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The Ovarian Cancer Blues

Posted

Specializes in Oncology; medical specialty website.

On Sept. 4th, President Obama signed a proclamation declaring September "Ovarian Cancer Awareness Month." He urged women to get regular check ups to increase the possibility of early detection, and touted the Affordable Care Act as a means to protect women with this disease from being treated unfairly in the workplace and from discrimination by medical insurers. He assured women with ovarian cancer that the Administration was doing all it could to find a cure.

Don't get me wrong: his sentiments are appreciated. I just have to wonder if what he says is really true, or if it was just one of those "feel-good" efforts that a president does, then checks off on his "To Do" lists.

Next month, the White House will be awash in pink for "Pinktober." You won't see the White House turn teal for Ovarian Cancer Awareness Month (or for any color of other cancers, for that matter), even though ovarian cancer is the fifth leading cause of cancer death in women and the most lethal of all gynecologic cancers.

Why is there such a lack of interest in a cancer that affects 22,000 women each year and kills more than half of them? In 2009, the National Cancer Institute's funding for ovarian cancer was $110.1 million dollars, along with $16.2 million dollars allocated for research from the American Recovery and Reinvestment Act. By comparison, the National Institutes of Health spent $800 million dollars on breast cancer research. In that same fiscal year, they spent $147 million dollars on ovarian cancer research. Since 1992, the Department of Defense, which has a breast cancer research program, has added an additional $2.5 billion (yes, billion) dollars in peer-reviewed research. By comparison, they allocated $20 million dollars in ovarian cancer research. It's easy to see why women battling ovarian cancer feel like the proverbial red headed stepchild next to all that money.

Unlike breast cancer, there is no diagnostic test to detect ovarian cancer. Many women believe (wrongly) that if they go to their gynecologist regularly for an annual exam and PAP test, the doctor will be able to tell if they have ovarian cancer. The truth of the matter is that it is very hard to discover growths from ovarian cancer on a bimanual exam, and the PAP test does nothing to diagnose ovarian cancer. Even the trans-vaginal ultrasound is unreliable in finding growths. The sad fact is that most ovarian cancers go undetected until the disease is at an advanced stage, making the likelihood of survival poor.

As nurses, we can improve awareness by taking any and every opportunity to teach our female patients about the signs and symptoms of ovarian cancer:

ovarian-cancer-facts.jpg

This month, take a moment to educate someone you love about ovarian cancer. Teach your patients, your co-workers. If you have symptoms like the ones noted in the picture, see your doctor. Wear something teal to show your support for women who have been affected by this cancer. Write to your Congressional representatives and ask for more research dollars for ovarian cancer. Write letters to the editor. Speak up at every opportunity. As nurses, we are well positioned to make our voices heard when it comes to advocating for the health of our fellow citizens. Working together, we can help give women a fighting chance against ovarian cancer.

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Edited by Joe V

Esme12, ASN, BSN, RN

Specializes in Critical Care, ED, Cath lab, CTPAC,Trauma. Has 40 years experience.

Amen! Great information!

duskyjewel

Specializes in hospice.

My grandma died of ovarian cancer at 54. Scares the bejeezus out of me.

LadyFree28, BSN, RN

Specializes in Pediatrics, Rehab, Trauma. Has 10 years experience.

My paternal aunt died of ovarian cancer in her 30s. :down:

I think that ovarian cancer doesn't get the research that is needed and more aggressive ways to help detect it because it's "chick cancer"; even men get Breast CA, and I'm suspicious that was a main reason (along with aggressive campaigning after decades) that it get's the attention that it does.

In my mind all cancers need to have the same funding to help detect it and ensure early treatment.

You have my support. :up:

Jolie, BSN

Specializes in Maternal - Child Health. Has 34 years experience.

My post will probably offend some. That's not my intention, I just wish to put my observations and perceptions out there for consideration. Here goes:

I find it disconcerting that political and media savvy have become so influential in determining funding for research and treatment of disease. Breast cancer is a devastating illness that has been thrust into the forefront of American awareness (I believe at the expense of other equally devastating conditions) that have not benefitted from a media savvy organization like the Susan G. Komen Foundation.

Everyone knows and loves a woman who has had breast cancer. This makes for a very sympathetic cause, and it is natural to want to support a sympathetic cause. But those qualities may have persuaded some donors to divert their dollars away from other medical research for less "picture perfect" causes, including testicular cancer, which researchers indicate now lags behind progress in breast cancer, due largely to disparities in funding, even though at one time, both received approximately the same amount.

