ovarian cancer risks...?? sorry to put this here

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  • Momine
    Momine Member Posts: 7,859
    edited November 2013


    Winter, yes, it is pretty nifty. If I ever move away from Greece, I will miss the convenience of these labs. Apparently some hospitals abroad have started having testing carried out in Greece, because we have this network of labs that apparently are good as well as cheaper than in most other places.

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  • wallycat
    wallycat Member Posts: 3,227
    edited November 2013


    If anyone is following this or cares,


    My sister's mass, thus far, appears B-9 !! WOOHOO.


    I have also been accepted into the Rivkin early ovarian cancer detection study. They will call to schedule my first appointment. Then I will have 2 CA-125/year and one transvag in seattle. If MD Anderson is right and CA-125 elevation compared to your baseline may indicate something, then I feel at least one part of me is being watched. I get no other scans, labs or monitoring.

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  • ali68
    ali68 Member Posts: 1,383
    edited November 2013


    yes i have been following and i'm so pleased for your sister. Good news for you too. I still have abnormal cells and have to go tgrough all the tests again in april. My mammo is dec 16 so fingers crossed for that. So happy for you both xx

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2013


    Wally, I'm so glad you got accepted. The studies on following CA-125 over time look promising. I know tumor markers are not reliable for everyone, but when I had ovarian cancer my CA 125 was almost 1000 and returned to undetectable after my surgery. They will continue to check mine for at least 5 years.

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  • wallycat
    wallycat Member Posts: 3,227
    edited November 2013


    Thank you all for the good wishes and congratulations.


    Melissa, are you BRCA 1 or 2?? Mine was negative --not that that means anything with newer discoveries.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2013


    Wally, they've done extended genetic testing on me but I'm negative for BRCA, CHEK2, PTEN & I don't remember what else. Interestingly, they think the mucinous ovarian cancer does not elevate my breast cancer risk very much. Originally they were looking at Lynch Syndrome as both my dad's mom & sister had colon cancer.

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  • wintersocks
    wintersocks Member Posts: 922
    edited November 2013


    Wallycat,


    great news for your sister!


    X

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  • wallycat
    wallycat Member Posts: 3,227
    edited December 2013


    Wintersocks, any news on your ovary??


    Hoping for the best.


    I am still waiting for a call to schedule my ultrasound.

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  • wallycat
    wallycat Member Posts: 3,227
    edited December 2013


    Just an update. My sister's mass was indeed b-9 and not associated with any girl-parts. It was a weird, b-9 tumor, attached to her rectal area.


    My ultrasound is tomorrow ...friday the 13th. OY.


    It never gets easier.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    wallycat, I always think of Friday the 13ths as going to be wonderful days. So far it's worked. Hope it works for you....!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013


    Wally, my grandparents married on Friday the 13th and were together 62 years until my Grandmother died so we consider it a good luck day!

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  • wintersocks
    wintersocks Member Posts: 922
    edited December 2013


    Wallycat,


    Thank goodness your sister's report is B9. I do not have my report yet, I am surprised that it is not here. I am sure he said he would write to me, but not every hospital here does write to the patient, sometimes GP gets to hear only.


    I hope the ultrasound tomorrow reveals what is going on and you can put your mind at rest and enjoy Christmas.


    My son was born on the 13th, but it was a Tues, but obviously sometimes it falls on a Thursday. He was indeed a nightmare!


    He is 19 now.

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  • wallycat
    wallycat Member Posts: 3,227
    edited December 2013


    Update...


    I was shocked to get a call today from Rivkin center. This lady is AWESOME. She said she wanted to phone before she left for the day because she knows the stress women go through.


    My CA-125 is well below their tight requirements. WOOHOO. It was lower when I was 38, but who knows what or why.


    My ovaries are shriveled. Who would have thought THAT was a good thing :-)


    They did say there was an incidental finding of "slight" uterine thickening....not even mm worthy, but noted.


    I had an endometrial biopsy in 2010 that was b-9 (spotted due to tamoxifen) but switched to armidex and have been off of all meds for over a year....


    When I had my routine pelvic, they said uterus felt "beautifully small"....who the hell knows.


    The maze continues but seems the ovarian worry is done for now.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    great news on the ovaries!


    spotting on tamox is very common and not an issue; it's abnormal heavy bleeding that is problematic. In fact, they wouldn't do a transvaginal US on me years ago when I asked for one, because of the lack of any bleeding issues; but had they done one, they might've found my ovarian mass a lot earlier when it could've been dealt with more easily,perhaps a much smaller less invasive surgery (rather than my TAH/BSO and the immediate surgical menopause that I had to go thru). So I always tell women to have a yearly transvaginal US when on tamox to monitor both the uterine lining and the ovaries.


    anne

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2014


    Awb, I am sorry for what you went through.


    of the 5 years, the first 3-1/2 were tamoxifen; the last 2 were arimidex and I have been on zero meds for the last 1.5 years.


