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  • Large ovarian mass... Please help!

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    Old 02-01-2014, 03:41 AM   #1
    Lionnne
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    Exclamation Large ovarian mass... Please help!

    Today is my 51st birthday, I'm laying in bed in pretty bad lower abdominal pain, with bloating and nausea from a 6.5 cm 'ovarian mass' that was just discovered in a sonogram two days ago. I'm an American, living in France with a French husband who has Aspergers (no empathy), and the medical community here is pretty 'who cares'. I'm scared, I'm alone and I don't know what to do. Should I go to the American Hospital ER or should I just go along with all the delayed appointments made by these disinterested French doctors who seem to think it's safe to just get my cholesterol, iron and blood sugar tested for now and I can wait a month and a half for the next available MRI appointment to see if I should get the cancer marker blood tests? Am I over-reacting to want reassurance RIGHT NOW that I'm not dying of cancer? Is waiting over a month for diagnostic procedures and blood tests as INSANE as it sounds to me? Help, please.

     
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    Old 02-01-2014, 07:07 AM   #2
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    Re: Large ovarian mass.. Please help!

    I'm sorry you are dealing with this! If you do not have a family history of ovarian cancer, then this mass is most likely benign. Did the sonogram report say anything besides "ovarian mass" (e.g., how much solid versus fluid, septations, etc)? Those are traits that indicate there may be malignancy. However, many cystadenomas have these traits but MOST of those are benign. The CA125 test for ovarian cancer is not accurate in diagnosing OC so no sense in having that done. (It is more accurate in assessing the efficacy of OC chemotherapy treatment.) One concern is that if the cyst gets too big, it can cause ovarian torsion which can be very painful and choke off blood supply to the ovary causing it to die. It's possible that the cyst could shrink and resolve on its own but being this big (and probably complex), that doesn't seem very likely.

    I had a 9.5cm ovarian cyst. I was over-treated and harmed by my gynecologist of 20 years. My cyst looked suspicious but had a MUCH greater chance of being benign than cancerous. However, my gyn played up the cancer risk and rushed me into surgery. Even though the frozen section done while I was in the OR was benign, he proceeded to remove the rest of my organs (uterus/cervix, both ovaries, and tubes). All he should have removed was the cyst or, worst case, the ONE ovary. There is probably little chance this would happen in a French hospital (not so sure about an American hospital in France though).

    Maybe you could get a copy of your sonogram report and take it to the American hospital. Just be sure to protect yourself via the surgical consent form if you need surgery. Please keep us posted.

     
    Old 02-01-2014, 08:23 AM   #3
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    Re: Large ovarian mass.. Please help!

    Thank you so much for your reply. It's good to hear that this is probably not a huge emergency at the moment. I've been lying in bed scared to death. I do have a copy of my sonogram results and they don't specify how much of the mass is solid, etc. It just says "ovarian mass" and that I need an MRI. I'm unhappy to hear that the CA125 is an inefficient method for ruling out cancer in ovarian issues. Do you know what the protocol is for definitively ruling cancer out? And with this much pain, and as big as the mass is, aren't I destined to at least have a procedure to remove the mass? And shouldn't that be relatively soon? And if it is cancer, doesn't it progress really fast making a rapid diagnosis pretty important?

     
    Old 02-01-2014, 09:09 AM   #4
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    Re: Large ovarian mass.. Please help!

    I would not wait as suggested. Since you have a copy of your ultrasound, and it does not say cyst, I would assume this is a solid mass, as most radiologists use those terms to differentiate solid from cystic. That said, I would go to the American hospital with your result. They can do an MRI as an "emergent" procedure, rather than as an outpatient scheduled procedure, and get you pain relief and treatment now. This needs to come out regardless so I would anticipate surgery soon if MRI confirms a solid mass. Good luck, and keep us posted on your progress. Do you have any family or friend there in addition to your husband who can be supportive and help out? I hope so, but if not, you have support and help here.

     
    Old 02-01-2014, 10:14 AM   #5
    Lionnne
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    Re: Large ovarian mass.. Please help!

    Thank you, Ladybud. Thing is, none of the Dr's here that I've dealt with regarding this mass has been even the least bit alarmed and we had one Dr today on the phone say over and over to my husband that this is NOT an emergency. France is not a good place to get sick. Socialized medicine is pretty lousy. So I'm terribly confused. I can't get ANY Dr. to advocate for me. My husband really tried hard to advocate for me since we got my sonogram results, but no-one seems to care. I have a prescription for the CA125 test that my husband insisted my GP give us (but now I'm hearing that that is useless for ovarian cancer) and an appt for an MRI in March. That's it. I'm miserable and pretty scared but I'm supposed to just stay in bed and hope for the best until March. Hope it's not cancerous... oh, and my mom and her sister died of colon cancer. Yikes!

    Last edited by Lionnne; 02-01-2014 at 11:36 AM.

     
    Old 02-01-2014, 11:29 AM   #6
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    Re: Large ovarian mass.. Please help!

    The colon cancer family history is concerning especially if your mom and aunt had it before age 50. There's something called Lynch Syndrome which increases risk of colon cancer and a number of other types of cancer including ovarian and uterine. I don't know the relative risk though. A woman without genetic risk factors for ovarian and uterine cancer have VERY little lifetime risk.

