Best Cancer centers in Washington State

jgwright

Well, just found out the worst today. I have stage IV esophageal cancer. The info came from Dr. Tom Tucker in Wenatchee WA. I want another opinion. As far as I'm concerned, that's the only smart thing to do. Recommendations???

--Jerry

LilChemoSmoker

Hi Jerry
My name is Michelle and I welcome you to the board. It is a love/hate thing really. We would love to think that no other person would be inflicted with this horrible beast. But we welcome you to the right place. You will find a wonderful family of others that are walking this journey with you. I am a caregiver to my husband Eric,(chemosmoker), and he was dx June 17th of this year with Stage IVb. It is a tough road, and YES do get a second opinion as the only hope for survival in this journey is to qualify for surgery and as far as I am aware there is no surgery option for stage IV. So get that second opinion! Others will chime in here soon to ad to your questions. I have no experience in your area of the country, so be patient, others will chime in. Best of luck to you and you have come to the right place. Also, it would help if you shared more about your dx process and how the medicos came to this decision for you.

Hugs,
-Michelle

chemosmoker

WELCOME and TELL US MORE!!
Jerry,
As I am sure you fixed it, it said BREAST cancer and so I am sorry that we all overlooked the post for a little while today, thinking it may have been a miss-post here on the EC board!

I welcome you to our family, much as I HATE HATE HATE to welcome anyone, like me, with Stage IV terminal EC cancer as a diagnosis.

I am with you 10000000%...Get not only a 2nd opinion, but a third and sometimes fourth is recommended as well. You want ALL the CAT, PET, LNA's and whatever else you can get to make sure that you ARE indeed stage IV so you know if you have a fighting chance at anything aside from palliative care, as I am in for.

I am 43, diagnosed in June of this year, given 4-6 months to live. I am almost past that now, I am not giving up. I have chosen to do NO chemo or radiation. Just to live my life to its fullest until I can no longer function.

We have a GREAT family here who can answer amazing questions, offer undying support, and become some of the closest friends you may never meet.

Tell us more. When did you know something was wrong? What led to your diagnosis? What kinds of tests have you had done so far? We want all the information we can get so we may be of most help to you.

God bless you, and I look forward to your next post. Look for William and Sherri to post you LOTS of needed information very specific to us Stage IV's.

-Eric

jgwright

chemosmoker said:

WELCOME and TELL US MORE!!
Jerry,
As I am sure you fixed it, it said BREAST cancer and so I am sorry that we all overlooked the post for a little while today, thinking it may have been a miss-post here on the EC board!

I welcome you to our family, much as I HATE HATE HATE to welcome anyone, like me, with Stage IV terminal EC cancer as a diagnosis.

I am with you 10000000%...Get not only a 2nd opinion, but a third and sometimes fourth is recommended as well. You want ALL the CAT, PET, LNA's and whatever else you can get to make sure that you ARE indeed stage IV so you know if you have a fighting chance at anything aside from palliative care, as I am in for.

I am 43, diagnosed in June of this year, given 4-6 months to live. I am almost past that now, I am not giving up. I have chosen to do NO chemo or radiation. Just to live my life to its fullest until I can no longer function.

We have a GREAT family here who can answer amazing questions, offer undying support, and become some of the closest friends you may never meet.

Tell us more. When did you know something was wrong? What led to your diagnosis? What kinds of tests have you had done so far? We want all the information we can get so we may be of most help to you.

God bless you, and I look forward to your next post. Look for William and Sherri to post you LOTS of needed information very specific to us Stage IV's.

-Eric

That would be BEST, not Breast...
Thanks for the welcome, Michelle and Eric.

Yah, it is the wonderful world of EC. Okay, although I put up the info when I first started, I'm happy to reiterate...

I just turned 65. Wonderful birthday present, eh??

Okay, back in May or so, I started having problems swallowing. Certain things like bread or too big of a chunk of meat would plug up my esophagus, and I would throw up. No acid or bile, so it obviously hadn't reached my stomach. I figured it was a hiatal hernia.

I went to my GP in June after school was out (I teach Industrial Electrical at a community college) and he set up an appointment with a surgeon who specialized in things like hernias. Only he was booked until mid-August. Well, hey, hiatal hernia, I can live with that...

Come mid-August, go in and have both an endoscopy and a colonoscopy. The bottom end looked good, but the esophageal-stomach interface was red and angry looking. He DID NOT do a biopsy, which NOW angers me. But because it seemed to be Bartlet's Esophagus, he scheduled an appointment with a Gastroenterologist (which I should have seen to begin with). Only HE was busy until October 11th. School started September 19th, and I just learned to take really small bites, chew well, and eat REAL slow. And of course I lost weight. This is great, I thought because I'd already been on a diet and had dropped from over 300 pounds to 270 in about a year. I'm now 245.

