Confused Daughter

Kittens1985
Kittens1985 Member Posts: 1
in Caregivers #1

My mom was diagnosed with oesophageal and liver cancer in December 2014. She started chemotherapy straight away and after an awful couple of months where she felt so sick and angry all the time that she could barely get out of bed we were given the great news that the cancer on the oesophagus had shrunk and the one on the liver was nearly gone. Her oncologist recommended radiation to blast away the remaining bit of the tumour on her oesophagus. Her next scan we were told by her radiologist that the cancer was dead, destroyed, she was cured!! We were amazed and delighted to finally be free of the disease and she could work on getting her strangth back up and getting back to normal. 

 

Within two weeks of that great news we were back in the hospital to be told that she had a tumour on her spine and more radiation would be needed. To go from cured to back to radiation in the space of two weeks was awful but we got through it. One of the nurses mentioned that the tumour on her spine was actually present in the original scan where they told us that she was cured. Why did they not tell us about it at the time? 

 

My mom is pretty fragile emotionally and I think they didn't want to worry her until it was unavoidable. Is this normal? 

 

I met with her oncologist without my mother who gave me an honest view of what the prognosis was. We were looking at 2-3 months and more than likely the cancer had already spread.

 

So imagine my surprise when at the results of her latest scan this week, we were told that nothing had spread, nothing had grown. All was great. 

 

Great news for my mom but I can't help but be sceptical. Are they keeping the truth from us again for her emotional wellbeing? I say this because he had started the conversation by asking my mom about her swallow (the first sign we had of the cancer in the oesophagus), asking her about pain in her back and where it might be etc. I know myself that my mom is having a little trouble swallowing and has had on/off pain in her back that she seems to be able to manage with painkillers at home. Only when she lied (a different issue I have with my mother but this is her journey and I cannot push her) and told him that she had no pain, no issues etc. did he tell her that all was fine. 

 

My mom now believes that she is cured. 

 

I don't know what to believe anymore. I want desperately to believe that everything is stable at the moment but there is a nagging doubt in my head. Her oncologist won't meet again without my mother present and I can't take that hope away from her. I think it would be more damaging than any cancer diagnosis. 

 

Has anyone else every experienced anything like this? Doctors withholding information for the sake of the patient?

Comments

  • cheatinlil
    cheatinlil Member Posts: 197
    #2
    I’m so sorry to hear about

    I’m so sorry to hear about your Mom.  One thing I can share is that the Dr’s really don’t know how long someone has to live.  They can give you their best guess but they really don’t know.  And when people are doing generally well, it is even harder to tell.  They can tell you when the patient is at deaths door but even that could be days or weeks or months but not years at deaths door. 

    It is very strange that they didn’t tell you at the time, all tumors present.  However, did you yourself hear the news or did your Mom tell you the news?  You said yourself in your post said your Mom has lied.  Or she could just be in denial. The reason I ask is because chemo patients have what’s called chemo brain, which is basically an inability to focus and remember.  The other thing I’ve noticed is that Dr’s are so in tune with what is going on, that they spew out words and acronyms and medical jargon as if we ourselves are dr’s.  They give you so much information and we have a learning curve that we are just trying to understand all this new information that we may miss some of it. 

    I don’t know if my husband is in denial or just truly doesn’t understand but I have heard him tell people he is in remission.  I think he just doesn’t know what that word means.  Or he tells people he has no cancer.  He has heard the dr. say no cancer in the colon, or brain or that the radiation got all the cancer in the spine.  And he tells people: I have no more cancer or the radiation got it all.  I correct him when I’m around but who knows what he says when I’m not around.  Plus he is a very positive upbeat person and at scan visits sometimes he says maybe this time I will be cured!  My husband has stage 4 cancer.  There is no cure for cancer.  Our best results are that tumors are “stable” so far.  Not shrinking but not growing.  I am more a realist.  I try and be careful not to bring him down and sprinkle my real answers with “but God is able to cure you” or “but we are believing for a miracle” which I do believe but at the same time I need to live in the real world.

    I do not think it is ethical or that they would keep any information from your Mom.  In fact I called the Dr. and asked for my husband’s prognosis and they would not discuss it with me without him being present.  But we did get news that my husband was responding so well to treatment that they have a similar patient they have been treating for nine years and we could have the same outcome.  Then 3 months later a tumor was found on his spine and they changed that to they don’t know the prognosis.  They only know that the treatment he was on, is no longer working and we have to wait and see how he responds to the new treatment. 

    Another instance they said “see you in 6 months for scans” then after a regular visit they said we needed a scan in 10 days.  So everything can change pretty quickly. 

    That being said I do not think they are keeping the truth from you for her emotional wellbeing. 

    I do not think Doctors withhold information for the sake of the patient but I do think they are giving their best guesses. 

    I’m sorry we are both here.  Keep posting.  You are not alone. 

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