I also wonder if the American public would tolerate the same innuendo or even blatant in-your-face promotion of a disease affecting male genitalia that is seen with t- shirts and slogans bearing images of breasts and slogans like "Save the Ta Tas."

Would female athletes be encouraged to wear blue uniforms in support of men facing surgery to remove their testicles, facing lifelong infertility, or possible sexual complications following radical surgery to save their lives? Or are these conversations considered too graphic? Why has no women's organization yet taken up this cause the way the NFL has taken up Pink October?

With all the recent hoopla surrounding the ALS ice bucket challenge, did anyone consider how unfortunate it is that sufferers of one of the most cruel diseases known to man depend on social media trends to receive funding for basic research?

ALS just doesn't have the sex appeal of Ta Tas. Nor the funding.

OCNRN63, RN

Specializes in Oncology; medical specialty website.

My paternal aunt died of ovarian cancer in her 30s. :down:

I think that ovarian cancer doesn't get the research that is needed and more aggressive ways to help detect it because it's "chick cancer"; even men get Breast CA, and I'm suspicious that was a main reason (along with aggressive campaigning after decades) that it get's the attention that it does.

In my mind all cancers need to have the same funding to help detect it and ensure early treatment.

You have my support. :up:

I agree, to a certain extent. Breast cancer is still considered a women's cancer, however, the Komen Foundation helped to turn it into a marketing juggernaut. Pretty soon, corporate America learned that "if it's pink, it sells."

I agree that there needs to be parity with research funding and support. Unfortunately, it's almost impossible for other voices to be heard against the roar of breast cancer activists. Really, who pays attention to pancreatic cancer patients? How about gall bladder patients? A while ago I took care of a patient with CA of the appendix. I don't think we're going to see any "Race for the Cure" for those cancers.

I'm glad patients with breast CA have so much support out there, but now we need to start caring for other cancer patients.

Edited by OCNRN63

TELL YOUR SISTERS...

When educating women about Ovarian Cancer, it is important that those with a strong family history of Breast Cancer consider speaking with the Genetic Counselor, and before age 40 whenever possible.

BRCA1 and BRCA2 gene mutations are hereditary, and associated with an extremely high risk of breast cancer (as high as 87%). Most women who have heard about the BRCA gene mutations believe this is a 'breast cancer' gene, but that is only part of it.

A mutation of BRCA1 and BRCA2 carry a horrifyingly high risk of Ovarian Cancer. And for the reasons the OP stated, ovarian cancer is generally detected in late stage, and there is no cure.

With genetic testing to identify deleterious markers in women who have a strong familial background of breast and ovarian cancer, women can be better informed of their own risk and make pro-active choices.

I am BRCA1, and my genetic marker (del 1290) carried up to a 42% lifetime risk for ovarian cancer. My BC risk was up to 87%.

I chose to be tested because three consecutive maternal generations had BC and OC. When my tests came back with deleterious markers, I made choices.

I planned my elective double mastectomy and reconstruction, and planned the oophorectomy for six months later. I did not know, at that time, that I already had breast cancer. My surgeon discovered it while I was on the operating table. So much for dodging the breast cancer bullet.

After six months of chemo, and six months of recovery, I finally scheduled my oophorectomy. This time, when I woke from surgery, I had GREAT news: no signs of cancer whatsoever in my ovaries or peritoneal cavity.

For those you love, and for your patients, please share that there are very serious genetic risks that significantly increase the likelihood of ovarian cancer. And a HUGE indicator is a strong family history of breast cancer, or a blood relative with ovarian.

Being armed with information, and choices, can save a life. It saved mine.

Love to all my sisters.

Edited by monkeyhq
spelling

duskyjewel

Specializes in hospice.

I talked to my doctor at my last annual visit, and she asked if I had considered just having them taken out. I'm only 39, and even though I'm done having kids, I still consider myself to be "using" my ovaries because, frankly, I have a great sex life and I know the hormonal activity of my ovaries contributes to that. I'm not ready to give that up. When I'm in the week right before my period, I have almost no desire for sex. I could be a nun and be totally fine with it. If I get my ovaries removed and feel that way all the time, I'm afraid of how that will affect my marriage. I don't want to be stupid, but these choices are hard. I have not had any genetic testing.

Do NOT respond with any form of comment about how my husband must be a selfish d'bag or I wouldn't have to worry about this. If you've been married any length of time, you know how complicated it is. My husband is amazing and has proven over and over his willingness to sacrifice for his family.

VivaLasViejas, ASN, RN

Specializes in LTC, assisted living, med-surg, psych. Has 20 years experience.

I don't think anyone would say that about your husband. Sex is a very important part of marriage, although certainly not the only part, and yes, marriage is complicated. No need to be defensive about your decision to keep your ovaries, it's an individual decision that only the woman involved gets to make.

