diagnosed with stage 2 Esophageal Cancer

[Douglas Carpenter]

Yesterday morning. Which basically means that my condition is probably inoperable.
Six months ago I was diagnosed with level 1 ASD (Autisms spectrum Disorder - formerly known as Asberger's Syndrome) I was so happy about it. Finally I have an answer to a life long puzzle.

But I can't see anything positive about this latter diagnoses. When I asked the Gastroenterologist if I probably have about one to three more years to live - He said, "Yes, that is probably about right."

When I was young I used to constantly contemplate suicide. Then I discovered that life was more bearable than I initially thought and that some of my unsolvable problems did have solutions.

Now it is all completely out of my hands. Is there a right way for a person with ASD to face the likelihood of death?

Sorry for being such a downer. I just can't come up with a way to put a positive spin on this one.

[BainsBane]

1. I'm so sorry

That must be so difficult.

[beam me up scottie]

2. That sucks, Douglas.

I am very sorry to hear it, are there any support groups for ASD in your area?

[SamKnause]

3. I am sorry for you

and your loved ones.

I don't know anything else to say.

[Ken Burch]

4. Shit! This is just not fair!

So sorry to hear this...I know that doesn't help much, but at the moment, it's all I can say.

[muriel_volestrangler]

5. So sorry to hear this, Douglas

My mother had this. In her case (she was in her 80s) they decided an operation had too many complications, and being aged and with Type 2 diabetes, she wouldn't be strong enough to take any treatment, so they had to let it run its course.

I hope there are options for you, even if the chances of success aren't great. All the best.

[bemildred]

6. ALL MY TRIALS

But seriously, I'd start planning my care now, you don't want to be hassling for pain meds and whatnot, and you need someone you can trust at the end.

[merrily]

14. This post does not seem like you.

[voteearlyvoteoften]

137. Thank you

[appleannie1]

7. My Sister in law was diagnosed with stage 4 squamis cell lung cancer.

She was told to get her things in order because she only had a month, 2 at the most, to live. She got mad. She went to another doctor. He said it was possible the cancer had not attached to the esophagus. She had aggressive chemo and radiation at the same time plus went on a holistic diet, did meditation and a lot of other stuff people think of as hooey. The second doctor was amazed at how fast the cancer shrunk. She went in for surgery the day before Christmas 7 years ago. She is still cancer free. Don't just give up. But also plan ahead. I had hospice for my mom. I highly rec them.

[seabeyond]

60. i hope douglas reads this post. and thank you for sharing with all of us, a reminder doctors

are not gods...

[Roy Rolling]

104. Lymphoma

I had the same experience with my wife. She went holistic combined with chemo and beat Stage 4 Lymphoma.

There IS hope.

[villager]

126. Both these: Don't just give up. But also plan ahead. And all healing wishes to you.

Keep us posted, and take good care.

[barbtries]

8. it may be treatable.

don't give up just yet, you just heard the news. best wishes for you, i am sorry you have to go through this.

[Ilsa]

9. Please, see another doctor.

Your prognosis may be better than the first one thought if you get the right treatment.

I'm so sorry you have to deal with this.

[shenmue]

10. ...

[Unknown Beatle]

11. Please don't give up.

Look at other options. Just don't give up. I'm really sorry that you got bad news but please look at other options.

[Violet_Crumble]

12. I hate that this is happening to you, Douglas...

I agree with what some of the others have said already. You've only just been diagnosed, so don't give up. It may be treatable. If there's no ASD support groups where you are, have a look online coz there'd be some out there.

[etherealtruth]

13. I am sorry

[merrily]

15. I don't know much about this. I hope someone else can help. Meanwhile, all I can do is say

I am so very sorry. Don't apologize for sharing your feelings and thoughts, though. If sharing helps, share 24/7.




In your shoes, I might look into support groups, both for cancer and Asperger's. And, while we all should prepare for the reality that we will all die one day, no one knows how long a time or how a short a time it will be. I don't know that I would take any deadline as gospel, even one given me by a specialist. By the same token, I could have a fatal heart attack before I finish typing this post. The important thing is appreciate the time you have.

If that sounds too sappy, I apologize. But, I was not given a fighting chance prognosis some years back and I've defied it.

[madamvlb]

16. Please don't give up.

See a few doctors and get different opinions.

[Duppers]

17. Mayo

Look up the dept. and make an appt. asap. Or do your research and find the list of best hospitals closest to you and make an appt. there, asap.

When DH was diagnosed with thyroid cancer, I did the research and called Johns Hopkins and made him an appt. That was 10yrs ago and he's well today.

It pays to see the best docs. Hopkins did not charge us any more than the local quack wanted. Do it.

Good luck. Don't give up.

[MannyGoldstein]

75. Agreed. Mayo, Cleveland Clinic, Mass General, etc.

For things like this, far better than most hospitals.

[okasha]

133. M. D. Anderson, Houston, is excellent.

[Depaysement]

18. Easy for me to say but . . .

Positive spin? You are now free.

Whatever you want to do, do it. Whatever you want to say, say it. You no longer have the luxury of waiting, or the burden of the future, so don't hold back. You have a time limit. Use it to enrich your life in anyway you think is right.

I am sorry that this happened to you. I'm just trying to be helpful.

[cali]

19. so sorry, douglas. I hope you have many more years than what you were told

[jtuck004]

20. "...to face the likelihood of death" < I am sitting next to a little memorial my wife made

after her mom died last year. It says:

"How did she die? Ask me how she lived. After all, that's what she spent most of her life doing!"

Beyond basic planning, or snapping up one of those specials on a plot or cremation they seem to be running more frequently on tv these days, (what is that about, anyway?), I have no idea of how one might face the likelihood of death. I suspect most folks actually confront this years before, but it seems far away, so they forget about it until something happens, and refocuses their attention on it again. (That's what happened to me).

If it is of any assistance, and not through some misguided optimism, I would suggest instead that one might strive to focus on the living part instead. Worry more about what you are gonna do with that life you got left.

