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Even a Hysterectomy May Not Protect Against Ovarian Cancer

By Marcia Mangum Cronin

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Did you know it's possible to get ovarian cancer even after you've had a hysterectomy? I learned the hard way. My sister, who had a hysterectomy about 10 years ago, just received a diagnosis for a type of ovarian cancer.

If you have a partial hysterectomy, which removes your uterus, or a total hysterectomy, which removes your uterus and cervix, your ovaries remain intact and you can still develop ovarian cancer, according to the Mayo Clinic.

If, like my sister, you have a total hysterectomy with salpingo-oophorectomy, in which your cervix, uterus and both ovaries and fallopian tubes are removed, ovarian cancer is less likely but still can occur.

The details are confusing—surgeons talk fast and don't like to slow down for patient explanations—but my sister's surgeon says she has primary serous carcinoma, which looks and acts much like ovarian cancer and likely originated from ovarian cells.

As he explained it, when a woman undergoes a hysterectomy and has her ovaries removed, some ovarian tissue may be left behind. Ovaries are not well-formed organs like our liver or kidneys. They are soft tissues that can (and do) come apart when you try to remove them. When pieces are left behind, some cancerous or precancerous cells may grow from that tissue. In some women, the ovarian cells migrated to the peritoneal area during menstrual cycles before the ovaries were removed and became cancerous later on. It's also difficult to tell whether the cancer is coming from ovarian or peritoneum cells—and it doesn't much matter. It is treated the same.

My sister's cancer appeared suddenly, without warning. Two weeks ago, she started having severe abdominal pains. At first she thought it was a stomach virus or food poisoning. But, after two days of worsening symptoms, her internist sent her to the emergency room. The ER doctor wanted to send her home with a stool softener, but my sister, being the strong-willed woman that she is, refused to leave.

When a doctor examined her the next morning, he found a mass on her colon and decided to do an emergency colonoscopy. But, the mass was pressing down so hard on her colon that he couldn't do a colonoscopy. The procedure suddenly became emergency removal of her entire colon because the mass had pinched off the tissue and killed it.

Once the surgeon got inside her abdominal cavity, he discovered cancer cells throughout her abdomen. As he described them, they were sticky blobs of cells that were gluing her organs together. He removed what he could in what was becoming a lengthy and complex emergency surgery.

He was not sure she'd pull through the surgery, but, thankfully, she did. We're still getting answers and are a long way from winning the battle against cancer. But we're extremely glad that she's lived to fight it.

I've learned a lot about ovarian cancer in the past week, and the most important thing I've learned is that it's very important to get an early diagnosis—but there's no screening test for women at average risk for ovarian cancer.

There are risk factors that would encourage your health care provider (HCP) to be more vigilant in looking for ovarian cancer, so know your risk factors—and let your HCP know if you have any.

These are risk factors for ovarian cancer:

  • A "first-degree" relative (mother, sister or daughter) who has or had ovarian, breast or gastrointestinal/colon cancer
  • Age; most cases occur in women 60 and older
  • Eastern European Jewish ethnicity (Ashkenazi)
  • Mutation in the BRCA1 or BRCA2 gene
  • Personal history of breast, endometrial/uterine or colorectal (colon) cancer
  • Have never been pregnant or had trouble giving birth
  • A high-fat diet
  • Obesity
  • Endometriosis
  • Early start for your periods (before age 12) or later-than-average menopause (after age 50)

Of all risk factors, the most significant is a family history of breast and/or ovarian cancer. However, it's important to keep risk factors in perspective. Most women with risk factors for ovarian cancer will never get ovarian cancer. And most women with ovarian cancer do not have any strong risk factors for the disease.

The symptoms of ovarian cancer (particularly in its early stage) are often not obvious or intense, but if you have known risk factors, you should definitely talk to your HCP if you notice any symptoms. Symptoms of ovarian cancer include:

  • Pelvic or abdominal pain, pressure or discomfort
  • Vague but persistent gastrointestinal upsets such as gas, nausea and indigestion
  • Frequency and/or urgency of urination in absence of an infection
  • Changes in bowel habits
  • Weight gain or loss; particularly weight gain in the abdominal area
  • Pelvic or abdominal swelling, bloating or a feeling of fullness
  • Back or leg pain
  • Pain during intercourse
  • Vaginal bleeding or abnormal vaginal discharge
  • Ongoing fatigue

If you or your HCP suspects you may have ovarian cancer, or you have a very high risk of developing it, you may undergo certain diagnostic tests, including imaging tests, biopsy and blood tests.

Your HCP may order a blood test that checks for CA-125, a protein found in the blood of many women with ovarian cancer. However, other conditions, including normal ovulation, endometriosis and pelvic inflammatory disease can also raise CA-125 levels. And some women with ovarian cancer may have normal levels of CA-125. Because of these problems, the CA-125 test is not recommended for women at average risk of ovarian cancer.

