Ovarian Cancer can occur even after ovaries have been removed-Report re 9 additional hereditary gene

LorettaMarshall Member Posts: 662 Member
edited March 2016 in Ovarian Cancer #1

While this letter relates to a letter written by “PPurdin” at link http://csn.cancer.org/node/301247 concerning her diagnosis of Ovarian cancer even though she had already had her ovaries removed, I want to answer in a separate form.  I believe these research articles will benefit anyone who has the diagnosis to better understand why they have been diagnosed with Ovarian Cancer.  So I will address it to Pat, but it is intended for a wider audience as well.  Naturally, we are all devastated when we hear that we have Ovarian Cancer.  Several references are given here that give a better understanding of how this cancer often develops.  Still there is no "early warning system" for us.  We await the day when that becomes a reality.

Friday, March 11, 2016

Dear Pat

I always look at the “about me” page when a person comes on this site.  I see that you have your priorities in the right order.  When asked what has helped you the most, you listed your love for God first.  Obviously you were first diagnosed with Breast Cancer back in 2009.  So cancer is not new to you.  You’re wanting to know if anyone else on this site has had Ovarian cancer after having a hysterectomy.  I don’t know how many answers you will receive, but I started searching the web to see just how this Ovarian cancer remains a possibility when one no longer has their ovaries.  Sad to say, OC is still a possibility for one whose ovaries have been removed.  One of the links below my name explains how that can happen.  That is why these links will be helpful for others on this site.   By chance, has your doctor diagnosed this as a recurrence of your previous Breast cancer?

At age 36, I had a hysterectomy, but my ovaries and fallopian tubes were left intact.  Now clinical trials have shown that OC can actually begin in the fallopian tubes.  So since only Uterus was removed, I readily understand why OC was possible for me.  In November of 2012, I was diagnosed with Peritoneal Carcinomatosis.  A SECOND OPINION at the University of Pittsburgh Medical Center revealed cancer in my ovaries as well.  But I see that even if the ovaries have previously been removed, it is still possible to have the diagnosis of Ovarian Cancer.

The Peritoneal Carcinomatosis is Stage IV in itself, and thus incurable.  So for me, the origin is a moot point now, since I have been diagnosed with PC and OC.  But both cancers are treated similarly.  I won’t go into detail except to say that I have had pre-op chemo and subsequent Cytoreductive Surgery in 2013.  Another 6-session treatment of Carboplatin and Taxol was completed September 25, 2015. 

Life is filled with regular visits to my oncologist, and like you, I do not take life for granted.  Saying “Take life one day at a time” for many is just a cliché.  But it takes on new meaning when you wonder how many days you have left to live.  Suddenly many things that once were a priority are now considered trivial and of little importance.  Psalm 139 is a great comfort to me.

 In that chapter, David the Psalmist, says “Lord, where can I go that YOU are not already there?”  The answer is “nowhere.”  I find the personal relationship with the Lord has sustained me through this tumultuous time.  David goes on to say, “You saw me when I was being knit together in my mother’s womb, and in Your book, all the days of my life were written, when as yet there were none of them.”  And so I find great comfort and consolation in those inspired words.  I will not leave this earth one day earlier than my allotted days.  I don’t question God, nor do I understand all His ways, but I know I can trust HIM to be with me through all the trials in the days that follow.  That gives me great inner peace and the inner strength to persevere, even when physical strength wanes.  So I just wanted you to know that I imagine I am only one of many that has had a hysterectomy early in life, and now have Ovarian Cancer late in life.  This one site below my name explains that even absent the ovaries, one can still have Ovarian Cancer, sorry to say!

So, Pat, keep on loving God.  We love Him because He first loved us.  He will never leave you or forsake you, but on this earth, He never promised us a rose garden.  Though it doesn’t seem like it in this chaotic world, God is still in control.  If He can keep the planets in place He can take care of me here on Planet Earth.  He keeps reminding me of that fact, even with my own Stage IV diagnosis.    And while, “What me worry” is definitely not my theme, keeping my priorities in place gives me inner peace.   Your love for Him and His love for you is an unbeatable combination.   May God guide you to the best doctors as you start a new chapter in your life.  May He give you a double dose of sunshine in your life and peace in your soul today.  Keep on looking up Pat.

Love & prayers,


Peritoneal Carcinomatosis/Stage IV Ovarian Cancer diagnosed in 2012

1.  http://www.healthline.com/health/cancer/ovarian-cancer-hysterectomy#1

“Ovarian Cancer After Hysterectomy: Is It Possible?”

“…If you’ve had or are considering having a hysterectomy, you may assume that you cannot be diagnosed with ovarian cancer. But while having your uterus removed decreases your risk, ovarian cancer is still possible.

Ovarian cancer is cancer that develops from the ovarian cells. The ovaries are where eggs are produced and are the main source of the female hormones estrogen and progesterone. Most ovarian cancers start in the cells that cover the outer surface of the ovary. Cancer can also develop inside the cells that produce eggs or in the hormone-producing cells…

Sometimes, the Fallopian tubes and both ovaries are removed during a hysterectomy. This is called salpingo-oophorectomy. Without ovaries, your risk of developing ovarian cancer is lower. But there’s still some risk. That’s because ovarian cells can migrate to the peritoneal area, which is the area between the vagina and anus.

If this migration happened before your ovaries were removed, those cells remain behind.  They can become cancerous at any time.

Because they’re ovarian cells, the result is ovarian cancer.  Cancer can also develop from cells in the peritoneum, the tissue lining the wall of your abdomen.

