New to everything

Hi All! 
My mother has just told me she has stage 1?C? Ovarian cancer which was found in the peritoneum. (Ovaries were taken last year). She is scheduled to start chemo and avastin this week via an internally implanted dispenser? My parents have been extremely secretive and this has all been an overnight shock. I have so many questions, they wont talk to me about it and I dont know where to start. They are in the states and I'm in Canada and I feel so unable to help from a distance.
1st, they have not sought a second opinion and my first priority is making sure that they get one prior to embarking on this course of treatment. Is chemo and avastin the best thing available? How do you go about finding trials? Is there anything promising that is not being used in the states? Are cancer counselors a thing and how do you find one? What should I expect of her treatment and how do I support her/make her most comfortable? What creature comforts have y'all found most comforting? How do you assemble a treatment team? How do you incorporate integrative and holistic medicine and discern between what is real and what is snake-oil? Please someone help me find a starting point. SO overwhelmed.

Comments

  • Hello @yduby - welcome to the site and so sorry to hear about the recent diagnosis for your mom.
    And yes, that is difficult for you to be in Canada and your family in USA - distance as well as the current virus situation doesn't help and complicates everything. 

    There are lots of very helpful comments on this site about women (and some of their supports) who have been through many of the surgeries and treatments. I hope you can find some support and guidance here; a least some help to ask the questions so you can offer her support.

    Also, if you review the main website - www.ovariancanada.org there is an abundant of information there about treatment, living with the disease and support systems - again, Canada based.

    There are many variables that may be considered - stage, grade, age and any other health issues of the person, location, treatment centre location,  etc. Yes, you are helping support her by asking to see if there is a second opinion or an examination of a proposed treatment plan and options (as in, you could ask why or why not an option or a consideration in her case) Just like each person is different and unique, so may be the treatment plan/options.

  • Hi...and welcome to tge site. Another useful source of information for you is the Clearity foundation web site. They have clear standards of care supported by scientific evidence which i found very helpful. They are also great at answering questions by email or phone.
    good luck to you, and I hope your mom will talk about this. to you soon. My daughters have been an immense support to me.
  • MarilynOCCMarilynOCC ✭✭✭
    Hi @yduby.  I hope that a few things have been sorted out for your mom and your understanding of what's happening. Here are some further thoughts for you:
    1.  A diagnosis at stage 1 and 2 is considered early.  Stages are then divided by 1a, 1b, 1c, 2a, etc. So, a stage 1 diagnosis means that the cancer was found early so that is good.
    2. avastin and chemo.  Treatment and treatment drugs are often determined by the kind of ovarian cancer that a woman has, as there are many different types of ovarian cancer, not just one. Chemo and avastin can be a common treatment approach.
    3. clinical trials.  Your mom may or may not qualify for clinical trials depending on many factors.  The best person to discuss this with is her doctor.  You can certainly ask your mom if this has been discussed with the doctor along with a second opinion.  There are often standard treatment protocols, particularly when first diagnosed, so a second opinion may or may not be necessary.
    4.  There are lots of discussions on this site about treatment and what other women have experienced.  You may find some helpful tips.
    5. Ovarian Cancer Canada has a guide called, By Your Side, which is an A-Z about ovarian cancer that you may find helpful.  It is written for women in Canada, however, the basic information would not be different to the U.S. Here is the link to order it on our website.

    It can be very scary to hear that your mom has cancer so I can understand your fears and concerns, particularly as it sounds like your parents really haven't kept you in the loop.  Perhaps they didn't want to worry you until they knew exactly what was going on.  It is also complicated by COVID which means you can't travel and must stay in touch long distance.    We have regional directors across Canada if you want to talk to someone.  Here is the link so you can identify the appropriate person based on where you live: https://ovariancanada.org/about-us/our-team?lang=en-ca

    I hope you have some support here for yourself.  Do you have people you can talk to?




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