Husband newly diagnosed

Some things to consider in advance of your first appointment

Hello Kymberlyn,

Some things to consider in advance of your oncology appointment,

I know how frightening it can be to have your doctor tell your husband “you have esophageal cancer”. I first heard those words in November of 2009. The next three weeks were filled with tests; and the difficult wait for results. The original endoscopy was followed by extensive blood tests, CT scans, another endoscopy with ultrasound, biopsies, and various exams by oncologists and surgeons. It seemed like getting treatment started took forever. All I wanted to do was get the cancer out of me!!!

It has now been ten years since that difficult start. I will not suggest that the surgery and chemotherapy that followed were easy; but they are survivable, and I am now back to living my life as before, with some lifestyle adjustments as a result of surgical changes.

Some things I learned as I went through the process:

Getting ready:

Whenever possible have someone attend doctor’s appointments with your husband and have that person take notes. You will hear lots of words you will not understand in a very emotionally charged situation, and it is helpful to have two people listening and recording.

Always ask the doctor to give you a few minutes to review your notes at the end of the appointment to identify any questions or terms that require explanation.

Keep a notebook of all appointments. Ask for printed copies of all test reports and keep them in the notebook for reference in future medical appointments.

Have your husband carry a list of all medications that are prescribed for him and dosages in his wallet. I carry several of them in my wallet on small business card size notes so I can just hand them to medical professionals when they ask for a medication list. Be sure to indicate any medication allergies in red on the card.

Ask if the medical facility where he will receive treatment has a patient portal for access to appointment and test information. If they do it can save a lot of time dealing with administrative items.

The Esophageal Cancer Awareness Network (ECAN) has excellent informational pamphlets on esophageal cancer. Consider contacting them and obtaining some of their informational materials. It will be helpful in telling your family and friends about your battle. Esophageal Cancer is not very common and not well understood even by many medical professionals. Here is the URL of their website: http://www.ecan.org

Your friends will ask how they can help. Don’t be afraid to ask for help with shopping, child care, cleaning, meals, and farm work. You have to be specific; they want to help but don’t know what you need, and don’t want to be intrusive. After spending a long day in testing appointments or at the chemotherapy center you won’t want to spend an hour fixing a meal, having one waiting for you is very comforting.

Ignore the statistics you find about esophageal cancer survival rates on the internet. They are often dated and do not include the impact of recent treatment advances. In addition, each cancer patient has a different age, health profile, and support system background so everyone is a “statistic of one”. A positive attitude is very important. There are lots of survivors of this disease

Some questions for your oncologist:

1.  What kind of esophageal cancer do I have?
2.  What is my specific staging T?? N?? M??
3. What tests have you run, and what tests are available?
4. Has my tumor been tested for HER2?
5. How many cases of esophageal cancer have you
   treated?
6. How advanced is the cancer? Has it spread to more than one area?
7. Why are you recommending this particular treatment?
8.  Are there other treatment options available for this cancer, and what are the pros and cons of each?
9.  Is there any written material about the recommended treatment that we can take home to read?
10. What are the goals of this treatment, and what is the success rate?
11.  How long will the treatment last?
12. What are the risks of this treatment?
13. What are the side effects of this treatment?
14. Are there ways to manage the side effects?
15. How do we know if a side effect is severe enough to warrant calling you?
16. Is there a number that can be reached 24/7 for on-call assistance?
17.  What do we need to do to prepare for this treatment?
18.  Is there anything that's important to avoid before or during treatment?
19. Can you tell us what to expect during treatment -- where does it take place, how long does it last, and is it uncomfortable?
20. How do patients typically feel after treatment, both immediately afterward and in the days that follow?
21. Is it a good idea to make certain diet or lifestyle changes, and how can friends and family help with these?
22.  Are there any new treatment options or clinical trials we should be aware of?
23. What's the best way for us to contact you when we have more questions about the treatment?

 

When you are ready to pick a surgeon:

Esophageal cancer surgery is MAJOR surgery. Make sure you find a surgeon that specializes in esophagectomy surgeries. You do not want a local thoracic surgeon that has done a few of these surgeries each year; you want someone who does MANY of these each year

Ask your husband to consider a second opinion from a National Comprehensive Cancer Network certified facility. These facilities often have access to leading treatment and surgical techniques not available at local facilities. Cleveland Clinic is certainly on that list.

Here is a reference to the NCCN website:
http://www.nccn.org/members/network.asp

Ask your prospective surgeon for the number of esophagectomies he has done, the surgical approach he has used, and his treatment outcomes. There are a number of different surgical approaches, some less invasive than others. Ask your surgeon what approach he will use and why that approach is the best approach for your husband. “I don’t do the other kind” is not the answer you are looking for.

Be sure to investigate the outcomes of the facility where the surgery will be done. Esophageal surgery is complex and the aftercare is important. Here again, NCCN facilities tend to be better equipped to deal with complex recovery requirements.

This web site does not get as much activity as it used to. I would suggest you view the esophageal cancer forum at Smartpatients https://www.smartpatients.com/ As this site is much more interactive and has more cancer survivors posting on a daily basis.

I know this is all very frightening at this point, but take one day at a time. There are many of us here who have made this journey and are here to help.

Best Regards,
Paul

 

Hello

Hello Kymberlyn,

Paul did a thorough job of answering your question about what you can expect and what you'll want to do to be prepared, so I'll just hit on a couple of other things that seemed important.  First, you say that your husband is determined to have his care locally, which will not provide him with high quality care.  I think it may well be worth the fight to try to convince him that the Cleveland Clinic will be better for him.  EC isn't some sprained ankle that can be treated equally at the local ER or at Johns Hopkins.  It's a complicated disease that you want to have a treatment team that is both experienced and good at what they do for your care.  Cleveland Clinic is world class.  It really can make a life or death difference to be at a top quality hospital with top quality doctors.  I'd fight him on this one.  He can be mad at you every day for the next twenty years.  At least he'd be alive to be mad at you.  

Second, you seem worried about not having support as a caregiver.  Being a caregiver is an often unnoticed, thankless role.  Everyone feels bad for the patient, but is unaware of the suffering the caregiver is experiencing.  I don't know if you are on facebook or anything, but you can reach out to your friends in the Cleveland area that way.  My wife has gotten a ton of support from people she literally hasn't even seen in person in decades that way.  I tease her about her "fake friends", but they're real to her and have been a source of much help & support.  Maybe you can find a similar path.  Another thing you might do is try to get closer to his friends.  You say they're nice, so you can try to lean on them for some help.  You are absolutely going to need at least emotional support, if not physical help.  Find it where you can.

I'm sorry you guys are finding yourselves in this spot And I'm hoping for the best for you both.

Ed