/27/12 to 7/19/12, except for 1 week my platelets were too low. My CT scan around 7/19 was cancer free. I've had another CT scan and a PET scan, all cancer free. Last week I had biopsies on my esophagus and liver, all cancer free.

I have no idea what God has planned for my future, but my results til now have been great ! I have fatigue and significant neuropathy in my legs that limits my walking but a small price to pay for being alive and reasonably healthy. In the beginning, I was told that I could have as little as 4 months to live. That was 11 months ago ! SO don't give up too soon ! 

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

First of all, WOW!!! That is such great news and I hope and pray beyond words that you stay cancer free.

I am so happy you wrote to me. Just last night I had read a post of yours and thought your situaiton seemed similar to my dads. Thank you for the encouraging words about chemo. It makes a bit more sense to me now why chemo and no radiation. My dad's nodes are numerous (at least 7) and spread out as well (pretracheal, periaortic, periesophageal and celiac nodes). As far as I can tell the celiac node was the only one biopsied and it was cancerous.

I know my dad was floored by the diagnosis of cancer and I am grateful for your insight and cautiously encouraged by your success. I will take the info and pass it along to him. I think you said on your profile something like through this you  have learned there are varied situations, varied treatments and varied outcomes, and that I see now is true. I am glad there are places like this to see the good and the bad so we can learn how to best address what is happening.

All the best to you along your journey.

Theresa

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Theresa, I was  T3N2M0 in Nov. '04. I had the chemo-no radiation and the Iv Lewis surgery in May '08. I am considered cured now that I am 5 yrs. out. If your dad is a candidate for surgery, it is the best thing to do. As you read the other post, you can see no two cases are alike. We all react to treatment differently. It is a very hard journey, and it's hard for me to look back and see the bad, now that my life is so good. So thankful for the ones that react to treatment so positively.

Prayers are with You and dad--Cancer effects the whole family and we all need the strenth to take each day and live it to the fullest.

Sandra

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

Thanks so much for your post Sandra ! I'm still a relative newcomer to this cancer watch thing and am guardily optimistic. It's so good to hear from someone that's a "long term" survivor. My doctor has told me that if I make it through 2 years of quarterly NED scans, alternating between PET and CT scans, he will consider me to be cured ! He adds there's always a slightly increased chance for recurrence after that. Lots of Prayers and very religious doctors and my own religion has helped me through all this.

Jon

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Sandra,

You are considered cured! That is amazing news. I have read how differently people respond to treatment and I guess that is the reason why cancer is difficult to get ahead of...but you did! I don't think dad is a candidate for surgery right now but I know that removing the source is beneficial. We'll see how my dad's situation goes. Thank you for taking the time to write your encouraging words and I wish you the very best! 

Theresa

tclem
Posts: 22
Joined: Nov 2011

So glad to hear that things are going well for you.  I will keep you in my thoughts  and prayers that you continue to make good progress.

Tracy

HarleyDog's picture
HarleyDog
Posts: 13
Joined: Feb 2013

Hello. My wife, who is 55 yrs old, was told December 1st that she is stage IV. In the beginning they did a CT Scan and saw cancer in her ovaries, a large tumor by her liver, clusters in her intestines and elsewhere. They called it undifferented as well. No surgery, just chemo and we started it right away. We did 3 days straight and about 4 to 5 hours at a time. When they did her port, the surgeon requested from the insurance company to do a scope at the same time, and we found the origin, a large  amount of cancer. The source was found. We have since done a total of four rounds of chemo, blood transfusions and numerous times for fluid infusion. She is now down from 125 lbs to the mid 90's. We did her fourth ct scan on the 8th, and we have been told there is improvement in shrinking the cancer. We will start round 5 of chemo on the 18th of March. Early December they said 6 weeks for her, and it is now mid March. She is a fighter and we will not give in to this cancer. I hope your Father fights and things go well for him. 

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Dad is not ready to go anywhere yet so the fight is on!! I am very happy to hear your wife is seeing improvement, I hope that she will continue to see improvements. Is she able to eat? I wish I could bring her soup or something. Soup makes everything better. It is just amazing to me how treatments are different for everyone but then again, we are all unique and so is our disease path. I know stage 4 is grave when you first hear it but there is still hope. That is how I see it, this thing is not going to take my dad without a fight from me and my dad.

HarleyDog's picture
HarleyDog
Posts: 13
Joined: Feb 2013

I only wish I could take you up on the soup. In the 36 years we have been married I never cooked, and now, well I have a long ways to go. I tell her it is good she can't taste much! 

Today she had her eyes tested as she could not see very well. We were told that the chemo is causing blindness in her left eye. We will tell the Doctor on Monday when we go back for thenext round of chemo.

Keep fighting the fight!