Aurora77

Specializes in Med Surg. Has 4 years experience.

As an ovarian cancer survivor, I have felt some resentment towards the focus on breast cancer. My cynical thought is that breasts are sexy, internal organs are not.

Any type of awareness and research is great. Thanks for a good article.

Great thread!

Jolie - I appreciate your candor and agree with you.

Honestly, I think breasts get the attention because . .well, breasts get attention. :wideyed:

The pancreas or gallbladder or prostate or lung or brain or ovaries . . . not so glamorous. ;)

I truly doubt that the fact that men sometimes get breast cancer has anything to do with the publicity breast cancer gets . . . . That information was kind of late to the game as a matter of fact.

As an ovarian cancer survivor, I have felt some resentment towards the focus on breast cancer. My cynical thought is that breasts are sexy, internal organs are not.

Any type of awareness and research is great. Thanks for a good article.

Great minds think alike . . . . "glamorous" and "sexy" :yes:

I have not had any genetic testing.

Do NOT respond with any form of comment about how my husband must be a selfish d'bag or I wouldn't have to worry about this. If you've been married any length of time, you know how complicated it is. My husband is amazing and has proven over and over his willingness to sacrifice for his family.

Genetic testing is for those with a strong family history for BC and/or OC, and only after meeting with a genetic counselor. The counselor reviews the history, and presents the option for testing. For a test where a genetic risk is identified, the counselor provides information about risk, best practices, surgical options, and monitoring options, so the patient can make informed decisions.

It is up to each individual to decide if they want to know their genetic status, and to make choices they believe are right for self and family. Every person has numerous things to consider: values in their marriage, religious beliefs, cultural beliefs, family, insurance options, and the psychological weight of knowing (or not knowing) for self and family. It is a very personal decision, and no one has the right to judge another for their choices.

The purpose in my post is to spread awareness that there is often a link between BC and OC, and in the spirit of the article, informing others about the genetic links so that they can make choices in their own interest.

Many women have heard of the BRCA gene mutations and the extraordinary risk for breast cancer, but they almost never associate this with ovarian cancers (which has a much higher mortality rate). That needs to change. If we can better inform the public about this association--as healthcare professionals, patients, and as sisters--we give our sisters the tools to make early decisions, and that will save lives.

VivaLasViejas, ASN, RN

Specializes in LTC, assisted living, med-surg, psych. Has 20 years experience.

As an ovarian cancer survivor, I have felt some resentment towards the focus on breast cancer. My cynical thought is that breasts are sexy, internal organs are not.

My husband has pancreatic CA and I have yet to see people wearing purple ribbons and running races for him and his fellow sufferers. Not to take away anything from breast cancer survivors, but I think the elephant in the room here is the fact that female breasts are objectified in this culture, hence the interest from male-dominated organizations like the NFL. Like you said, breasts are sexy while internal organs aren't. I think it's time for parity in the way research and patient care for other types of cancer are funded.

My husband has pancreatic CA and I have yet to see people wearing purple ribbons and running races for him and his fellow sufferers. Not to take away anything from breast cancer survivors, but I think the elephant in the room here is the fact that female breasts are objectified in this culture, hence the interest from male-dominated organizations like the NFL. Like you said, breasts are sexy while internal organs aren't. I think it's time for parity in the way research and patient care for other types of cancer are funded.

First, I am so sorry to hear of your husband's condition. Please know you both are in my best thoughts. ((hugs))

There is no doubt there are differences in funding across the various organ systems affected by cancers. Deeper still, there are significant disparities within the distribution of funding in even well-funded cancer campaigns, especially breast cancer. For example:

Most donors do not know that there are numerous 'types' of breast cancer. Almost all of that enormous amount of funding goes to research one type and one hormone profile: ductal carcinomas with ER+/PR+/HR2- hormone receptors. Coincidentally, this 'type' is the most common, and is highly curable (pre-mets).

The two deadliest, fast migrating/growing types--inflammatory breast cancer, and 'triple negative' ER-/PR-/HR2- basal type breast cancer (which is what I had)--receive almost nothing out of that huge pile of funding. Roughly 15-23% of BC patients are diagnosed with these two types, the women affected are usually quite young, have a BRCA1 mutation, and are disproportionately African American. Why isn't more of that substantial 'general' funding for BC going to these highly fatal types of BC?

There should be less disparity in funding for all types of cancers, and the organ systems affected. Simply funding cancer research for an organ system doesn't guarantee research in the various types that affect that organ system. That needs to change.

