this is all knew to me and it came as quite a shock

[Douglas Carpenter]

A week or so ago I posted this thread in the General Forum about my diagnoses with Esophageal Cancer (Adenocarcinoma):

http://www.democraticunderground.com/10026558920

Although the diagnoses was made by a Gastroenterologist on the basis of an Endoscopy/Gastroscopy with a confirming biopsy.

Now in a few days I will be starting the real testing and real treatments which I'm under the impression will initially emphasize radiology therapy.

Unfortunately, I'm still waiting for my first appointment with an Oncologist. The talk with the Gastroenterologist was certainly worrisome enough.

The most reoccurring phrase I hear from friends and other is "Be Strong" and "Fight it." I guess I just don't know what those words mean. I suppose this is about the biggest thing that has ever happened to me.

I appreciate anyone's insights.

[olddots]

1. some of the doctors you will be dealing with ....

have very bad people skills which is part of progress in cancer treatment .

Get into a cancer group NOW ! not an on line group but a face to face group that helps each other get thru the medco bullshit you face .

[wordpix]

12. lol, the important thing is the result, not how "nice" the doc is

That being said, it's important to have someone you can work with. For example, when I told my oncologist that my first chemo round was horrible and I would not put up with that every round, he lowered my dose of one of the two drugs and that made a huge difference. He lowered twice more after that when I had other symptoms (stomach probs). This kind of cooperation on a doc's part is very important but a kind bedside manner isn't.

[Ruby the Liberal]

2. Douglas, I am so sorry to hear this

No clue how I missed that great thread. Just read through it and there is an amazing amount of support and great advice in there.

I am another to harp on the whole "get thee to an Oncologist STAT" meme. Are you in an area where you are close to one of the major medical centers? Thinking Sloan Kettering, Johns Hopkins, UPenn? I was treated at UPenn and they are amazing. A friend went through Sloan and can't say enough good things about them. Really sorry to hear that you haven't been able to talk with an Onco yet. People can repeat the definition in the pathology of a biopsy, but that doesn't necessarily give them the information they need in order to define a prognosis. My surgeon gave me all of the options that *he* could offer - it was the Oncology people that drove the decision making.

As far as "be strong" or "fight", in this context, I would take it to mean "be positive". When I was Dx, I was terrified. Boss let me go home from work early after I got the phone call, and I sat on the couch and just trembled. The next morning I woke up and realized that I have a decision to make. The cancer may own all of the oxygen in the room - but I get to decide how I am going to live my life. I started going out more - met a bunch of new people (not something I am normally wont to do) and had the best time of my life. That positive attitude (that I initially forced on myself) kinda took over. I felt my energy levels increase and my outlook wasn't bleak anymore. Little things quit bothering me - in the scheme of things.

There are probably tons of better definitions than that - thats just how I felt like I was "strong" or "fought" when dealing with the Dx. I didn't take it on directly (no way to do that), I just showed it I had better things to do than to let it live rent free in my head and consume every waking thought.

About your treatment protocols - who is driving those, and when do you find out what all they are going to try to target?

If you have someone who can go along on the original appointments with you, or if the treatment center has Nurse Navigators, I highly recommend that. There will be information coming at you like a firehose and your head will be swimming trying to process it all. Having someone with you to take notes is awesome because you can just listen to what they are saying and then process the information later. Thats one thing I didn't do enough of - ask for help.

Glad you checked in with the group. This is an amazing bunch of people who are very knowledgeable and supportive. Don't hesitate to ask questions as you feel comfortable.



Edit - Douglas, I just remembered. Are you still out in the Marriana (sp?) Islands? Can you get back stateside for this?

[Douglas Carpenter]

4. yes, I am still in the Mariana Islands

There is no oncologist here - or even on Guam. But arrangements are underway for me to go hopefully early next week to an American accredited super modern cancer center in Manila. This particular center has pretty much the same high quality level you would find in any western country.

[Ruby the Liberal]

5. Thats comforting to hear

How far is Manila from you - or will they create a treatment plan that can be administered locally? If they go with an aggressive chemo/rads plan, it could be several times a week for 5-6 weeks or so.

[Douglas Carpenter]

6. I expect to be in Manila for five to eight weeks. But truthfully, I don't know for sure because only

a Gastroenterologist has seen me so far. Manila is about 900 miles east of here. I gather that it probably will be an aggressive chemo/rad plan. I do have connections in the Philippines - so I will not be completely on my own.

