Pet results, stage 3 ?? NO surgery.... Doctor does not like and husband does not want!

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Comments

  • chemosmoker
    chemosmoker Member Posts: 501
    BMGky said:

    The opportunity for surgery is a privilege!
    What Paul has to say is right on target. He was a great help to my husband with his kind support as my husband was recovering from an IL esophagectomy.

    Granted, be it an IL or an MIE form of surgery following chemo and radiation, it is not for the faint of heart. His oncologist informed him that the treatment is brutual and some cannot finish it. An MIE does not have all the problems an IL surgery does. Husband had quite a few issues; HOWEVER, he is 18 months post op and last scan showed no evidence of disease!! Woo! Hoo!

    He continues to practice everyday. Was at the opening day of a nearby racetrack yesterday. Is planning our annual visit with our grandchildren to Disney World; his second since the operation.

    Does he still have the dumping events? Sure. But it's because he doesn't follow the eating recommendations of frequently, slowly, and chew, chew, hew. Went to the State Fair, and he ate polish sausages, pork chops, ice cream--not a problem.

    We had our annual physical recently, and except for a slight anemia that is improving, his results are better than mine!

    There are so many on this board who would love to be given the opportunity to try. Their door was shut on them even before they reached to open it. They almost considered not doing surgery on my husband due to prior medical history and age. When they decided to, I told him we owed it to all the other "senior in age only" citizens to give it our very best because if he is successul, it may open the door for others to be given the opportunity for surgery.

    The post-op period had a lot of recovery issues. It took some seven months for him to feel like he was normal again. [He was hospitalized a month following his surgery and had to be hospitalized twice during his treatment] Small price to pay. Right now, he's outside on this gorgeous fall day, riding his beloved John Deere rider mower, happily mowing leaves and whatever else gets in his way, enjoying the changing fall colors, and the flowers he has so carefully watered and tended since I'm somewhat remiss on taking care of my plants.

    My reason for posting is that I felt like you had been given no hope for a normal life after surgery, and that is not the case in many instances.
    Yet, it is an arduous journey with great risks and a long haul back up the hill to functionality. Also, I don't know just what is your actual staging, medical needs, etc. All of this information is very important to your decision.

    So, best of luck to you. I pray you are content with your decision and that your family is comforted by what you decided. I just didn't want you to think that there is no life after surgery. BMG

    Beautifully said!
    BMG-

    BEAUTIFUL post. ALL of it was So very well said.
    Amen, and amen.
    Thank you for giving to others as you always do, yet again.

    -Eric
  • JimboC
    JimboC Member Posts: 264
    Just to add my experience
    In February I was diagnosed with an 8cm tumor which was T3N1M0. I was presented with an Ivor Lewis surgical option with pre-op and post-op chemo. After some research, I decided to forgo the Ivor Lewis open surgical procedure in favor of the Minimally Invasive Esophagectomy which I had performed in Pittsburgh at UPMC by the incredibly talented team of Dr. Luketich's. Before that I had 9 weeks (3 rounds) of what my chemo nurses said was the roughest chemo regamine they give. I worked 8 of those 9 weeks and actually could have worked all the way through but I decided that in the event I didn't make it, I wanted to spend those last weeks with my family.

    Surgery was July 1st and I was out of the hospital after 7 days even though I had some complications. Most get out in 5 days. I was up and mobile the whole time. Sore as heck sure but I always said I'd rather die on my feet that waiting for it to happen.

    After surgery, I had another 9 weeks of chemo which I am just finishing. I am 3 months and 1 week out from surgery. Since surgery, I have been on 3 camping trips with my family and planning some day trips with my wife over the next few weeks before I return to work next month. My first camping trip was about 6 weeks after surgery. And I did all the work setting up the RV at the campsite. I actually had to wait until just now to reply to this because I was at the campground last night and the wireless wouldn't stay connected so I could reply there.

