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Just starting the journey and need guidance

stehend
Posts: 1
Joined: Aug 2013

Hello all.  My father was diagnosed last week with Stage 3 Adenocarcinoma.  The docs said that it has traits of both a stomach and esophageal cancer.  He has some swollen nodes around the esophagus and one in his chest, but they have not metastasized.  We meet on Monday with the Oncologist to discuss our action plan further, but they plan to start radiation 5 days a week for 6 weeks and chemo as well. After that time, we are looking to have an esophageal resection.   

From your experience, what should I be asking the doctors?  I am trying to not spend too much time on the internet researching because the news seems to be old and not that positive.  We want to know how to BEAT THIS.  

We are all scared, VERY shaken, especially since he really had no signs leading up to it but some minor heartburn the last few weeks (he went to the doc who put him on antacid meds).  

Thanks for your help!

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

Hi, I understand what you mean about not wanting to do internet searches.  It's been about 2 yrs since my mom was diagnosed w/ stage 3 squamous cell EC and when I did the research back then, I was freaking out that my mom would die instantly.  Much of the research i found dealth wi/ chemo drugs/radiations and it appears that different patients have different results.  You will find miracle postive stories and posts on this board as well as not so great posts.

 

My advice is to look at the nutrition aspect of it in conjunction to the standard medical protocol.  There's alot of research behind it that the medical community ignores.  I figure every little bit helps.   When I was in the research phase a couple years ago, I interviewed a couple different oncologysts and of course both were telling me we'll just have to start treatment and see how it goes w/ follow up scans.  Hang in there, it's a touch road ahead of patient and caretakers and it takes everyone to battle this disease.

 

Heeran

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

While a diagnosis of cancer is certainly frightening there is reason to be optimistic about the possibilities for a long term remission. I was diagnosed with esophageal cancer at the gastro-esophageal junction in December of 2009. Like your father it was unclear if the adenocarcinoma originated in my stomach or in my esophagus. However after surgery and chemotherapy I am once again enjoying my life with the people I love. Treatment for esophageal cancer is difficult; and the surgery is MAJOR surgery with a long recuperation period, but it is survivable.

 Some suggestions:

  • Ignore the statistics you read on the internet about survivability. First, most of them are not current and don’t reflect advances in treatment and follow up. Second, they do not account for your father’s specific health profile. Everyone is a statistic of one.
  • Insure all the correct things have been done to correctly stage your father’s cancer. He should have received an endoscopy with biopsies, a CT or PET scan, and an endoscopic ultrasound. This will help the oncologist define the best approach for a treatment plan. The tumor biopsies should be tested to see if they test as HER2 positive. There are some chemotherapy protocol options that are indicated in cases where the cancer is HER2 positive.
  • Your meeting with the oncologist is going to be filled with lots of words you do not understand in a very emotionally charged time for you and your father. I would suggest that someone take the responsibility to write down questions, answers, and instructions discussed in that meeting. It is often hard to remember everything said and everything you wanted to ask. Go with a list of questions it will help both you and your oncologist stay on track.
  • Ask for a copy of all medical tests that have been done. I kept a folder during my treatment with all my tests and the notes of my meetings with my doctors.

Tri-modal therapy provides the best chance of long term remission from esophageal cancer. Tri-modal therapy includes radiation therapy to attack the primary tumor; chemotherapy (typically with multiple chemotherapy drugs) to address any stray cancer cells in the surrounding areas (e.g. lymph nodes), and surgical resection of the esophagus and stomach. I would suggest he seek a second opinion from a major cancer center that is National Comprehensive Cancer Network (NCCN) certified center. Some people are hesitant to travel for treatment because they wish to be close to their families during treatment. Your father can still have his treatment plan defined by a NCCN center and have this radiation and chemotherapy done locally, and his surgery done at the center. There are multiple approaches to the surgical approach to esophageal resection. There is a minimally invasive esophagectomy that is a laparoscopic approach. It typically has the shortest recovery period. There are two other basic approaches that use traditional surgical incisions, a Transhiatal Esophagectomy where the incisions are made in the abdomen and the neck area and the Ivor Lewis approach where the incisions are made in the abdomen and the back. I cannot stress enough that this is MAJOR surgery and it is critical that your father select a surgeon that has done MANY of these surgeries at a facility that knows how to manage the recovery process. If you tell us where your father is located we can make some suggestions of facilities.

