Lost mom to stage 4 ovarian cancer...now to find out my risks

Dear Heather,

Oh my dear Heather.  As I read your first words I identified with you and your mom instantly.  Your heart is broken.  But thank God, as a nurse, you realized the gravity of the Stage IV Ovarian diagnosis that had already infiltrated Mom’s lungs, liver and bowels.  The first and best thing that any of us can do is to “own” our cancer, get the best medical advice, and I always say, have a 2^nd opinion.  Then make choices accordingly, none of which will be “ideal” of course.    Although you’re broken hearted, you made the right decision.  The longer your mother lived, the more pain she would have been in. So never think twice that you did not make the right decision.  You saved your mom a lot of needless suffering.  Sometimes family members do not make the right decisions.  For one, they think I don’t want to be the one that ends a life.  Then it can be selfish when really analyzing it, because they can’t bear to part with the one they love.  Often they hold out hope for a miracle, but although God can perform miracles, He doesn’t “owe us anything!”  But different people will respond differently to terminal illness and decisions that must be made. 

 As a Stage IV Ovarian cancer patient I have talked with my family members, and they all know that I do not want to be “kept alive” by artificial means when my body wants to “shut down.”  No, it isn’t going to be pretty—it’s going to be painful.  But I’m not there yet, but certainly headed in that direction.  My cancer has advanced significantly in the last few months, and I have begun my third regimen on October 20^th, all the while knowing that it is “stop-gap” medicine. 

As for me, I’m a firm believer, and am comforted by what the Psalmist says in Psalm 139.  David is communing with the Lord.  In effect he is saying, “Lord no matter where I go, You’re already there.  Not that I want to ever hide from you, but if I so desired, You would always know where to find me.   As a matter of fact, 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 take heart in knowing that although God hasn’t dropped down a calendar with the day of my “departure”, I will not live nor die one day sooner than was allotted me in this life.  He doesn’t want me to be consumed with worries over things that I cannot control.  Sure, it seems like some sail through life with nary a scrape, while others are constantly besieged with difficulties.  Only God can figure that out.  My job is to keep my eyes on HIM, and pray for His peace and strength to endure this cancer.  And He has, and He does.  So although you didn’t ask, that is how I find the will to live and have peace in my soul.  I don’t have the energy within myself to “whip up” a positive attitude about Stage IV because I am a realist.  We’re not all going to escape suffering in this present age.  And you surely know that well.  But I’m confident that when my days on Earth are done, I will meet my Lord face to face.  There will be no Ovarian cancer patients in Heaven.  And so while it won’t mend your broken heart, your mom has “slipped the surly bonds of Earth and touched the face of God.”  She would never elect to come back here in this chaotic world if she were given the choice.  She would want, as I do, all my children and loved ones to meet me on the other side. 

Heather, from “Diagnosis to Death” was not what you expected when your mother first went to see her doctor.  You hardly had time to come to grips with the realization that your mother was Stage IV Ovarian Cancer before you had to assume the responsibility for making funeral arrangements.  I know it still all has to seem surreal.  I find that when I’m met with devastating news that for a while, it almost seems surreal.  Then I’m able to absorb it and begin a plan to cope as best as possible. 

And as for me, I was met with Peritoneal Carcinomatosis and Stage IV Ovarian Cancer right out of the gate in November of 2012.  Being served with a possible 6-months or less life sentence is not what I expected when I went to the emergency room for what I thought might be a hernia.    I’ve had Cytoreductive Surgery (CRS), (July 2013).  Successful targeted radiation (Cyberknife) to 3 cancerous nodes on the Caudate lobe of my liver, gave me another year of quality life in 2014.  Now my remaining organs seem all too eager to join forces and become “one with the OC.”  But I won’t belabor that point here, only to say that there is no Stage V! 

You will find more than one opinion here, and many will differ depending on the "age and stage" of cancer for each individual.  So mine may differ from others, but we all answer from the heart based on our best knowledge and experience.  And that will differ for each one here.