The reason I think that is a better approach is because I have seen people start concentrating on living their life and forget to die when they were supposed to.

Good luck, and I wish you peace.

[RKP5637]

21. This is very saddening to hear!

[azurnoir]

22. i am so sorry to hear this please don't give up yet

your life is in your hands as long as you're alive and aware, I know that's difficult but it's true, also do not take the Gastroenterologist's word for it, please see an oncologist

[Enthusiast]

23. Sorry to hear this, Douglas.

[Surya Gayatri]

24. Wishing you strength and serenity in the days to come.

[MrMickeysMom]

25. I don't wish to give you false hope, but...

I agree with another here that it is wise to seek a second opinion, meanwhile doing some homework that can be done via the internet on who treats this. The best advice is from those who would have been faced with same diagnosis.

I hate to admit this, but not all Board Certified Gastroenterologist are the same. Thoracic and Esophageal surgeons do have more to say on the treatment phase. Do this soon, as I'm thinking you will anyway.

Anything else I'd have to say would purely be supportive of what YOU think is best. But, sometimes you just need some input into that. I hope that you are finding us on DU.

Bottom line is that this is YOUR life, and you sound like you've had quite a challenge in that ride with what you've discovered.

[BreakfastClub]

26. Get a second opinion. There are so many new treatments

coming out for cancer. It's truly a revolution happening in how it is treated. If you have HBO, watch the show Vice: Killing Cancer. There really is so much happening right now and you have reason to feel hope.

No doctor knows when or if you will die. The doctor who said that to you is WRONG. He has no idea other than statistics, and everyone is different. Some people do get cured of "incurable" diseases. There's no reason to think that you can't be one of them. Find a doctor with compassion and get the best you can get.

Clinical trials - Search clinical trials here if you find there's not presently a mainstream treatment for your disease. My aunt was diagnosed with lung cancer that has metastasized to her brain. That was TWO YEARS AGO and she is still holding her own in a very successful clinical trial. The first doctor she saw said she had a few months. She said, fuck you, and found someone with some compassion and optimism. She is happy and lives her life, much like Valerie Harper who was also told she was terminal, and is still doing very well with new treatments working for her too.

As for optimism, it is very important for anyone dealing with an illness. Take a holistic approach to this. Your thoughts and emotions are important for your health too. If you are depressed, please find a therapist to talk to. Find a good one (they're not all good), and one who meshes well with you.

As I said, this is not hopeless by any stretch of the imagination. None of us know what the future holds and where our journey will take us. Be positive.

[Joe Chi Minh]

27. You sound a kind sort of a soul. Why don't you

watch and listen to the many positive accounts on YouTube video-clips, of their 'near death experiences' by people who have clinically died. Invariably, they discover that we do not die - only our body does (and that Christians believe, temporarily, before receiving it back in a glorified form we can't really imagine). In fact, it's a while before they realise they are 'dead', because the feeling of love and peace they experience, even at that stage, is so wonderful.

They then, sometimes after travelling through a tunnel meet a being of light, whose infinite love 'knocks their socks off', so that when they are eventually told they have to go back, they are really cut up about it, and sometimes wake up in their hospital bed in a very angry frame of mind. That bit where they are told they have to go back is one of the highlights for me, with my schadenfreudian-type sense of humour. The main highlight, however, is their body-language, which sometimes is so emotional no actor could feign. Some of them are very tearful, in having their longing to return to that ante-room of heaven re-awakened.

So profound was the effect of their other-worldly experience on them that, reluctant though most of them were to return to life down here, it caused them to completely change their goals in life to one focused on the Second Commandment - the Golden Rule shared by all the mainstream religions and a few more. If you'd like to know some of the best videos, send me a message, and I'll compile a list.

Don't look on dying negatively. Everyone you've seen and will see in this life will face it, unless they live to see the Parousia* - which may not be far off. You are only facing the possibility of it prematurely in some measure.

*I believe Paul tells us in an epistle that those who are alive when it occurs will have no advantage over those who have died.

[RedCappedBandit]

28. I'm sorry Douglas. I wonder if your doctor can refer you to a social worker who could help?

[joshcryer]

29. Best wishes. Fight it as much as you can.

Viruses are likely to cure all cancer in the next decade. Fight. Fight. Fight.

Best wishes.

[Erich Bloodaxe BSN]

30. You're not being a downer.

You're being human. A human facing a stronger certainty of knowing when the curtain is going to close than most of us. Any of us could be hit by a bus tomorrow, but we mostly live as if it's never going to end.

Time to sit down and think about what you enjoy most, what you want to get done in the time you know you've got left, now that you know time is tight, and that probably a good chunk of it will be tied up in medical care issues.

It's what we all should be doing, really, instead of frittering away the time we should be treasuring. Time is (pardon the triteness) precious. Value what you've got left better than most of us do, and pack every minute of conscious living that you can.

[malaise]

31. Hard news to spin positively but

you need to do everything you ever wanted to do before you can't do anything.
Watch the sun rise, listen to the birds and smell the flowers - early in the morning.
My simple philosophical outlook has prepared me for any bad news re the end of my life - everything that lives will die, which means we're all going to die eventually.

[Solly Mack]

32. You're not a downer. I spiraled when I got my diagnoses and I still

have my moments...sometimes daily. I'm going through a rough patch now...all kinds of emotions came tumbling out recently. It happens. There are good days and bad....sometimes there are only bad days and days that are not as bad.


DU has a Cancer Support Group and you'll find a great bunch of people that can help you.

Please visit our group.

[still_one]

33. Sorry what you are going through Douglas, but you may want to consider a second or third opinion

ideally from a major cancer center who are really on top of this. Centers like the Mayo Clinic, John Hopkins, University of Pennsylvania, and other major medical centers are usually on the leading edge for treatment options, and surgical skills for these kind of issues

I wish you all the best

[Warren DeMontague]

34. I'm sorry, too.

There's not anything I can think to say beyond that, that doesn't sound trite.

