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Diagnosed April 8 with BOTH Adenocarcinoma of Rectum and Adenocarcinoma of Esophagus. Started Chemo / Radiation 5/7/09

Fernando H's picture
Fernando H
Posts: 32
Joined: May 2009

I've posted this on the colorectal board as well

On April 7th, 2009 I had rectal bleeding from 7pm thru 5am prompting my visit to a gastroenterologist on the morning of the 8th. I had dismissed prior blood in stool as being related to hemorrhoids for over a year. Aside from an obvious need for a stat colonoscopy, regular questioning by the physician's assistant regarding my heartburn I had for over 15 years made for an investigative (and life saving) upper endoscopy. I had been simply popping antacid tablets successfully quenching the fire. It is almost as if the major bleeding I had was a swift kick in the rear to go do something about it. Thanks to that, the esophageal adenocarcinoma was found early on.

4/9/09 Colonoscopy confirmed rectal tumor, Endoscopy revealed suspect tissue near a section of Barrett’s Esophagus. Biopsies taken of both.

4/9/09 Gastroenterologist immediately sent me for a CAT Scan that same afternoon.

4/10/09 Biopsies came back positive for two different Adenocarcinoma's (Rectal and Esophageal) just 10 days shy of my 40th B-Day!

4/14/09 Endoscopic Ultrasounds of Rectum and Esophagus at South Miami Hospital resulted in prelim staging of T-3 for both tumors. No Metastasis, No Lymph node involvement confirmed.

Then the blur of multiple doctors’ appointments began:
Clinical Oncologist, Cardio Thoracic Surgeon, Radiation Oncologist, Colo-rectal Surgeon and second opinions for each specialty at University of Miami Hospital's Sylvester Comprehensive Cancer Center.
Differing opinions abound on my rare situation of treating these two different cancers at the same time. Variances from Standard of Care for each malignancy were offered by each physician. Head spins while attempting to earn an overnight PhD researching the internet for answers.

Surgeons have differing surgical approaches. Some offer minimally invasive laparoscopic approach. Others favor traditional open approach.

4/27/09 UM Sylvester repeats Endoscopic Ultrasound due to discrepancies of measurements and exact location of esophageal tumor as reported by South Miami Hospital.
GREAT NEWS: esophageal tumor found to be a T-1 (not T-3 as SMH had reported)!
This means no radiation to the chest!

More and more meetings to arrive at treatment plan. My case is discussed in numerous cancer boards in multiple hospitals. (Yes, I obtained a 3rd opinion as well from the Cleveland Clinic in Weston, Fl)

5/1/09 Port placement in upper chest for chemo

5/5/09 CT simulations complete. Permanent tattoos for pelvic radiation.

5/7/09 Chemo and Radiation begins (just 30 days from diagnosis):
FOLFOX of 5FU via pump on port 24/7 and Oxaliplatin added once a week
Radiation of rectal tumor 5 days a week (28 treatments)

These "C" things have received their eviction notices. Sheriff will be escorting all malignancies out with no mercy!

I'm ready for this! Hit me with treatment hard! Gotta get over both of these "C" things soonest.
Wonder how my body will tolerate treatment.
Doesn't matter though...
LET’S DO THIS!

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Fernando,
I hope your first day of treatments went well! It is good that you are in such good spirits during this, that is the only way to be when battling this nasty thing! I am 24, and was diagnosed with stage 3 esophageal cancer back in October. I had an esophajectomy 10 days after diagnosis, they did not realize how big the tumor was, and then began treatments 6 weeks later. I am just finishing up my last round of chemo, had 4 rounds of chemo and 25 sessions of radiation/w/chemo. I was on EOX (Epirubicin, Oxiplatin, and Xeloda). For me the radiation treatments weren't too bad and didn't have a ton of side effects other than fatigue, with chemo I was nauseous for a bit after my injections and had some cold sensitivity on my fingers and mouth. I have a CT on the 28th to see if all looks ok, and then will have my port removed...they like to leave it in for a year, but I want it out!! I hope this finds you well and I wish you the best!
Cathy

Fernando H's picture
Fernando H
Posts: 32
Joined: May 2009

I will need an esophajectomy after the rectal resection. Alot of things need to happen in a coordinated fashion to make it all work. There are many specialists putting egos aside and agreeing on a way forward for my sake. I know they will all do the right thing.

I don't mind the port, but it actually bothered more to tap into than the usual vien tap by a phlebotomist. Tonight will be my first nights rest after first day of treatment. I am bushed.

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

The esophajectomy surgery went a lot better than I had expected it to, I was just in the hospital for 7 days, and my husband stayed home with me for the first week I was home, then I was able to get up and around on my own; I had a feeding tube for 5 weeks, which wasn't as horrible as I thought either...I'm glad I had it. I'm sure your doctors will do the right thing and get you taken care of!! I definitely agree about the port hurting worse than the typical vein. I hope you got some rest!!