Now Heather, you may not think so but you are still a “young woman!” You’re only 32!  But may I be so bold as to tell you that I agree with your Mom’s oncologist.  If you’re through having children, based on my own personal experience, having a complete hysterectomy may be beneficial for you.  It would eliminate a lot of unnecessary worry, and regrets.  Look at it this way, had I known at age 36 what I didn’t learn until age 73, I would have jumped up on the operating table, instructed the surgeon to “take it all out”, and if he had any soft serenades, they could have put the music on.  Don’t spend a day of your life looking in the rear view mirror, and saying, “Oh if only” when you have choices to make.  Take the long look and go for it would be my best advice.  And there’ll be no charge for this “free personal opinion”.  And even though I’m Stage IV, with the help of the Lord, I’m making the most of the days that I have left.  And I’ve spent no time “looking back” except to share with others my own personal experience, and give them another way of looking at things.  You’ll be no less of a woman minus all the “inner tubes”.  You’ll be free from those annoying monthly periods and fear of becoming pregnant in the change of life.  Contending with possibility of hot flashes for a time cannot be compared with coping with incurable Stage IV Ovarian Cancer.  So that’s my 2-cents’ worth Heather. 

Briefly, which is difficult for me.  I’m now almost 78 years old, but as a young lass of 36, after I had my 3 boys, I had my uterus removed.  My monthly periods were painful.  At that time gynecologists were not as well versed as they are today in possible contributing factors to Ovarian Cancer.  Well, in hindsight, I’ve learned that now a common belief is that Ovarian Cancer actually begins in the Fallopian Tubes.  So a pre-emptive strike against Ovarian cancer could be a complete hysterectomy.  And that even if you are tested for genetic disposition, and found not to have any linkage in your family, if it were me, I would give surgery serious consideration. 

As for genetic testing, I will give you a link that speaks more to that subject.  But this I will tell you.  If my doctors had known over 45 years ago that leaving in the ovaries and fallopian tubes could well result in Ovarian Cancer in later years, I would not have hesitated to say, “Take it all out!”  Like I say, "Hot flashes" can’t be compared to the ravages of Ovarian cancer.  So my advice, for a young woman like you would be to seriously consider the advice of your gynecologist.  And especially, if after you are tested, and found to have a genetic disposition for Ovarian cancer, by all means please don’t rule out having the complete hysterectomy.  Had my gynecologist removed my ovaries and fallopian tubes, most likely I would not be dealing with OC today.  But I can’t complain because all my other “maladies” to date are not to be compared with a cancer diagnosis.  All things considered, I’ve been blessed.

And so my advice would be to err on the side of caution and proceed with consideration of a complete hysterectomy.  This would give you peace of mind.  Instead of wondering when or where the cancer might choose to visit you, you could at least have the consolation of knowing that at least your chances of being diagnosed with OC have been greatly reduced.  Although, you as a nurse would know, that even after the removal of the ovaries, that OC can occur.  But as a side blessing at age 36, I loved not having the fear of giving birth at age 40.  Three boys in a 5-yr. period were “punishment” enough.  LOL However, I always like boys because I grew up with 4 older brothers. 

And as for genetic testing, I was tested a couple of years ago now.  My oncologist suggested I be tested.  They first secured the approval of my insurance company.  I have supplemental insurance, thank God, and all my bills were paid.  For my part, I was to provide the nurse who took my blood, a list of all the people both maternally and paternally that I knew had cancer.  Well, it turns out that I had over 20 major cancers on my mother’s side.  There were 4 instances of lung cancer in one of my uncle’s family.  And yet, results did not show me to be genetically disposed to develop ovarian cancer.  But here I am.

And if your insurance will approve it, I would go for the whole 9 yards.  First be tested.  It only required for me to have some blood drawn from my arm—answer questions—provide names of family members and within two months, I knew the results.  So just remember, I am not a medical expert, and am just giving you my “If-I-were-you” opinion.  Take it for what it’s worth.