There's some good advice in this theead, though, about second opinions and the like. I do wish you the best, brother.

I'm sure I speak for DU when I say please dont feel as though you need to apologize for sharing what you're going through.

[PeaceNikki]

35. I'm so sorry.

[octoberlib]

36. I'm sorry to hear this, Douglas.

If surgery is out of the question , esophageal cancer can be successfully treated with chemoradiation. Please get a 2nd opinion.

[kaiden]

37. Make an appointment with an oncologist.

Don't take the word of just your gastroenterologist. My husband and niece were each diagnosed with Stage 4 cancer within a month of each other: his, lymphoma; hers, colon cancer that had metastasized to her liver (she was 39 at the time). Today, each of them is cancer free. You can read about our niece's cancer adventure at her blog www.lovingcancer.com.

We learned that if you show up when they tell you to show up and sit where they tell you to sit, your odds are pretty good. Cancer is NOT a death sentence anymore, as DUers up-thread have indicated. One day and one step at a time, my friend.

[Jefferson23]

43. +100. n/t

[FlaGranny]

38. Cancer

Douglas, it is NOT completely out of your hands. Never, ever give up. My mother was diagnosed with lung cancer and was given about 3 months to live. She lived another 20 years.

Giving up is the worst thing to do. Be proactive, get second opinions, live the healthiest lifestyle you can manage, exercise. Live your life, find things to laugh at.

Being diagnosed with cancer is a shock, but don't use it as an excuse to not live your live to its fullest.

Best wishes to you.

[sorefeet]

39. Mayo, Johns Hopkins, NIH

calm down and think about this. I know it's hard but there are thousands of people leading a normal life who thought it was over. It is not time to give up. There are probably dozens of studies going on for your cancer and you are needed for these projects. NIH took my friend in with liver and pancreas cancer and have done immuno therapy, it uses your very own immune system T cells to kill the cancer. guess what, it works. There are options, it's usually a battle but so is life. So do some studying and lets do this. Get the ball rolling TODAY, call them TODAY. Good Luck

[Warren Stupidity]

40. Hey Doug, sorry to hear about this.

I have no answers for you other than to enjoy as best you can the time you have left.

[tenderfoot]

41. ...

[Jefferson23]

42. Dear Douglas, you are a thoughtful highly intelligent fellow, let your ASD help you

use your keen sense of logic to guide you. My hope is you have a very good family and or
friend to help you process this traumatic news, and that it will help you to take the
next steps which could very well include more medical opinions who have a specialty
in this type of cancer.

If you decide to share more with DU, please know good people are here for you.

Oh my God, I am so sorry this is happening to you

[Nay]

44. I am so sorry you are going through this. As a cancer survivor (so far), may

I make a few suggestions and observations?

Right now, starting with the visit to the gastroenterologist, RECORD every dr visit, treatment, etc., in an Excel spreadsheet; record the date, doctor's name, doctor's specialty, office/hospital of the visit, reason for visit, and a comment box for you to record everything that happened during that visit/treatment. Otherwise, you will never remember what happened when because the whole process is complicated, you may have many doctors/nurses/PAs, and your emotions will interfere with your memory. Take this spreadsheet with you to every visit so you can answer any questions your docs may have. Also, keep a spreadsheet of your medications (name, dose, dosage times). This saved my sanity.

If needed, take a trusted friend or family member with you to (at least) the first few appts and ask them to record what the doc says for your spreadsheet -- you may still be in shock and be upset and miss things.

Your emotions will be all over the place and that's very normal. Don't try to repress them or do anything with them other than feel them and allow them to come and go at will. Cry when you want to, amuse yourself if it helps, call a friend or family member when needed.

Watch that Vice:Cancer program that someone else recommended. It was eye-opening. Cancer treatment is changing very quickly.

You now need to see an oncologist for a second opinion and recommendations on a course of treatment. If you feel the need, get a second oncologist's opinion. Discuss with both of them the option of the new treatments. Do lots of research for yourself and don't be afraid to discuss any of it with your doctors.

I don't know that much about your cancer, but Stage 2 is better than Stage 3 or 4, so get hopping and get into treatment. People go into remission every day, and you may be one of the lucky ones.

Then, when you and your doctors are on a course of treatment and you have done all you can do, make sure to do something fun or gratifying every day. We each have only the present day before us to do with what we will. So go and do it.

I'm sending you good vibes!

[elfin]

45. Have a sibling who is clear two years after operation for that

A rugged surgery and aftermath, but really doing well now.

She went to Moffet cancer center in Florida. Wishing you all the best.

[spanone]

46. my brother is in remission...same diagnosis

[teamster633]

47. My wife was diagnosed with Stage 2B Squamous Cell Esophageal Cancer over 9 years ago.

That is to say, the cancer had progressed beyond beyond the lining of the esophagus into the esophageal wall. The diagnosis included the possibility of localized lymph node involvement but, that could only be ascertained surgically. Our gastroenterologist referred her to a highly rated thoracic surgeon as well as to our local cancer center. It took awhile but, she eventually chose to have the recommended surgery (complete esophagectomy) along with both radiation and chemotherapy. The surgery is brutal and the radiation and chemotherapy are very difficult as well but, she's still with us. The cancer has recurred once since and, that entailed another round of chemo and radiation but, she is able to live a pretty normal life. She has seen her daughter graduate from high school, college, and soon, from grad school. Don't give up hope. Stage 2 is not a death sentence.

[a kennedy]

48. D*mn it, cancer sucks........

[sharp_stick]

49. Go see an oncologist

A gastroenterologist should not be giving you a cancer prognosis, he has no business doing that.

You need to see an oncologist.

Stage II esophageal cancer can mean localized or nearby spread and it does not mean it is untreatable by any means.

You need to see another doctor and you should do it soon. The faster you can get in the sooner a treatment plan can be implemented.

