Mother and Daughter

It's a lovely thing for a mother to hear that her daughter "looks just like" her, or that she has a laudable characteristic attributed to "being her mother's daughter".  It makes us feel a connection to our daughter and that, maybe, we did something right in raising her. I am just very grateful that I managed not to ruin my own daughter.  As for her character and intellect, she brought those gifts into the world herself.

But I will guaran-damn-tee you, there is one way no mother wants her daughter to be like her--to share a gene mutation that means her child is at an increased risk for a disease of any kind.  Oy!  When I first talked with my surgeon after my diagnosis, he encouraged me to get genetic testing for breast cancer.  I told him that it was clear that I had a proclivity toward breast cancer because, after all, I HAD breast cancer.  We also knew that our daughter was at risk because her aunt, both of her grandmothers, and now her mother, had breast cancer.  We talked about other things we needed to talk about for a while and he encouraged me to have genetic testing once more.  I said "I don't think it is necessary at this time". Before the meeting was over, he returned to the subject a third time.  Okay, now, I'm annoyed, figuring it is just one more unnecessary, expensive test.  So I buttonholed his fine tweed blazer and went nose to nose with him (Steve was ready to bolt out the door at any moment because he knows how I can get) and said in my incomparably confrontational tone:  "I don't GET it?  Why do you keep suggesting genetic testing??!!" He replied in a quiet tone:

"Ovarian cancer".  

Jeezopeezo, why the hell didn't he say that from the get-go?  Ovarian cancer?!!?  OVARIAN CANCER?  Yes, the genetic mutation of BRCA1 and BRAC2 genes that are indication of increased risk for breast cancer are implicated in ovarian cancer as well, and the rate of survival for ovarian cancer patients is approximately a heartbreaking 25%!! Terror struck my heart--for myself and for the implications for Casey.  I was sick to my stomach thinking about her having that sort of "sentence" at 22 years old.  I was now also furious with my surgeon for not being forthright (would I have ever known if I hadn't challenged him?), and with my OBGYN who had not ever mentioned genetic testing for ovarian cancer even though she was well aware of my family history (and who I had asked, specifically, about screening for ovarian cancer when my friend Claudia was diagnosed). Arrrrrrrgh!

Long story short, Steve and I became educated about genetic testing, went through a qualifying screening which basically examined the occurrence of cancer in my family tree, received pre-approval from our insurance company (the test costs a few hundred dollars but nothing compared to the cost of treating cancer), and I had a simple blood draw for the genetic analysis.  Easy as pie.

So, what we found out was:

• 80% of  cancers are sporadic (by chance)
• 10-15% of cancers are familial (occur within family groups but are not clearly genetic)
• 5-10% of cancers are genetic.
• features that suggest hereditary cancer are two or more relatives with the same kind of  cancer, cancer diagnosed before age 50, persons have more than one cancer, genetically related cancers such as breast/ovarian and colon/uterine cancers.  

Hereditary Breast and Ovarian Cancer Syndrome (HB0C) is due to mutations in the BRAC1 and BRAC2 genes.  Here is the frightening part:  Women with BRCA1 mutations have a

•  50-85% lifetime risk of breast cancer, compared to 10-12% lifetime risk in the general population.  
• 40-60% lifetime risk of ovarian cancer, compared to 1-2% lifetime risk in the general population.

THIS IS HUGE!  They have a 50-85% of rain or a 40-60% chance of rain, compared to almost no chance of rain.  The significant difference in risk for ovarian cancer is mind boggling!  (The risk factor for the BRCA2 mutation are exactly the same for breast cancer as the BRCA1 mutation, and the risk factor for ovarian cancer is a 15-20% lifetime risk. But with a 25% survival rate, who wants to play those odds?) Furthermore, the BRAC2 gene is linked to pancreatic cancer, larynx cancer, and melanomas.

And for mothers of sons, if the BRAC1 or BRAC2 mutations are passed to your son, his risk of certain cancers increase.  There are also some ethnic groups with more frequency of these genes than others.

My daughter and I dodged the bullet on the gene mutation (I do not have it so I could not pass it to her).  There is still the family history to keep us alert, but for the genetic results, we are thankful and relieved.  So, we can claim a "happy ending" for now.  I would like everyone to have a happy ending. 