Below my name are some references relative to Genetic testing, and if your insurance will cover the cost, go for that too!

Love and prayers for you and all your family in this time of intense grief,

Loretta (Now 77 yrs. Old)

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV @ age 73

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1.  https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

“BRCA1 and BRCA2: Cancer Risk and Genetic Testing…

What are BRCA1 and BRCA2?

BRCA1 and BRCA2 are human genes that produce tumor suppressor proteins. These proteins help repair damaged DNA and, therefore, play a role in ensuring the stability of the cell’s genetic material. When either of these genes is mutated, or altered, such that its protein product either is not made or does not function correctly, DNA damage may not be repaired properly. As a result, cells are more likely to develop additional genetic alterations that can lead to cancer.

Specific inherited mutations in BRCA1 and BRCA2 increase the risk of female breast and ovarian cancers, and they have been associated with increased risks of several additional types of cancer. Together, BRCA1 and BRCA2 mutations account for about 20 to 25 percent of hereditary breast cancers (1) and about 5 to 10 percent of all breast cancers (2). In addition, mutations in BRCA1 and BRCA2 account for around 15 percent of ovarian cancers overall (3). Breast and ovarian cancers associated with BRCA1 and BRCA2 mutations tend to develop at younger ages than their nonhereditary counterparts.

A harmful BRCA1 or BRCA2 mutation can be inherited from a person’s mother or father. Each child of a parent who carries a mutation in one of these genes has a 50 percent chance (or 1 chance in 2) of inheriting the mutation. The effects of mutations in BRCA1 and BRCA2 are seen even when a person’s second copy of the gene is normal.

How much does having a BRCA1 or BRCA2 gene mutation increase a woman’s risk of breast and ovarian cancer?

A woman’s lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2.

Breast cancer: About 12 percent of women in the general population will develop breast cancer sometime during their lives (4). By contrast, according to the most recent estimates, 55 to 65 percent of women who inherit a harmful BRCA1 mutation and around 45 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by age 70 years (5, 6).

Ovarian cancer: About 1.3 percent of women in the general population will develop ovarian cancer sometime during their lives (4). By contrast, according to the most recent estimates, 39 percent of women who inherit a harmful BRCA1 mutation (5, 6) and 11 to 17 percent of women who inherit a harmful BRCA2mutation will develop ovarian cancer by age 70 years (5, 6)…

Who should consider genetic testing for BRCA1 and BRCA2 mutations?

Because harmful BRCA1 and BRCA2 gene mutations are relatively rare in the general population, most experts agree that mutation testing of individuals who do not have cancer should be performed only when the person’s individual or family history suggests the possible presence of a harmful mutation in BRCA1 or BRCA2.

In December 2013, the United States Preventive Services Task Force recommended that women who have family members with breast, ovarian, fallopian tube, or peritoneal cancer be evaluated to see if they have a family history that is associated with an increased risk of a harmful mutation in one of these genes (17).

Several screening tools are now available to help health care providers with this evaluation (17). These tools assess family history factors that are associated with an increased likelihood of having a harmful mutation in BRCA1 or BRCA2, including:

• Breast cancer diagnosed before age 50 years

• Cancer in both breasts in the same woman

• Both breast and ovarian cancers in either the same woman or the same family

• Multiple breast cancers

• Two or more primary types of BRCA1- or BRCA2-related cancers in a single family member

• Cases of male breast cancer

• Ashkenazi Jewish ethnicity

  When an individual has a family history that is suggestive of the presence of a BRCA1 or BRCA2 mutation, it may be most informative to first test a family member who has cancer if that person is still alive and willing to be tested. If that person is found to have a harmful BRCA1 or BRCA2 mutation, then other family members may want to consider genetic counseling to learn more about their potential risks and whether genetic testing for mutations in BRCA1 and BRCA2 might be appropriate for them.