[Zorra]

50. I'm really sorry, and I hope it immediately goes into remission forever.

[greatlaurel]

51. You need to find an oncologist stat. Has your doctor referred you to an oncologist?

From what I could find at the American Cancer Society, there are a lot of options and information. Here is the link
http://www.cancer.org/cancer/esophaguscancer/index

I have been to several gastroenterologists and I have found that most of the docs in this specialty are very poor in communicating with patients so do not give up based on this one doctor.

If you are in Ohio of a surrounding state try James Cancer Hospital or the Cleveland Clinic. I found the James staff to be extremely helpful and incredibly positive when facing a cancer diagnosis. My family has had very positive outcomes from treatment at the Cleveland Clinic. The Cleveland Clinic even designed a treatment regimen for one family member that was administered at another hospital and this family member is completely cancer free nearly 20 years now.

Just take it one day at a time and like another poster said do something you really enjoy every day.

Good luck and keep us posted on how things are going.

[whathehell]

52. Douglas, my uncle had esophageal cancer & lived about 20 years after his diagnosis.

It's way too early to give up!

[JustAnotherGen]

53. Don't apologize - you aren't a downer

You are honest. And there is no way to put a positive spin on it.

[Tom Rinaldo]

54. There is no positive spin, that's a step too far...

Hopefully you will beat the odds and live many more years. The only thing positive I've ever heard about being faced with what you now are faced with, is that some people start to really focus on what matters, and get much more meaning out of every day that they live. Hopefully that can happen for you AND you will get many many more days to live. Keep us posted Douglas, I always look forward to reading anything you write here, and count me among those who are a lot about your well being.

[ismnotwasm]

55. Oh man

There is no one right way for anyone. I am so sorry. I hope you find answers

[riderinthestorm]

56. Catch your breath. Grieve a bit. Then get yourself to an oncologist!

Your life is not "over".

Now it's time to get busy saving it.

The more pro-active you can get now, the better you're going to feel about the long process ahead.

You can beat this like others have before you.

DU is here 24/7. Lean on the community here but also find a support group in real life. They help.

Good luck. Don't give up. Go see an oncologist asap.

[denbot]

57. I have no suggestions for you, but man that really sucks

[seabeyond]

58. right way? douglas,

thank you for sharing, a difficult and scary time in life. i have no answers.

live these years, and sittin with you in the peace of now.

[think]

59. Thoughts & prayers.

There has been many great responses in this thread.

Maybe finding an oncologist would provide better insights & possible treatment options. It certainly sounds like good advice to consider.

You will be in my prayers.

All the best to you.

[TBA]

61. I strongly urge you to go to the best treatment center you can

Mayo clinic saved my life. I have no doubt that my positive outcome was due largely to the skill level of the physicians treating me.

I'm not totally out if the woods, but I've been cancer free for a year and a half.

I'm 55, children are grown and I've gotten to enjoy my grandson for 3.5 years. I am so grateful for every second I am able to spend with them.

I know it sounds strange but the last year has been the best year of my life....hands down.

But again, get busy. Get plugged into any resources you need and get to the best hospital you can get to.

One more thing. May I recommend a product called Orgain. It is a high quality meal replacement drink that is all organic. I lived on it while undergoing chemotherapy.

And another thing. There are meds that will help you with the anxiety. Don't hesitate to discuss with your oncologist the psychological trauma you are facing. They can give you meds to take the edge of and help you stay on an even keel mentally.

[mopinko]

62. agree with others here- get a second opinion

and a third, and maybe a fourth.
go to mayo. go to a good research hospital.
do not go gentle into that good night.

[Oilwellian]

63. I am very sorry

Last edited Fri Apr 24, 2015, 11:21 AM - Edit history (1)

My husband works with a man who had the same diagnosis, Stage II as well, had surgery and is in remission. I'm not trying to pry into your personal health issues, but wonder why they won't operate. I hope you get a second opinion. Everyone should if their disease is life-threatening. Take care and best wishes.

Editing post: My husband's coworker had Stage III esophageal cancer not Stage II.

[TexasMommaWithAHat]

64. What is it about gastroenterologists?

Mine is a real asshole. My oncologist even joked about what an asshole he is.

I'm very sorry about your diagnosis, but please, please, get yourself to the Mayo Clinic, M.D. Anderson, or some other highly rated cancer center.

I had another type of cancer myself (not gastro related), so I have met plenty of cancer survivors and have heard plenty of stories - some would call them miracles, but if they are miracles, they are a little more plentiful these days. Many cancer patients are living with cancer as a serious chronic disease, and get 5, 10, or 15 years more of life out of their "death sentence."

Live your life everyday. You are not dying today. You are not dying tomorrow. Or next week. Or the next. And don't be afraid to ask for help in order to live life to the fullest. If you need anti-anxiety meds, ask for them!

And work on your bucket list. Once I got my diagnosis, I have to say that my priorities on my bucket list changed....a lot.

Peace.

[CountAllVotes]

112. What a great reply!

You've said it all my friend!

Thanks for giving our friend here something called HOPE!

There is always HOPE!!

Thank you for posting your story!!

[TexasMommaWithAHat]

114. You're welcome. I have many stories

of friends who are living - and living well - with cancer. Chemo is difficult, but the anti-nausea drugs work very well in most cases. And radiation...well that was a helluva' sunburn, I have to say. sigh

I don't want to make light of a cancer diagnosis. I now take anti-anxiety medication whenever I have one of those days, which isn't that frequent. So do many of my friends with cancer. I have a better diagnosis than some of my friends, since I have better odds to live than not live at this point. However, I have a friend going on 3 years with "no evidence of cancer" who was initially given less than a year to live. She knows that her cancer is probably just lurking and will rear its ugly head again, but she is buying time and more time as she watches her children grow up. Her doctors now believe that she might be able to get several more years. She is closely monitored, and when that shit comes back, she and her doctors will fight it with everything they have. That young woman is a real inspiration to me.

[deutsey]

65. I'm sorry to hear this...

[Greybnk48]

66. Very sad news

my heart is with you. You have many friends here for support Douglas.

