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Dad has gall stones during chemo...Dr's won't entertain it at all

Bclowers
Posts: 14
Joined: Jun 2012

My dad was diagnosed with stage 2 EC at 54 yrs. old in April of 2011. We went through chemo and radiation for 28 weeks and it was gone; not a trace. Then we opted for an esophendectomy(I don't know if I spelled that correctly)in October of 2011. They found nothing when they went in and although it was a lifestyle change, we were excited. Then in April 2012 he began having pain when swallowing again. A tumor had returned. They began chemo and herceptin from May till Aug./Sept. and nothing had changed. They told him the overdose on antioxidants could have blocked the chemo, so they added another kind of chemo to what he was already taking, plus the herceptin while doing 4 more rounds with 11days between each one where he'd where a pump for 4 days. He start having extreme coughing attacks with the last two rounds of chemo and spitting up blood. Then this very last treatment round left him with extreme pains like gall bladder attacks. He knows he has gall stones from a previous ultrasound at a workplace healthfair. M.D. Anderson won't hear of it. He is so discouraged and has to sleep in the recliner every night. Instead of just ruling it out with an ultrasound, a thoughtless individual called my mother to tell her they'd do an early CAT scan to see if the cancer had gotten worse. It has stayed localized and not moved thus far, but we're just looking for a small break. He was only stage 2; how could this be? There are so many stage 3 and 4 success stories. I'm lost. My mom needs him; I'm 10 hours away, an only child and we have NO other family.

gugi1965
Posts: 16
Joined: Nov 2012

Omg, I am so sorry for that news. All I can say is we fired a dr, for having no bedside manner and no compassion so I'm sorry you all had to go thru that too. My husband was only 43 when he was diagnosed and I too am alone with no family. His father is dead and I just lost my mom, dad, and brother all in row. I am so alone it's scary but I stay as positive and I know that sounds corny too people but it is all I have to offer to you and your family. The odds are so bad with this sisease I wouldn't wish it on my worst enemy if I had any. Praying alot helps me and I'm not religious if you don't hold tha against me. Tell me wht the dr's are saying and I will try to help you as much as I can, I never listened to any Dr's for they were never that optimistic. Everyone is different I found that out. My husband can take a turn overnight for the worse thats how quick this horrible disease can be buy sty in touch with me please. I am in Michigan and I have never stopped looking for the right dr. or treatment. What are his catscans saying? write me back. Take care. J

ShellyAS
Posts: 24
Joined: May 2012

I read in your post you are in MI. If you don't mind my asking where in MI? We are in the Clinton Twp area. My husband had his esophagectomy by Dr. Sang Kim at William Beaumont Hospital in Royal Oak at the end of May this year.

My husband was diagnosed at age 44. Both of his parents and an aunt passed from esophageal cancer.

Blessings,
Shelly

gugi1965
Posts: 16
Joined: Nov 2012

Dear Shelley, we are in Muskegon. We go to the Johnson Cancer center and feel blessed to have Dr. Suphi as his dr. I didnt know anything about this disease when he got it.My world was shattered like I can't even describe. We both went on a diet months earlier and of course he lost weight and I didnt..... We always kept asking the dr's why he was so sick for months before they found it. They told us he was to young for cancer... go figure huh?I begged our primary care phys. to run other tests and they just didnt run the right ones!!!! I finally asked to be referred to a gastro dr and thank god because at that point I was gonna hurt someone if they didnt help him. All the blood tests in the world will NOT find this cancer unless you have a upper GI. I got smart and figured it out. At that point he couldnt swallow anymore... What is an esophagectomy if you don't mind me asking? our dr. said it was a bad operation and we didnt do it.slowly he began able to eat again. please help me with this. Thank-you. Julia

ShellyAS
Posts: 24
Joined: May 2012

Julia,

They removed my husbands esophagus and made the stomach a conduit which they pulled up and attached in his neck. It was a horrific surgery. The first day he was in surgery for over 13 hours. Around 11 pm they stopped the surgery for the night due to some complications and went back in the next morning for another 4 hours of surgery. He was in the hospital for 15 days.

He is doing well now. He can pretty much eat what he wants. He is back to work full time. He does have difficulty swallowing due to his new "plumbing" as he calls it.

It is good that you started putting the pieces together. Usually, a swallowing issue should be a red flag that an endoscopy needs to be done.

I can understand your feelings. It all went pretty quickly once they discovered the nodules. I was so busy trying to schedule all the appts and prepare that I did not really allow myself to really feel. We have 2 kids that I was trying to be strong for as they were scared and did not really understand as they are 8 and 11.

I am learning now to take it one day at a time. I now let go and give it to God. In my case, I feel that now my husbands surgery is over and things are moving along that my friends don't really want to hear or understand my insecurities now.

Take care,
Shelly

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

Hi Shelly,

I just wanted to let you know that I have the same feelings about my friends. My husband had surgery one year ago, and I still deal with the anxiety and fear of recurrence. I have lost some very close friends because of this, They think I should just get over it, get back to the way my life use to be. They just don't understand that cancer changes your life, changes your priorities in life. I started going to a therapist and she validated for me that everything I am feeling is totally normal. And that I should take it easy on myself, let myself return to a more normal way of life on my time. I am finally starting to come out of my funk, but in order to do that I really just had to let go of some friends who don't get it and surround myself with very old dear friends and family. I just wanted to reach out and let you know that I get how your feeling.

I am sorry if your husband is having a recurrence, I am not sure if that is what you meant when you mentioned the nodes. You will be in my thoughts.

Niki

ShellyAS
Posts: 24
Joined: May 2012

Niki,

Thank you for your reply. In this area of my life I don't have anyone that can relate with what we have been through. I realize that it is not that they don't care, it is they don't have the experience I now have.

My husband is 5 months post surgery and will be going for his 3 month scan on 11-16-2012. At this point, as far as we know, he is free and clear. I pray it will not return.

May I ask what stage your husband was? David was a T1bN0M0. I do feel fortunate it was caught early.

Take care,
Shelly

Bclowers
Posts: 14
Joined: Jun 2012

My thoughts were, as my mom and dad, that since they are 20min. from MD Anderson, that they couldn't be in a better position. Their doctor is supposed to be a "rockstar" if you will, but my mom said she just wants a smile, a pat on the back and a "We'll beat this thing or sure try". Instead she gets cold responses and clinical but vague responses. The last PET scan showed a small pocket in his stomach area since there is no esophagus that is filling up with blood. He has coughing fits every night and has even gone to work through work through all of this. He is now coughing up bile and bloody saliva. He even threw up this morning. I would love to hear that some of this missery is gallstones, but to get that, the doctors have to admit their might be an actual problem.

gugi1965
Posts: 16
Joined: Nov 2012

I don't know where you live but fire the DR if you can and find one that fits you and understands your needs. We fired one and every time I see him I smile and kill him with kindness and think thank god my man doesn't have him anymore!

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