Update on my status

Gatoraid

My brother (jimsbrother) posted some information about me on 8/23. I was diagnosed with stage III adenocarcinoma. There is a 2 inch long tumor where my esophagus meets my stomach that is 2/3 obstruction my lumen (entrance to stomach). At Boston Medical Center I had a CT/PET scan and a Thoracic surgeon said that we need an ultrasound to accurately stage the cancer. Besides the tumor, 2 lymph nodes showed up; one very close to the tumor and the second a little farther away in the abdomen. This surgeon said that after staging he may recommend going straight to surgery, instead of radiation and chemo first, if the staging supported it. My internet research of radiation therapy and all the short range and long range impacts really threw me for a loop, so obviously going right to surgery appealed to me. Boston Medical Center is a good hospital, but it has a small cancer staff. For a second opinion I went to Massachusetts General which has a large and impressive cancer staff and cancer wing, with the latest technology, etc. There I met with a Medical Oncologist, Radiation physician and a Thoracic Surgeon. Their approach was to start right off with IMRT radiation and chemo, followed by surgery, etc. their belief is that the strongest chance at success is the aggressive approach and that the lymph node in the abdomen is far enough away that it is proof that my cancer is spreading. They are convinced that there is a 95% chance the lymph nodes are cancerous and that staging at this time would not change their approach. Both surgeons said they thought I was stage 3 without the ultrasound. Because little is known about adenocarcinoma (it was only 10% of the cases 20 years ago) treatments lean towards what they know about squamus cell; go with radiation/chemo first followed by surgery. I am still having the ultrasound and a byopsy of the 2 lymph nodes but at this point am siding with the Mass General approach and am starting IMRT radiation on 9/28 with chemo as my best chance going forward. As to what surgeon I chosse, I am still conflicted. I like the surgeon at Boston Medical better, but if I was hospitalized for surgery, Mass General is far better equiped for cancer. I am meeting with The mass General surgeon again when he is not seeing me when he is running from one surgery to another. From what I understand he is their strongest physician when it comes to laproscopic (minimally evasive surgery). The surgeon at Boston Medical Center has done more non evasive surgery than anyone else in Boston. When it's time for surgery, I hopefully will be able to make my best choice. Before embarking on this journey I am going away on vacation to Fort Myers Beach in Florida. At this time I have very little in symptoms and figure that this tumor has been growing in me probably a good year and was told that most likely a 2 week delay won't make a differance. The way I look at it is that right now my quality of life is good and who knows what the future will bring. I remain an optomist and probably a lousy speller. Thank's to everyone who responded to my brothers note. Best wishes to all of you.

Jim aka gatoraid

sandy1943

Glad to hear you are doing
Glad to hear you are doing your homework. This is something I didn't do when I was diagnosed. I had pre op chemo, then ivor lewis surgery in may 2008. I was stage 111 w. two lymph node involvement. I didn't have radiation. This is something I'm going to question when I go back. Since I have joined this site, I have learned a lot and have a list of Questions to ask my dr. I am now cancer free. I will have another ct scan in Oct. and have faith it will be the same.
Enjoy your vacation! You have no way of knowing how you will react to treatment. Keep checking in. There are so many people that have so much information and helpful hints.
Praying for you, Sandra

Gatoraid

sandy1943 said:

Glad to hear you are doing
Glad to hear you are doing your homework. This is something I didn't do when I was diagnosed. I had pre op chemo, then ivor lewis surgery in may 2008. I was stage 111 w. two lymph node involvement. I didn't have radiation. This is something I'm going to question when I go back. Since I have joined this site, I have learned a lot and have a list of Questions to ask my dr. I am now cancer free. I will have another ct scan in Oct. and have faith it will be the same.
Enjoy your vacation! You have no way of knowing how you will react to treatment. Keep checking in. There are so many people that have so much information and helpful hints.
Praying for you, Sandra

Thanks for your response
This has all happened so fast that I turned into an information junkie on this cancer and its treatments. Unfortunately, much of the information is dated, more focused on Squamus Cell Carcinoma and doesn't apply to me. For example, radiation side effects. When looking up IMRT which is what I will receive, it links to radiation side effects, which at times are for older radiation which is not as exact as what I will receive. Also, I found that many of the side effects like stricture will go away once surgery occurs. Take care of yourself....Jim

JimsBrother

Gatoraid said:

