Need Help And Advice

My 61 year old husband of 38 years was diagnosed with EC on 02/01/07.  Since then our wonderful life has turned into a frightening nightmare of tests and waiting.  The military doctors want to send him back to Walter Reed but we live within 15 minutes of the University of Heidelberg Klinikum (hospital) which we have gone to for various other surgery and are very comfortable with.  I have lost faith in the American doctors and Army hospitals over here because Bill has been going to them for appointment after appointmen and test after test for the last year.  The answer is always hurry up and wait - it took two months to get an appointment with Internal Medicine..........

Does anyone have any positive information on Walter Reed?  We're not even sure what to do at this point.  He has an appointment through the German system for a PET tomorrow and I guess this will tell us where we are in this - not sure what stage or anything else.  He also has an appointment with the head of the department at the University hospital.  Should we also seek the second opinion fro Walter Reed? 

Then there was the idiot who basically told my husband that if the PET showed any metastasis then he should basically just forget any surgery and just receive treatment for pain mangement.  He's not in pain, he has no trouble swallowing and I watched all the fight go out of him after this wonderful medical person got done with him.

Have since gone through our German connections to a highly recommended doctor who put the spunk and confidence back in him.  It was this German doctor who got us the appointment witht the chief at the university. 

This is the hardest thing we have ever gone through and I am trying to be strong for him however now he feels that this is all his fault - yes, he is/was a smoker and yes, we enjoy a good glass of wine with dinner. 

I do know from what I have read that the distal adenocarcinoma which the German doctor seems to think it actually started in the stomach junction is not the usual squamous cell one associated with smoking.  Please - do any of you have any positive infomation?

PLEASE HELP US 

My prayers are with you and your family.  I am a thyroid cancer survivor.  If you get a chance my story is "Cancer Again! Now What?".  I use to live in Arizona but now I reside in Kentucky.  To tell you the truth I too have had enough with American doctors.  I have found much better care with my foreign doctors.  Normally, when I look for a doctor I look for weird names.  It seems crazy but my husband shares the same feelings.  I wish you luck in getting the help you need.  Take Care & God Bless

Aloha, Paulette

Dear Brokenheartedingermany,

I am so sorry to hear about your husband.  My husband was also diagnosed with EC in September.  When we first found out I was all over the internet finding out as much as I could, and I quickly realized that that was really not the best thing for me to be doing.  The statistics about EC are horrendous and all they really do is bring you down when you need to be your strongest.  There is no denying that this is absolutely a horrible thing for all involved, but it is not a death sentence.  When they told us about my husband's cancer they said it was at the GI junction and that it was approximately 5 cm long, this was in September.  They put him on an intense chemotherapy regiment for 9 weeks.  He just had another PET scan done last week and just today we were told that there was nothing at all on the scan.  We were told that anything under 1cm would not show up on the scan, but we still took this as incredible news.  The tumor shrunk a lot.  We aren't sure what's next, whether he will have surgery or not, we are waiting to hear from the surgeon.  I just wanted to share this with you because I was in your same situation a few months back and now I am here smiling with a bit of relief that what our doctors are doing is working.  I have felt comfortable with our doctors from the beginning and I really think that's important.  Follow your gut.  Make sure you are satisfied with what is being done for your husband.  Once the complete shock of this wears off try to stay as focused and positive as you can for your husband.  Some days will be harder than others, but remember each day is another day.  I wish your husband all the best with this and use this site, it is a wonderful support. 

To Strong4him -

Thank you for answering and sharing.  I too have searched the websites and printed everything I could find that I thought was pertinent.  Perhaps too much so - it is so depressing - and being a registered nurse, although not a practicing one, I know more than I want to about what he will be going through.  It is so hard to know that this person I have shared more than half my life with is going to suffer and hurt tears me apart.  I just want to hold and protect him but I feel so helpless.  Perhaps just being able to gain some comfort from others through these messages will help.  I just don't have the strength to do this by myself.

You and everyone else are in my prayers - we all need all the emotional strength we can give each other

Heartbrokeningermany,

You are so right, you can't do this alone.  I have leaned on my family and friends so much.  When I'm feeling sad or angry I give someone a call and I end up laughing or crying but usually always feeling better.  Try to keep your head up and write to me anytime I now stay home with my kids so I check this site regularly.

Our prayers are with you.