What Can I Do to Prevent Having Ovarian Cancer? Some women are genetically predisposed to developing ovarian cancer. In that case, you may consider taking preventive measures. One option is to have your ovaries removed. When this is done preventively, it’s called prophylactic bilateral oophorectomy.  Without ovaries, you can still be diagnosed with ovarian cancer, but your risk is significantly  lower…”.


2.  http://www.mayoclinic.org/diseases-conditions/ovarian-cancer/basics/risk-factors/con-20028096

“…Risk factors By Mayo Clinic Staff

Certain factors may increase your risk of ovarian cancer:

Age. Ovarian cancer can occur at any age but is most common in women ages 50 to 60 years.

  • Inherited gene mutation. A small percentage of ovarian cancers are caused by an inherited gene mutation. The genes known to increase the risk of ovarian cancer are called breast cancer gene 1 (BRCA1) and breast cancer gene 2 (BRCA2). These genes were originally identified in families with multiple cases of breast cancer, which is how they got their names, but women with these mutations also have a significantly increased risk of ovarian cancer.

    The gene mutations that cause Lynch syndrome, which is associated with colon cancer, also increase a woman's risk of ovarian cancer.

  • Estrogen hormone replacement therapy, especially with long-term use and in large doses.

  • Age when menstruation started and ended. If you began menstruating before age 12 or underwent menopause after age 52, or both, your risk of ovarian cancer may be higher.

  • Never being pregnant...Fertility treatment...Smoking..Use of an intrauterine device...Polycystic ovary syndrome.

If you have a genetic predisposition to ovarian cancer, your doctor may recommend regular pelvic imaging and blood tests to screen for the disease.”

 3.  http://www.oncologynurseadvisor.com/ovarian-cancer/ovarian-cancer-encompasses-many-malignancies/article/480930/

March 07, 2016 - “Ovarian Cancer Includes More Than One Kind of Malignancy

(HealthDay News) -- Ovarian cancer isn't a single disease, but rather a number of different malignancies involving the ovaries, an expert U.S. panel says.

Evidence suggests that many ovarian cancers begin in other tissues, such as the fallopian tubes, and eventually spread to the ovaries. In other cases, cancers arise from cells not considered to be part of the ovaries, according to a report from the U.S. National Academies of Sciences, Engineering, and Medicine. The report was mandated by Congress…”


4.   http://www.oncologynurseadvisor.com/ovarian-cancer/nine-inherited-gene-mutations-ovarian-cancer/article/478377/?DCMP=EMC-ONA_ONANEWSLETTER&cpn=&hmSubId=z927W7RfvMw1&hmEmail=YUZU_eq6JZTfNTAZ-i6xZ4bFgIvZ-FiA0&NID=&dl=0&spMailingID=13826462&spUserID=MTg5MzMzNTM2ODQ3S0&spJobID=721888970&spReportId=NzIxODg4OTcwS0

Kathy Boltz, PhD

February 22, 2016 - Nine Additional Inherited Gene Mutations 

Nine Additional Inherited Gene Mutations Are Linked to Ovarian Cancer

Among 1915 patients with ovarian cancer, almost 1 in 5 had inherited mutations in genes associated with risk of ovarian cancer. Furthermore, a total of 11 genes are now suspected of causing hereditary ovarian cancer, according to a report published in JAMA Oncology (doi:10.1001/jamaoncol.2015.5495).1

Although genetic mutations in the BRCA1 and BRCA2 genes are linked to a higher risk for ovarian, fallopian tube, or peritoneal cancer, this study sought to identify other inherited, or germline, mutations that increase the risk of these diseases. The study occurred through the efforts of the Gynecologic Oncology Group (GOG).

"Descriptions of the identity of these genes and their frequency was lacking in the medical literature," explained Paul DiSilvestro, MD, head of research with the Program in Women's Oncology at Women & Infants Hospital and professor of obstetrics and gynecology at The Warren Alpert Medical School of Brown University in Providence, Rhode Island, and coauthor of the study. "The goal of this research was to better define these issues."

The researchers examined germline (inherited) DNA through targeted capture and multiplex sequencing. The sequence data and the mutation frequencies revealed were compared with the National Heart, Lung and Blood Institute GO Exome Sequencing Project and the Exome Aggregation Consortium. Mutation status was compared with clinical characteristics and survival rates.

Approximately 18% of women with ovarian cancer were found to have mutations in genes associated with ovarian cancer risk, including genes beyond the BRCA1 and BRCA2 genes. Now 11 genes are suspected of being associated with ovarian cancer: BRCA1, BRCA2, BRIP1, RAD51C, RAD51D, MSH2, MLH1, PMS2, MSH6, PALB2, and BARD1.

"The results of this trial expanded our knowledge of the genes that we suspect cause hereditary ovarian cancer, bringing the total to 11," DiSilvestro said.

"Genetic testing should now begin screening for these nine additional genetic mutations so women carrying the genes can make educated decisions about their health care future."


1.     Norquist BM, Harrell MI, Brady MF, et al. Inherited mutations in women with ovarian carcinoma [published online ahead of print December 30, 2015]. JAMA Oncol. doi:10.1001/jamaoncol.2015.5495.”






  • ppurdin
    ppurdin Member Posts: 1,181

    Thank you so much.What a wonderful outlook on life you have.You have helped me so much.I was setting here not wanting to even get dressed today.But reading your comment .I will make the best of every day God gives me.I will be getting dressed and out of the house today.Thank you so very much.God bless you.