Just found out

JimboC
JimboC Member Posts: 264
I am newly diagnosed. This week actually. I went in Monday morning for a upper GI because I had been having problems swallowing and 15 minutes after I left the test, my family Doctor was on the phone for my wife and I to come in. Originally it showed up as a 4cm mass. Thursday I had a CT performed which determined that it was actually an 8cm mass where the esophagus meets the stomach. It also showed two nodes involved. Right above and below the mass. EGD is scheduled for next week and the cancer doctor is on the 17th. I work in a hospital so I went over to our cancer center yesterday and talked to some of the folks there. Scary stuff. I have to admit, I spent some time googling this and the results don't look promising. This site was amazing though. It gives me cause for hope especially since I am young (42) and am in good health going into this.

Thanks

Comments

  • BMGky
    BMGky Member Posts: 621
    Sorry for your diagnosis
    When my husband was diagnosed, I was devastated. I, too, read all the online stats and info. Awful stuff. So scary. The majority of the sites contain old information even reputable ones. New treatment regimens have been developed. People are surviving!!!!

    Proper staging is the key. It sounds like your team is working quickly which is good. Time is of the essence. There are many others on here who are more knowledgeable and give reliable advice. Their comfort and suggestions help you get through this ordeal. I do hope you have a support network to assist you if needed.

    Husband had chemo/radiation, needed feeding tube due to throat infection [I was initially scared of it but it was easy and became a "best friend" as nutrition and fluids are vital] and then surgery. He had the full Ivor Lewis. Not for the faint of heart but it offers life. Except when he was hospitalized, he worked throughout all of his treatment. Granted, his color could have passed for green/gray putty. I stayed close at hand for needed nausea meds or whatever. Eating habits change. You get food. It tastes good. It makes you sick. You don't like it anymore and you try something else. It's okay. Your body is adjusting. About 6 months post op, normalcy begins to return. He had his first post op PET scan just recently, and he passed with flying colors. No evidence of disease. We were just in Colorado, and he did better physically than I did as I got altitude sickness. Just make sure your doctors work as a team and don't let anyone tell you you can take your time about treatment. More experienced members will soon be answering you and heed their advices. Good luck!!
  • birdiequeen
    birdiequeen Member Posts: 319
    There are survivors
    JimboC, I know you are going through an extremely difficult process right now. The internet research all seems very grim to us in the early days. We searched and searched for positive stories. Turns out one of my husband’s co-works husband was a 13 year survivor. That gave us some hope. There are survivors!!!
  • This comment has been removed by the Moderator
  • JimboC
    JimboC Member Posts: 264
    Thank you all for the hope.
    Thank you all for the hope. I have. To admit, I started crying from happiness when I read some of the good news on here. There is so much doom and gloom out on the Internet. There is no other organ involvement so that is the good news. I am not a clinician but I work in IT. Ironically, our Cancer Center construction was the first project I worked on when I started 6 years ago.
  • paul61
    paul61 Member Posts: 1,391 Member
    Welcome to our little EC family
    Jimbo,

    Welcome to our little EC family. I am sure at the moment you are still trying to deal with the shock of the initial diagnosis and all the questions that come from the follow on tests.

    First; About statistics, Ignore them!!!

    1. They provide a backward look at the average state of medical success and survival in a field or medical treatment that is rapidly evolving.

    2. The “typical” EC patient is a male between 60 and 80, frequently with other medical issues that complicate surgery and treatment. You don’t fit that category.

    3. They don’t comprehend the mental state and level of support that the patient has or his determination to overcome cancer.

    Second; Have your diagnostics and staging evaluated by a nationally recognized cancer center that treats many cases of esophageal cancer every year.

    I know; particularly since you work in a hospital, you may have a tendency to want to stay there because you know the staff. Because the treatment approaches and surgical approaches for cancer are evolving so rapidly, you need to go to the source to get the best and latest treatment approaches.

    Third; Be positive!!!

    This is the Cancer SURVIVORS Network, you will find caring people here; in all stages of cancer, who have survived radiation therapy, chemotherapy, surgery, and continue to live with and without cancer.

    Fourth; Tell us about yourself so we can use our experience to make the most helpful suggestions:

    Where do you live?
    How you were first diagnosed?
    Does your insurance allow you to travel to receive treatment?