    The thickening is an incidental finding. No spotting, no bleeding...which doesn't mean much....I'll post back if and when I know


    more.

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2014

    So I had the full pelvic on Monday.

    I'm posting incase anyone is still reading this and has similar issues and questions.

    My results are a 7mm thick endometrium (too thick for post menopause) and a polyp.  No bleeding.

    Anything over 5mm is considered abnormal and tamoxifen that I used for 3-1/2 years put me at increased risk for uterine cancer so the polyp is probably going to be investigated.  I emailed all my providers and am awaiting the next path in my medical maze.

    I am assuming I will have to have a hysteroscopy and if it is b-9, then nothing is done.  If it is not b-9, then hysterectomy.

    I will continue to post updates for those who care.  My ovaries were perfect little raisins. :)

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  • lekker
    lekker Member Posts: 594
    edited January 2014

    Glad to hear about your raisin-ovaries!  Please keep posting as you learn more.  If you ever take xanax or valium for anything, I'd recommend getting a ride to the hysteroscopy and taking one before the procedure.  I know many women have no problem, but I find uterine biopsies and hyteroscopies (had several of the former and one of the latter) extremely uncomfortable and better tolerated with meds.  Hoping to hear definitive good news soon! 

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  • wintersocks
    wintersocks Member Posts: 922
    edited January 2014

    Wallycat,

    Yes, I am still interested in how you are. It's disappointing that you have to go back for more tests. My result came back b9 - endometrial cyst. The left ovary had died along with the f tube and the right ovary was stuck down by adhesions, that came out. 

    Please. keep us up to date on how you are and I will be thinking of you.

     

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2014

    Congrasts wintersocks.  B-9 is wonderful!

    What a roller-coaster just to get care.  So the local gyn only works part time and is also leaving for vacation for 3 weeks.

    Don't move to port townsend if you want services!! (same with my cracked molar on xmas-eve...not a dentist to save your life), but I digress.

    My onco (LOVE HER and thank you to the person on this board that recommended her!) referred me to a gyn she worked with in Silverdale.  Called their office and they claimed first appointment available in March.  Spoke with a "triage nurse" and they are seeing me on the 27th.  I assume at best, I will get a hysteroscopy; at worst a hysterectomy if something shows amiss.  Bad news is the drive is ONE hour and 15 minutes ONE WAY and this is the "meet/greet" so will have to schlep out there at least once to get the first procedure done.  I told the nurse practitioner in PT that my best option would be to get gut like a fish and have no need for a gyn; stupid black-hole-of-a-city.  It is mighty pretty here, you just don't want to need anything close by.

    I was spoiled in WI where you could swing a cat and hit 50-100 doctors of any variety in a 4 block radius.

    So that is the current saga.  I will update as I hear and know more for those following.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited January 2014

    i want an ooph but was refused, and they cannot see my ovaries on mri or u/s but i get an anual brief ultrasound and was told if anything is seen its bad! 

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  • wintersocks
    wintersocks Member Posts: 922
    edited January 2014

    Lily, my u/s mri could not find my left ovary. i was told that in post-men women they can shrivel and die. That's what did happen and half of the fallopian tube too. 

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  • wallycat
    wallycat Member Posts: 3,227
    edited February 2014

    Update for anyone following (bottom line...waiting for "the call" to see what pathology says)


    Here
    is my saga....so I was accepted to the rivkin early ovarian cancer
    detection study. My ovaries are nice little raisins and my CA-125 was a
    13; well in the normal range...but oops, they noticed my endometrial
    lining was thickened.

    Back I went for the full pelvic ultrasound (and thankfully, paid
    for by rivkin, never mind the 2+ hours schlep and ferry ride to
    Seattle---I swear we live like we were in witness protection!).
    So
    the results were a polyp and 7mm thickened lining. I would never have
    known. The nurse practitioner I went to for my annual exam said I had a
    compact uterus and no bleeding and everything was great....so now that
    they know I have a polyp and thick endometrium, they can't just leave
    it.

    The nurse practitioner cannot do a hysteroscopy/D&C and
    polypectomy, the one and only gyn in this godforsaken wasteland here is part time, 1 day/week, plus,
    oh...he is leaving for 3 week vacation.
    Went 1-1/2 hours away to a gyn my oncologist raved about....get this...

    I had to phone them to ask about meds/stopping/pre-op instructions. Would you think that would trigger something??
    I was to get a call 1-2 days before surgery...so finally, the night before at 1pm, I call. NO RECORD of my going.

    The idiot nurse starts SCREAMING at me that they start surgery at
    6am and I will come when they say (never mind checking to see if my
    surgeon can be there) and they transfer me to the doc's office. I get
    this lady that says she just got back from family leave and oh, her
    mother died and she starts crying and yelling at me that she needs to
    figure out what is going on.

