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    Old 01-26-2017, 03:22 PM   #1
    JerseyGirlinNM
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    25cm complex ovarian cyst

    Hi everyone!
    I am sorry this is so long! I keep getting led back to these boards and the wealth of first hand information they have to offer. You've all been an emotional life saver.
    I’ve been on the internet constantly for the past month searching and researching in an attempt to educate myself as to what is going on with me so I’m not at the complete mercy of my Doctors’ decisions and can take an active part in my care. Whether or not they allow that is another story. I’m 49 years old and post-menopausal (no period for 2 years). I went to Doctor mid-December for abdominal pain which is something I had gone to her with over a year ago but this time I had had a period and knew this was much more serious and she couldn’t play my issues off to menopause and weight gain.

    Tests on 12/21/2016:
    Real-time trans-abdominal and endovaginal pelvic ultrasound, impression: “A complex cyst within the right adnexa measuring 17.7 x 22.5 x 25.8 cm. This may represent a cystic mass. Thickening of endometrial stripe at 9mm which may be related to hyperplasia, polyps or carcinoma.”

    Real-time abdominal ultrasound, impression: “Large cystic lesion extending from right pelvis to right upper quadrant, concerning for a cystic ovarian mass. Borderline hepatosplenomegaly. The liver is echogenic, likely related to fatty infiltration”

    Test on 12/30/2016:
    CT of Abdomen and pelvis with contrast, findings:
    Abdomen: Everything is normal, clear or unremarkable including the spleen. Liver has fatty infiltration.
    Pelvis: “There is a large cystic structure arising from the anterior right pelvis which extends into the mid-abdomen. This measures 25.0 cm transverse x 17.6 cm AP x 23.8 cm craniocaudad. There is a septation within the superior margin laterally on the right measuring 4.4 x 5.0 cm with a rounded configuration.
    No free fluid is seen. There is no free air. “
    Impression: “Large, complex, cystic structure arising from the right pelvis. Given the size and complexity, this is concerning for a neoplastic process, likely ovarian in nature.”

    I went to Gynecologist 1/25/2017 who reviewed my files. He wanted to do an endometrial biopsy but my cervix would not cooperate so that was unsuccessful. He is sending me to a Gynecological Oncologist on 2/1/2017 and in the interim has ordered blood-work: CA125, Inhibin A, Inhibin B, and HE4, Ovarian Cancer Monitoring.

    I’ve learned so much this past month. I’ve researched almost every single word of the test findings and impressions and learned lot of definitions I wish were not now a usable part of my daily vocabulary. I know most of what they’ve found so far is not good news but my hope is that it is all “contained” and surgery will take care of things and nothing has spread.
    I guess my assumption is that my appointments would have turned into a discussion for surgery. I have a mass the size of a volley ball. It has to come out and with a 9mm endometrial lining I’m assuming they would want to do a hysterectomy as well. I’m not sure why the doctor is ordering monitoring tests and why the biopsy if everything is going to come out which he said it would but it would change things as far as treatment (radiation prior to surgery?). I feel like they’re just trying to get in some quick procedures for the money before actually doing the surgery. I’m just feeling overwhelmed and confused at this point. Again, I'm sorry this was so long.

    Last edited by JerseyGirlinNM; 01-29-2017 at 11:08 AM.

     
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    Old 01-26-2017, 03:34 PM   #2
    sgtgrl
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    Re: 25mm complex ovarian cyst

    I am so sorry you are going through this. I wish I had some beneficial advice. I had a scare over the summer with a cyst and did a ton of online reading, searching etc. so I can somewhat relate. please keep us updated on any and all findings. I will be praying for you and sending positive thoughts xx.

     
    Old 01-27-2017, 12:37 PM   #3
    STLouisgal
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    Re: 25mm complex ovarian cyst

    I was in your shoes 11 years ago when I was also 49 and wish I'd done things very differently. I ended up being grossly over-treated (hysterectomy and ovary removal - oophorectomy) even though my complex ovarian cyst was benign.