I am so sorry about your husband. My mother just started treatment today for this cancer. She is 75 years old. I read so much about this after her diagnoisis. I just wanted to tell you, please tell your husband not to waste energy blaming himself. He needs his energy for the fight ahead. Also I read on Cancer Treatment Centers of America website something about risk factors. It was talking about the risk factors (smoking, alcohol,Barretts Esophagus) and then it stated and I am copying this from the page I printed out:

             Having any of these risk factors increases the likelihood that a person will develop esophageal cancer. Still, most people with one or even several of these factors do not get the disease. And most people who get esophageal cancer have none of the known risk factors.

This blew my mind! I had to share that with you in hopes it would help your husband. Please send updates when you have any.

                                                                  Pat

On 2/8/2007 Heartbrokeningermany wrote:

My 61 year old husband of 38 years was diagnosed with EC on 02/01/07.  Since then our wonderful life has turned into a frightening nightmare of tests and waiting.  The military doctors want to send him back to Walter Reed but we live within 15 minutes of the University of Heidelberg Klinikum (hospital) which we have gone to for various other surgery and are very comfortable with.  I have lost faith in the American doctors and Army hospitals over here because Bill has been going to them for appointment after appointmen and test after test for the last year.  The answer is always hurry up and wait - it took two months to get an appointment with Internal Medicine..........

Does anyone have any positive information on Walter Reed?  We're not even sure what to do at this point.  He has an appointment through the German system for a PET tomorrow and I guess this will tell us where we are in this - not sure what stage or anything else.  He also has an appointment with the head of the department at the University hospital.  Should we also seek the second opinion fro Walter Reed? 

Then there was the idiot who basically told my husband that if the PET showed any metastasis then he should basically just forget any surgery and just receive treatment for pain mangement.  He's not in pain, he has no trouble swallowing and I watched all the fight go out of him after this wonderful medical person got done with him.

Have since gone through our German connections to a highly recommended doctor who put the spunk and confidence back in him.  It was this German doctor who got us the appointment witht the chief at the university. 

This is the hardest thing we have ever gone through and I am trying to be strong for him however now he feels that this is all his fault - yes, he is/was a smoker and yes, we enjoy a good glass of wine with dinner. 

I do know from what I have read that the distal adenocarcinoma which the German doctor seems to think it actually started in the stomach junction is not the usual squamous cell one associated with smoking.  Please - do any of you have any positive infomation?

PLEASE HELP US 

You have my utmost support as I know all too well what you and your husband are going through.

 My husband of 42 years (he turned 63 January 17th, 2007) was diagnosed with EC December 21st. 2006.  To make a horrible situation worse, it was holiday season, so getting an appointment with an Oncologist was not even possible until the middle of January!

Harley's (my hubby) EC had metastasized to the stomach, liver and possibly to the lungs.  :-(  So that meant that the cancer was stage IV.

Making matters even worse was that Harley had two stents put into his heart arteries Nov. 22nd, and as a result had to be on blood thinners for at least 1 year.  Well, the GI doctor didn't want to do the biopsy in the clinic so referred him to the VA hospital in Sacramento, CA.  The biopsy was done January 3rd and the results were what we had feared - stomach, & esophagus.  The CT scan had already revealed multiple lesions on his liver.  Also, the type of cancer cells is something called Signet Ring carcinoma - a rare cancer and also a very aggressive cancer.

On January 11th, we had the consult with the Oncologist, basically telling us that his cancer was terminal and that we could either do NOTHING (!) or do palliative treatment to make him comfortable.  I was furious!  What do you mean, do NOTHING???????????

We both told her we were ready to FIGHT this cancer and we wanted to be referred to the Palo Alto VA hospital -they are a teaching hospital that works closely with Stanford University.  She agreed (I think just to get rid of us!) and January 23rd we had a consult with the Oncologist in Palo Alto.  What a huge difference a different hospital makes!  (I'm telling you this, because Harley is getting all of his treatment through the VA, and except for the Sacramento VA hospital, we have nothing but WONDERFUL things to say about the VA system and their treatment of their patients.  I hope this gives you some comfort).

The Palo Alto Oncologist ordered another CT scan, and Harley started his first chemo infusion Friday, January 26th.  We went home with a multitude of drugs, one of them being chemo pills that Harley was to take for 14 days - 8 pills a day.