Thanks for your response
This has all happened so fast that I turned into an information junkie on this cancer and its treatments. Unfortunately, much of the information is dated, more focused on Squamus Cell Carcinoma and doesn't apply to me. For example, radiation side effects. When looking up IMRT which is what I will receive, it links to radiation side effects, which at times are for older radiation which is not as exact as what I will receive. Also, I found that many of the side effects like stricture will go away once surgery occurs. Take care of yourself....Jim

Your Chemo
Don't forget to call me tonight with the name of the chemo drugs you will be getting. (Now I have witnesses)

In your discussions with your doctors did they explain what criteria they use to choose the chemo drugs best suited for your type of cancer? I ask because I did a quick search and there are hundreds it seems of chemo drugs out there. How long before they expect to know if the drug is doing the job?

Your wonderful baby brother.

Gatoraid

JimsBrother said:

Your Chemo
Don't forget to call me tonight with the name of the chemo drugs you will be getting. (Now I have witnesses)

In your discussions with your doctors did they explain what criteria they use to choose the chemo drugs best suited for your type of cancer? I ask because I did a quick search and there are hundreds it seems of chemo drugs out there. How long before they expect to know if the drug is doing the job?

Your wonderful baby brother.

Gotch Ya
I'll call you from home around 12:30am.....promise.

With that thing on your lip, you appear to be much sicker than me!

Your older, wiser and definitly better looking brother

JimsBrother

Gatoraid said:

Gotch Ya
I'll call you from home around 12:30am.....promise.

With that thing on your lip, you appear to be much sicker than me!

Your older, wiser and definitly better looking brother

Shall we take a poll?
I will be waiting by the phone.

I believe I have a very good picture of you that I can show everyone and we can take a vote. On second thought, I wouldn't want to break any computers, or cause this site to crash. I will email it to anyone that asks though.

Hope you had a better day after the flat tire. Talk to you later.

Your really wonderful baby brother,
Rob

unclaw2002

Jim,
There is a great
Jim,

There is a great resource book - 100 Questions & Answers About Esophageal Cancer the doctor's at Sloan gave my dad (they did write it but it is very helpful). Some hospitals hand it out to patients but if you can't get it from your doctors you can order it from Amazon (cut and paste the link below)to take you to the description of the book and ordering information.
http://www.amazon.com/Questions-Answers-About-Esophageal-Cancer/dp/0763745707.

Scott Hamilton also has a great site I think William directed you to. One thing to discuss with your doctors are the side effects and how well you may or may not be able to tolerate them. For instance my father has diabeties so they did not want to prescribe certain classes of chemo drugs that were very hard on the kidneys, others may have heart issues, circulation issues --- so those things should be discussed when deciding on the combination. This really isn't a one size fits all.

Good luck and welcome to the family. I know it really isn't where you would want to be but believe me the folks on this website have been lifesavers, shoulders to cry on and provided words of wisdom and comfort when needed.

Best,
Cindy

llamp0922

Hi Jim,
Sorry that you are
Hi Jim,

Sorry that you are joining the ranks of members here, but hopefully you will be able to find support and information from these very knowledgable folks.

I saw that you are newly diagnosed from the Boston area. I applaud you for taking the steps to get a second opinion. MGH is a remarkable cancer center. The care is intimate and personal, despite its large size.

The consult that you mentioned was pretty overwhelming. That is the way that MGH does things. Those physicans know there stuff and give a comprehensive game plan from day one. The endoscopic ultrasound that you mention should be a great resource. I went in to have one, but the doctor couldn't get the instrument past my tumor. The thoracic surgeon couldn't place my g-tube via endoscopy, so I had to have it inserted via an abdominal incision. He did that at the same time that he inserted a tracheostomy, since the tumor had blocked 50% of my trachea and radiation was expected to swell the tumor before it reduced it.

I hear your anxiety about radiation treatment. I got the best comment from my radiation oncologist when I started whining about him extending my radiation treatments from 36 to 39. He looked me in the eye with his gentle way and said, "I cure people with this treatment." I snuffed up my exhausted, miserable tears and kept moving forward. I did radiation concurrent with chemo. It was quite challenging. I got sick. A lot. It was a very tough few months. I completed treatment in November of 2007. I go back in October for my 6 month follow up CT scan. I always had a 5 minute commute to work prior to having cancer. My journey to Boston each day could take 4 hours, round trip. I believe that it was worth it!

Feel free to contact me if you wish. You need to focus on the success stories. Stay away from the bad news. Always keep positive thoughts!!! Go to Ft. Myers...enjoy!

Unknown

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