    My eating has taken some getting used to but I'll be honest, I am healthier than I ever have been. Before surgery I was about pre-diabetic. Since surgery, I have lost weight and now have that completely under control. My eating would be better but the chemo has caused some mild nausea with the post-op rounds.

    Some of my family mentioned concerns about what I would be giving up after surgery. I told them I would rather give up everything in order to get to spend more time with them. I was prepared for the worst after surgery and have found it not to be too bad at all. I ended up with the best of both worlds. I got my time with my family and the changes haven't been too bad. And, they get better every day.

    I fully respect your husband's decision not to fight. It is a rough fight and the stats are dismal. Whenever I would get down, I would take inspiration from the many Stage IVs here on the site. I would think here I am with a chance to fight this and what many of them would give for that chance to fight. I felt I dishonored them if I didn't do everything I could. That and a lot of prayer. I did take a lot of comfort in my faith.

    Shoot, right now, even after all of this, I have a 36% chance of a 5 year survival. My oncologist tells me with my progress, attitude and they way I have handled my treatment, he feels I am on the upper end of the 36%. I'll tell you this though, had I done nothing, my chances were a little closer to 0% which makes 36% look pretty darn good.
  • sandy1943
    sandy1943 Member Posts: 824
    Hi Sal, Your husbands
    Hi Sal, Your husbands doctors would scare me. I would definately get a second opinion.

    When I was diagnosed in nov. 2007, I thought I had been given a death sentence. I didn't find this site, and all I did find were stats that were all glum.

    I was staged T3N1Mo. The doctor ordered chemo (no radiation) and the Ivor Lewis surgery. I didn't know anything about the MIE. The chemo was rough, but mild compared to what some others experience. I had the surgery in May 2008. There were a couple of complications, but I think I did well. It took several months to feel near normal again. I lost 99 pds. I have gained 14 pds back and I'm healthier than before cancer. I was considered diabetic-on medication, and had high blood pressure. I don't have either of these now.

    Today, I eat anything I want. I've had to learn to eat smaller amounts, slow and chew,chew, chew. I do have a problem with whats left of the esophagus wanting to close, so I have to be dialated every once in a while. The doctor has said that it might keep recurring. This does not happen with everyone. We all have to sleep elevated to keep down reflux and I take medicine for reflux also.I do have a problem with diarhea sometimes, but it doesn't control my life , I'm dealing with it.

    I have tried to be honest. Is the treatment and surgery worth what I have today? Oh Yes! These are small life changes compared to what could have been. Life is a gift and it is beautiful.It was a rough road, but it was so worth fighting for.

    I am planning my 50th wedding anniverary celebration in Feb. I didn't think it would ever happen. We have eight grandchildren, that I so enjoy. We now have two great grands, that I wouldn't have known if I hadn't had the surgery.

    I am cancer free today. If I do have a reoccrence and it is terminal, I might choose quality over quanity. I don't know, but I would seek help from my friends on this site. They're the ones with the encouraging answers.

    We do not have any quarantees in life, but I'm so happy for the extra time I have had to enjoy it. Life has so much more meaning than it did before. I thank God I was stage 3 and had the chance with surgery. There's too many that don't have the chance.

    Please, show your husband my post and some of the others post. Life is worth fighting for,and I thank God He gave me the chance,
    Sandra
  • chemosmoker
    chemosmoker Member Posts: 501
    sandy1943 said:

    Hi Sal, Your husbands
    Hi Sal, Your husbands doctors would scare me. I would definately get a second opinion.

    When I was diagnosed in nov. 2007, I thought I had been given a death sentence. I didn't find this site, and all I did find were stats that were all glum.

    I was staged T3N1Mo. The doctor ordered chemo (no radiation) and the Ivor Lewis surgery. I didn't know anything about the MIE. The chemo was rough, but mild compared to what some others experience. I had the surgery in May 2008. There were a couple of complications, but I think I did well. It took several months to feel near normal again. I lost 99 pds. I have gained 14 pds back and I'm healthier than before cancer. I was considered diabetic-on medication, and had high blood pressure. I don't have either of these now.