[OregonBlue]

67. Wow, I am so sorry. You sure have had your share of woes. I hope you will

take all the advice here and seek another opinion. And if there is nothing that can be done, do call Hospice. Both my my folks died this year and we had Hospice for both of them. They are angels. Teach the family how to care for the person and provide meds so there is no pain. Let us know if you see someone else and they have an alternative. We would all like to know.

[myrna minx]

68. We're here for you.

[Sheepshank]

69. I honestly believe there is s certain trust and strength in sharing

You have already shown this. There are so very many people here with stories of hope and a pathway for action. When you are ready....please please make a plan for action. A specific list of what to do next. The post above recommending the spreadsheet is awesome. You are in for a fight and we are all in your corner. i think I would stay away from too much on line research regarding the disease for now. It's too overwhelming and they're really is a lot of quackery that poses as real treatment. Certainly find out about some of the supplements or power foods that will aid your troubled mind and have a positive aspect to your illness. like avoiding processed foods, eating organic where possible. Doing good things for you body is a positive thing. Do search for the right doctor for you. It is so easy to stay with the one you first meet, but you need to like and feel confident in their ability. If I where there I'd give you a big hug. My daughter has aspergers and physical contact was difficult. She had to start taking anxiety meds, very low dose, and it was surprising her change In that regard. I think someone else mentioned anxiety meds...don't shy away from it. Hugs again, I am so very sorry

[Avalux]

70. Hi Douglas...I'm so sorry you're faced with this diagnosis. BUT....

...don't give up, please don't give up. It's crucial to get another opinion because docs aren't always right. If the diagnosis is confirmed, then you know there isn't anything you can do about that, it is what it is. Your life is not completely out of your hands though. So, step 1, get another opinion (or 2 or 3).

You will need to decide what you can and are willing to do keep living. Look at the available treatment options...chemo, radiation, diet....all need to be considered. There are cancer centers that treat a person holistically and provide emotional support so you may want go that route.

Whatever you decide, remember that you are not a victim to this diagnosis and it doesn't automatically mean you won't be here in a few years. I have known many people who were told they wouldn't make it, only to prove everyone wrong.

Don't give up.

[woodsprite]

71. Just remember, as my oncologist told me, "You are not a number!"

Seven years ago I was stage 2A endometrial/uterine cancer (surgically treated). My doc said that those are the words he would tell his wife if she had cancer, even though he was one of those docs who wrote those reports and studies for the NIH.

I have a friend who was late stage 4 ovarian cancer. Some of the best local docs/oncos said she needed to start planning end of life care and she was given about 6 months. Well, that was 2+ yrs ago and all indications are that she's on the mend. She has the end-of-life care plan decided upon when/if it's needed, but she hasn't had to act on it. She went to MD Anderson Center where they evaluated her, then worked with her local doctors on a treatment plan. They did a couple of cutting edge/experimental procedures on her, but she's doing really well now and getting back into her life as it was.

The most important words "You are not a number!" means you are not a statistic. In the context of your diagnosis/your treatment, you are not a statistic in a report gleaned from data collected 3, 5, or 10+ years ago. All cancer research is constantly moving forward. Any report you read about is just a snapshot of data at a given moment.

Please don't give up! Educate yourself, search for options, get a second opinion.

[BlancheSplanchnik]

72. my advice? Read This Thread. Over and Over.

Also, see if you can find Autism spectrum support. Social connections are difficult on the Spectrum, and help with it is important. You need to develop skills to make friends and share support.


nam myoho renge kyo
Blanche

[Bossy Monkey]

73. So very sorry, but seek a second opinion on the prognosis. Best of luck! n/t

[Hekate]

74. I'm so very sorry to hear this. Damn, that's unfair. Just get a second opinion, though...

[greatauntoftriplets]

76. I'm so sorry to hear of your diagnosis.

As others have said, get a second opinion.

[Hoppy]

77. So sorry about your diagnosis..

Use it to give yourself permission to do as many of the things now, that you were going to do after ( whatever the reason was that you haven't done them already).

[NoJusticeNoPeace]

78. Dont know what to say. I dont even know you and I still just dont have words.

So so so sorry

[MannyGoldstein]

79. My heart is with you.

Last edited Fri Apr 24, 2015, 04:32 PM - Edit history (1)

Such a thing to find out.

I'm not sure where you're located, but I have connections into the Harvard Med School hospitals and would be happy to make some phone calls. In particular, I know people doing very advanced work in radiation therapy that I believe is used for this type of cancer. No guarantees of anything, but I'm happy to try. In any case, as a member of the medico-industrial complex myself, I have seen that the top hospitals are much better than typical hospitals for this type of thing - it could be very helpful to get to Mayo, Cleveland Clinic, Mass General, Brigham, etc, or the Boston VA if you're a VA patient (it's linked into Harvard).

Also, a family member of mine is a psychologist who specializes in patients with life-threatening or terminal diseases. I don't know where you live, but I could ask her if she knows of any good people to help out in your area.

Peace to you. Always feel free to message me if I can be of any help.

[Jefferson23]

108. That is a beautiful and generous post, Manny. I am sure he'll appreciate it. n/t

[MannyGoldstein]

121. Thanks, but it's only a few minutes of emails and phone calls

Actually selfish:

"When I do good, I feel good. When I do bad, I feel bad. That's my religion."
- Abraham Lincoln

[Jefferson23]

122. You're stuck with it, sorry..you're a mensch, Manny. n/t

[LiberalAndProud]

80. I cannot imagine your experience.

My niece used the time after she knew she would die soon to touch base with all of the people she cared about. I cherish the memory of that long phone call where we talked about everything and nothing.

Here's a cyberhug for you, (((( Douglas Carpenter )))). I'm so sorry you have such sad news.
Thank you for sharing this part of your journey with us.

[awoke_in_2003]

81. I am going to pile on here

Go to a pro and get a second opinion

[sabrina 1]

82. Douglas, I am so sorry.

That is such sad news. I don't know what to say except there are miracles sometimes. So that is what I am hoping for.

