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Posted

Hi Everyone.

A few weeks ago routine blood work showed that my father's CEA was elevated. Because he had esophageal cancer in 2000 & 2004 he had an endoscopy. The biopsy showed his cancer had returned. His oncologist ordered CAT and PET scans and we got the results today. In addition to the esophageal recurrence, he has a lung mass. It could be metastatic esophageal cancer, or it could be a new primary.

Without even knowing which cancer it is, his oncologist wants to be conservative and treat it with chemo only.

I understand that if it's metastatic, surgery isn't an "option", but we don't know that yet. When I started to ask questions and suggested more aggressive diagnostics and possible treatment options he (the doctor) said "you should back down." Basically, I shut up because I didn't want to upset my father, but I was so angry. And I still am.

I went through this with my mother and I learned from my mistakes with her. She had a primary kidney cancer that was left untreated and that in the end is what "officially" killed her.

Am I being too aggressive by insisting on a biopsy of the lung tumor? Is it too aggressive to want the option of removing the lung mass if it's LC, even though his prognosis with the esophageal cancer may not be great? Maybe I am wrong; but I just can't see leaving it there to spread.

It sucks knowing what may be down the road. I just lived it with my mom and I CANNOT believe we're going through this again 8 months later.

On a funnier note, after the initial shock of hearing about the lung tumor, my father asked the doctor "did I catch this from my wife". He was joking and I have to say, it was kind of funny.

Thanks for listening.

Christine

Posted

Oh (((Christine))),

You are NOT being overly ANYTHING, hon. You just be the advocate you are ~ and to he%& with anyone who is not on board. WE here are on board and with you all the way ~ 100%!!!!!!!!!!!!

Hopefully things will get BETTER as opposed to the other way. But know you can count on us to be there for you. I am so sorry you have to walk this walk again. :cry: .

Kasey

Posted

Hi Christine,

I'm so sorry to hear of your dad's new diagnosis. It just sucks that you and he have to go through the cancer thing again.

As far as your dad's doctor goes, trust your instincts. And perhaps you could have a conversation with him in private about possible treatment options.

Good luck. I wish nothing but the best for your dad.

Trish

Posted

Christine,

You DON'T need to back down from finding out about all the possible treatment options for your father and than helping him work through his decisions about treatment.

Susan

Posted

After all, He is YOUR FATHER!! how would Onc feel if it were his mother or father. We advocate for our loved ONES. Our onc's have lots of patients to take care of.....

Posted

That sounds like an exceptionally arrogant "doctor" to me! As was said above, THAT IS YOUR FATHER. You just went through it with your mother! You get one mother and one father in this lifetime. The "doctor" gets countless patients. DO WHAT YOU HAVE TO DO. I doubt that your Dad's doctor is posting on some doctor site somewhere, asking if HE was in the wrong and being overly apologetic about his "trespassing" toward a concerned daughter. Gosh, it is so dispiriting when questions about life and death get reduced to a territoral breach for medical "professionals." Hang in there. Many prayers to you, your father and your family. Stay strong.

Posted

I'm so sorry you have to go through this again so soon after losing your mother :cry:

You may want to see another onc that is a little more patient friendly. I don't know that I'd want someone treating my parents after telling me to back down when it comes to their health.

Your father's response was cute....

Posted

Hi Christine:

As many here have said, you have done nothing wrong. There is nothing wrong with being a pro-active advocate. Keep up the good fight and always trust your instincts.

wendyr

Posted

Talk about a double whammy! I am so sorry for you and your dad.

I could only imagine how you felt when that doctor said that as that was so uncalled for.

Maybe you can speak to the doctor alone. I did that one time. I knew when he would be in and I did not call I just showed up and said I wanted to speak to the doctor between his visits for just 5 minutes.

You also can always get a 2nd opinion, maybe another Onochologist have a more aggressive treatment.

Also if you want to, you can put the question to Dr West tonight.

Keep us posted, you know we are aways here for you

Maryanne :wink:

Posted

I am so sorry to hear of your father's cancer return. The wonderful loving caring kind supportive daugther that you are is WHY you WANT the BEST for your dad. I totally understand.

What does your dad want to do?

My best to you both.

Posted

I'm so sick of doctors giving people the brush-off. DON'T back down. Insist on what you think needs to be done. Remind the doctor that you're not exactly a novice at this cancer business.

Posted

Do NOT back down. SOmetimes we have to push to get the care we want and deserve. If this Dr isn't doing it find one that will!

I am so sorry that your dad has to go through this again. He is very lucky to have your support and love. YOu keep it up!

Prayers to your family,

Dana

Posted

What an #@!! of a Dr!!! I have a story not about lung cancer but with my Dad-he has had a cough, runny nose etc for 1 year! I told him when my son had a cough after 3 months and a chest x-ray that I insisted on, I got him put on Singular-that is the only thing that ever stopped his cough. I told my Dad from the beginning to ask him for a prescription for it-and also not only a chest xray ( he smoked for 30 years-quit 15 years ago) but also a cat scan-

MY Dad then told the Dr that "My daughter said I need to be on Singular and need a cat scan of my chest-The Dr said to my Dad - "What is your daughter a Doctor?"-he he... Long story short-after 1 year and many medications later he FINALLY put my Dad on Singulair and guess what- IT WORKED!! Bottom line-

you have to be your own and your fathers health advocate-I would get a new Dr if you don't like what he says the next time around!!

Good Luck-and I'm sorry you are going through this again. My Step Dad was dx 2 years before my Mom -we felt the same way.

Dar

Posted

Christine,

I think you are right to ask questions. If your dad feels the same way you may want to ask about a second opinion. Most doctors welcome a second opinion mine did. Keep us informed.

Stay positive, :)

Ernie

  • 2 weeks later...
Posted

Hi again everyone,

Thanks for all of your responses. I appreciate your support. Just thought I would provide an update.

My father had a brain MRI and bone scan last week --both clear, thank God. He also met with his radiologist and oncologist. They both feel that a biopsy of the lung mass is unnecessary, as treatment plan would still be chemo.

I questioned not having a biopsy because "wouldn't the chemo be different if it is SCLC?" The response I got was "yes, but 80% of all cases are NSCLC". My father isn't thrilled with the idea of a biopsy so I'm not pushing it. After all, he's the one that has to go through it, not me.

His onc. is suggesting 3 cycles of carbo/taxel/avastin. He said this should have an effect on both the lung mass, and the esophageal cancer (saying prayers).

Thanks again.

Chrisine

Posted

Christine-

I like the treatment plan they have set up for him. I can't say enough good things about Avastin. As to the doctor's attitude it is your job to be an advocate for your dad-- and you're doing a good job. Let us know how he does with the treatment.

Rochelle

Posted

Christine,

Happy that the treatment will

be started, Avastin seems to

do wonder.

Good sailing through it.

Prayers will be there for both.

Jackie

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