 

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Oh my goodness! I feel so sorry that your wife is having trouble with her sight. Isn't the cancer enough for her to deal with? I will be thinking about her and I hope this doesn't set her back.

I wanted to tell you that I always liked to make soup but couldn't really cook. I think the only reason why things are coming together now is that my mom is giving help from heaven. She passed away almost a year ago and has been helping me ever since.

Theresa : )

KYsis's picture
KYsis
Posts: 5
Joined: Mar 2013

If no one has told you lately, you are a wonderful daughter and care giver... I can't begin to advise you about your dad's trmnts...but with a daughter like you caring and loving him, that's the best medicine he needs. Care and love were so instrumental in my recovery....I was like your dad, I didn't need to know everything during and post my treatments, the importance was, lets get this mission started and I just hung on tight to my family and for once in my life, I put my faith in my Doctors and nurses...and I put my life in Gods hands!  Now 6 years later, l am healthy, have remained "C" free, and now I can devote my life to caring for others...God blesses you for such a great dad and I know he is watching over your dad, cause he gave him an angel like you!!!  Reach out to any of us if we can help you through this difficult time...

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Thank you for your kind words. I am encouraged by your story and have great respect for you and the choice you made to help those in need. I think about that as well. I feel like there is more for me to do. Thank you so much for your words of support.  : )

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hi Theresa and welcome to you and your dad. Welcome to our family! I too was a caregiver for my dad. I also agree with the others that you are such

a blessing to your dad and your family. We both helped our dads along the way of this journey with EC. A little bit of my dads story: He was dx in 11/08

with stage IV EC. His tumor was at the junction of his esophagus and stomach. He too was not a candidate for surgery. He had had bypass surgery

in 94. My dad was also not mentally prepared to receive and survive a surgery. We knew that. You have to learn to go with your gut feelings. My dad

had 6 weeks of oral chemo and radiation. He actually did quite well. His pet scan after treatment did show shrinkage of the tumor. Following his

treatments he still experienced trouble swallowing. Dr suggested he get a dilation done. We had this done and that dr. told us the chemo and

radiation gave him so much scar tissue, that it was hard for her to do the dilation. She did the best she could to make it open more. This did work for

awhile. Dad did celebrate his first year in remission!!! This was 11/09. By December Dad was very fatigued, was having a lot of pain in his right side,

still having some trouble swallowing. Back to the dr we go! Now think of this...Dad's mental state is slowly declining. It all takes such a toll on the persons

body and quality of life. Dr says he thinks it is dad's gallbladder. Sends us for an ultrasound. Dad is getting soooo tired of having to go go go to the drs, as

you well know I am sure. They do an ultra sound, Dad later tells me how painful it was, but he never made a sound during the procedure. They contact

his dr. right away, Dr contacts me right away.....Your father has to be admitted to the hospital right away! He has muliple lesions on his liver! Oh my Gosh, I say to myselt...now what?

how am I going to tell Dad this? Dear God, please help me! I tell Dad, he says..ok but first I have to go pick up my truck and go to hardware store to get those

replacement bulbs for the lights over the sink in the kitchen. They have been driving your mother crazy. Really Dad? Ok, if you say so! Got to love my dad!

Long long story short...I hope...Dad spent a week in hospital, had a stent put in his esophagus and a stent put in his bile duct of his liver. Came home

just before Christmas. The next three months were downhill. No quality of life. Always in pain. Always having to take pain meds. Morphine sent my

dad over the edge. To be honest, he was blessed to pass away peacefully at home on March 9 2010 in the arms of my mom, brother, and nephew.

 

Phew! hope I have not overwhelmed you with my story. I hope I have been able to help you from my experience. Know that you will always

be Daddy's Little Girl. Like I said, it is best to go with your gut feelings. Let your dad make the decisions. It is his choice. Please keep

coming here to lean on us. We are always here for you. We are a family. Stay in touch and peace be with you all.

Tina in Va

 

tclem
Posts: 22
Joined: Nov 2011

First, my thoughts are with your Dad.   Seems like we are both in the same unsteady boat.  My 62 yr old father was diagnosed with Stage 4 EC in October, 2011.  He is also a fighter and while some days are harder than others, he's not ready to throw in the towel yet.   Each dr. is different with regard to their approach so it is good that your dad has to you be another sounding board.  Don't hesitate to be the bad guy.  I'm the one that goes in there and ruffles feathers when needed.  Because my dad's tumor at the esophagus was so large in the beginning, they wanted to radiate first to try and shrink it.  They might look into radiation for your dad after he has had a few rounds of chemo to knock some of the cancer back and if it works, he might not need it at all.

I wish you all the best on this journey.  I'm sorry you have to take this trip but your Dad is so lucky to have your strength and knowledge to help him through it.  I'll keep you both in my thoughts and prayers.  If you ever need a sounding board or just to vent, feel free to contact me.

 

Tracy

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