know a good Ovarian Cancer site as good as BCO?

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iodine
iodine Member Posts: 4,289
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis
know a good Ovarian Cancer site as good as BCO?
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  • iodine
    iodine Member Posts: 4,289
    edited June 2012

    I'm almost 10 years out from BC and was here for many years.  I've been dx'd with ovarian cance 8cm. with severe ascites --had 2200 cc drained last night cause I just stand it anymore.  Had a CT yesterday that showed the tumor and will likely have surgery late next week.  I am in denial and mostly stunned.  At least I'm not yet as panicked as I was when first dx'd with BC. 

    Any info you may offer will be greatly appreciated. 

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  • bak94
    bak94 Member Posts: 1,846
    edited June 2012

    I do not know of any specific site but I have seen some when googling for info, so I am sure they are out there. I have just finished treatment for my second bout with bc, my first was about the same time as yours! I remember you from the boards, I think my user name was Ivanna back then but I forgot my password and had to re register. I am brca 1 pos, are you brca pos? I am having a hysterectomy in September because of this. I hope the surgery goes smoothly for you with a quick recovery.

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  • iodine
    iodine Member Posts: 4,289
    edited June 2012

    Thanks for taking time to respond -- I remember you as well!  I've not been tested for brca -- guess I'll ask for it.  Should I tell my daughter to get tested?  My mom was dx'd with a tiny ovarian cancer before she died of a stroke.  It was found when she was getting surgery for something else entirely.  I've  thought I was being vigilant about ovarian, but obviously I wasn't.  I should have been getting pelvics I guess but after a hyst. at 35 I just didn't get them any more.  Dumb, I know.  I've had my surgeon cking when I had a lap gallbladder and such, but that was about 10 years ago, too.  <<sigh>>  I am looking at chemo hats and wigs.  Maybe when I tell my kids about this new dx I'll finally get out of denial about it.  Not much I can do.

    I found one ovarian site but the gals there are all over me for choosing my gen surgeon to do the surgery (called debulking, LOL, that's a new one for this old nurse!)  and not a gyn/onc.  I trust my gen surg cause I know where he trained and know his experience.  I'll get a gyn/onc for treatment and to help with staging.  I also know my pathologist, so that will help.  He'll get a second opinon too, I'm sure.  My first go with bc, the path. misdiagnosed me and it's only because I demanded a second opinon that I was able to deline chemo.  Doesn't look like that will be the case now. 

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2012

    Oh Iodine!!  I am so sorry to hear about this.  I remember you so very, very well when I first joined here.

    I don't know of any good sites, but NIH and pubmed have lots of information and you can search area-specific to see if there are any peer reviewed journal abstracts/articles (I would be happy to send you links if you want to PM me.  I did medical lit research for a living; medical librarian and wellness doc).

    Do post back to let us know how you are doing.  I sort of feel like we are all a big family here.

    Funnily enough, I was reading about pelvic exams and it stated that traditional pelvic exams are great for pap smears, but rarely dx ovarian cancer this way until it is large enough to palpate; so don't beat yourself up.  I swear if I get a hysterectomy, I want to be gutted like a fish....sigh.

    Best to you, Iodine!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    Definately test for BRCA 1/2.  One of the telltale signs is personal or family history of breast and ovarian cancer (OC). How old were you when you had BC? With your family history of OC and personal history of BC I'm stunned that you were not tested for a gene mutaion.

    There is no reaso to have your daughter tested for the gene unless you test positive but it might be prudent to have her start mammograms early and have an annual transvaginal US beginning 10 years prior to your age of OC DX due to your history

    Check out the FORCE site for hereditary breast and ovarian cancer. (HBOC)

    Here are some resources:

    Ovarian Cancer National Alliance

    The Cancer Forums - Ovarian Cancer

    I am wishing you the best. 

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  • Teka
    Teka Member Posts: 10,052
    edited July 2012

    iodine,

    I'm sorry!!

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  • AMP47
    AMP47 Member Posts: 200
    edited June 2012

    Hugs to you iodine.  I always read Wally Cats post - I find her to be very smart woman.  I stumbled on this thread reading one of her post.  

    My doctor just order a blood test to check for ovarian cancer.  Although, I have annual pelvic exams,  no symptoms,  paps along with all the other test the same year I was diagnosed, I had a benign polyp.  So, I worry about this silent disease. I assume the blood test is how she deals with her worry about the possibility.  

    I wish you the best.  AMP 

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  • iodine
    iodine Member Posts: 4,289
    edited June 2012

    Thanks, ya'll.  I'll be checking into the links and appreciate your input and support.  Just home from the preop appt. Surg. is Friday and frozen section will determine what's what.  Good news is that ascites fluid hasn't shown cancer cells --so that's a Good thing! 

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  • sam52
    sam52 Member Posts: 950
    edited June 2012

    Dotti - I'm so sorry. I remember you well as another 'oldbie' here. 

    I can well imagine you feel stunned; I hope your surgery goes well and you get a treatment plan soon.

    Wishing you the very best.

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  • Teka
    Teka Member Posts: 10,052
    edited July 2012

    iodine,

    Yes, excellent news!!!

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  • iodine
    iodine Member Posts: 4,289
    edited June 2012

    lizdehart, thanks for the info.  They wern't testing for brca when I was dx'd in '02, as I was told by my dh, I had "garden variety" breast cancer.  LOL, it hurt my feelings at the time, but I got over it.

    My daughter is 43 now and has been getting mammos for a while, I helped her "discuss" it with her insurance company to make sure it was covered at her early age.  Now she will have to be closely monitored for ovarian, too.  Bless her heart.  I'll need to tell my other family members too.

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  • learnin
    learnin Member Posts: 205
    edited June 2012

    With that family history, maybe your daughter should just get those ovaries out! Screening with blood work, ultrasounds, pelvic exams - they rarely pick up ovarian cancer early enough. If you had BRCA testing, it may help her and other family members make those decisions. Sorry you have to go through this.

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  • Isabella4
    Isabella4 Member Posts: 2,166
    edited July 2012

    Dotti...another who remembers you well.

    So sorry this is happenning to you after all the bc trouble.

    I do hope you can get this sorted, and find a site that is as informative as this one.

    Wishing you well. Hugs.

    Isabella.

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  • ginger2345
    ginger2345 Member Posts: 517
    edited September 2012

    Oh, Dotti, I am so sorry to hear this news and hope you've found a good site. bc.org is quite above average as far as good info, supportive info from experts, and nice folks. I don't blame you for going with who you know and I hope you're doing better by now.

    I'm back her too unfortunately. I signed in to check the DCIS board and before I knew I had a new forum--Stage 1. Just found out last week; surgeon appt tomorrow so I'm just starting down this road again.

    I am thinking about you and enjoyed sharing a few private messages with you back in our former lives. Remember, my husband is an internist and I his office mgr. Ginger 2345

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