The Ovarian Cancer Blues

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monkeyhq

242 Posts

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.

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VivaLasViejas, ASN, RN

22 Articles; 9,987 Posts

Specializes in LTC, assisted living, med-surg, psych.
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.

monkeyhq

242 Posts

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.

Specializes in Pediatrics, Emergency, Trauma.
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

5,978 Posts

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

5,978 Posts

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!"

dudette10, MSN, RN

3,530 Posts

Specializes in Med/Surg, Academics.

Part of the reason breast cancer has become a survivable disease is BECAUSE of the exact "marketing" that many of us are now sick of. That's part of the reason that I am of two minds when it comes to people lamenting breast cancer funding vs funding for other types of cancers. One also has to remember that women were pretty much surgically maimed to "treat" breast cancer, and new surgical techniques have given a woman her body back after surgery these days. Although mortality has been drastically reduced, we can't forget that women still die of breast cancer.

Thank you monkeyhq for pointing out the connection between breast ca and ovarian ca. I would like to caution women on deciding to prophylactically removing their ovaries, though. It's not as systemically benign as prophylactic mastectomy. There are very real changes to libido, mood, metabolism, and abdominal structures with BSOs. Every woman needs to make the decision for herself, but a lot of thought and conversations with doctors who are HONEST about the changes your body goes through need to occur.

allnurses Guide

Spidey's mom, ADN, BSN, RN

11,304 Posts

Thank you monkeyhq for pointing out the connection between breast ca and ovarian ca. I would like to caution women on deciding to prophylactically removing their ovaries, though. It's not as systemically benign as prophylactic mastectomy. There are very real changes to libido, mood, metabolism, and abdominal structures with BSOs. Every woman needs to make the decision for herself, but a lot of thought and conversations with doctors who are HONEST about the changes your body goes through need to occur.

To be honest, I have no libido. ;) And my ovaries are still intact.

I've always thought that I would have double mastectomies and no reconstruction if I were diagnosed with breast cancer. Of course, thinking about what you would do when you don't have cancer . . yet . . . is not realistic. I acknowledge that.

I'm enjoying this thread. Lots of good information and conversation.

monkeyhq

242 Posts

Part of the reason breast cancer has become a survivable disease is BECAUSE of the exact "marketing" that many of us are now sick of. That's part of the reason that I am of two minds when it comes to people lamenting breast cancer funding vs funding for other types of cancers. One also has to remember that women were pretty much surgically maimed to "treat" breast cancer, and new surgical techniques have given a woman her body back after surgery these days. Although mortality has been drastically reduced, we can't forget that women still die of breast cancer.

Mortality has been drastically reduced for the most common sub-type of BC, and this sub-type gets the lion's share of all BC funding. NONE of the new treatments that have been developed with that funding have any effect on TNBC and IBC (around 24% of BC's fall into this sub-group). So it is somewhat of a misnomer to say that breast cancer is a survivable disease. It would be better to say that many breast cancers are highly survivable.

Women with TNBC and IBC still die at much higher rates, and the disease progression is far more rapid. The prognostic effect of TNBC is independent of poor grade, node status, tumor size, and treatment. Not only are death rates much higher, they are more frequent. Therefore, the annual number of deaths due to breast cancer disproportionately fall into this sub-group. Women with TNBC are EIGHT TIMES more likely to die within two years than women with the most common type of BC.

Up to 24% of BC cases belong to this most lethal subgroup. Shockingly, this sub-group doesn't get 24% of the funding allocated to breast cancer research.

Like other deadly cancers--ovarian, pancreatic, etc--TNBC and IBC need much greater funding (and research interest) if we are to ever expect improved outcomes.

Thank you monkeyhq for pointing out the connection between breast ca and ovarian ca. I would like to caution women on deciding to prophylactically removing their ovaries, though. It's not as systemically benign as prophylactic mastectomy. There are very real changes to libido, mood, metabolism, and abdominal structures with BSOs. Every woman needs to make the decision for herself, but a lot of thought and conversations with doctors who are HONEST about the changes your body goes through need to occur.

Agree 100%. Each patient should have all information so they can make decisions that are right for them.

I had a tremendous support system, and exceptional communication and information with my physicians. The ancillary conditions resulting from BSO carried little weight when compared to my significant risk of death from OC, so it was an easy decision for me.

OCNRN63, RN

5,978 Posts

Specializes in Oncology; medical specialty website.

I wouldn't be surprised if we see increased funding since the Komen Foundation has teamed up with the Triple Negative Breast Cancer Foundation.

http://www.tnbcfoundation.org/promisegrant.htm

I watched an interesting documentary a while ago called "Pink Ribbons, Inc." which went into great detail about many of the aspects surrounding the marketing behind organizations like Komen. What started out in the 80s as social activism demanding increased research for breast cancer has turned into something entirely different years later.

Women are still far less likely to survive ovarian cancer than a diagnosis of breast cancer. While there are some promising new treatments on the horizon, ovarian cancer has not seen the breakthroughs in treatment that other cancers have. Let's face it: ovaries, pancreas livers...not sexy.

All that aside, September is the month we focus on ovarian cancer. We still have a little over two weeks to use this month to educate our patients and our loved ones about a disease that kills far too many women every year.

Humbled_Nurse

175 Posts

It just amazes me that despite all that money going towards breast cancer there is still no cure. Yes, survival for some types of breast cancer has increased a lot and that is GREAT, but I think the focus needs to shift to "race for a cause" instead of "race for a cure." Let's face it cancer treatments are rough and without significant risks. I think breast cancer has received all the attention due to creative, persistent, and aggressive marketing. I do wish all cancers got all the same funding because they are all devastating.

As I get older cancer is a very real fear for me. I just want to know what the heck is causing all this cancer. It's just scary! It's a shame that we have hospitals just for cancer. Something is very wrong!

monkeyhq

242 Posts

I wouldn't be surprised if we see increased funding since the Komen Foundation has teamed up with the Triple Negative Breast Cancer Foundation.

Triple Negative Breast Cancer Foundation®

Wonderful news!

All that aside, September is the month we focus on ovarian cancer. We still have a little over two weeks to use this month to educate our patients and our loved ones about a disease that kills far too many women every year.

YES INDEED! Let's save some lives!

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