[Ruby the Liberal]

7. Wonderful news

Glad you are able to commit that amount of time - especially so far. You will feel SO much better when you have a treatment plan worked out and loads of questions answered. It really is a huge relief to get to that stage because from that point on, your only 'job' is to show up and breathe and let them do what they are trained to do. Felt like a huge load was lifted off my shoulders when I knew all the decisions had been made and it was just go time.

[Douglas Carpenter]

8. thanks for the encouraging words

because I was for almost a year I was one of only two Respiratory Therapist in the Northern Mariana's - I have about three months of leave lime built up on my books - so I have the luxury of being able to afford the time off while my salary keeps coming. I guess I'm lucky in that respect.

[wordpix]

11. your job now is to focus on your health

unfortunately, that may involve an address change so you can be close to an oncologist/treatments but one thing at a time.

I left my job "temporarily" for surgery and to see how chemo went, but have not yet returned to work. Too involved to explain it all here but suffice to say that my focus on my health has allowed me to be (so far) cancer free 9 mos. after treatments ended. I had Stage 4 mCRC. I spend a lot of my day growing, chopping, preparing and cooking/baking almost everything I eat---100% organic---and exercising. So far so good, I'm very healthy and cancer has not recurred. Good luck, stay positive and keep us posted.

[Solly Mack]

3. I'll sign on to what Ruby the Liberal said above.

I allowed myself the anger and the tears that come with the diagnosis and treatment. Downright wallowed at times. Then I got angry with myself and kept moving forward, living my life instead of giving the cancer all the power.

Keep us posted! We're here, even if only as a shoulder and sounding board.

[sinkingfeeling]

9. I'm sorry. I'm a six year survivor of Stage IV tonsil cancer and know what you're in for.

First thing is to find an oncologist you trust. They might tell you to have all your teeth pulled, that you will get blisters inside your throat, you might need a feeding tube, and the radiation might give you 2nd. degree burns. And yes those are all possible, but every person will experience different sets of things. I had dental work done prior to starting my radiation and refused the feeding tube. It worked out for me.
Second, locate a chapter of SPOHNC. Support for People with Oral, Head, and Neck Caners. These groups are made up of people going through the treatments and those who have survived their cancers.
Third, I doubt that you will be finished in 3 years! I have a man in my support group who is 19 years out of treatment. There's another that survived 6 separate bouts with oral cancer! He's an all-star with the American Cancer Society. Go to a meeting and listen and learn. They can give you the scoop on the doctors and treatments.
Hang in there and get started on treatment.

[slipslidingaway]

10. Sorry you had to join this group and wishing you are on your way to Manila ...

where they can formulate a plan. You do have to be strong, but do not give up too easily either, take each day as it comes as there will be good and bad days.

[onethatcares]

13. best wishes and

please do check in here often. It's a roller coaster ride for sure.

[Tab]

14. Insights (?)

Sorry you have to deal with this diagnosis. I think it's safe to say most of it is a shock (maybe not in hindsight) but going forward, unless you're smoking 10 packs a day, you're probably not expecting anything negative, and of course it's a shock.

I would counsel not to get too overwrought. I don't know what you're doing right now, whether it's trolling the internet for diagnosis information (never a good thing if you want warm and fuzzies about a disease), or just quietly getting anxious, but cancer has the paradox of "hurry up and wait". I wanted to hurry up every minute and see where I was, but that was unrealistic - things take more time than you like (unless you have, unfortunately, something ultra-aggressive where you have zero time, but that's evident in a different way).

"Be Strong" and "Fight it" aren't so much encouragements to do something positive (although that's ALWAY'S recommended) as much as a recommendation to not just give into depression and give up or subscribe to an unwinnable plan of attack.

I have a "Livestrong" wristband. They'll give them to you for free or you can get one (apparently) at Radio Shack (not sure about after the bankruptcy) for a $. It's just a subtle reminder to not just give up on life but keep forging ahead.

I've had positive and negative things happen since my diagnosis, but I'm still playing the game. Sometimes it seems easier not to, but I can't really bring myself to hang it up. Things are still good. Not like they used to be, but different.

So keep playing the game for a while. You might be surprised.

Best to you. PM if you want to chat privately - I'm always open to that (not just you - anyone).

- Tab