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42yr old w 12cm Complex Ovarian Mass
Hi Friends-
I am a (newly) 42 yr old married, 1d&c, no live births with no family history of hormonal cancer, patient who has been reading many of your posts here for the past month since my gyn ordered an ultrasound based on what she thought were large fibroids. Unfortunately the results revealed a large, complex and solid adnexal mass. The details from the report are as follows:
"Bladder is well distended.
Uterus measures 7.3 x 3.7 x 3.9 cm not including the 2.9 x 3.1 x 2.9cm exophytic posterior lower uterine segment fibroid. The endometrial echo measures 4mm in thickness.
There is a 11.7 x 9.5 x 10.9 cm cystic lesion with a 4.3 x 4.0 x 3.9cm solid component which appears to be arising in the left adnexa but extends across the midline and is seen medial to the right ovary. No separate left ovarian tissue is seen. Right ovary measures 1.9 x 1.0 x 1.7cm and there is no free fluid in the pelvis."
I met with the first of two gyn oncologists I am trying to see (Memorial Slone Kettering today, and Weill Cornell on Tuesday, both in NYC) and while he was sympathetic, he was very firm that I should brace myself for a full hysterectomy. We told him we are trying to have a baby, that's why I was at the exam that found the mass, and he suggested it is unlikely my husband and I would be able to have children based on my age. (He also said that no RE would treat me with a mass this size, even for egg retrieval) I understand all of this, and I also take full responsibility for my condition as I had neglected my gyn exams for a few years because of some former trauma that has made this so much worse for me, but I adamantly DO NOT WANT a hysterectomy. I wouldn't care if I was ten years older, but I'm not. I have absolutely no symptoms. No bloating, bladder, bowel, or digestive problems. No bleeding, no pain during sex or exams, regular periods, literally nothing. I have yet to have a CA-125, but all of my other blood work is normal. I have no history of hormonal cancer in my family. My mother currently has chronic leukemia, which she has been living with for eight years with monitoring and no treatment, and my maternal grandmother passed from pancreatic cancer at 72.
I am being told I have to have a laparotomy, be in the hospital for 3-4 days and be out of work for 6-8 weeks, and again, really being set up for a full hysterectomy. I could lose my organs, my shot at ever having my own baby, and possibly, my job. Can anyone offer any advice? I am really distraught right now and my poor husband is doing his best, but this is all really awful.
I am a (newly) 42 yr old married, 1d&c, no live births with no family history of hormonal cancer, patient who has been reading many of your posts here for the past month since my gyn ordered an ultrasound based on what she thought were large fibroids. Unfortunately the results revealed a large, complex and solid adnexal mass. The details from the report are as follows:
"Bladder is well distended.
Uterus measures 7.3 x 3.7 x 3.9 cm not including the 2.9 x 3.1 x 2.9cm exophytic posterior lower uterine segment fibroid. The endometrial echo measures 4mm in thickness.
There is a 11.7 x 9.5 x 10.9 cm cystic lesion with a 4.3 x 4.0 x 3.9cm solid component which appears to be arising in the left adnexa but extends across the midline and is seen medial to the right ovary. No separate left ovarian tissue is seen. Right ovary measures 1.9 x 1.0 x 1.7cm and there is no free fluid in the pelvis."
I met with the first of two gyn oncologists I am trying to see (Memorial Slone Kettering today, and Weill Cornell on Tuesday, both in NYC) and while he was sympathetic, he was very firm that I should brace myself for a full hysterectomy. We told him we are trying to have a baby, that's why I was at the exam that found the mass, and he suggested it is unlikely my husband and I would be able to have children based on my age. (He also said that no RE would treat me with a mass this size, even for egg retrieval) I understand all of this, and I also take full responsibility for my condition as I had neglected my gyn exams for a few years because of some former trauma that has made this so much worse for me, but I adamantly DO NOT WANT a hysterectomy. I wouldn't care if I was ten years older, but I'm not. I have absolutely no symptoms. No bloating, bladder, bowel, or digestive problems. No bleeding, no pain during sex or exams, regular periods, literally nothing. I have yet to have a CA-125, but all of my other blood work is normal. I have no history of hormonal cancer in my family. My mother currently has chronic leukemia, which she has been living with for eight years with monitoring and no treatment, and my maternal grandmother passed from pancreatic cancer at 72.
