(Genetic) Testing My Children

In a piece entitled"The Genes That Bind" (summer issue of CURE magazine), Journalist Charlotte Huff covers the emotionally charged topic of when and how to share information on genetic risk with children.

Early in the article, Huff writes, "A few recent studies indicate that today's parents err on the side of disclosure."

Some readers might think, "To 'err' is a bad thing." If they read on, they'll see Huff believes that this error is a good thing. And I agree. As I've shared in When a Parent has Cancer and a few posts on this blog (5/21/10, 12/6/09, 10/21/09), my number one tip to parents with cancer has been to tell the truth, couched in love, support and hopefulness.

Exactly what to say -- and when -- is unique to each child in each family, depending on factors such as

• The typical age of onset of disease.
• The implications of that disease.
• The availability of screening measures.
• The ability to delay, prevent and treat the disease.
• The child's age and maturity.
• What else is going on in the family and in the child's life.

If interested, you can read about my personal experience with genetic risk in "Testing My Children."

Healthy Survivors obtain knowledge about when and how to share information regarding genetic risk with their children as well as how to continue to support and guide their children thereafter.

Comments

[Jonnie Hickman]

I have been following your blog for a couple of months now and recently in my own fight I have had to face the genetic testing of my child and his fears. I am a nurse and was diagnosed in August of 2008 with PTC-NHL Stage IV-B.

A year ago when I spoke to my son he said he would never have children because of the genetic factors and that he didn't want a child to go through what I have gone through.

Being a nurse, I think that I made our discussion too clinical for him and since that time, I have been working on sorting out his fears about the testing.

We decided not to have him tested at that time, but wait until he got closer to the "target" age of the disease. He will be 21 next month and now is expecting a child of his own in November. This was not a planned birth, but not unwelcomed.

He now is going through emotional turmoil of not only becoming a father, losing his mother, but fear of passing this gene to his child.

My paternal grandfather died with NHL. As you know, the medical world has progressed since 1955. My father refused genetic testing. I was diagnosed after tumors were found in my neck. While removing these paragangliomas suspicious lymph nodes were biopsied. The NHL was found. The chromosomes were mutant.

As my body declines, my son watches and I try to be open about what is going on, but sometimes I feel I speak to him as a nurse and not a mother. I'm not sure if I should try and approach the genetic topic with him again or send him to some counseling.

I appreciate your blog. I started reading by a God-sighting. You were speaking about being a doctor and a patient. I have struggled to try and keep the parts of my life as a hospice nurse. Sometimes though I look in the mirror and see my patients looking back. Thank you.

[Wendy S. Harpham, M.D.]

Dear Jonnie,
Your situation involves a variety of challenges. My first thought is to find someone who can help you untangle them and address them as best you can.

Just as we can't look in our own ears if we have an earache, at times we need someone else to help us see behind our own emotions. I suspect this is one of those times for you.

I will devote a blog post to some of the challenges. In the meantime, a few thoughts:

* You can't "fix" this for your son. You can only respect him and guide him to resources that may be in a better position to support him.
* Your son needs you as his mother. The nurses involved in your care and the care of the mother of his child can be his nurses.
* When my long-term prognosis was poor in the early-to-mid 1990s, I sought counseling from the hospital oncology social worker. My belief was that the best thing I could do for my young children was to get help for me. The better I was dealing with my fears as a patient and as a mother, the better mother I could be, whatever my medical outcome.

I hope this helps a little. Nothing can make your situation easy. Guidance and support can give you the direction and strength needed to handle your situation the best you can.

With caring and hope, Wendy

[sue c]

My brother-in-law has hereditary colon cancer and was able to be in a study where he and his children (my nephews) were tested. One son has the gene and one doesn't. It gives them the information to have frequent testing done and to be aware of the risks. They are young adults, at least, and able to handle it.

[Debby]

Wendy ~ Everyone loves your writings and special way of handling each situation. I know why people read your blogs and come back again and again.

This is the best part of your Oncology Article: P.S. My wait is over. I got good news: BRCA negative. GOOD NEWS!

love
Debby

[Wendy S. Harpham, M.D.]

Dear Debby,
Thank you for this. I'm always picturing real or imaginary patients, caregivers and healthcare professionals when writing all alone in my pink-and-purple study.

And, yes, it was wonderful news about my brca status.

With hope, Wendy

[Mrs. Jackie Swenson]

Hi,

I underwent genetic testing after reading about it on the website of my Her2 breast cancer support group. My oncologist was very skeptical at first but obliged as I did have several strong factors, one being my Mother's Non-Hodgekins Lymphoma that was diagnosed and treated in 1998 when she was 75.

The result was a BRCA1-variant of unknown significance. Then one of my support group members brought my attention to a website about the Jews in Kaifeng, China. Kaifeng is not too far (comparably, as China is big country) from both of my parents' home towns. My grandfathers on both sides were merchants. And both of my parents are very fair skinned among Chinese...

My oncologist ignored my statements as it is just hard for him to link an oriental woman from the Far East to any Jewish linkage. Then my 2nd Brother was diagnosed with colon cancer at the age of 58. He's the healthiest sibling among the six of us (me being the sickiest being the youngest one and having born premature.)

I put all the cancers in my family and did a Web search - couldn't believe my eyes when 'HNPCC' (Hereditary Non-polyposis colon cancer)popped up. Remembering 2nd Brother's statement that his colon cancer was 'huge', I went to my oncologist and requested for prophylactic hysterectomy/oophorectomy.

I'm feeling very healthy right now. My weight is back to baseline and my lips no longer peeling (due to low-grade fever, happens whenever I was experiencing cancer/illness)I'm pretty sure I have dodged another bullet.

Even though genetic factors can explain very small percentage of cancer prevalence, hundreds and thousands of lives can be saved if we can get the words out. There are historical links that are not obvious to many medical researchers. When I look at the 'dissemination' of the BRCA genes and how the percentage decreases following the Silk Road and the Chinese migration to East and Southeast Asia and then the Pacifics..., I found it 'self-explanatory' how the genes have been carried by the migration generation after generation.

[Wendy Harpham, M.D.]

You've brought up so many useful points by sharing your personal story.
(1) Genetic testing is still in its infancy. Even if genetic testing does not reveal the known mutations of BRCA or other genes, you may still have a heritable mutation. The conclusion is to use the known genetic tests to supplement -- not replace -- the known family history. I discuss my experience with genetic testing in this article:

(2) Wonderful ongoing work is unraveling the story of Jewish lineage. Here's an interesting piece: http://tinyurl.com/29mc97t

(3) Peculiar or unusual symptoms may be useful in knowing when you have recurrence. The challenge is knowing when to ignore something that is true-true-and-not-related.

With hope, Wendy