[GoneFishin]

83. Sorry to hear. ONE IMPORTANT NOTE. As I understand it, Oncologists cannot discuss any treatment

other than chemo, surgery or radiation or they can risk losing their license. So if you decide to investigate supplementary therapies such as dietary changes etc.. you need to find outside sources for information.

[N_E_1 for Tennis]

84. Enjoy every day you open your eyes.....

Then it's a great day!
I have been told many, many, many times my life is short.
I laugh and then I cry.
But then I go to bed, cause I have to and leave life on the back burner.
Then I wake.... I see my lover and realize,
LIFE WILL NEVER BE SO GREAT!

Being told you only have so long on this earth makes you appreciate the mundane every day life.

Good luck and hope you feel better.

Love, Greg

[Hiraeth]

85. I am new here but, this thread has really touched my heart. I will be praying for you.

[brer cat]

86. The diagnosis is a downer

not you, Douglas. We are here to listen any time you need to chat, rant or cry. The porch light is always on.

There is some good advice upthread. I hope some of it will benefit you.

[LoisB]

87. Very sad news. Don't give up. Get a second opinion. Hugs and positive energy

coming your way.

[WillyT]

88. Damn... I'm Very Sorry...

[sibelian]

89. Look after yourself, Douglas

(((Douglas Carpenter)))

[rhett o rick]

90. My best to you. nm

[cui bono]

91. So sorry to hear that Douglas.

Please do get a second opinion.

And please look into alternative treatments such as cannabis. There are a lot of success stories from people using cannabinoid oils. And diet can play a part as well. Eliminating sugar and animal proteins is supposed to help.

I can't imagine how you must feel with such a prognosis, but I hope you find a way to keep your head up and keep enjoying your life.

[Curmudgeoness]

92. Don't you worry about being a downer.

As you can see, there are a lot of supportive DUers who wish the best for you. I am sure that you will find a way to deal with this, whether it is fighting it with the help of some of the best cancer treatment centers, or vowing to live every day to the fullest knowing how precious each day is. Dealing with this is individual and what will work for me may not work for you. Find what gives you strength. DU has a group for cancer support, you might want to join them because they know better than anyone what you are going through.

I am sorry that you have this weight to bear, and I wish you luck and strength in dealing with it.

[Electric Monk]

93. Dr. Oliver Sacks was recently diagnosed with terminal cancer. Here's what he had to say about it.

http://www.democraticunderground.com/11462029

My Own Life
Oliver Sacks on Learning He Has Terminal Cancer

By OLIVER SACKS

(snip)

Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life.

On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.

This will involve audacity, clarity and plain speaking; trying to straighten my accounts with the world. But there will be time, too, for some fun (and even some silliness, as well).

I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. I shall no longer look at “NewsHour” every night. I shall no longer pay any attention to politics or arguments about global warming.

This is not indifference but detachment — I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future. I rejoice when I meet gifted young people — even the one who biopsied and diagnosed my metastases. I feel the future is in good hands.

more
http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html

[SHRED]

94. Please explore cannabis oil combined with...

...diet (no sugar) and exercise.

http://onpurposemagazine.com/2014/06/17/tommy-chong-on-fighting-cancer-with-cannabis-oil-and-too-much-sugar-in-the-diet/

[lexington filly]

95. You've gotten the news so many of us fear the most: cancer.

I can't know how awful you must feel and overwhelmed you must be. And I'm so, so sorry. It's okay to grieve for a few days and let it sink in. Yet it's too early to give in to total despair and you aren't totally powerless. Maybe arm yourself by researching your cancer and getting all the information out there. In addition to the usual radiation and chemo, I've read about genetic treatments and research studies patients can sometimes get in on and get the newest treatments.

All I'm saying is there are reasons to be hopeful. I know we each must make choices based upon what's uniquely best for every individual. Some choose to get every treatment out there and others choose no treatment. There's no right or wrong to me. Just what you decide is best for you. Again, I am really sorry about your diagnosis.

[busterbrown]

96. U are in no way a downer..

Just do the best u can... No expectations... Just be as positive as possible..
It works!!

[cp]

97. Thank you

for letting us know and sharing with us.

There's much wisdom in these posts and much love.
I hope you feel how much love is coming your way.

Get more information. Get a second opinion.

Keep your friends close.
Keep talking.
Keep your DU buddies posted.
We love you.

[hifiguy]

98. You're not a downer.

I lost my oldest friend to esophageal cancer not two years ago and he was only 53. He just pushed ahead, checking off the things he most wanted to do before he no longer could, and achieved almost all of them. He was a tough bird and man, did he have a lot of fight and grit.

[BigDemVoter]

99. I would DEFINITELY get a second and even third opinion. . .

You need to see an oncologist who specializes in esophageal cancer and then a cancer SURGEON. . . Don't let anybody try to fool you into seeing a general surgeon. . . . You might not have as bad a prognosis as you think. It is most certainly WORTH it. . . . Good luck!

[magical thyme]

100. stage 2 and even stage 3 include surgery in their treatment,

and a study published back in 2006 showed 51% 5-year survival for stage 2.
http://www.urmc.rochester.edu/news/story/index.cfm?id=1074

Also, studies have shown that removing lymph nodes (assuming it has spread to your lymph nodes) can increase survival in esophogeal cancer.

The survival rate -- and effectiveness of surgery -- really depends on whether it is squamous cell (smoking-based) or adenocarcinoma (acid reflux-based).

So you need to get yourself to an oncologist. Your gastroenterologist shouldn't have said some of the things you wrote, because he doesn't specialize in cancer and probably is not familiar with recent treatment developments.

[TexasMommaWithAHat]

115. I agree with your post!

And remember that any study published in 2006 will not include any of the newer, better treatments that might be available now!

[Dont call me Shirley]

101. Keep up hope Douglas. We are all here supporting you with uplift and healing energy.

Hope. Keep searching for healing solutions, they are available.