    We will be thinking of you, and praying for you, as your work your way through this cancer and beyond it.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • sandy1943
    sandy1943 Member Posts: 824
    Hi Jimbo,( my grandsons nick
    Hi Jimbo,( my grandsons nick name). Welcome to our family. Any kind of cancer diagnosis can be terrifying at first, and it's good you're seeking information. There is so much testing to begin with. I'm glad your doctors are moving fast. It is so important.
    The information we find most of the time, give stats, and is very scary . We are all individuals-not stats. By reading the different post,you'll find out we are all different. After diagnosis in Nov.07,of stage 111 with three effected lymph nodes in the stomach, I received chemo and surgery. My test are still cancer free.
    Please add more information. We have survivors and caregivers on here that are very knowlegeable and will want to help. William is one that does a lot of research and always responds with info. to new survivors.
    Praying for you,
    Sandra
  • linda1120
    linda1120 Member Posts: 389
    Welcome
    Welcome to the best site on the internet for Esophageal Cancer! You will find hope here. My husband is one of the fortunate survivors of this difficult cancer. I too was so discouraged when he was first diagnosed by the information on the internet. The people on this site encouraged me to get my husband to a major cancer center that deals with ec on a regular basis. It was inconvenient, we traveled to another state, but my husband after his chemotherapy and radiation had his minimally invasive surgery and is cancer free. His lymph nodes were more involved than yours and he is fine!!!!!! I believe that knowledge is power and you will get a good deal of knowledge from some of the members. Please get a second opinion at a major cancer center or teaching hospital. We traveled from Idaho to Oregon three times and it was worth it.
    Jim is able to eat, had his first bites of steak tonight! He is still on a feeding tube and will be weaning off of it. He had complications due to a heart condition and it is making his recovery very slow.

    Everyone responds differently to treatment, and you are a person, not a statistic. Keep reading the posts, you will learn so much. Unfortunately not everyone survives, but you are young, in good shape, are getting help quickly, do not have cancer in any major organs, and hopefully will get that second opinion and opt for a minimally invasive surgery after chemotherapy and radiation.

    Linda
  • jpturn4
    jpturn4 Member Posts: 19
    GOOD LUCK
    Hi

    My husband is 44 and has been diagnosed as T3N3M0, we know how you feel and everyone is very kind. Just wanted to wish you the very best and to say there is some great advice on here.

    We have 4 kids and Paul found out about his diagnosis on 27th Jan, he started chemo 10 days ago, so still early days for us too.

    Take Care

    Julie
  • JimboC
    JimboC Member Posts: 264
    Sorry I haven't posted
    Sorry I haven't posted lately. I've just been wiped out mentally. I think it's a bit of depression that I'm having to work through. I have my EGD today and I see my Cancer Surgeon tomorrow. My expectation is that he is going to want to do Chemo and Radiation. I am going to ask for surgery sooner rather than later. I am strong and relatively healthy today so I am willing to accept the life change to get this out of my body. I am hoping to get my staging tomorrow. Based on everything I've been reading, my expectation is T3N1M0. Appreciate any questions that I should ask the doctor tomorrow. Also anyone's experiences with surgery first would be appreciated as well.
  • JimboC
    JimboC Member Posts: 264
    jpturn4 said:

    GOOD LUCK
    Hi

    My husband is 44 and has been diagnosed as T3N3M0, we know how you feel and everyone is very kind. Just wanted to wish you the very best and to say there is some great advice on here.

    We have 4 kids and Paul found out about his diagnosis on 27th Jan, he started chemo 10 days ago, so still early days for us too.

    Take Care

    Julie

    My gosh, good luck. Please
    My gosh, good luck. Please keep me updated on his progress. We're so close in age and diagnosis dates we'll probably be going through a lot of this at the same time. We have two kids. 18yo boy and a 21yo girl. My prayers will be with you.
  • JimboC
    JimboC Member Posts: 264
    linda1120 said:

    Welcome
    Welcome to the best site on the internet for Esophageal Cancer! You will find hope here. My husband is one of the fortunate survivors of this difficult cancer. I too was so discouraged when he was first diagnosed by the information on the internet. The people on this site encouraged me to get my husband to a major cancer center that deals with ec on a regular basis. It was inconvenient, we traveled to another state, but my husband after his chemotherapy and radiation had his minimally invasive surgery and is cancer free. His lymph nodes were more involved than yours and he is fine!!!!!! I believe that knowledge is power and you will get a good deal of knowledge from some of the members. Please get a second opinion at a major cancer center or teaching hospital. We traveled from Idaho to Oregon three times and it was worth it.
    Jim is able to eat, had his first bites of steak tonight! He is still on a feeding tube and will be weaning off of it. He had complications due to a heart condition and it is making his recovery very slow.