I am being told I have to have a laparotomy, be in the hospital for 3-4 days and be out of work for 6-8 weeks, and again, really being set up for a full hysterectomy. I could lose my organs, my shot at ever having my own baby, and possibly, my job. Can anyone offer any advice? I am really distraught right now and my poor husband is doing his best, but this is all really awful.
COMMUNITY LEADER
I'm so sorry you are faced with this! I was in a similar situation with a 9.5cm complex cyst. I was also told I needed all my organs removed. I wish I had listened to my intuition and done things very differently. If I had I'd probably still have my uterus and both ovaries or, worst case, lost that one ovary. I'd already had my children so that was not an issue. But the uterus and ovaries have life long functions even though the epidemic of hysterectomies and oophorectomies leads us to believe we don't need them after childbearing and menopause, respectively.
Most complex cysts are benign. But unfortunately they cannot tell for sure until the frozen section biopsy is done while you are in the operating room. And of course at that point you are under anesthesia and have no say in what happens once the frozen section comes back. In my case, my surgeon waited for the results of the frozen section and then proceeded to remove my other ovary, my uterus and tubes even though it came back benign. This is not uncommon. Hysterectomy and oophorectomy (as well as c-section) are the top overused surgeries. Only about 10% of hysterectomies are necessary. Healthy ovaries are removed at the time of hysterectomy in 55 to 73% of women despite a woman's lifetime risk of ovarian cancer being very small (1.3% per U.S. government stats).
It is concerning that both oncologists want to remove your parts without knowing for sure if this cyst is benign or cancerous. I am not sure how you go about finding a "conservative" surgeon, one who will not remove organs for a benign condition. You shouldn't even need to lose the one ovary if you have a surgeon with good cystectomy skills and the cyst is benign. And you surely wouldn't need to lose your uterus in that case!
In addition to finding a "conservative" surgeon, your best protection is to make sure the surgical consent form explicitly states what can and cannot be removed and under what circumstances (e.g., cancer, no cancer as determined by frozen section).
Interestingly, I have heard of other women who were told by their gyns that they were too old to have children, some merely because they were biased against women having children past a certain age.
This site is helpful in understanding ovarian cysts - http://ovaryresearch.com/ovarian_cysts.htm.
Best of luck to you! Please feel free to ask questions. And keep us posted.
Most complex cysts are benign. But unfortunately they cannot tell for sure until the frozen section biopsy is done while you are in the operating room. And of course at that point you are under anesthesia and have no say in what happens once the frozen section comes back. In my case, my surgeon waited for the results of the frozen section and then proceeded to remove my other ovary, my uterus and tubes even though it came back benign. This is not uncommon. Hysterectomy and oophorectomy (as well as c-section) are the top overused surgeries. Only about 10% of hysterectomies are necessary. Healthy ovaries are removed at the time of hysterectomy in 55 to 73% of women despite a woman's lifetime risk of ovarian cancer being very small (1.3% per U.S. government stats).
It is concerning that both oncologists want to remove your parts without knowing for sure if this cyst is benign or cancerous. I am not sure how you go about finding a "conservative" surgeon, one who will not remove organs for a benign condition. You shouldn't even need to lose the one ovary if you have a surgeon with good cystectomy skills and the cyst is benign. And you surely wouldn't need to lose your uterus in that case!
In addition to finding a "conservative" surgeon, your best protection is to make sure the surgical consent form explicitly states what can and cannot be removed and under what circumstances (e.g., cancer, no cancer as determined by frozen section).
Interestingly, I have heard of other women who were told by their gyns that they were too old to have children, some merely because they were biased against women having children past a certain age.
This site is helpful in understanding ovarian cysts - http://ovaryresearch.com/ovarian_cysts.htm.
Best of luck to you! Please feel free to ask questions. And keep us posted.
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