[CountAllVotes]

102. My cousin was dx'd with the same thing

and that was about 2 years ago and yes, he is still alive and yes, he DID beat the sh*t.

Don't give up! You never know what God's plans are for you.

[Thespian2]

103. I am very sorry to read this.

Life often kicks us when we least expect it. Blessings to you.

[Liberal_in_LA]

105. I am so sorry

[MissDeeds]

106. Dear Douglas

Last edited Fri Apr 24, 2015, 09:16 PM - Edit history (1)

I am so very sorry for this diagnosis, but please do not let it define you or your hopes for longevity. As many here have said, there are many, many cases where the "experts" have been proven wrong. Take care of yourself, reach out to your friends here and elsewhere, and remain optimistic. I have heard countless stories of people who were given months to live and are still here years or decades later. We all come with an expiration date. No one can definitively say what that is. Stay strong, fight like hell, and know that your DU family is here for you.

[swilton]

107. PLEASE READ

I have had (close to personal) experience with this condition in that my ex-husband was diagnosed 4 years ago with stage 2 esophageal cancer.

He had chemo and radiation first and the intensity of the toxicity (sort of trial therapy) nearly killed him. But he survived to have the surgery - removed about 8" of his esophagus (4" for the tumor and 2" on either side). That procedure was essentially two surgeries: the first to set up an alternative plumbing apparatus and the second to remove a portion of the esophagus. I have heard for some people it's a choice of between losing one's voice or losing one's ability to eat orally. He has the capacity to do both now.

Side effects - he must eat small meals and he has to watch the acid reflux. There are a lot of treatments for the acid reflux that involve life style changes watching high acid foods (i.e., tomatoes and red meat) and eating acid reducing foods (ginger comes to mind). He also has to sleep with a special pillow. He has gone through the chemo-radiation and also the surgery which also had its ups and downs. He is still alive and works (will be 60 years old in October). After going for very periodic check-ups/endoscopies, he is now considered cancer free. Where there is a will there is a way.

My ex-husband is one of my best friends and I am glad he has been around for these years. Stage two means that this is considered treatable and that the doctors and specialists can go for a cure.

Please think about this - and my best hopes are with you and your family.

[Arugula Latte]

119. Great information.

I'm glad your ex is now cancer free.

There is definitely hope for Douglas! His doctor should have referred him to an oncologist and refrained from commenting on D.C.'s prognosis, in my opinion.

[hrmjustin]

109. I am so sorry you are going through this.

[democrank]

110. I`m sorry for what you`re going through

but just don`t give up. Keep going, keep trying, keep living. Treat every single day like it`s the greatest gift you`ve ever been given....because it is.

I truly understand how difficult this is, but just keep living.

~PEACE~

[Voice for Peace]

111. I would do some serious research into cannabis oil.

There are remarkable stories coming out all the time,
from skin to lung to brain cancers being cured. Not
quackery; there will be studies.

Research, research, research, research. Learn as
much as you can, take heart every day you have.

If it's not your appointment time, there will be a way.

I wish you much strength and courage, I'm sure it is
terrifying; but be confident the strength and courage
are already there in you.

They'll be coming to your aid; they are your friends,
your own, inside of you; and they love you.
They will help you.

Not so helpful all the noisy neighbors in our heads;
but the ones in our hearts, seek out those friends.
Help and wisdom is there.

[marym625]

113. I'm so sorry

My heart and thoughts go out to you.

The only positive thing I can say is, whether you decide to fight this or not, live each day you have left as best you can.

I am truly sorry.

[CrawlingChaos]

116. As a longtime fan of your posts...

I want to say that I hate that this is happening to you. I wish I could say something that would in some way relieve the stress and pain that goes with facing something like this. All I can say is that clearly a lot of people here care about you, including myself.

Once the shock has worn off, I hope you will heed the wise words echoing throughout this thread and explore your best possible treatment options. You may well have many, many good years ahead - with a really top notch medical team and the right treatment, that is a very REAL possibility. Never take any one doctor's word as gospel. We all know people who've been given news like yours and defied their initial prognosis.

You are here with us now and hopefully for a long time to come. Do everything you can to be well. Please.

[niyad]

117. so very sorry to hear this, douglas. but, before you do anything else--get a second opinion.

as others have pointed out, doctors are not gods (or, as I put it, m.d. does NOT stand for medical deity)

[Arugula Latte]

118. (((Douglas)))

[msanthrope]

120. You need an oncologist, stat. And you will be in my thoughts. nt

[LovingA2andMI]

123. Praying for you.....

[MADem]

124. I have two relatives who got that diagnosis.

One was stage 4 and that didn't end well. The other got a stage 2 diagnosis and had surgery and chemo and is doing very well.

That was two years ago, and the latest check up looked good.

Don't give up the ship. Explore all options. Don't be afraid to look for a 2nd or 3rd opinion.

Best of luck to you. I hope you beat this.

[historylovr]

125. I'm so sorry.

[dflprincess]

127. My friend's husband had a similar diagnosis

and all I can advise is get another opinion from the nearest teaching or research facility.

My friend's husband had similar diagnosis and after some reading she got him to the Mayo Clinic (it helps that we all live in Minnesota). There was a very drastic surgery and a very, very long road but it's nearly 10 years and he's cancer free and going strong.

Sending good vibes your way.

[shaayecanaan]

128. sorry to hear

I don't wish to sound presumptuous but if you do need any money and you are happy to post your PayPal account or whatever perhaps we can all send you a few bones to help out.

[Justice]

129. Douglas please see an oncologist and a oncology surgeon - you have real options, all is not lost

Others have said this but it cannot be repeated enough - go to a medical center/teaching hospital.

There is a surgical procedure that removes the esophagus and stretches the stomach to build a replacement. You wind up with small meals and some side effects but essentially a good life.

A second opinion is critical - my dad was diagnosed by a local hospital with esophageal cancer. I went with him to the surgeon - we heard the procedure.

