BRCA 1 and 2 testing demystified

September 12, 2008

I must remind everybody that I am not a medical professional and this is my interpretation of the information given to me by somebody much more qualified.  That said, here goes.

Everyone has the BRCA genes.  They are tumor repressor genes that keep our cells from growing wild (cancer) in our breasts and ovaries.  What we’re being tested for is a damaged gene.  This can happen for various reasons which I won’t go into (mostly because I can’t remember that part.)  If your cancer is hormone negative, you are more likely to be BRCA 1 positive.  Hormone positive cancers tend to be BRCA 2.  If you are under 50 with breast cancer, you have a 7.5% chance of having the gene but it is good to remember that only 10% of all breast cancers are hereditary.

What does this mean for me if I am positive for one of the genes?

-the untreated breast has a 50% chance of developing cancer

-there is a 30 – 50% increase in the chance of me developing ovarian cancer

So what can I do?

-continue to be vigilant for any changes in the untreated breast

-prophylactic mastectomy on the untreated side

-transvaginal ultrasounds to check for ovarian cancer

-CA125 blood tests to look for tumor markers

-both tests for ovarian cancer have a lot of false positives and negatives.

-prophylactic oopherectomy (removal of ovaries)

What would I do?

I have a grade III cancer (most aggressive) with 4 positive lymph nodes.  This gives me a 60% chance of microscopic spread of the cancer. All along we have treated it aggressively and I would continue on in that fashion having the prophylactic mastectomy and removal of the ovaries.  I also learned that even if I were to remove the ovaries, I would continue taking Tamoxifen.  (Didn’t know that.)

What does this means for my family?

The genetic counselor said that if I am positive, it is from my Dad’s side so they would want to test him.

My sister and my brother would have a 50% chance of having the gene.  My sister, K, should be tested as soon as possible.  My brother. T,  might want to be tested for it’s ramifications on his future children.

My children would have a 50% chance of having the mutation as well.  When L is in her early 20s she would be tested and receive her first mammogram (which she’s going to get anyway because the rule of thumb is 10 years prior to your mother’s cancer diagnosis).

The stats for T and J would be this: a 6% (up from 3%) chance of developing breast cancer and a 20% (up from 15%) chance of developing prostate cancer.

So that’s it in a nutshell.  I’ve got a few more weeks to wait for the results.  My insurance did cover the testing, which is good.  I also think that the WordPress spell checker should add “oopherectomy” and “transvaginal” since I’m only guessing at the spelling.  Just sayin’.

Crossposted to ThrowsLikeAGirl

Edit 9/13/08 It’s “oophorectomy” with an “o”.  Heh.  I was close.

“Shrink Wrap”

August 25, 2008

Throughout the new book published by Kids Konnected titled Love Sick, the comments or advice written by Lynnette Wilhardt, MSW, LCSW is labeled “Shrink Wrap”. A fun play on words, I think…  So as I continue to post on the questions that Lynnette is most frequently asked I thought this same label may be appropriate.

How do I tell my child I have cancer?

Most importantly, be as honest as you possibly can.  Children can tell when you are telling only half of the story.  Parents need to start with a basic explanation of what cancer is.

Cancer occurs when cells begin to grow and multiply in an uncontrolled way.

Normal body cells grow and divide over a period of time until they eventually die. But cancer cells continue to grow and divide and grow and divide. Eventually, they gather to form tumors. Tumors are lumps that can interfere with the body’s normal processes. Sometimes cells from a tumor break away and travel to a different tissue or organ. This is called metastasis.

As scary as all this sounds, most cancers can be treated and controlled and many people with cancer get better and lead normal lives.

After you have explained cancer, it is important to dispel any myths your children may have about cancer.  Here are some that come up frequently in our support groups: 

 –          Explain that cancer is not contagious.  Your children can and should still kiss you!:)  It is not like having a cold or flu.


–          Children cannot “cause” cancer.  It doesn’t matter how naughty a child is, they do not cause cancer.


When should I tell my child?


It is important to tell your child as soon as you have all the information you need to explain to your child your diagnosis and treatment.  The longer you wait to tell your child, the more they may sense that something is wrong and not understand why they aren’t being allowed in the “loop.”  It can also be detrimental to the child to hear about the diagnosis from someone else and not directly from their parents.


How much information should I give them? 

This depends a lot on your child.  Some children will want a lot of information, while others will not want to hear much at all.  It is important to tell your child as much as they may want to hear.  Watch for cues that they may be experiencing information overload and know when to stop.  In general, information is empowering, so if your child wants a lot of information then you should provide it to them.  It can also be empowering taking your child to your oncology appointments if they want to attend; this allows them to ask the doctor or nurse some of the questions that you may not be able to answer. 

My breast surgeon was also in agreement with telling the children the truth… Kids are very perceptive and they will hear you talking on the phone. We had a family meeting at our house when the kids got home from school. My course of treatment did change after we first told them, but they knew first. It probably will be one of the hardest talks we will ever have to have with our children, I know it was for me.

