Going for a 2nd opinion - a little help please.

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longbordz
longbordz Member Posts: 2
in Ovarian Cancer #1

Hi everybody. My sister has stage 3b Ovarian epithelial cancer.  In early June she had a substantial surgery at a small regional hospital.  They removed her ovaries, some colon, some this, some that.   Surgeon said he got everyting he could see, but wasn't set up for IP while she was on the table.   Water under the bridge.

She had her first consult with her local onc last week.  He said the next step would be both IP and IV chemo.... I  think she said a carboplatin and a taxane.

<<<Aside:  My wife has been dealing with follicular NHL, so I know about imaging, reading labs, chemo, etc as it pertains to lymphoma... and giving and getting real world advice on the Lymphomation discussion boards ... but OEC is a much more daunting cancer.  I now understand what my wife's onc meant when she said Lymphoma was a good cancer. >>>

I'm a strong believer that oncs at NCI's who see a large number of OEC cases may be able to offer a different perpective than a small regional office that sees 2 or 3 cases a year.... and I've convinced my sister to go to one of the top rated  University cancer centers to talk with a top Gyno Onc (not that her local yokel isn't perfectly competent).

So my question to all you experienced people:  What questions should I be prepared to ask this week when I take my sister in for this 2nd opinion at a major NCI ?  Also, if you're familiar with follicularNHL strategies, what shouldn't  I waste time asking?

I have 2 days to complete my "cheat-sheet" in prep for the appointment.

Thanks for your time and consideration. 

aka Longbordz

 

 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    #2
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    Longbordz, I am happy to hear

    Longbordz, I am happy to hear your sister is going to some place bigger and be working with a gynecologic oncologist who specializes in "below the belt' cancer.  Big things demand big guns.  I belive the American Cancer Society also has questions somewhere but a quick search didn't give me what I wanted.  Below is what I found awhile ago after I read a book on cancer, of course AFTER I had been diagnosed, but good for any cancer.  

    DIAGNOSIS

    Precisely what type of cancer do I have?

    Where exactly is it located?

    What diagnostic tests have you performed?  

    What further tests are necessary?

    What information will these tests tell us?

    Where do I need to go to have these tests?

    When will I get the results?  

    How will the results be communicated to me?

    Will you explain, in patient-friendly language, the pathology report to me?

    If I seek a second opinion, will I have to repeat any tests or procedures?

    STAGING

    What is the stage of my cancer?  

    In patient-freindly language, what does this mean?

    Has cancer spread to my lymph nodes or anywhere else?

    How is staging used to determine my cancer treatments?

    TREATMENT

    What are my treatment options?

    Which treatments, or combination of treatments, do you recommend?  Why?

    What is the goal of the treatments plan you are recommending?

    Who will be part of my treatment team?  What does each member do?

    How much experience do you and the treatment team have treating this type of cancer?

    Will I need to be hospitalized for treatment or is this treatment done in an outpatient setting?

    What is the expected timeline for my treatment plan?How will this treatment affect my daily life?  

    Will I be able to work, exercise, and perform my usual activities?

    What are the short-term side effects of this cancer treatment?

    What long-term side effects may be associated with this cancer treatment?

    Whom should I call with questions or concerns during non-business hours?

    Is nutritional advice given on what to eat to help in recovery from surgery or treatment?

    She is putting her life in their hands and it is HER LIFE!  She might want to conisder starting a note book with everything that is asked or said.  If possible for someone to go with her and have them to sit there and write everything down - that is their job and she gets to see if this is the doctor she wants.  It is all overwhelming.

  • LDD123
    LDD123 Member Posts: 8 Member
    #3
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    Additional question

    Sorry to hear about your sister's diagnosis Longbordz.  Great questions to ask from No Time but I would add one more, ask the Doctor about short term fasting before and after chemo.  I am in my 3rd round (8th week) of Carbo and Taxol,  the side effects are getting worse so I am surfing the net for anything that might help me function normally.  I came across an article by Dr. Valter Longo from 2008 (updated periodically) that was encouraging.  I will be asking my Onc. on Wednesday.  Best of luck to your sis!

    Lori

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #4
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    Questions

    Longbordz,

    I am glad you are taking your sister to a larger hospital for a second opinion.  

    Another question to ask, if the doctor also recommends IP/IV chemo: A recent study indicates that the IP/IV chemo is no more effective than IV chemo alone. It was a disappointing result, as for years gyn/oncs felt that the IP addition improved outcomes.  But this recent study indcates otherwise. Adding IP to regular chemo can be a pretty rough treatment and requires a hospital stay.  So, this is something to consider in making that decision. 

    With regard to fasting, mentioned by LDD123, don't be discouraged if her doctor nixes the idea.  Dr. Longo's research strongly supports fasting around chemo and shows it is not damaging to the patient.  Oncologist will intuitively feel it is not a good idea because cancer patients often develop a condition called cachexia, which is a metabolic wasting condition.  They tend to recommend eating to maintain weight, but I know a number of women who are using this approach with good results.  Fasting increases the effectiveness of the chemo drugs and reduces the side effects of the treatment.  There are specific guidelines about what to eat before and after the fast and how long to fast, so looking up Dr. Longo's protocol would be beneficial if she decides to use this approach.  Most conventional doctors don't recognize fasting as a treatment option because it is not an FDA approved treatment.  You may also want to look at a thread I posted a few weeks ago about a trial for ovarian cancer patients, incorporating a ketogenic diet.

    Good luck

  • longbordz
    longbordz Member Posts: 2
    #5
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    Post 2nd opinion

    Thanks for the thoughts. 

    The visit went as I expected, more or less, based on my wife's many visits for fNHL:  weigh in, med interview, physical, conference. 

    The onc did not endorse any concurrent therapies (parps or MABs) .  That kind of surprised me since I thought the rupacarib study looked relatively benign (like rituxan), and wasn't a random/blind study.  Oh well. 

    The onc said that the IP/IV vs 'IV only' studies  had not convinced her that 'IV Only" was better than Ip/IV, so it will be IP/IV with 2 ports. Rough road to hoe.     Onc ordered broad DNA testing  so we can mull the BRCA 1 BRCA 2 issue. 

    Next stop, ports and chemo.

    Thanks again.

     

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