    Everyone responds differently to treatment, and you are a person, not a statistic. Keep reading the posts, you will learn so much. Unfortunately not everyone survives, but you are young, in good shape, are getting help quickly, do not have cancer in any major organs, and hopefully will get that second opinion and opt for a minimally invasive surgery after chemotherapy and radiation.

    Linda

    Thank you so much for
    Thank you so much for sharing your husbands experience. Please share my congratulations on the steak. Believe me, I understand. That was one of the foods that the doctor specifically warned me to avoid and I already miss it. I do feel pretty good about my doctor but I am considering a second opinion at possibly UPMC where William recommended.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    Welcome
    Hello Jimbo and welcome to our ec discussion board family! I was a caregiver for my dad. He passed away a year ago today, 3/9 from EC with mets to the liver. But, yes, there are many, many survivors here. This is where you need to do your research. Take it one thing at a time. Next step is to get the tumor staged, then discuss treatment options/surgery options. Usually the oncologist has you have chemo/radiation first to shrink the tumor, than moves you onto the surgical team to discuss the surgery. The MIE (minimally invasive) is the best surgery to have from what I have learned. There is another young gentleman here, Brendon who was just dx as well. His wife has posted a world of information regarding people's experiences with surgery. You working in a hospital will be of great help to you. Come here often, ask as many questions as you need to, lean on us whenever you need to. Take care and keep in touch!
    Tina in Va
  • kcinpdx
    kcinpdx Member Posts: 13
    Keep Your Chin Up
    Hi Jimbo, like you, I have GE Junction cancer, diagnosed stage 3, with 2 positive nodes, that started with difficulty swallowing 11 months ago. If the swallowing problem becomes a big issue for you, let me know and I’ll share with you how I made it through nine months of that.

    I did 9 weeks of EOX chemo last summer that ultimately shrank my tumor 50 percent and silenced the glow in my two lymph nodes. All follow-up tests showed it had not spread elsewhere. Then on the recommendation of my surgical oncologist, I did a second round of 6 weeks combined chemo/radiation therapy I completed January 17th, 2011. The surgeon suggested I consider chemo/radiation because in ~20 percent of cases the cancer is eradicated and in many instances surgery is not necessary. A relative of my wife's co-worker had the same cancer as we do, did the same chemo/radiation therapy that "cured" him, he didn't have any surgery and has led a happy healthy cancer free life since then. So have hope, as other survivors point out here in this forum, complete cures are definitely possible.

    After I completed the 6 week chemo/radiation treatment and recovered from its tough side effects, my most recent Feb 24th, 2011 endoscopy biopsy of my original GE junction tumor came back with "no evidence of malignancy." My follow-up PET scan is at the end of March and the results will drive what direction I’ll take next. On the plus side, my tumor area pain has been gone for over 3 months, I can swallow pretty close to “normal” again, I’ve gained back 20 pounds and feel just as good now as I did before this whole ordeal started 11 months ago.

    Statistics are statistics, and you’re right, its scary as hell when its happening to you, but as Paul61 points out in his comments above, the population includes people who are older and have other medical issues that complicate the cancer and treatment. Keep in mind your age and good health are most DEFINITELY in your favor so stay positive my friend – remember the strength inside you is your most formidable ally in this fight and those who love, support and treat you will provide the rest. My best to you, Keith
  • JimboC
    JimboC Member Posts: 264
    More news today. When I
    More news today. When I showed up for my EGD, I found out that I was also having a Endoscopic Ultrasound. My Cancer Surgeon found out that I was having the EGD today so he wanted to go ahead and do the US while I was already under. Super nice guy I thought.

    The tests did confirm that it was cancer. Took some biopsies. The report had it EUS as a T3N1. I follow up tomorrow but from what he was telling my wife, he suggests Chemo right off the bat.

    Thanks to the reading I had been doing here, the diagnosis wasn't a big surprise and I was pretty well prepared for it.