Opinions: professional, survivor and kids

July 28, 2008

I have posted before that I am involved with the non-profit organization Kids Konnected . The kids and I started attending meetings 2 years ago during my treatment. My son does not attend anymore, but my daughter is a teen leader and still is active with the teen group, so we attend every other Monday. Lynnette Wilhardt, MSW, LCSW is the Clinical Director and a specialist in Psycho-Social Oncology Counseling. I asked Lynnette if she would be willing to write some guest posts or articles for the site. She has given me the top questions most often asked of her regarding cancer and how it affects children. I will publish a few at a time over the next few weeks.

Should I bring my child with me to the hospital/or let them visit me when I am there?

Yes, I think it can be helpful for most children to visit their parent in the hospital. Most children find it comforting to see for themselves what is actually going on with their parent. If left to their imagination, they will often come up with something that may cause them far more stress. Children are very adaptable and if primed about what to expect, such as tubes, machines, etc., most will find the experience more helpful than scary. I think it sets a good tone regarding the parent’s illness that it is a family experience and that everyone goes through it together and will support one another. If your child is struggling with separation anxiety over the idea of you going into the hospital, it can be helpful to them to be reassured that they will be able to visit you. Making cards and gifts for the ill parent can help give the child something to do and focus on while the parent is away.

If a child refuses to go, they should not be forced to go. However, they should be asked why they don’t want to go and the caregiving parent should help explore their feelings about it to dispel any myths they may have regarding it. If a parent is terminally ill and it may be the child’s last chance to see the parent to say, “Good-bye,” then the child should be strongly encouraged to go including explaining to the child that it may be their last interaction with their parent.

This past Monday at the group, a woman who will be having her Mastectomy this week asked about bringing her children to the hospital. My children D then 6 and N then 13 did come to visit me in the hospital after my mastectomy. I originally wanted them to come to see me, but when D came in I saw the look of fear on his face and I felt so bad. Then when he and N came back up after she got out of school I was in extreme pain and they had to give me the pain meds in front of them. I am petite, I had to explain that if I started to not make sense, I was okay – it was just the pain meds. My opinion to this Mom was that if the kids were going to come to see her – perhaps someone should go in the room prior to make sure that she had her meds and was “ready” for the visit. This may be my attempt/wish in hindsight to control the situation and try to spare the kids any additional discomfort. I discussed these feelings with Lynnette and she felt that even though the kids were frightened she still felt that it was better that they did come to see me.

This week I decided to ask both kids, now that time has passed and I am healthy what their opinion is:

N said “no one was going to stop me from seeing you.” She did not want to hear my voice on the phone – she said that she needed to physically see me to know that I was alive and that I was going to be okay. She said that it was not as much scary as sad. She also remembered that they got to eat the chocolate that others had brought me. Chocolate does make everything better!!!

When I asked D what his opinion was, he said that it was good and bad when he came to see me. Good because he got to check on me, but sad to see me so sick and hooked up to the machines. He told me that is why when he sat in the room he looked everywhere around the room but not at me because it was too sad. I asked him if he was scared and he said “yes” scared and sad.

As with any situation and opinion there is no RIGHT answer. So much depends on knowing our own children, their ages, their anxiety level and our specific medical situation.

What are some of your opinions on this question?

Talking to preschoolers about cancer.

June 23, 2008

Probably should write something after that nice introduction from Whymommy.  🙂  I’ve been thinking and thinking on what to write next.  The diagnosis post is easy.  What happens next is hard.  How do we talk to our kids about cancer?  I wrestled with this for ever.  I still wrestle with it. 

The 5 year old understands that I’m sick.  It was recommended to us to go ahead and use the word “cancer”.  I think it’s sort of like the Voldemort thing and using the word takes away some of its power and scariness.  The last thing you want as a parent is for your child to hear about cancer from someone else in scary, hushed tones.  Their little imaginations work overtime and imagine the worst.  So rather than calling it the disease-that-shall-not-be-named, we told her I had cancer; that part of my breast was making me sick and so we needed to take it out.  I’d had surgery before so that part didn’t seem to frighten her.  Then we talked about chemo medicine (and I’m careful to call it chemo medicine lest she be afraid that Tylenol is going to make her bald) and its various side effects.  I think the part that she struggles with the most is the length of the illness.  I’ve never been sick this long and she’s ready for me to be done.  (Amen to that.)  We don’t talk about death.  I’m not there yet.  We’ve been sort of talking to her on a need to know basis and we just aren’t there.  I don’t make promises, but for now the mortality issue is on the back burner.

Let’s face it.  The 2 year old is pretty easy.  Most of this goes right over his head.  The hardest part with him are my own physical limitations.  Like Judy I also felt like I lost my “pillow” for him to rest his head.  Since mine was only a single side mastectomy, my port went in on the other side, right in the place where J used to put his head.  At my last chemo, my port was actually flipped backwards, probably due to a little 2 year old help.  So what do we do?  We cuddle using pillows, and consistently use the words “gentle”, “be sweet” and “Let’s not drive the Matchbox cars over Mommy’s port”.

Of course the best part of having kids during cancer, is the joy they bring with them every day.  L said to me once, “Mama, I’m sorry you lost your boob.  I hope you find another one.”  Heh.  And J’s piece de resistance was right after we had shaved his head for the summer.  He crawled into my lap, rubbed his head, rubbed my head and said, “Mommy, I wike your hair.”