    Today, I eat anything I want. I've had to learn to eat smaller amounts, slow and chew,chew, chew. I do have a problem with whats left of the esophagus wanting to close, so I have to be dialated every once in a while. The doctor has said that it might keep recurring. This does not happen with everyone. We all have to sleep elevated to keep down reflux and I take medicine for reflux also.I do have a problem with diarhea sometimes, but it doesn't control my life , I'm dealing with it.

    I have tried to be honest. Is the treatment and surgery worth what I have today? Oh Yes! These are small life changes compared to what could have been. Life is a gift and it is beautiful.It was a rough road, but it was so worth fighting for.

    I am planning my 50th wedding anniverary celebration in Feb. I didn't think it would ever happen. We have eight grandchildren, that I so enjoy. We now have two great grands, that I wouldn't have known if I hadn't had the surgery.

    I am cancer free today. If I do have a reoccrence and it is terminal, I might choose quality over quanity. I don't know, but I would seek help from my friends on this site. They're the ones with the encouraging answers.

    We do not have any quarantees in life, but I'm so happy for the extra time I have had to enjoy it. Life has so much more meaning than it did before. I thank God I was stage 3 and had the chance with surgery. There's too many that don't have the chance.

    Please, show your husband my post and some of the others post. Life is worth fighting for,and I thank God He gave me the chance,
    Sandra

    BEAUTIFULLY WRITTEN, SANDRA, JIMBO, EVERYONE!
    Sandra, Jimbo, Everyone,
    THOSE were such beautifully written posts. They really moved me. I have even read your stories before in other posts or maybe your about me pages? But hearing it there, the way you both worded them, so "from the heart", such an encouraging posts that I think ANYONE facing surgery should read them!

    I still have my feeling and opinions. Faced with the same odds, I would chose what I have chosen, for very personal reasons. THAT is why it is so important for all of us to share and for people to be given ALL the different perspectives and options, so one that will more closely relate to their feelings and wishes will offer them the most help!
    Like I heard years ago about posts and writings and opinions; Take what you can use, and leave the rest for others. I think that sums it up well.

    I just wanted to post a note after reading those posts and say THANK YOU.
    God bless you ALL,
    -Eric
  • TerryV
    TerryV Member Posts: 887
    Just a bit of info provided by our surgeon
    Sal,

    I fully respect everyone's right to make *informed* choices. As I also respect the comments of those made by others here in the thread. Everyone has very valid points.

    I was initially aghast at the complexity of the surgery. And it isn't a small surgery. But a few things that our surgeon said have stuck with me.

    * After completing a full radiation & chemo treatment plan, the surgery is a minor inconvenience compared to the rad/chem treatment.

    * 15% of those that complete a full treatment consisting of radiation, chemo & surgery will have reoccurance.

    * 85% of those comleting radiation & chemo, but not electing surgery, will have reoccurance.

    I would have to agree with the 1st point. Today is my husband's 1 month anniversary of his surgery. He feels well, participates in family outings, is finding balance with his "new & improved" but smaller stomach. He is more "himself" now than he was during the radiation & chemo.

    And to add to the number of "unspoken survivors", my boss' father is a 15 year survivor of Stage II EC. He had radiation, no chemo, and had an Ivor Lewis surgery. He has NO regrets.

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

    We too have NO regrets.
  • JimboC
    JimboC Member Posts: 264

    BEAUTIFULLY WRITTEN, SANDRA, JIMBO, EVERYONE!
    Sandra, Jimbo, Everyone,
    THOSE were such beautifully written posts. They really moved me. I have even read your stories before in other posts or maybe your about me pages? But hearing it there, the way you both worded them, so "from the heart", such an encouraging posts that I think ANYONE facing surgery should read them!