  Some suggestions for questions for your oncologist:

 

  1. What is my lymph node status? What does this mean?
  2. How large is my tumor?
  3. What grade is my tumor? What does this mean?
  4. What is my her2/neu status? What does this mean in terms of tumor growth and treatment options?
  5. How will we measure the effectiveness of my chemo regimen?
  6. What are the typical side effects of this chemo and how will we manage them?
  7. What precautions should I take with my other family members during treatment?
  8. Why are you recommending this therapy? What are the benefits/side-effects?
  9. What precautions should I take because of my reduced immune system response?
  10. Why are you selecting the particular chemotherapy agents you have identified?
  11. Is my treatment plan in alignment with NCCN guidelines?
  12. Where do I go for chemotherapy? Can you describe what will happen? How long does each treatment take?
  13. Will I be able to drive myself home after chemotherapy?
  14. Will my hair fall out after chemotherapy? When?
  15. Should I change my diet or lifestyle?
  16. Which tests can tell me more about my individual cancer and whether I am likely to benefit from chemotherapy? 
  17. Is there a 24/7 contact number where I can call with questions or issues as I proceed through treatment?

 

Be sure to come back here often as your father proceeds through treatment to ask questions. There is a lot of information and providing it in advance of when it is needed just adds confusion to an already complex treatment plan.

Lastly, be positive. There are plenty of us out here who have been diagnosed with esophageal cancer that are in long term remission. And give your father a hug, he needs one!!!

Best Regards,

Paul Adams
Grand Blanc, Michigan
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Three Year Survivor

dfd24
Posts: 85
Joined: Mar 2011

Paul,

that was a very good and complete response; I wish I had read this kind of message when my husband was first diagnosed .

Wish all the best to those just diagnosed and to all  who are still dealing with cancer .

danièle

3whitecats
Posts: 10
Joined: Aug 2013

I am not very far ahead of you, but finally ended that first month or so of initial diagnosis, anxiety, tests, tests, doctors , confusion, fear, and, did i say, anxiety.  This is the third time (for different cancers) my wife and I have gone though this over the last 15 years and it does not get any easier.  Paul's comments are excellent, reread them and bring a list of questions to each physician visit - and bring a friend to take notes.  all that being said, that first stage of diagnosis does come to an end. It has for us in that I will be starting treatment Monday, in two days.  To actually decide on a treatment and get it started is a much better stage than you are presently in.   We will be doing daily radiation, weekly chemo (a modified "DCF"), both for 6 weeks. Then some time off for good behavior, surgery. Probably the ivor Lewis approach, perhaps due to stage 2 and my age, 68. 

We have not picked a surgeon yet, but narrowed it down to a couple.  We will probably pick one based not only on the individual reputation, but also the strength and depth of the institution and how experienced they are with esophageal surgery. Anyone know of any good databases out there?  I don't want to pick one based on bed side manner. 

In any event, that first stage is the worst on your mental well being, the treatment stage the worse on your ability to feel crappy, surgery terrifies me but at least I'll hopefully be well sedated, and THEN, the recovery stage, the best of all where every day you feel stronger and better. All that is usually followed uo by a couple years of frequent remission fears due to most any ache and pain, and possibly some chronic chemo to keep things cleaned up. 

In any event, although this esophageal cancer is a new one for us, that is how we got through the others.  Be tough, watch your BP, and ask your doc for little Xanax to calm you down -- not too much though.  Keep an eye on you spouse or caregiver too-they are most important.  

PeteD

livingwithcancer
Posts: 1
Joined: Aug 2013

Hello,

I think that your situation with your dad is similar to ours.  My very healthy and active 60 year husband was diagnosed with T3N3M0 gastric-esophageal adenocarcinoma on July 12, 2013.  We traveled to find experienced care and he is half way through treatment - radiation 5 days a week for 28 sessions and 2 rounds of Cisplatin & 5FU.  We are still very scared, but it feels good to be actively fighting the monster!  I'm keeping a notebook of appointments, medical professionals' advice and comments and his eating and drinking amounts.  He has lost almost 40 pounds so far and they tell us that because the surgery will be extensive, he will most likely lose more weight before recovery.  We are expecting a hard road ahead but we plan to beat this!  I'm sending positive energy with this message and look forward to hearing how all is going with you and your dad.

 

Tahl
Posts: 3
Joined: Sep 2013

Hi my dad had just been diagnosed.. Where are you getting treatment I'm looking for the best people to help fighthat his. We are so scared... 

 

Thanks

 

tahl

Dad'sfight
Posts: 155
Joined: Feb 2013

Paul's advice is perfect. When my father was 1st dx in 9/2012, Paul was and still is a great help :).  One thing I'm glad I did was request copies of all the exams and test's while in the office at every visit. The doctors are very willing to give them to you that day, much easier than trying to get them through office staff. Unfortantly I've had to move Dad to Mayo because it spread to hip and spine. I'm so thankful I had all records, saved a lot of time and he started treatment for mets alot sooner.

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