Starting Chemo. What Questions to ask oncologist?

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rosaria1120
rosaria1120 Member Posts: 3
in Caregivers #1

Hello,

 

My father recently discovered his rare bile duct cancer has returned to a nearby lymph node.  Bile duct cancer is a not curable and all we are left with is hope that the chemo will control the growth of the cancer.  I am in a dilemma because my Italian parents are not open to natorpathic approaches nor do they seem to ask the oncologist many questions regarding chemo symptoms.  They are very uneducated and I am left doing all the research (which I do not mind).  I've complied some questions for this blog, hoping someone can shed light on this overwhelming process.  Currently, my dad is being treated at MD Cooper, New Jersey location. 

 

1- Port or no port? Dad starts chemo tomorrow.  What are your thoughts on the port?

2- Aside from looking on the clinical trial database myself, does anyone else help with clinical trial research?

3- Are there any programs that help pffset the costs of naturopathic doctors?

4- Has medical marijuana helped any cancer patients you know?

5- Do you or your loved one speak wth a cancer nutritionist?

6- Does cancer go in remission?

Any other questions I should ask the nurse or doctor at the next appointment? 

 

Thank you in advance for all your help!!!!

Rosaria

Comments

  • Catholic
    Catholic Member Posts: 86
    edited August 2017 #2
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    > 1- Port or no port? Dad

    > 1- Port or no port? Dad starts chemo tomorrow.  What are your thoughts on the port?

    A port is a tube where the chemo drugs flow through into the body.  They can also draw blood from the port.   You
    want the port; otherwise they have to find a new place on your arm to inject a catherer or tube everytime they want
    to give him the drugs.  When chemotherapy is done, they take the port out.

    > 2- Aside from looking on the clinical trial database myself, does anyone else help with clinical trial research?

    Im not sure I understand this question.

    > 3- Are there any programs that help pffset the costs of naturopathic doctors?

    None that I know of.  Insurance is the only thing that pays for chemotherapy.  The drugs are very expensive and
    without insurance, there is no way anyone could afford these drugs.

    > 4- Has medical marijuana helped any cancer patients you know?

    It doesnt apply for me.

    > 5- Do you or your loved one speak wth a cancer nutritionist?

    Nope.  But I think that nutrition is very important.  Food is medicine and eating healthy is important.

    > 6- Does cancer go in remission?

    Maybe.  Maybe not.  You get done with chemotherapy and there is hope.  Then you wait and see.  At that point the
    cancer might never come back.  At that point, the cancer might never have been eradicated and in a few months the
    cancer cells will start showing up on scans again.

    > Any other questions I should ask the nurse or doctor at the next appointment? 

    For me, in hindsight, the most important question(s) are what specific drugs does the person plan on taking and why?
    Then you go and research those drugs online to learn more about them.  Many of those drugs have side effects.  My wife
    underwent 11 months of chemotherapy and hormone therapy.  The medicine she took absolutely knocked her out.  She
    came home from the clinic and fell asleep and stayed asleep for 16 hours a day (8 hours she was awake) for 11 months.
    She was 35-36 years old when she underwent chemotherapy. There are other side effects, namely, mood swings and nausea
    and Im sure others that I cant think of right now.

    One of the drugs my wife took, tamoxifen, can possibly make things worst for the patient and I like how the doctors say
    "each person's risk factors are different" which means they dont really know if the drugs are going to work and be effective. 
    Chemotherapy drugs, in my opinion, are poison and its a roll of the dice to see if these very powerful drugs which kill
    every cell in its path in fact kill all of the cancer cells.  The drugs might work and keep the faith that they do work. 

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    #3
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    In good hands

    It sounds as though your dad is in good hands, both in where he's receiving his treatment and in having a caring daughter. 

    You can ask at the hospital about trials. It looks as though they have quite a few they participate in, also there's a link on this webpage to trials. 

    Your parents' not asking questions may be due to the generation they're from. Or, they may not yet have any to ask, or not yet be comfortable asking a particular person on the care team. This web page has a menu with info about questions to ask. At the hospital, they may have a nurse or case manager who is assigned to your dad's team and is the go-to for getting answers to all sorts of information. There is probably a nutritionist on the team as well. 

    Regarding medical marijuana, yes, although it depends on the symptoms (and the individual). As the need arises, there are probably people on the care team who can help with this sort of info.

    I'm not sure what you're including under the umbrella of naturopathic treatments. They do have some physicians at the medical center who use nonconventional treatments. Just a hunch, but I suspect you'd have better luck regarding treatment coverage receiving these sorts of treatments from an MD.

    Also, if your father is capable of making his own decisions about his health care, that's what he gets to do. Even if you think he's not asking enough questions or being too "old country" or stubborn or whatever. 

    All the best - 

  • ClaCla
    ClaCla Member Posts: 136 Member
    #4
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    Questions to Ask Oncologist

    I have my first appointment with the Oncologist this morning.  I went through the above questions and added them to others, and here's the final list of questions I'm taking to appointment.  I'm posting in case it's helpful to anyone else:

    • Treatments
      • Recommended treatments and why?  What specific drugs?
      • How are treatments administered?
      • How many treatments?  How long?
      • Goal of treatments, i.e. control symptoms, cure or other?  Outcome to hope for, i.e. remission, NED, or cured?
      • Pros & cons of these treatments?
      • Are there any trials I should be looking at?
      • Survival rate likely for someone like me (instead of the overall statistic for population at that stage)?
      • Can treatments be delayed to start after (date)?
      • Side Effects
        • Hair loss?  When does hair start to grow back?
        • Able to function during treatments?
        • Mood swings?
        • Weight loss?
    • Any changes to be made to my current diet & supplements?
    • My medical history, current and past problems, I want her to be aware of.       
    • Questions about Test Results -- Significance of comments on report.  (Understanding is key so I can ask about changes when periodic future PET or CT scans are done.)
      • Pathology or biopsy report
      • PET scan
      • CT scan

    Best to you all.

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