    I still have my feeling and opinions. Faced with the same odds, I would chose what I have chosen, for very personal reasons. THAT is why it is so important for all of us to share and for people to be given ALL the different perspectives and options, so one that will more closely relate to their feelings and wishes will offer them the most help!
    Like I heard years ago about posts and writings and opinions; Take what you can use, and leave the rest for others. I think that sums it up well.

    I just wanted to post a note after reading those posts and say THANK YOU.
    God bless you ALL,
    -Eric

    Thank you Eric
    You summed up this community so well just as you do all topics. The strength of this community comes from the fact that everyone's journey with this disease is so different. And most importantly, it is their own. I respect everyone for how they deal with this horrible disease. There are no right or wrong ways, just information.
  • BEAUTIFULLY WRITTEN, SANDRA, JIMBO, EVERYONE!
    Sandra, Jimbo, Everyone,
    THOSE were such beautifully written posts. They really moved me. I have even read your stories before in other posts or maybe your about me pages? But hearing it there, the way you both worded them, so "from the heart", such an encouraging posts that I think ANYONE facing surgery should read them!

    I still have my feeling and opinions. Faced with the same odds, I would chose what I have chosen, for very personal reasons. THAT is why it is so important for all of us to share and for people to be given ALL the different perspectives and options, so one that will more closely relate to their feelings and wishes will offer them the most help!
    Like I heard years ago about posts and writings and opinions; Take what you can use, and leave the rest for others. I think that sums it up well.

    I just wanted to post a note after reading those posts and say THANK YOU.
    God bless you ALL,
    -Eric

    Michelle, Eric, Sandra, Terry the whole lot of you! You too Jim
    Thank you! Such amazing and beautiful posts.

    Choices,it is all about choices (informed).... and information. You guys amaze me. Please know I have read every post on this page. I so much appreicate you encouragement,your words of wisdom and support. Michelle, I am glad you’re posting.
  • Gatoraid
    Gatoraid Member Posts: 66
    Best Chance of Survival.
    I also was T3n1m0 with 2 positive lymph nodes along with the tumor. The best chance for success is chemo along with radiation followed by surgery. At surgery they take out additional lymph nodes in the area to biopsy them to see if they got everything. If any besides the ones previously identified are positive, then there is more chemo after the surgery. The risk of reoccurance after all that is a coin toss.

    I was not happy about chemo, radiation or the surgery, but the MIE surgery was the safest way to go. In my opinion, without the surgery I wouldn't survive very long going forward. My surgery was in December 2010 and I've had 3 clean scans and am back to living a normal life with some changes to due a smaller stomach, etc.

    While this is his choice, I feel his depression and the shock of getting this cancer may be removing his fight to beat this thing.

    Don't give up in your quest to get him his best chance for survival. It's very scary..too much information can scare you about things that may not effect you while lack of information causes you to make poor decisions. We are all unique and some of us get through this easier than others.