Because my mother died of breast cancer and my sister now has ovarian cancer, I know that I have significant risk factors. I will talk to my doctor about what testing is right for me. As with most cancers, early diagnosis is the key to survival.

Comments

I'm pulling for your sister...she's already been through so much, but sounds like she's a fighter. And lucky to have you. Thanks for putting out this important information, Marcia.

I just read your post and am praying for your sister. I was trying to find something about ovarian cancer in women who have had a total hysterectomy when I found this post. I too had a total hysterectomy in 1985, mine due to severe endometriosis. I have had bladder issues for years. I would have pain and blood in my urine but there usually would not be an infection. Finally in mid-March I had a bad bout and they found an infection which seemed to go away after antibiotics, however the blood and pain remain. I had blood tests and a CT scan this past Friday and will see my doctor this week for results. I'm a bit worried as two of my Daddy's sisters died from ovarian cancer although they both had undergone hysterectomies several years before. I seem to have all the other symptoms and hope and pray they didn't wait too long to take me seriously. I will watch for posts and updates on your sister. God bless her and all of you. Barb

Just wanted to know if you had gotten your results. I am too in the same boat. I had a total hysterectomy in 92 and these past 2 years I have been experiencing blood in my urine with and without infection. I lately have been feeling bloated after I eat. I have also been having pain in my pelvic area so my dr referred me to see a urologist. Sorry to hear women can still get ovarian cancer even though you have had a complete hysterectomy.

I had my left ovary removed in 2008 due to ovarian tumor. The doctor is suggesting that I remove the right ovary as well to avoid the tumor, which was borderline to cancer, from coming back. I'm in my mid 30's and was advised that removing my right ovary will lead to early menopause.

Looking for advise on if that is the right move for me. I have been doing my annual cancer test and its been negative since 2008.

Thank you.

Tee, My apologies for not responding sooner. I am not a medical expert and cannot give you medical advice, but I would suggest that if you're having doubts about your doctor's advice that you seek a second opinion as soon as possible. Removing both ovaries will lead to early menopause, but it may be necessary if your doctor's concerns about ovarian tumors are well-founded. I hope you will explore this carefully with your medical professionals. Early diagnosis is so important with cancer, and there is no reliable screening test for ovarian cancer, so you have to follow the diagnostic and treatment steps that the professionals give you. I hope all goes well for you and your health!

My sis also has stage 2 clear cell OVarian cancer. My question is, did you get a hyst, my dr is really pushing me to do so.

The risk factors for Ovarian Cancer are a joke. According to the risk factors, my mother should have never had Ovarian Cancer. If anything, her risk should have been reduced. Ovarian cancer killed her, but she should have never had the cancer and she should have been alive. So there is no way to screen for this in blood or risk factors period. We females are just up the creek without a paddle.

I have NEVER had Cancer (knock on my wooden head)! But, my doctor is a gene specialist with Cancer and so 5 years ago I got ovaries and all out but cervix. I got double mastectomy FULL. This was ALL for preventative measures, so far no Cancer! But, I read folks like me can still get Ovarian Cancer even if we take all that out including ovaries, is this true? Why bother if I'll get it between my vagina and my anus? What a waste in a way. Well, whatever.

Have there been cases of these women having either vaginal mesh or hernia mesh developed cancer?? It is being discussed now that mesh is coming out of the shadow it has been in since 2002.
This one thing women don't question and docs don't want want to discuss either.

Just want to know if vaginal mesh or hernia mesh from bladder sling or hernia repair is/was part of the cause?? OR HAS NO ONE MADE THE CONNECTION??
Dottie

I was just diagnosed with Ovarian Cancer.Had hysterectomy 28 yrs. ago.Wow never thought this was possible.How is your sister now?Prayers

Just searching the internet for information, I'm so sorry to hear about your sister.....3 years ago I had a total hysterectomy for a large fibroid and they discovered I had a very nasty case of endometriosis and had to have my left ovary removed. I still have my right ovary, All of sudden out of the blue last Wednesday night sitting at my laptop I had severe stabblng pains in my right lower abdomen enough to double me over, and then it subsided. Next day at work after eating a light lunch had more subtle pain in same area, and it went then has been coming back a few times not as severe, however right now while I've been typing this I've just experienced more stabbing pains same area.....did not know this information, will be visiting my Doctor on Monday for a check........thankyou for making me aware this can occur, never knew......

Hello my name is crystal.. I had my uterus removed in oct 2016 and in the last two months i jave had nothing but pain in my ovaries and in my vagina sharp pain is that common ?

Just recently I had kidney stones removed, but the doctor said my bladder looked very gross I side, I have no pain urinating or bleeding bUT in the past I have had a hysterectomy everything removed except for one ovary th as that was so little they didn't remove it, my symptoms include : severe pain in my abdomem, bloating, back pain,kidney stones alot of them and I had endometriosis cut off 7 organs at least 2 times,nausea and very tired lately.

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