  If it is not possible to confirm the presence of a harmful BRCA1 or BRCA2 mutation in a family member who has cancer, it is appropriate for both men and women who do not have cancer but have a family medical history that suggests the presence of such a mutation to have genetic counseling for possible testing…”

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2. https://www.cancer.gov/about-cancer/causes-prevention/genetics/directory

 NCI Cancer Genetics Services Directory

“This directory lists professionals who provide services related to cancer genetics (cancer risk assessment, genetic counseling, genetic susceptibility testing, and others). Professionals must apply to be listed in this directory and must meet certain criteria. Inclusion in the directory does not imply an endorsement by the National Cancer Institute. 

For questions about being listed in the NCI Cancer Genetics Services Directory, please send an e-mail to

GeneticsDirectory@cancer.gov

Criteria for Inclusion in NCI Cancer Genetics Services Directory

Application for Inclusion in NCI Cancer Genetics Services Directory

Description of NCI Cancer Genetics Services Directory…”

Heather, at the bottom of this page, there are places to contact them or even “live chat online” which I would recommend.  Make a list of your concerns and ask the person how best to get those questions answered.

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Heather,

I am so sorry about your mom.  It's hard enough losing her, but to also have to worry about your own health must make things much more difficult.  I think the others have given you information about the specific gene that identifies risk.  You should qualify for this testing, based on your family history and insurance ought to pay for it.  

If you are BRCA positive, of course your risks of breast and ovarian cancer are higher.  My mother died of breast cancer in the 80's.  Although I was never tested, I considered it a number of years ago, but never followed up.  Subsequently, I was diagnosed with ovarian cancer in 2009.  Ultimately, I found out I am BRCA1 positive.  

The question to ask is whether or not you would do anything if you found out you had the mutation.  If not, then the testing is not necessary, unless you just want to satisfy your curiosity.  If you do turn out to be BRCA positive, you have some choices.  Contentional medicine will tell you the best prevention is to have prophylactic surgery, mastectomy and ooperectomy.  If you decide, as someone mentioned above, to join the group "FORCE,"  they too will recommend this approach.  

Obviously, due to my diagnosis, I no longer have to worry about my ovaries.  But I opted out of the preventive mastectomies.  My approach is to address the risks by keeping myself extremely healthy through diet and exercise, supplements and stress management.  As it turns out, our genes are not cast in stone and they can be managed through good diet and habits.  The science of epigenetics explains this.  I feel that even with the preventive surgery, if your body is toxic and malnourished, which is more common than you would think with so much sugar and processed food in the standard American diet, you can still end up with other, related cancers, even though the offending organs are gone.  

If you are BRCA positive, insurance will pay for annual breast MRIs and mammograms.  I choose not to have mammograms because BRCA positive patients are much more sensitive to radiation than those without the mutation.  Therefore, exposing yourself to mammograms can actually make you more suceptible to breast cancer if you are BRCA positive.  In place of the annual mammogram, I opt for breast thermography, which is done with a special camera that detects warmer parts of your body.  It identifies the development of a tumor much earlier than mammogram and is better for women with dense breasts.

You have so much to think about.  But first, you should take time to grieve the loss of your mother.  You deserve to take care of yourself for awhile before decideing what you want to do about your genes.  

Good luck

Genes are there from birth.  So someone can be tested at any age.  If you test positive, the testing for your relatives is much cheaper because they know exactly which BRCA mutation to look for.  

Good luck.

I have never heard of a place that will test anyone under the age of 18. The consequences of the test can be huge emotionally and children/teens may not be able to handle that. Plus, there is nothing they can do with the results at that age as they will not receive screening and cannot schedule preventative surgery.

My kids are 8 and 9 and I hope they choose to be tested one day but the decision will be theirs and I will support them whatever they choose. To be honest, I hope they aren't tested until closer to 30 as the risk before that is very slight even if they have the mutation and I want them to have a chance to live normally, fall in love and have kids first. Of course, that may or may not happen.