    Thanks everyone for sharing and for so much information!
  • JimboC said:

    More news today. When I
    More news today. When I showed up for my EGD, I found out that I was also having a Endoscopic Ultrasound. My Cancer Surgeon found out that I was having the EGD today so he wanted to go ahead and do the US while I was already under. Super nice guy I thought.

    The tests did confirm that it was cancer. Took some biopsies. The report had it EUS as a T3N1. I follow up tomorrow but from what he was telling my wife, he suggests Chemo right off the bat.

    Thanks to the reading I had been doing here, the diagnosis wasn't a big surprise and I was pretty well prepared for it.

    Thanks everyone for sharing and for so much information!

    This comment has been removed by the Moderator
  • dwhite0002
    dwhite0002 Member Posts: 126
    I was diagnosed at age 32. I
    I was diagnosed at age 32. I am now 36. There is hope.
  • GerryS
    GerryS Member Posts: 227 Member
    Have faith...............keep positive.....
    I too, Jim was devastated one year ago when diagnosed. Stage 2.N1M0. Had Ivor Lewis surgery followed by chemo. One year later, clean ct scan and feeling great and eating almost anything. Keep you chin up, surround yourself with positive loving people and we are all here to help. God Bless.....

    Gerry
  • Gatoraid
    Gatoraid Member Posts: 66
    Your Diagnosis Close match to Mine
    I also had a tumor where the esophagus meets the stomach but I had 2 positive lymph nodes at the top of the stomach. I went through 2 rounds of chemo (Cisplatin and 5-FU) concurrent with 28 days of radiation. I had to wait about 6 weeks after that for my immune system to recover and then I had laposcopic minimally evasive surgery. The surgery was an alternative to the Ivor Lewis approach but far less evasive. I had 9 1 inch holes..2 for drains, 1 for a feeding after surgery and the rest for the surgery itself (cameras and the actual surgery). The ultrasound is non conclusive and true staging only occurs after surgery. They took out 16 lymph nodes on me and only found 2 positive. There is no way of telling if in fact the 2 that showed up in the Cat scan are the 2 positive nodes they removed, but they said that there was a 70% chance that they got everything. My surgery was in mid-December and now every 3 months I have a cat scan (the first next week) to make sure no cancer shows up.

    One thing to be careful about....the information you'll gather about side effects will scare you. Everyone is different so you may not have those symptoms. My first round of chemo was a breeze, very little nausea but after it was over I had bad mouth sores which could of been avoided if I new to gargle with salt water a couple times each day during and after chemo. the second round of chemo I gargled and had no mouth sores, but I had much more nausea. The radiation did not effect me until the treatments ended and it contributed to the nausea. After the surgery you're fed by a hookup to a tube coming out of your stomach for a month. In the beginning your connected 14 hours which is a real pain. That month I couldn't lay down because of the feeding connection and my wounds from surgery. I won't tell you that this is easy but of the 14 sysmptoms they tell you about chemo, I only had 3 - nausea the second round, mouth sores and I lost my ability to taste where familiar foods tasted different. I found some foods that tasted the same and only had them. I am in the Boston area and found Mass General to be a God-send The doctors and cancer center is awesome. Do your homework and feel free to use me as a resource. You need to fiond a surgeon with definite experience with minimally evasive surgery on the lower esophagus. Do not get evasive Ivor Lewis surgery. The cut you from the back all the way to the mid chest and know a hole in 2 ribs for access. You recovery tome is a good 2 - 3 weeks in the hospital, there is much more risk of infection and it's much more painful. My surgeon did a great job; I had very little pain, was walking around the day after surgery (I was definitely weak) and i was home 6 days after surgery. Now, 3 months after surgery I am working full time and feeling pretty good. My new stomach is smaller and I must eat every 4 hours in smaller amounts but I feel fine. As I try foods that I haven't tried yet, I am learning what negatively effects me. I sleep with my head elevated using a sponge wedge under my pillow and do not eat anything within 2 - 3 hours of when I go to bed to avoid heartburn. If you want to talk to me send me an e-mail.

    Don't scare yourself with an overload of information. Because each of us are different, it may not be that bad for you. I did that had had alot of concern about sysptoms that I never was exposed to. Before my surgery I could take ibuprofin and acedamaphine without taking it with food. With my new stomach, when I took these without food I got nausea. I was sich for about 3 weeks until I contacted a nuitritionist about my diet and the first thing she did is went through my medications and had me take some with food. My nausea went away. With your new stomach, there will be some adjustments.