    I have learned FAR more than I ever cared to know since then, the main one being that the uterus and ovaries have life long functions. But I have also learned that hysterectomy (uterus removal) and oophorectomy (ovary removal) are grossly overused because they are so lucrative. Some sources say that 90% are unnecessary.

    It quickly became apparent how important my organs were to every aspect of my life and health. I aged horrifically fast for starters. I can explain further if you'd like.

    My surgeon had been my gynecologist for 20 years so it was hard to see through what I realized afterwards were scare tactics and deceit. He also evidently collaborated with the oncologist to whom he referred me (as discovered from my medical records). Like you, he also ran some tests that seemed a waste because he planned to remove everything anyway. And he rushed it all making me think the worst!

    My intuition told me something wasn't right about some things he said and did but having trusted him for so many years, I dismissed them. I regret it every day!

    I wish I had listened to my inner voice and sought out a surgeon who would remove JUST the cyst (cystectomy) if the frozen section was benign. If I had it to do over again, I would have revised the surgical consent form making it clear what could and could not be removed and under what circumstances (cancer or not).

    Most ovarian cysts, even complex ones and even in post menopausal women, are benign. I've read too that size is not an indicator of malignancy. Benign ovarian tumors can get quite large. The CA125 test cannot be counted on since benign conditions can cause an elevated result. I'm not familiar with the other tests.

    As far as your 9mm endometrial stripe, I know of a few post-meno women who've had a stripe around 10mm and none of them had hyperplasia or cancer. I've read that there's a medication (I think it's typically used to treat high blood pressure) they can give or something they can insert in the cervix to soften it a day or two (not sure of exact time frame) before a biopsy. But a D&C would be another option to get a biopsy and thin out the lining at the same time. Hysterectomy would seem overkill not knowing if you even have hyperplasia or cancer. And most hyperplasia or a thick lining without hyperplasia is treatable with progestin medication.

    Sorry for the novel... I hope it helps!

     
    Old 01-28-2017, 02:09 AM   #4
    JerseyGirlinNM
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    Re: 25mm complex ovarian cyst

    Thanks SGTGRL. I appreciate the kind words and good thoughts. I will definitely keep you posted.

     
    Old 01-28-2017, 03:28 AM   #5
    JerseyGirlinNM
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    Re: 25mm complex ovarian cyst

    StLou, I truly appreciate your detailed post. You have no idea how much it helps. I was hoping you would, I read a post of yours you had put up in response to someone else and you listed the symptoms you've been suffering through since your hysterectomy. It is almost exactly what I've been going through prior. My initial thought in learning about my cyst is that it caused my symptoms and early menopause. 47 is not ridiculously early, but a little bit early and even the ultrasound tech took one look at the screen and asked if I went through early menopause. When I had first appointment with gyno I thought, "finally" they'll take this out and someone can regulate my hormones and I also thought it would solve so many of my other issues, not just the lack of hormone issues (which NO ONE was willing to listen to me before), but the back pain and fatigue. But then the Dr started talking cancer and hysterectomy and radiation and I felt stupid that this is a fight for my life and I need to sit down and shut up and do what I'm told. The problem is....I'm not good at that, lol. But, God forbid you go in to the Doctor's office and have an idea of what you would like to play out or have a say in decisions and if you even mention that you did research online and they look at you like you're trying to convince them of a conspiracy theory or aliens landing in your back yard.
    You're helping me to clear my head and take a breath and say "wait a minute, not so fast" and it is really what I needed to hear right now. So do I run all the individual tests prior? That will take a while and I am so uncomfortable and the back pain is becoming debilitating. Or do I just have them do the surgery and biopsy everything while they're in there and only take out what is affected. Can I even ask for that? Ugh, its all so much......