At first Harley was very exhausted and obviously depressed (two depressed people is NOT a good thing!).  Anyway, he seemed to go downhill and it scared me so much.  I know what you mean when you said that you have spent more than half of your life with your husband, and it is such a scary thing, knowing that there is nothing you can do except give him love, support and get as much knowledge about his cancer as possible.

I called Harley's primary doctor and he ordered anti-depressants, but of course they take 4-6 weeks to work.  Harley is able to swallow, and is in no pain, but he was so exhausted and depressed that all he would eat (drink) was the Ensure milkshakes I made him (Ensure and ice cream).  I was lucky if I could get 3 of those in him a day.

The VA had set up an appt. for a chemo class for Feb. 5th.  I really didn't want to drive another 120 miles to the Palo Alto VA, but the VA told me that it was a very important class to attend.

Thank goodness we went!  It was actually a one on one class.  Mary, (the oncologist nurse) was very nice and sympathetic.  Harley had one question - when would he feel better?   I interjected at this point and told Mary how exhausted he felt, and what his daily routine was - getting out of bed, to the recliner and back to bed. 

Well, that was the problem!  Harley wasn't moving, and as a result, his body was becoming weaker and weaker and of course fighting off cancer with a weak body was the worst thing that can happen.  So she put him on an exercise program! 

Harley was to walk 10 minutes 2x a day, he was not to sit in his recliner for more than 30 minutes at a time - after that he was to get up, move around, and use free weights.  He was allowed one nap a day, but no longer than 40 minutes.  And he could NOT go back to bed after that until he was ready to retire for the night!

This was the last thing Harley wanted to hear!  He couldn't believe that he had to exercise - how on earth could he exercise when he could barely move now?  The following day, Feb. 6th, Harley and I went for a walk around our block.  He could barely make the walk - he had to stop about 5 times (it's a short block).  The second walk of the day was just halfway up our hill and back.  He did take his nap, but I set the timer for 40 minutes and he got up and went to the recliner.  I set the timer for 30 minutes (I think he was ready to throw the timer out the door!).  After the 30 minutes of sitting, he did get up and walked around the house and used the free weights for a tiny bit.

Feb. 7th he walked 2x around the block - this time without stopping!  Now, fast forward to today - Harley is walking much longer and much faster.  He is up almost the whole day and rarely takes naps anymore!  He is using his free weights quite often, and his exhaustion is almost totally  gone!

Also, Harley is eating again!  He has no problem swallowing, and is hungry again!  He lost 6 pounds after his first chemo treatment, but has now gained back almost 3 of those pounds.

The best news is that the tumor has shrunk!  Now, we haven't been told this by the doctor, as our next appointment is this Friday, Feb. 16th - that will be when Harley gets his second chemo infusion.  But before his first chemo, we could feel the tumor - it was a very hard lump about 4"x4", and actually bulged out slightly so that you could see it on his stomach when he was lying down.

Last night I couldn't see the tumor, and after pressing on his stomach I finally found a very small lump and it was no longer right on top.  So we know the tumor has shrunk.

I hope that I have given you some encouragement of the VA system.  I can understand your concern when you are comfortable with a different system.  But Walter Reed Hospital is where many of our Presidents have been treated, so I would expect that they have only the very best doctors at that facility.

Please update me when you can.  I know that Harley and I have a long road ahead of us - when we first started this we were given no hope.  But now I feel there IS hope. 

Sending gentle hugs,

Azzie

On 2/27/2007 Aloha Wahine wrote:

Wow!! what an inspiring recovery.  Glad to hear things are going better.  Good job !!!  Take Care & God Bless. Aloha, Paulette

Hi Paulette,

Harley's appointment on February 16th was so encouraging!  Harley always sees the oncologist before his infusion, and she palpitated the area where the tumor WAS and said she couldn't find it at all!  :-)

They are now trying to schedule a CT scan before his next infusion (March 9th) so that they can see if the chemo has done its job on the cancer on his liver and lung too. 

I'm praying that we get the CT appointment before our appointment.  I called yesterday to find out when he was scheduled and he ISN'T scheduled!  They are completely booked all the way up to March 9th.  I was told to contact our oncologist as she is the only one who can get Harley in for an appointment earlier.

But I KNOW Harley is better.  He's eating all types of food now - and eating quite a lot of it!  He no longer gets the dry heaves, his voice is no longer hoarse EVER, and he has much more energy.

 I want the CT scan to show the same excellent results on the liver and lung too.  But as I already mentioned, I KNOW he's so much better.

Gentle hugs,

Azzie