For your sake, I hope you are tested and negative. Then you cannot have passed any of these horrible mutations on to your children.

madeline236 said:

I had the genetic test, here's some information about it

hi Heather. I am so sorry for your loss. My dad died in June and it is so hard to lose a parent for any reason.

I can answer some of your questions.

My mom had agressive breast cancer at a young age. Then her little sister got it too, it spread and she didn't make it. Looking at our family history, there was a lot of breast cancer and it usually arrived when people were in their 30s and was agressive. My GP suggested genetic testing and my mom went for it. They took 1 vile of blood and in about 3 months she had the results - she is BRCA2 positive. They prefer to test the person who had cancer if possible as if there is a genetic mutation in the family, then this person likely has it. Others may or may not have received the mutation so testing one person doesn't mean relatives aren't at risk for it. When there is no living person to test, they will test a child (like in your case), but the results won't be relevant to your family members (siblings, cousings, etc), other then your children.

Once a mutation is identified, everyone in that family can get tested and the test is done in a few weeks as they only look for the exact mutation that familiy has. (For the first person tested, they have to look at the entire string of genes and that takes way more time). If a parent has a genetic mutation, there is a 50/50 chance they passed it on to each of their children.

My sister did not get it and I did. Pure luck of the draw. It could have been both of us or none of us. None of my cousins have been tested as they'd rather not know.

These genes result in high risks for breast cancer and ovarian cancer. The genetic counsellor I deal with is great and has explained a ton about my risks and also what my options are. Whoever decided to make them geneticists and counsellors was wise.

I had preventative, risk-reducing mastectomies 5 years ago as a result of being BRCA positve and was waiting until I was in my 40s to have preventatitive salingo-oopherectomy (removal of tubes and ovaries) but things have changed so I'm having surgery scheduled soon. It felt good to take control of my situation but everyone is different in what they do or don't do if they have a genetic mutation.

If you test positive, you don't have to have surgery like I did. Many people choose to monitor regularly instead. Especially for breast cancer as we have good technology to catch it early and treat it. For example, you can have an MRI and a mammogram every 6 months alternating. For ovarian cancer, you can have regular ultrasounds and CA125 blood tests (not as good as MRIs and mammograms for breasts, but the best we have at the moment). you can also screen for at time and then change your mind at a certain age or life stage for example. Many people feel that knowing their risks empowers them to make informed decisions.

I suggest you give yourself time to grieve before thinking about radical steps such as preventative surgery or even genetic testing. When you are ready, do some research on hereditary breast and ovarian cancer (HBOC). There are some good sites out there devoted specifially to this. I spent a lot of time on FORCE (facing our risk of cancer empowered) message boards when it was new to me but they don't seem to be as active lately. There is also Willow and http://hbocsociety.org/. There are also annual conferences/symposiums offered by several groups that are well received (I've never gone).

Note that this genetic test can have an effect on insurance. Look into this beforehand. I'm in Canada and here we have no genetic discrimination laws to protect us so I can no longer purchase life insurance. I think in the US you have some protection but don't have the test before knowing the laws where you are and buying insurance beforehand if necessary.

If you have any questions, I'd be happy to answer them from my experiences.

Once again, I'm sorry you had to find us here and that you just lost your mom.  ***hugs***

 

Hi Madeline! I see you are from Canada too! My sister was Diagnosed with Stage 4 OV Cancer in July. She just had her last round of Chemo this week and is doing well! She is 40, so they did the Genertic Testing on her. She is BRCA 1 Positive. So i have a 50% chance of having it too. I'm in Alberta and have been referred to a Genectic Counselor but i haven't heard from one yet. I've already been for a mammogram and ultrasound, as they found several cysts. My breasts are apparently very cystic and dense, so high risk. I'm wondering how long you had to wait to see a genetic counselor. I already know that if i test positive i will have preventatitive salingo-oopherectomy and a double Mastectomy. I am 39 with 4 kids. 3 boys and a girl. I want to be able to take control before cancer has a chance to decide for me.