The gastroenterologist did another endoscopy and saw a walnut sized tumor and of course did a biopsy, which came back positive. Which set me up with a meeting with an oncologist with 27 years experience. He didn't like what he was seeing, so set me up for a PET scan for this last Thursday the 27th. When we went in for the follow-up, he said, "I'm afraid it's bad news. There is nothing we can do for you but make you comfortable. You can continue to teach until the end of the quarter, we'll put in a port, and set you up for radiation. I'm so sorry..."

And that's where I am right now.

Arrrrgh.

--Jerry

dodger21

jgwright said:

That would be BEST, not Breast...
Thanks for the welcome, Michelle and Eric.

Yah, it is the wonderful world of EC. Okay, although I put up the info when I first started, I'm happy to reiterate...

I just turned 65. Wonderful birthday present, eh??

Okay, back in May or so, I started having problems swallowing. Certain things like bread or too big of a chunk of meat would plug up my esophagus, and I would throw up. No acid or bile, so it obviously hadn't reached my stomach. I figured it was a hiatal hernia.

I went to my GP in June after school was out (I teach Industrial Electrical at a community college) and he set up an appointment with a surgeon who specialized in things like hernias. Only he was booked until mid-August. Well, hey, hiatal hernia, I can live with that...

Come mid-August, go in and have both an endoscopy and a colonoscopy. The bottom end looked good, but the esophageal-stomach interface was red and angry looking. He DID NOT do a biopsy, which NOW angers me. But because it seemed to be Bartlet's Esophagus, he scheduled an appointment with a Gastroenterologist (which I should have seen to begin with). Only HE was busy until October 11th. School started September 19th, and I just learned to take really small bites, chew well, and eat REAL slow. And of course I lost weight. This is great, I thought because I'd already been on a diet and had dropped from over 300 pounds to 270 in about a year. I'm now 245.

The gastroenterologist did another endoscopy and saw a walnut sized tumor and of course did a biopsy, which came back positive. Which set me up with a meeting with an oncologist with 27 years experience. He didn't like what he was seeing, so set me up for a PET scan for this last Thursday the 27th. When we went in for the follow-up, he said, "I'm afraid it's bad news. There is nothing we can do for you but make you comfortable. You can continue to teach until the end of the quarter, we'll put in a port, and set you up for radiation. I'm so sorry..."

And that's where I am right now.

Arrrrgh.

--Jerry

Stage
Hi Jerry,
it infuriates me to see you had an endoscopy in Aug and they found red inflamed barretts. That should have started ringing alarm bells, as if it was only barretts then the biopsies should have shown high grade displasia for it to have converted to inoperable ec within two months.
You need your oncologist to tell you what stage you are. It should be T?N?M?. Stands for tumour, nodes involved and any metatsis? When you have those numbers then you will know if you are inoperable or not. A walnut size seems quite small in my way of thinking.
There are a lot of people on this board with a lot more knowledge than me. Please find out what your TNM is and get back to us. There are a lot on this board who will be able to give you sound advice.
Danielle

LilChemoSmoker

See my post on your other thread...
Hi Jerry,

See my other post on the thread I created for your questions. I do hope you find as much information as you can in a short amount of time. Sounds so infuriating to read how complacent your docs were in the beginning. You should have been referred to the GI first!

Hugs,
-Michelle

jgwright

LilChemoSmoker said:

See my post on your other thread...
Hi Jerry,

See my other post on the thread I created for your questions. I do hope you find as much information as you can in a short amount of time. Sounds so infuriating to read how complacent your docs were in the beginning. You should have been referred to the GI first!

Hugs,
-Michelle

I Agree...
Don't like lawsuits, myself, but it almost smacks of malpractice. The Gastroenterologist was quite upset that he didn't see me until October.

--Jerry

LilChemoSmoker

jgwright said:

I Agree...
Don't like lawsuits, myself, but it almost smacks of malpractice. The Gastroenterologist was quite upset that he didn't see me until October.

--Jerry

Yeah it sucks, but...
Jerry,

I know you probably are right and have a slight chance at a malpractice case (slim though) I would focus on the next step for your health. This is a beast of a cancer and doesn't leave much room for a cushion. I hope that Monday brings a lot of phone calls that set up your next target for answers. In my opinion this needs to be a surgeon to get a second opinion. He is the only one that can save your life! Many oncologists can work with him for your cure if possible, but only few surgeons can perform a successful surgery for this type of cancer. It has to be a DAMN good Thoracic Surgeon whom performs several of these type of surgeries a week, not a month! The two best surgeries I am aware of are The Ivor Lewis Method and the MIE or Minimally Invasive Esophagectomy. Make sure your Surgeon of choice has performs several of these a week as the present with their own unique set of issues if not done properly.