    I wish you and him the best.
  • megmacmd
    megmacmd Member Posts: 85
    quality of life
    Dear Sal,
    I was diagnosed with stage 3N1 inmarch 2011 but really its probably stage 4a lesion in esophagus was through the outer lumen and I had nodes in my pelvis and perihilar region They told me I was not a surgical canditate which was fine with me the surgery can be gruesome My whole goal is quality of life to the end My sister and mother died 4years and 1year ago of breast cancermy dad died 5 years ago from bladder cancer Each choose their ownpath my sister went all out and was bedridden for over a year my mom and dad choose a gentlier route and lived their life until the last 2-3 months. I have done 12 rounds of foxflur cisplatinum, oxipatinum and 5FU I did well the first 8rounds but now I have a lot of side effect peripheral nueropathy mouth sores fatique bone pain but my latest was no cancer in my esophagus biopsy and my nodes have shrunk syillnot a surgical candidate which Iam fine with Ihaveno caretaker sincemy husband of 30 year died unexpecably of a brain anuersym 3 years ago and my 3children the eldest girl is 28 married working for JP Morgan and chase my middle girl26 is an occupational therapist my youngest son is at Uni of Virginia 3rd year , My goal is continuingt to work and get my youngest through college. I am a pediatric hospitalist inthe neonatal unit and I love the babies and my job.After 12 rounds of chemo Im taking a holiday and thenI will decide what to do I want quality of life and would rather be able to work to the end and enjoy my children than be bedridden or limited I dont want anyone tohave to caretake me although in the end I know that will be a reality and my eldest daughter has risen to the occasion to have me live with her.But I would rather stay in my house on the water by thebeach withmy little jack russel by my side. Its a tough decision since this is a very aggressive disease and from what Ive read high reoccurance rate yes you read about alll the survivirs but where are those who have succumbed My personal choice is quality all aloong the way Iwill takemy chances and make my decision after my chemo holiday november and december I really dont know what I will choose but chemo is begining to take a huge toll on me and my life and as I said before I really love work and living my life so we will see good luck on your decision its a hard one but your husband has a great care taker so that should factor in his decision butultimately it is up tohimm praying for you Meg McIntyre
  • megmacmd said:

    quality of life
    Dear Sal,
    I was diagnosed with stage 3N1 inmarch 2011 but really its probably stage 4a lesion in esophagus was through the outer lumen and I had nodes in my pelvis and perihilar region They told me I was not a surgical canditate which was fine with me the surgery can be gruesome My whole goal is quality of life to the end My sister and mother died 4years and 1year ago of breast cancermy dad died 5 years ago from bladder cancer Each choose their ownpath my sister went all out and was bedridden for over a year my mom and dad choose a gentlier route and lived their life until the last 2-3 months. I have done 12 rounds of foxflur cisplatinum, oxipatinum and 5FU I did well the first 8rounds but now I have a lot of side effect peripheral nueropathy mouth sores fatique bone pain but my latest was no cancer in my esophagus biopsy and my nodes have shrunk syillnot a surgical candidate which Iam fine with Ihaveno caretaker sincemy husband of 30 year died unexpecably of a brain anuersym 3 years ago and my 3children the eldest girl is 28 married working for JP Morgan and chase my middle girl26 is an occupational therapist my youngest son is at Uni of Virginia 3rd year , My goal is continuingt to work and get my youngest through college. I am a pediatric hospitalist inthe neonatal unit and I love the babies and my job.After 12 rounds of chemo Im taking a holiday and thenI will decide what to do I want quality of life and would rather be able to work to the end and enjoy my children than be bedridden or limited I dont want anyone tohave to caretake me although in the end I know that will be a reality and my eldest daughter has risen to the occasion to have me live with her.But I would rather stay in my house on the water by thebeach withmy little jack russel by my side. Its a tough decision since this is a very aggressive disease and from what Ive read high reoccurance rate yes you read about alll the survivirs but where are those who have succumbed My personal choice is quality all aloong the way Iwill takemy chances and make my decision after my chemo holiday november and december I really dont know what I will choose but chemo is begining to take a huge toll on me and my life and as I said before I really love work and living my life so we will see good luck on your decision its a hard one but your husband has a great care taker so that should factor in his decision butultimately it is up tohimm praying for you Meg McIntyre

    Meg......
    Meg... thank you so much for your post. It sound like you have experienced alot of pain and agony both physical and emotional. You spirit shines through your post beautiful. Your love of life... for your kids... your work... and of course Jack russel dog too. As I read your post the second time... my eyes are filled with tears. I wish you could have treatment and quality of life.

    Thank you for the encouragement. I will send you good stong positive thoughts.... I do not know what to say.....I pray you can find a good balance in your treament and quality of life + decisions.

    BIG HUGS To you MEG
    from
    Sal