    WHAT on earth am I missing. I am paying, I am the patient and all
    these idiots are yelling at ME??? never mind it was all THEIR screw
    up!!!
    So they move me up an hour and I show up terrified that
    this is a fly-by-night org. The anesthesiologist is asking me if I
    really think they will kill me or just saying it for fun...HUH???? my
    surgeon shows up and would not even LOOK at me.

    She finally muttered...I think the ball was dropped in my office.
    Would you think they could say I am sorry or forgive us for our error
    or this will all be fine. I am going into surgery with my surgeon hating
    me!! PLUS, I thought I would just get twilight sedation and ended up
    getting a general anesthetic. Would you think someone should have told
    me???

    So that was Thursday....and stuff is sent to pathology and I have a
    follow up on the 19th. I hope they phone me sooner than that because
    if I get the all clear, I plan to cancel and never see this witch again.

    My onco gets back on the 13th and I hope she is ready for an ear-full.
    Can you imagine????
    If it is cancer, I have to see an onco-gyn anyway and skip the witch.
    I
    am just a mess. I am having PTSD from this whole experience. I don't
    know if I can sue them for negligence or at least make them worry I
    would do it. THen they would know how I feel!!!

    I am terrified I will be told cancer again and that I will have to have more surgery.
    I am literally just a mess right now. I weep at the drop of a hat. I should be inhaling valium but have held off.
    My blood pressure skyrockets the moment I walk into a doc's office and no one thinks I should be concerned.....

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  • wintersocks
    wintersocks Member Posts: 922
    edited February 2014

    wallycat,

    gosh you sound like you have had a really hard time. All the more stressful for the horrible doctor, it really just does make everything so much worse doesn't it? When I saw my gateroentologist (trying to get to what was the matter with my ribs, he was just beyond horrid.) That's not the first time I have left a consultation literally shaking. I really feel for you on that one.

    Hey, hold up thinking it might be cancer! no-one has mentioned that? although it's natural that your thoughts fly to the worse case scenario after what we have been through. I thought mine might be too, and it wasn't.  Try to take a deep breath....  

    If it's any help I am on the chemical  cosh (anti-anxiety/anti D's) I have no shame in saying that after 2 years of medical treatment (non-stop) I just couldn't get by without them. Perhaps you can see your GP and get something? just to see you thru to getting these path results?

    3:09 am here in the UK,  and unable to sleep and saw your name. Wallycat, I really do feel for you going through this as I did too, so I am sending a big big hug. xxxx

       

     

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  • wallycat
    wallycat Member Posts: 3,227
    edited February 2014

    UPDATE!

    doc just phoned and said there were THREE polyps. Yikes.
    Everything was b-9. Endometrial lining---b-9. WOOOOHOOOOO.

    Then
    I proceeded to scream at her for being a cold fish and worse than any
    male doc I ever had and how dismissive she was and I told her that we
    are not slabs of meat just paying their salaries; that we have feelings
    and fears and just because they do this daily does not mean the people
    they see do so. That we EXPECT compassion and care. That patients
    understand when mistakes are made, but an apology would have been nice.

    She said she was sorry I felt that way and I screamed at her
    saying....you're sorry that I am upset??? What you SHOULD SAY is that
    you are sorry your office screwed up and caused me this much angst.
    I said...this is your take-away message....your patients have feelings; live up to it.

    And it would have been nice to tell me which kind of anesthesia I was getting!!!!!

    ugh...
    glad
    the worst of it is over. She said the spotting and bleeding on and off
    could take up to 4 weeks to resolve. Hopefully this never happens
    again. If it does, I am having my girl parts removed.

    Thanks for listening :-))

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  • Lily55
    Lily55 Member Posts: 3,534
    edited February 2014

    Great news, hope you will follow up your rant in writing so its on record.........compassionate care makes a huge difference

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  • cp418
    cp418 Member Posts: 7,079
    edited February 2014

    wallycat - the BEST news!!!  Hope this gives you some peace of mind and helps with any future decisions. Also, I had read your previous post with all the appt confusion and horrible communication.  I'm so glad to hear you told this Doc how patients should be treated as SHE is responsible for her office staff.  Good for you!!

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  • wallycat
    wallycat Member Posts: 3,227
    edited February 2014

    Thank you.  Yes, great news.

    I am not sure how to even go about filing a complaint.  I had thought about contacting a lawyer just to put the fear of god in 

    them so they would know what real fear and worry meant.

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  • hlya
    hlya Member Posts: 484
    edited April 2014

    Your story reminds me of the first time when I was told I got BC,  that was a female doctor in a walk-in clinic.  She was announcing it to me without any facial expression like a robot, then I was totally freak out I didn't know what questions to ask, I was so scared....I wish she said something - I don't know what she should say but if I was her I would say something to the patient,  but still a robot face.....once I stepped out of the room, I suddenly wanted to ask something and went back to the room, and she was very rude to shut the door right in front of me. 

    I had been sitting on the bench outside the clinic for an hour crying and feeling helpless.   That was very hard time in my life.

    (Luckily I soon found this forum with so many amazing ladies helping me going through that time. )

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