Regards,
-Michelle

mrkokomo

Welcome Jerry
I live in Washington down by the mouth of the Columbia River. I was DX last May and underwent an Ivor-Lewis esophegectomy in August. The procedure was done at Virginia Mason in Seattle by a Dr Low. He is a first rate surgeon and has done hundreds of this procedure.

I have nothing but good to say about his staff. The ward staff were fantastic, they leaned on me to do all of the required post surgical excersise in order for me to recover rapidly and I was able to go home on day 7.

I recommend Virginia Mason Medical Center and Dr Low.


Larry ~~~

chemosmoker

Welcome here too...and other posts are okay; I answered both...
Jerry,

Other than the waiting for the right test and biopsy and lost time, you and I (and 1000000000 others here) have the exact same story so sadly. Except I have a cantaloupe and you have a walnut, and I have them on and through the esophagus and stomach wall too, and wrapped around my aorta and nerves and vessels, and cannot be resected. And now I have 'mets' (as we call metastasis) to spine and bones already we are pretty sure, although not confirmed yet.

Click on any of our pictures to the left of posts to read our stories and about me pages, in case you didn't know this.

Lawsuit if you want, I would focus on living.

Are you going to do chemo and radiation since it sounds like you may be stage III or maybe even better?? Or if too late, pallative care now?
How do you FEEL?
I can still eat and all, except the very things you mentioned that got you to the hernia idea, and I can eat those if I chew well.
So what is your plan and when do you go next to get that stage and node information and all?

Welcome for what that word is worth in this arena. I am glad to meet you and we are brothers in every sense except you are a little older, not much, but that's our only dissimilarity.

What's your family and caregiver situation, if you don't mind my asking. I am just so sorry you have to be here with us.

God bless and hang on..this is the worst ride no one ever dreamed of, but there are good things like appreciation for minutes instead of years and an intensity and focus on love and life like no other group of people imaginable. We all learn fast around here, as we have no time not to.
Tell us more...

-Eric

jgwright

chemosmoker said:

Welcome here too...and other posts are okay; I answered both...
Jerry,

Other than the waiting for the right test and biopsy and lost time, you and I (and 1000000000 others here) have the exact same story so sadly. Except I have a cantaloupe and you have a walnut, and I have them on and through the esophagus and stomach wall too, and wrapped around my aorta and nerves and vessels, and cannot be resected. And now I have 'mets' (as we call metastasis) to spine and bones already we are pretty sure, although not confirmed yet.

Click on any of our pictures to the left of posts to read our stories and about me pages, in case you didn't know this.

Lawsuit if you want, I would focus on living.

Are you going to do chemo and radiation since it sounds like you may be stage III or maybe even better?? Or if too late, pallative care now?
How do you FEEL?
I can still eat and all, except the very things you mentioned that got you to the hernia idea, and I can eat those if I chew well.
So what is your plan and when do you go next to get that stage and node information and all?

Welcome for what that word is worth in this arena. I am glad to meet you and we are brothers in every sense except you are a little older, not much, but that's our only dissimilarity.

What's your family and caregiver situation, if you don't mind my asking. I am just so sorry you have to be here with us.

God bless and hang on..this is the worst ride no one ever dreamed of, but there are good things like appreciation for minutes instead of years and an intensity and focus on love and life like no other group of people imaginable. We all learn fast around here, as we have no time not to.
Tell us more...

-Eric

Eric my brother...
Yah, lawsuit is a waste of time and effort, there was no ill-intention on the part of the doctors, just something beyond their competency as this IS a rare form of cancer.

I'll will be heading over to Virginia Mason, as one of the elders in our church had his cancer treated there (and I never knew he had cancer...) and recommends it highly.

I have a wonderful support group of wife (Tonnyo), friends, and family, and for that matter the people I work with at Big Bend Community College who are donating sick leave to me to continue a salary after my sick leave is eaten up. The outpouring of love and concern is almost overwhelming.

My wife has suffered from depression for many years, although in the past decade anti-depressants have made her a much happier girl. So this hasn't helped... One of the forms I filled out for the clinic asked about my stress level, between 0 and 10 (10 being the worst case). I put mine at 2, an honest answer, but I continued "Spousal Distress -- 11"

-Jerry