Edited by monkeyhq
punctuation matters

LadyFree28, BSN, RN

Specializes in Pediatrics, Rehab, Trauma. Has 10 years experience.

First, I am so sorry to hear of your husband's condition. Please know you both are in my best thoughts. ((hugs))

There is no doubt there are differences in funding across the various organ systems affected by cancers. Deeper still, there are significant disparities within the distribution of funding in even well-funded cancer campaigns, especially breast cancer. For example:

Most donors do not know that there are numerous 'types' of breast cancer. Almost all of that enormous amount of funding goes to research one type and one hormone profile: ductal carcinomas with ER+/PR+/HR2- hormone receptors. Coincidentally, this 'type' is the most common, and is highly curable (pre-mets).

The two deadliest, fast migrating/growing types--inflammatory breast cancer, and 'triple negative' ER-/PR-/HR2- basal type breast cancer (which is what I had)--receive almost nothing out of that huge pile of funding. Roughly 15-23% of BC patients are diagnosed with these two types, the women affected are usually quite young, have a BRCA1 mutation, and are disproportionately African American. Why isn't more of that substantial 'general' funding for BC going to these highly fatal types of BC?

My nieces are actually undergoing research for these type of Breast CAs; they have a 1-2 month check up where they are testing blood as a means to understand the reasoning behind the developments of cancers in African American women.

Since I have no children, I have yet to be invited to the study; however, I will be asking my GYN information about being tested; so I can have some definitive information about both breast and ovarian cancer and have a clear picture about my genetic disposition.

OCNRN63, RN

Specializes in Oncology; medical specialty website.

TELL YOUR SISTERS...

When educating women about Ovarian Cancer, it is important that those with a strong family history of Breast Cancer consider speaking with the Genetic Counselor, and before age 40 whenever possible.

BRCA1 and BRCA2 gene mutations are hereditary, and associated with an extremely high risk of breast cancer (as high as 87%). Most women who have heard about the BRCA gene mutations believe this is a 'breast cancer' gene, but that is only part of it.

A mutation of BRCA1 and BRCA2 carry a horrifyingly high risk of Ovarian Cancer. And for the reasons the OP stated, ovarian cancer is generally detected in late stage, and there is no cure.

With genetic testing to identify deleterious markers in women who have a strong familial background of breast and ovarian cancer, women can be better informed of their own risk and make pro-active choices.

I am BRCA1, and my genetic marker (del 1290) carried up to a 42% lifetime risk for ovarian cancer. My BC risk was up to 87%.

I chose to be tested because three consecutive maternal generations had BC and OC. When my tests came back with deleterious markers, I made choices.

I planned my elective double mastectomy and reconstruction, and planned the oophorectomy for six months later. I did not know, at that time, that I already had breast cancer. My surgeon discovered it while I was on the operating table. So much for dodging the breast cancer bullet.

After six months of chemo, and six months of recovery, I finally scheduled my oophorectomy. This time, when I woke from surgery, I had GREAT news: no signs of cancer whatsoever in my ovaries or peritoneal cavity.

For those you love, and for your patients, please share that there are very serious genetic risks that significantly increase the likelihood of ovarian cancer. And a HUGE indicator is a strong family history of breast cancer, or a blood relative with ovarian.

Being armed with information, and choices, can save a life. It saved mine.

Love to all my sisters.

My maternal family history included an aunt who had breast CA, then died from ovarian cancer. Another aunt died from lymphoma. My gyn didn't consider this a strong risk for ovarian cancer, yet I wound up being dx. in my late 40s, and am BRCA2 positive. My mother was tested and she, too, is BRCA2 positive. Fortunately for her, she had a TAHBSO several years ago, but the BRCA2 mutation still puts her at risks for other cancers too, so she sees the same gyn/onc. I see.

OCNRN63, RN

Specializes in Oncology; medical specialty website.

My husband has pancreatic CA and I have yet to see people wearing purple ribbons and running races for him and his fellow sufferers. Not to take away anything from breast cancer survivors, but I think the elephant in the room here is the fact that female breasts are objectified in this culture, hence the interest from male-dominated organizations like the NFL. Like you said, breasts are sexy while internal organs aren't. I think it's time for parity in the way research and patient care for other types of cancer are funded.

Breast cancer has become a survivable disease; with enhanced testing and targeted therapies, it's no longer the death sentence it was years ago. Cancers like your husband's are far more difficult to detect and treat. These cancers need more funds for research and support, but rallying the troops is a tough sell.

It's funny, as I was venting my spleen writing this, there was a spot on the local news about a three day walk for Susan Koman's breast cancer foundation. I yelled at the TV and said, "It's not October, yet!"