He sought a second opinion at Mass General and they actually could not find any cancer - they said he had barrett's and is routinely
(multiple times a year) checked but they have never found any cancer.

[NRaleighLiberal]

130. I am so sorry, Douglas. You will be in my thoughts.

[MatthewStLouis]

131. Keep fighting. No one has all the answers when it comes to cancer. /nt

[Moostache]

132. Horrible news, I am sorry to hear it.

Best wishes and may you be the exception and not the rule.

Remember, we are all one second away from possible death all the time, its just a matter of what we do with those seconds we escape that make the difference. It won't help your recovery, but maybe focusing on the small wins every day can help give you some victories along the way.

Sorry if this is rambling and incoherent. I beat cancer once so far and live in constant fear of its return. My mother has beat it 5 times but it keeps coming back. I hope you have some success fighting it.

[brentspeak]

134. Hang in there

[blondie58]

135. (((Douglas)))

I am so sorry. The DU Community Has given you a lot of good advice.

I am so glad that Someone mentioned Cannabis Oil. It is legal in my State of CO and i think it is very positive.
All I can add is- Humor! Get as much of it as you can
And Meditation
Please post Ägain When you've conquered this.
And remember- doctors are not Gods. 💖

[Cali_Democrat]

136. Just know that you're not alone

[Skittles]

138. someone is always here on DU for you, Douglas Carpenter

please get ye to a specialist in this disease; do not give up

[AtomicKitten]

139. I had surgery for same about 20 years ago.

I had a brutal thoracotomy, 9 days total in hospital, 5 in the ICU. I was told to make arrangements for my kids. Scared the crap out of me. But I'm the lucky one as the lesion turned out to be benign. I get what you are going through now and am so sorry your diagnosis wasn't good.

Stay connected here for healing vibes. Best regards.

[emsimon33]

140. Cancer is NOT a death sentence

I sent you an email with links to a series that I just finished watching on the Internet.

I have spent the last 10 years becoming very familiar with effective treatments for cancer since in my mother and father's generation of siblings, all but the youngest (so far) have died from very rare and different cancers. Their grandparents and generations previously had lived and worked hard long into their 90s and even 100s, so the cancer and earlier deaths were new to my parents' generation.

After taking of my mother with multiple myeloma and then my father with pancreatic cancer, I have become disillusioned with standard cancer treatment in the this country and I urge you to read my DU email to you.

[NYC_SKP]

141. No words, just don't give up.

Be strong.

[LeftishBrit]

143. I am terribly sorry to hear this BUT please don't give up

You need to go to an oncologist, as others have said.

At Stage 2, there is treatment and definite possibility of a cure. Cancer of the oesophagus is typically discovered later than this - that is why it often has a bad prognosis. You were diagnosed relatively early.

I am sorry that you are dealing with this, but there is hope!

Sending all my best thoughts to you!

[proverbialwisdom]

144. ASAP, read "It's Not About the Bike." You will be inspired.

[center][/center]
[center][/center]
RECOMMENDED:

http://www.nlm.nih.gov/medlineplus/magazine/issues/summer06/articles/summer06pg6-9.html
http://www.livestrong.org

Crescent City Gold (DR. JOHN)

[center]

[/center]

Terrific advice upthread, Doug! I was treated at MSKCC (surgery, chemo, radiation) for 8 months in 2002. You will forget the bad.

Explore http://www.anticancerbook.com and http://www.anticancerbook.com/story.html despite this. How can nutrient dense foods, fitness, simple pleasures (joy/laughter/love/spirituality/music/art) during conventional treatment possibly hurt? Functional medicine + conventional? BOTH, afterward!

Living with uncertainty is annoying as f*ck, but uncertainty is a world we all inhabit, actually. Don't go negative. Unleash your inner badass and banish negativity just until tomorrow every day automatically for a year. Reconsider policy again, then.

I like your posts (many times a voice of authoritative reason amidst a whole heap of hysteria) and learn a lot from reading your perspective. Positive spin? Consider writing a book. The first person accounts I read while sitting in waiting rooms all helped me cope big time. Take notes. Tell it whenever you're ready. All the best, Doug!

I apologize in advance if my post elicits laughing emoticons in reply.

[madfloridian]

145. ....

I can send .

Wish I could do more. You are one of my favorite people here, and I feel so bad this is happening.

[Not a Fan]

146. Cancer diagnosis

I'll give you some links and you can read them or ignore them. These are just a very few of the medical studies available that confirm this information.

Multiple studies show that cancer patients with higher blood serum levels Vitamin D3 have better outcomes.

Multiple meta-analysis studies show that higher BS levels decreases All-Cause Mortality. (Including cancer patients)

Five Vitamins and Supplements actually worth taking - Smithsonian.

New study suggests low levels of vitamin D and beta-carotene are associated with risk for esophageal cancer

Sun exposure and esophageal cancer: Does vitamin D help?

Esophageal cancer - Vitamin D Council (non-profit)

New study shows high vitamin D levels increase survival of patients with metastatic colorectal cancer

Vitamin D Increases Breast Cancer Patient Survival

Vitamin D may increase cancer survival rates

Vitamin D and cancer

Meta-analysis of Vitamin D Sufficiency for Improving Survival of Patients with Breast Cancer - Anti-Cancer Journal

Low Vitamin D May Increase Ovarian Cancer Mortality Risk

Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention - Anti-Cancer Journal

Differences in vitamin D status may account for unexplained disparities in cancer survival rates between African and white Americans

Vitamin D Levels Increase Cancer Survival Length in Study

Chart - Disease Incidence Prevention by VD3 BS level (with Citation) Note the ranges given for Cancers.

And just because it matters - within the last two months, Alzheimer's Disease was added to the list of diseases that are known to be "latitude sensitive" (along with MS, Schizophrenia, Diabeties type I and others.)

Link between vitamin D, dementia risk confirmed

[midnight]

147. Hugs.

[Jefferson23]

148. In case someone hasn't read this yet. n/t