     
    Old 01-28-2017, 07:14 AM   #6
    STLouisgal
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    Re: 25mm complex ovarian cyst

    Quote:
    Originally Posted by JerseyGirlinNM View Post
    My initial thought in learning about my cyst is that it caused my symptoms and early menopause. 47 is not ridiculously early, but a little bit early and even the ultrasound tech took one look at the screen and asked if I went through early menopause. When I had first appointment with gyno I thought, "finally" they'll take this out and someone can regulate my hormones and I also thought it would solve so many of my other issues, not just the lack of hormone issues (which NO ONE was willing to listen to me before), but the back pain and fatigue.
    Since ovarian cysts can disrupt normal hormone production, it would certainly seem possible that this large cyst put you into a menopausal state which could be temporary or permanent. (But even so, I've been surprised to hear how many women without any gyn issues have post-menopausal bleeding in the early years of menopause that ends up being nothing more than sporadic ovarian activity. Of course, any post-meno bleeding has to be investigated to be sure it's nothing serious.) Once the cyst is removed, it's possible that your cycles will start back up. If your ovary is removed, your other one may shut down or produce fewer hormones. A surgeon with good cystectomy skills could probably save your ovary. Contrary to what we are told or led to believe, the ovaries produce hormones a woman's whole life. I read a study that says levels drop at menopause but then gradually increase with androgens (such as testosterone) reaching reproductive levels in a woman's 70's and continuing at that level. Some is converted to estrogen as needed. Keep in mind that cystectomy is a more delicate and time consuming surgery and may not pay any more than oophorectomy (ovary removal) which is part of the reason oophorectomy is more common.

    Quote:
    Originally Posted by JerseyGirlinNM View Post
    But then the Dr started talking cancer and hysterectomy and radiation and I felt stupid that this is a fight for my life and I need to sit down and shut up and do what I'm told. The problem is....I'm not good at that, lol. But, God forbid you go in to the Doctor's office and have an idea of what you would like to play out or have a say in decisions and if you even mention that you did research online and they look at you like you're trying to convince them of a conspiracy theory or aliens landing in your back yard.
    I totally understand when they start talking cancer and you feel like you need to back down and just do what they say. But in other specialties, they don't remove organs. They remove the "diseased" tissue and keep the healthy tissue. Granted ovarian cancer is different but the odds are very much in your favor that this cyst is benign. If the frozen section proves it is, you shouldn't need to lose ANY parts if you have a good and ethical surgeon. I know some doctors do not like patients researching on their own. Frankly, after my experience, that's a red flag. As a patient you should advocate for yourself. YOU are the one who has to live with the consequences, not your doctor.

    Quote:
    Originally Posted by JerseyGirlinNM View Post
    You're helping me to clear my head and take a breath and say "wait a minute, not so fast" and it is really what I needed to hear right now. So do I run all the individual tests prior? That will take a while and I am so uncomfortable and the back pain is becoming debilitating. Or do I just have them do the surgery and biopsy everything while they're in there and only take out what is affected. Can I even ask for that? Ugh, its all so much......
    It's SO important to go into this with a clear head. My gyn's scare tactics and rush to surgery as well as my long history with him severely clouded my thinking. My inner voice was weak in comparison so I dismissed it. And with hysterectomy and oophorectomy being so common, I allowed myself to think it couldn't be "that bad." Boy was I wrong! I wish I had spent more time on researching the life long functions of the uterus and ovaries and adverse effects of their removal and not so much time on ovarian cancer.

    It's hard to know whether or not to do these additional tests. Researching their usefulness (which you probably already did) may help you decide. I would think they'd do one blood draw but don't know how long it takes to get all the results. But this mass has to be removed anyway. And the frozen section will tell with a very high degree of certainty whether or not the mass is benign. (My gyn was deceptive about the accuracy of the frozen section plus said I had a cyst on my other ovary. There was no cyst on my other ovary at the time of surgery so I think it was a normal functional cyst.)

    In the 11 years since my surgery, I've learned that most Gynecology surgical consent forms are fairly open ended to allow removal of whatever organs the gynecologist wants to remove. As the patient, it is your right to say what can and cannot be removed and under what circumstances. But you will want that in writing. You can revise the surgical consent form and have the surgeon sign off on the revisions. Make a copy for your records. Doing this the day of surgery is not the best time as you may not even see the surgeon or sedation will have already been started before he/she appears. I never saw my surgeon before surgery... don't even recall seeing him afterwards.

    Can't think of anything else at this point! Will be interested to hear back from you as this plays out. I hope all ends well!!

     
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    hysterectomy, menopause, ovarian cancer, ovarian mass



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