    Although the sonogram said "ovarian mass" it's possible that it could appear to be originating from the ovary when it is originating from a different structure (such as the colon). The accuracy probably depends on the quality of the equipment as well as the experience of the radiologist.

    Hopefully, you can get an MRI (or a CT scan although that emits radiation) to give a better look at this mass. I hope you get answers soon!

     
    Old 02-01-2014, 12:11 PM   #7
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    Re: Large ovarian mass.. Please help!

    Is it over-reacting to just go to the ER with something like this?

     
    Old 02-01-2014, 12:28 PM   #8
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    Re: Large ovarian mass.. Please help!

    I think under your circumstances, it is reasonable for 2 reasons: You seem to need pain control, and you cannot get necessary tests (MRI) done in a timely manner, given the possibility this is not benign. If you do have ovarian cancer, immediate removal could be life-saving. I have seen many women get patted on the head and told to come back in 6 months when they had breast lumps that turned out malignant. Why take a chance? It is easy for someone else to say don't worry, just wait, but you need to be your own advocate here and take assertive care of yourself. Hopefully, it is just a cyst and benign, but that can't be determined on ultrasound alone. I would go and insist on an MRI while you are there, so you have answers and treatment available.

     
    Old 02-01-2014, 12:43 PM   #9
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    Re: Large ovarian mass.. Please help!

    What can I say to the ER doctors and nurses to get them to stop all the dismissive scolding? I feel at a loss... I don't feel well, I'm scared, I'm in a foreign country and these doctors are really cold and kind of 'evil'. I have a younger American friend who gave birth to a baby with Trisomy 18 and the doctors at the [local Parisian] hospital didn't mention that it's pretty much unsurvivable. These poor parents had to google it after taking baby home and when they kept seeing over and over that it's deadly and then they confronted the doctors, the doctors' explanation for withholding the details was, "We didn't want you crying and making a scene here in the hospital so we thought it would be better if you found out at home where you could be upset in private." Yup. They said that. And they sent that couple home with a dying baby without any advance warning or support or anything! So, I'm nervous and lonely with this. Please 'arm' me with phrases I can use to assert myself without being rude or frantic. Thank you all.

     
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    Old 02-01-2014, 01:54 PM   #10
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    Re: Large ovarian mass.. Please help!

    Thank you WhistleDixie and (((hugs))) back!

     
    Old 02-01-2014, 01:57 PM   #11
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    Re: Large ovarian mass.. Please help!

    Hello Lionne...Your fear is understandable. I agree that you would be wise to go to the ER of the American hospital. If you present with severe pain, I would think they would treat you as an emergency, performing necessary tests to pinpoint the problem. If you tell them you were told to wait, chances are they'll tell you to wait. Whether benign or cancerous, you are in pain. You shouldn't have to take to bed and wait it out. As mentioned before, though, be succinctly aware of consents that you sign. You truly need a trusted friend at your side to help you through the paper trails, as haste makes waste with surgeries to the female reproductive system. I would request a gynecological oncologist to view the MRI once completed.

    It's cliché, but please try not to "borrow" trouble. Your anxiety will get the best of you. A biopsy is the gold standard for diagnosing benign vs. cancer. It is more likely than not, a benign cyst. Is it even possible that the "mass" could be endometriosis?

    Like the previous ladies, I am here to offer support if that helps=)

     
    Old 02-01-2014, 02:07 PM   #12
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    Re: Large ovarian mass.. Please help!

    I've never had endometriosis or any problems with my cycles and now I'm post-menopausal. So, I don't think it's endometriosis. I hope that it's benign, but I really wonder why a wait should be called for when, even if it's benign, I'm in too much pain to just be left like this. I hear your advice... focus on the pain I'm in and not that we can't get my doctors to help me. Tomorrow's Sunday so it would make sense to go to the ER on a weekend day and so I won't get questions about why I didn't just go to my Dr. I hate having to 'scheme' to get the help I need, but if it's what I have to do...

     
    Old 02-01-2014, 02:20 PM   #13
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    Re: Large ovarian mass.. Please help!

    It's not "scheming", sweetie. YOU ARE IN PAIN and misery. It is Saturday, so ER is your ONLY option. Be your best advocate. Be firm, but not rude, to obtain the care you need.

    Endometriosis is still a possibility, as long as you have ovaries. Note that it is an elusive disease overlooked by most doctors, while it forms chocolate cysts and lesions. It causes your body to form scar tissue to stop what it perceives to be "bleeding" of injury. The subsequent "spider-webbing" of adhesions can cause all of your abdominal organs to "fuse".

    No matter the diagnosis, your pain needs to be addressed sooner, rather than later. I'm not a member of the "wait and see" club=)

    Last edited by WhistleDixie; 02-01-2014 at 02:21 PM. Reason: Oh, and Happy Birthday...though celebbration is delayed=)

     
    Old 02-01-2014, 03:00 PM   #14
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    Re: Large ovarian mass.. Please help!

    Thanks for the b-day wishes, WhistleDixie! I hope things improve here soon. I'm off to the ER tomorrow.

     
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