Please Help! Dad just diagnosed

paul61 said:

Your Dad is about to go down a road many of us have traveled

Julie,

I am sorry to hear that your Dad has received bad news. Please know that people who are diagnosed with esophageal cancer can recover, after appropriate treatment, and lead full productive lives. It is very positive that your Dad is young and in good health. You did not mention what symptoms lead him to have the endoscopy, but it is good that the test identified the issue, and that the CT scan showed no significant findings. That indicates that the cancer could very well be localized to his esophagus. Localized cancer is much easier to treat than cancer that has spread to the limbic system and other organs.

 Your Dad’s process over the next few weeks should include:

 1. Additional testing to complete the Staging of your Dad’s cancer. In other words, to determine the extent that the cancer may have spread and to define a treatment plan based on the “stage” of his cancer. The additional tests should include the planned PET scan and possibly an endoscopic ultrasound to image the depth the tumor has penetrated into his esophagus.

 2. Once staging has been completed a treatment plan will be defined. Typically treatment will include initial chemotherapy and radiation therapy to reduce the tumor in his throat and to kill any stray cancer cells that may be elsewhere in his system. In this part of the treatment cycle additional tests will be completed to access the progress of the treatments.

 3. The next phase of the treatment could include surgery to remove the remainders of the tumor in his esophagus. This surgery is MAJOR surgery and should be completed at a cancer treatment center that is experienced in treating esophageal cancer. MD Anderson is one of the leading centers for this kind of treatment and would be an excellent choice.

 

 When survivors first get a diagnosis of cancer they are very concerned about the time it takes to complete staging and start treatment. It is important that all the appropriate steps are taken to assure correct staging and this can take a couple of weeks but it is time well spent.

 Here is a reference to an excellent guide that can explain a lot about esophageal cancer staging and treatment: http://www.nccn.org/patients/guidelines/esophageal/

 

 Some suggestions I make to new esophageal cancer survivors:

 1. Have someone attend all doctors’ appointments with your Dad and take notes. Be sure to ask the doctor to explain any terms you do not understand.

2. Keep a notebook with notes from all previous doctors’ appointments ask for copies of all test results and keep them in the notebook.

3. Keep a list of all medications your Dad takes. I keep my medication list on several small business sized cards so I can just hand it to the doctor or nurse when they ask what medications I am taking.

4. Every place your Dad has appointments and tests will ask for the same information related to family history, mediations, allergies, and insurance. Having a sheet in your Dad’s notebook with all that information for reference can be helpful.

5. Once your Dad’s staging is completed and his treatment plan has been defined, contact his insurance company. Most insurance companies have advisory programs for complex cancer treatment plans like esophageal cancer and will assign a case worker to your Dad’s case to provide assistance and expedite approvals.

6. If your Dad has limited long term disability benefits, esophageal cancer is one of the cancers that is on the list of cancers that receive expedited approval for social security disability insurance.

 I know that this is a lot to take in all at once. But the good news is that there are people here who have been diagnosed with esophageal cancer, who have been treated, and go on to spend their lives with the people they love.

 

 For now it is important to stay calm and stay positive.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Four Year Survivor

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You have no idea how much your response means to me! Thank you so much for taking the time to respond and give me such great information on what we can expect.  He is scheduled for the PET scan this wk and the ultrasound in Baylor still waiting on appt. The only symptoms he had was no energy and just not feeling great. Went to pcp and was found to be anemic. He had problems with this as a child but this is the first time it was acknowledged as an adult. The Dr. That performed the egd said he didn't think this was causing him to be anemic, as it was not a bleeding mass and I'm not sure about sz I want to say he said 4 cm? I know he said the area was about an inch and a half. Anyway, yes this is so much to take in. I am so glad you have had success and I pray for many more healthy years. I will continue to check in on here, as it is the only thing keeping me sane right now. Again, thank you so much!

Deathorglory said:

Hello

Hello Julie,

 

Barrett's frequently goes hand-in-hand with EC, causing it a good chunk of the time.  It seems ridiculous, but the stereotypical guy eating buckets of rolaids for indigestion is actually at a fairly high risk of EC.  You don't mention a ton of specifics, But I'd like to share some thoughts based on what you've mentioned.  First, EC is a serious big deal.  It is best dealt with by folks who deal with it for a living.  Specialists like you'll find at a world class place like MD Anderson are infinitely better to work with than folks getting on the job training at your local hospital.  Second, as mentioned above, don't let your father go to appointments by himself.  He'll likely be in a shell-shocked state and would benefit from having someone else there to take notes and remember specifics for him.  Hopefully (and realistically from what you've said) your father will be in the early stages (stage I or II).  Those can be much more successfully treated than later stages.  The course of treatment may not be easy, but it can be much more effective.  It seems counterintuitive, but the more different treatments he is able to get, the better.  It's much worse when you get told that you are not a candidate for radiation or surgery.  It can be pretty rough dealing with the effects of radiation and surgery, but they have a whole lot better success rate than chemo alone.  If your father is able to have surgery, be prepared for a rough ride.  The surgery is major and comes with a host of side effects that you'll figure out as you go along.  There are a bunch of folks here who have experienced nearly everything that can come up, and they'll be glad to share their experiences with you (eat many small meals; jack up your bed; utilize the feeding tube; etc....)  Lastly, your about to go on a long, difficult journey.  Take some satisfaction from each of the small steps, because it can be a looooooooooooonnnnnnnngggggggg journey.  The fact that your journey is long is an indication that you're winning.

 

I wish you all the best,

 

Ed 

Thank you so much Ed. I have read so many different stories on here and I definitely see what your saying about a long journey. We go tomorrow for the PET scan and to a local oncologist for the results. Definitely turns your life upside down! I will be at every appointment for sure. Thanks for taking the time to respond. Julie

claxtonus said:

cancer treatment

Make sure your dad eat real good to build up the nutrients he needs before treatment. Chemo and radiation treatments were too soon for me and my weight was down to 114 lbs. from 150+ lbs. that I normally weigh. I am now 99 lbs. and they had to put a feeding tube in me because I did not want it. Now I have one and my weight is picking up. The chemo nearly killed me; the chemo distroy the good cell as well as the bad ones. When I lost my taste buds I lost my appetite and I got sick and nothing would stay down, even water so I was very dehydated. My taste for food has came back some after my 4th week of treatment. I have sickness medication before I eat and medication for sickness after chemo so I am feeling better and I have some energy now. I hope your dad does better but do remember Nutrience is very important. My throat cancer is at stage 4 and it is now eat,take treatments or die a miserable death. Family and friends support helps but when you feel that bad I just want lay down and die. I have to go 5 days a week and on wednesday each week I have chemo with radiation. I do blood work once a week so that my doctor can adjust chemo. Get a folder and keep a copy of all records to have with you everywhere the send him. All medicine that he is taking in that folder to have on hand to show if needed and you will need them. My daughter helps me and also all phone calls are directed to her because I am on morphine and that effects my mental ability. Everyday I see people coming and going and most of them happy and feeling fair to good about their treatment. I am here on this site to share my experiences and learn from others. I was surprised to find out I had cancer because all I had was a sore throat and the doctor I had treated me with anti-byotic thinking it was COPD. It took an ENT doctor  and byopsy to find it. Even tho it was dianosed late I have a 60% or more chance of survival. I wish my best for your dad and glad you are helping him

Thank you so much for the advice, I don't know what I would do if I hadn't found this site. I hate you are going through this....thanks again and I will have you in my prayers!