• If there is a history of breast cancer, ovarian cancer and/or colon cancer in your family, the very least you should do is meet with a genetic counselor to assess your eligibility for the test.
• A genetic counselor will work with your insurance company to prequalify you for the test.
• If you have the test performed, the genetic counselor can provide education appropriate for the results of your test.  There are a number of pre-emptive decisions one can make to prevent these diseases.   

There is virtually no way to detect ovarian cancer early except by luck.  It is usually a disease without symptoms until it has progressed beyond an easy cure.  Knowledge of your genetic susceptibility increases your chance to prevent the disease.  

Knowledge is truly power against ovarian cancer.  

Girlfriends! and. . .

There is a lot to be said for girlfriends when you are going through the trials and tribulations forced upon you during cancer treatment.  My own cadre of good will soldiers have been there all the way--meals, games, happy cards and goofy or sweet gifts, or just being on the other end of the telephone line when I needed them.  My girlfriends?  Could not have done it without them. . .

That being said, there's also a lot to be said for "boyfriends"!  

Steve gets the five star award for being 100% THERE.  I cannot imagine passing through that tunnel with anyone else holding my hand and encouraging me every step of the way--consulting on my decisions, indulging my weaknesses, listening to my fears, comforting and feeding and never once complaining, even with a raised eyebrow.  Slept twelve hours last night and you are now just finishing a four hour nap?  "You obviously need the rest to recuperate." Basically trusting me to know my needs and limits and indulging me every step of the way.  Unbelievable and so very MINE!

Michael, my sweet boy, gentle and somewhat spooked (I think) by the whole damned thing but what's a kid to do when all of a sudden his mother is bald as a cue ball, sleeping 16 hours a day, and barely strong enough to get out of a car?  He was surely entitled to ask "Who are you and what have you done with my mother?!"  But instead he gave me long hugs, offered his hand, lent me a warm running cap, and called home from college to chat and ask me to read his papers and to tell me he loved me.  Like father, like son.

And there are more boyfriends, I am not ashamed to say!

My brother (by way of marriage) Jeff who had a similar but totally different experience ten years ago was tremendous and became my own personal support group.  Jeff is positive and upbeat and very caring.  He listened when my mood was bummed and did not try to jolly me through bad moments but always made me feel that "This is normal for where you are now" and, by his very example and without words, he stood as a symbol of returning to normal as I knew it to be.  He senses where I am in this journey and his comments about his own experience are both somehow totally un-selfcentered and perfectly timed for where I am at this moment.  He texts and calls me frequently just to say he is thinking of me, or to talk about what his family is up to, or about the weather.  Like brother, like nephew, like family.

At the risk of playing with fire, Steve's partner and his boss, are in this category of "boyfriends".  Oh my.  Mike, who we have known forever, IS the rare one who can tease me about the cue ball or the endless naps because his humor has an edge but no sharp teeth.  There's a foundation of mutual affection coming from years spent together watching his twins and Michael grow up as friends. And Steve's boss, Ray, WOW.  I met him at dinner about the time I was diagnosed, and was surprised and not a little pleased that he checked in with me from time to time to see how I was doing--by inquiries to Steve and emails to me.  Now, who says there are not great guys out there?

And there are more:  my brother Arnie with his indescribable curmudgeonly sense of irony, providing me with entertaining anecdotes about everything from politics to our family history and making me laugh at his ridiculous observations of the way the world is.  Checking in frequently from his mountaintop in New Mexico.  Ziddy, my own dear personal, extraordinary trainer for five years who totally qualifies as a "mensch" with a corny sense of humor and who is just like a brother to me.  "Mr. Wonderful", my friend's husband, who volunteered to have his head shaved with Steve and me as a show of support, and who never fails to make me laugh with HIS curmudgeonly grumbling about "stuff".  Or nephew Byron, sweet like his cousin Michael and always a favorite, "just checking in". Scotty B, making me feel like some sort of special princess when we meet him and his wife for dinner. And Max, dear ever lovin' Max, who made me laugh heartily in high school, taught me to skydive in college, helped me drown my sorrows in beer every time I was dumped by a boyfriend, and is always there to this day to laugh and chat and remember when we were young and the future was endless!

So, to my girlfriends, I could NOT have done it without you.

And to my boyfriends, I could not have done it without YOU.

And to Steve, thank you for realizing how important both my girlfriends and boyfriends have been in bringing me to this feeling of health and recovery and optimism!