Cathy

Fernando H's picture
Fernando H
Posts: 32
Joined: May 2009

Cathy,
Were you able to get around with the feeding tube, such as working and other daily activities?
How long did it take to start eating again?
I guess they left the feeding tube in until you could present with no trouble with the intake of solid food, right?

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Fernando,
I could start sipping water after about 4 weeks or so, and when that went ok I went to liquid, and then after a few days of that I started to transition to normal food, the tube was removed just a couple days after starting to eat solids . I was just on the feeding tube at night, so I was able to move around my house and such during the day without being hooked up to the darn thing, my husband hooked it up for me every night and gave me my meds through the tube, but it's very easy to do and take care of yourself after the nurses show you how to do it. Beginning to eat again really went well for me, I couldn't eat nearly as much and got nauseated at times, but compazine, ativan, and zofran helped with that, and the nausea could have been due to the beginning chemo sessions as well. When I had the feeding tube, it was still during that time period where they don't really want you doing much so you can heal, so it didn't really effect anything. I am a teacher, so I've been on disability most of the year due to surgery, and then having treatments out of town (4 and a half hours away) and low blood counts and not being able to be around the illnesses of the little ones. If my treatments would have been in town and my counts wouldn't have been low, there's no reason I wouldn't have went back to work after 8 weeks after surgery though, so if you're ambitious and ready, you can do it!!!
How is your first couple days of treatment going for you??

Cathy

Fernando H's picture
Fernando H
Posts: 32
Joined: May 2009

tube recovery sounds very do-able. Thanks for your explanation. I think I am probably 4-5 months away from esophageal surgery. I will have the rectal surgery first.

I am in the office today, came in late (9am) as I was groggy this morning. I've got my fanny pack (CADD Legacy - Plus) delivering the 5FU. Felt a little nausea at 9:30, took the Compazine generic and am cruising along now. I've got radiation #2 at 4:45pm today.

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

the generic compazine is what has helped me the most throughout this, it is always in my purse just in case I need it while I am out and about. Although, this last round of chemo I have only needed to take it two days out of the last two weeks! It is good that you are keeping up with work and keeping yourself busy, that will make the next few weeks go by faster! When will your rectal surgery be? If you want any other info. on the esophageal surgery, ask away, mine was openly done, I had an incision from my breast bone to my belly button, and a several inch incision on my neck. Hope the rest of your day at work goes well, and good luck with your second radiation treatment!

Fernando H's picture
Fernando H
Posts: 32
Joined: May 2009

Thanks Cathy,
There are fueding ideas as to the approach on my esophageal surgery. One surgeon in South Miami Hospital recommends his laproscopic approach. One in UM Sylvester says he does the traditional open approach.

Can I bother you this weekend via a private e-mail on this site so as not to publicize your personal procedure?

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Not a problem at all, e-mail any time with any questions you may have, I may not be able to answer everything, but I'll do my best!! and, my home e-mail is kitten0385@gmail.com if you'd like to e-mail me there.

Cathy

judyloo's picture
judyloo
Posts: 39
Joined: Jun 2008

Fernando - hi, just a few words of encouragement; my husband was diagnosed with and had surgery for Esophageal Cancer (EC) just about one year ago and is doing pretty darn good. You are very lucky (in a sense ) that your were forced by circumstances to go to the the MD and they found your EC at Stage 1. Too often EC js not found until it is advanced or has spread to lymphnodes or other nearby organs. My husband had his chemo and Rt up front like you and then the esophagectomy; of course the port was put in prior to Chemo starting and he still has it today for blood draws and any procedures that require access. He also complained about the port but they gave him a cream with lidocaine to put on about an hour prior and it did help. Of course he found THE nurse that just always had the best technique accessing his port and had minimal discomfort after that. He/she is there find them and then ask for them after that! Don't be in a hurry to get rid of the port - chances are you will need it for sometime afterwards and the veins in the arms can take a real beating from chemo and multiple blood sticks. My husband could certainly tell you more about the surgical aspect (from a patients point of view) but he did have a feeding tube for meds/liquid nourishment in the hosp but before he was discharged they made sure he was tolerating fluids and a soft diet. At home the tube was used only for meds for a couple of weeks and then the doc took it out and my husband ate what he needed and slowly regained the weight lost during Chemo/Rt/Surgery. Patience was the key during recovery at home! And alot of support from me, family and friends. This is the time to ask for help for you and your wife - both of you are going through a life changing experience and she will be your helpmate every step of the way. But don't go it alone - either one of you.

Your attitude and spirit is one of the best things going for you - my husband also said lets get it done now! Never wasted time on why me and what ifs.......thats too much negative energy. One last thing its amazing what the human body can take and still bounce back from given a great medical team, time and patience and your kind of attitude. If your wife ever needs someone to vent with she can contact me - this in one journey I'm glad I was not alone on.

Judyloo

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