Options for 3 suspect cysts

edw7298
edw7298 Member Posts: 2
edited July 2018 in Ovarian Cancer #1

Hello, first post here.

I (40 year old, married, no children) have been seeing a gynecologic oncologist for the past month after several suspect cysts were noted on CT and then U/S when I went to the ER with abdominal pain and some pelvic pain.

The first U/S in the ER showed 2 cysts - a complex multi-septated cyst 2.5 x 4 x 2.5 cm (possible hemmorrhagic cyst) and a complex cyst 3 x 5.5 x 3 cm (possible endometrioma).  A week after, my first CA125 (Roche) was 330.

A month later, at a different hospital where the oncologists is, the second U/S showed 3 cysts - a complex cyst 1.1 x 1.1 x 1.0 cm (supposed reduction of prior hemmorrhagic cyst), a complex cyst 3.8 x 3.1 x 3.7 cm (unchanged prior endometrioma), and a complex cyst 1.1 x 1.7 x 1.2 cm (endometrioma in the prior U/S images that was not reported).  A second CA125 (MSA Siemens Centaur) was 83.  The oncologist said that the cysts were likely benign and that we had 2 options:  (1) remove via laparoscopy and biopsy to be 100% sure, or (2) perform another U/S 3 months later and re-assess.  She did not seem so concerned about the cysts (e.g., she said that if they were an issue, she would remove them right away).  Not sure how to read that, especially given the CA125 results.

She said that having the surgery would be better for having a healthy ovary for possibly having kids.  But surgery, if it involves the ovary (which they won't know until they go in), could reduce that chance as well.

I would rather not have surgery unless necessary.  But I'm not sure what to do given the unknowns (e.g., cancer, which cannot be ruled out without biopsy) and the risks (having children).

Your thoughts and opinions are most appreciated.

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #2
    Surgery or not

    Hi edw7298

    Hope you are feeling well.  It certainly is possible your CA-125 is and was elevated for reasons other than ovarian cancer, but I understand your concern.  I'm afraid I can't give you advice, but can only share my own personal experience, which seems applicable to your situation.  

    I had a 9 cm cyst removed when I was 39, which turned out to be endometriosis.  I never had any symptoms before this, which surprised my gynecologist, as he said it is more commonly diagnosed in your 20s.  I had not choice because it was so large, I had to have it removed, along with the ovary it was attached to.  After that, I frequently visisted my doctor and various cysts popped up.  Some went away on their own.  Others we addressed with birth control pills or a drug called Depoprovera, which stopped my menstral cycles temporarily.  Hormones feed these cysts.  If I knew then what I know now, I would have consulted with a naturopath because they can manage hormone imbalances at the root cause, instead of throwing things at it that don't resolve the condition. 

    Prior to my diagnosis of ovarian cancer, again I had a cyst on my ovary, but it shrunk after a D&C.  I still expereinced pains, however, and 7 weeks later, I had another followup ultrasound and a CT scan, and I had tumors throughout my abdomen.  The cancer was very aggressive.  

    So, I know I probably didn't answer your concerns.  It's hard to know whether what you are dealing with is just due to sometihng like a hormone imbalance or something more serious.  Since the cysts are smaller, however, and you would like to have children, I suggest you ask to have a follow up sooner than three months.  Maybe a month or 6 weeks from now.  Then you can monitor this more closely.  

    Good luck.

  • edw7298
    edw7298 Member Posts: 2
    edited July 2018 #3
    Thanks for your response, and

    Thanks for your response, and I hope you are feeling better as well.  It helps knowing that we are not alone in this.

    I will look into naturopath/alternative medicine as another option.  I agree, even if the oncologist removes the cysts, the cysts may come back as my oncologist also indicated.  So it does look like addressing the hormonal issues is needed to try to address the current cysts and to prevent new ones.  It also looks like many of the hormones/etc. that can help control cysts are the same to increase fertility - is that true?

    The other concern I have about what to do is that, while individually, my complex cysts are not that large, in the aggregate, they take up a large volume - almost like one large 6-7 cm complex cyst.  Viewed in this way, it seems there is more of a likelihood that, because of the 3 cysts, my ovary would be involved and would need to be removed as well (although the oncologists believes she can save it).  Not sure if I shouuld view the cysts in this way.

    The U/S in the ER was done in the middle of June, while the U/S with the oncologists was done in early July.  I think your recommendatoin for another U/S sooner than later to see if there is any growth in the cysts is a good one.  Will follow up soon.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #4
    Hormones

    Hi again,

    I'm afraid I have no experience with fertility and hormones.  But getting them in balance should improve your ability to become pregnant.   I know an accupuncturist in my naturopath's office, whose treatments help women become pregnant.  It's all pretty amazing stuff.  If you had to have the cysts and ovary removed, however, you would still have one ovary and should still be able to become pregnant.  Either way, getting your body as healthy as possible can only benefit you and your baby. 

    Good luck. 

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