She’s Bad News

cloudIt’s nothing new. I imagine I was never exactly ‘good news’ to my family – starting with the way I came into this world. It’s not like my parents were expecting me, all excited, with a decorated bedroom. They were not married. In fact, I didn’t meet my biological father until I was 26 – and it was my choice, not his. And the day I met him, he probably still thought I was ‘bad news.’

I was trouble to some people, but to others, like my grandmother, I was the rainbow in her world. She welcomed me with open arms despite my being a ‘little incident’. Overall I was a very happy child growing up. And it was mostly thanks to her. (My biological mother did not raise me but she worked hard to help support me.)

Then there was catholic school.

“No one born of a forbidden union may enter the assembly of the Lord,” sol Hilda the nun read to us in class. Until this day, I am not sure what story was told to the nuns about my origins, but somehow I got into their school. Maybe the money my family gave (what little they had) spoke louder than Deuteronomy.

Although no one ever said to my face that I was ‘bad news’, the culture in my home country labeled me that.

Later, as a young teenager moving to New York City, without the language and without the people who raised me, there were more bad news situations — but those stories are for another day.

What has me thinking about all of this is my most recent development.

As some of you already know, a while ago I underwent genetic testing to see if there was a genetic cause of my cancer. At first I was hesitant because I was worried about how I would react to knowing the results. At the same time, I wanted answers as to why I got cancer at such a young age, with the awareness that genetics probably wasn’t the only thing that contributed. I guess I was looking for some level of control (you never get that with cancer).

Learning about my genetic composition has helped me reach some closure about my diagnosis. This may be related to the fact I was diagnosed before finding out about my mutated gene. But I often wonder — if I had known about this genetic predisposition prior to my diagnosis, would I have reacted to my cancer any differently? I will never know.

I believe knowledge is power. That is why I decided to inform my family about my genetics. To me, finding out about my ATM gene gave me a sense of peace. But what about my family — those who haven’t been diagnosed with cancer yet?

Since giving them the news about our genetics, I’ve felt, in a way, like I’ve given them a diagnosis. Although some of my family feel the same way I do regarding having the information, I wonder how much this has disrupted their lives in some way.

Just recently, I was talking to one of my uncles who informed me that his daughter got the ‘clear’ for my mutated gene. I was very happy to hear it and when I tried to acknowledge that, he interrupted me, “but wait Rebecca, you may still want to talk to her. I don’t know if she tested for all genes. What if there is another gene? Talk to her please.” I took a deep breath and couldn’t help thinking, that once again, I am ‘no good news’ to my family.

And what about the time my aunt approached me about my mutated gene as if I was the original carrier who brought it upon the family? “So, that gene of yours…” she said, trying to initiate a conversation about her risks.

Most of my family don’t even ask me about my cancer lately. Maybe it is helpful for them to turn off the bad news.

My feeling of being a bearer of bad news to my family isn’t just related to my mutated gene though. It has to do with my cancer diagnosis too. I am sure this has scared some of my family, and has made them wonder if they are next. It used to be only the older people in my family getting diagnosed with cancers, except for my great-grandmother who died at the age of 49 from metastatic breast cancer. But I was 32 when I was diagnosed. I was the niece, the daughter, the sister, and the cousin. In a way, I feel I’ve brought a dark cloud over their heads by unintentionally interrupting their denial.

My genetic team at MSKCC warned me about this. They said some of my family relationships might change. I was OK with this and proceeded with genetic testing anyway.

So I guess bad news is just in my genes. I hope that people in my family will view my experience as an opportunity to make educated decisions. And I especially hope I am not being viewed as the one to blame for this mutated gene, because who the hell knows where it came from. This was out of my control, too. I can easily choose to blame my ancestors for this gene, but I won’t. This is my family. This is who we are – mutants, trying to live a life with too much danger, and more bad news than we want to hear.


Do you ever feel that, in a way, you’ve diagnosed your family with your cancer or/and mutated gene?
How have your relationships changed with your family since your diagnosis?

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in Awareness, c World, Coping after cancer, Family, Genetics, Reflections, Support. Bookmark the permalink.

23 Responses to She’s Bad News

  1. Carrie says:

    For me, the experience is opposite. I didn’t diagnose my family, my family diagnosed me. I’ve always known that I was going to get breast cancer. I just thought I’d be older. I remember, as a little girl, seeing my grandmother’s scars and un-reconstructed breasts (those were the days of the radical mastectomy). Every year, it seemed, someone new in my family was diagnosed. It felt like a ticking time-bomb. A matter of time. I was right.
    The feeling of being “the bad news” in your family breaks my heart. It’s so hard to see you think of yourself that way because to me, and to so many people in this community, you are a strong voice, an advocate, a friend, a shoulder to lean on and so much more.
    I know, because of previous posts, that your family’s view may be because of cultural and/or religious upbringing. That doesn’t make it right. I think it’s good you told your family about the gene. I believe knowledge is power. Others (like my mom) believe ignorance is bliss. You can’t please everyone. It’s up to them now to do with the information what they will.
    Sending love.

    • thesmallc says:

      Carrie, thank you for your kind words. Not everyone in my family refuses to be aware. It is interesting how those who don’t want to have that knowledge try very hard to separate themselves from it. And yes, a lot of it has to do with cultural and/or religious upbringing. And fear. I don’t blame them. I can’t say I would behave the same way though.

      Thank you for the reminder that we can’t please everyone.

      I try not to view myself as the bearer of bad news. But sometimes it is a little hard to avoid such thoughts because of my circumstances. But my family (my mother side) was very loving to me. All that love and support helped me not to become a traumatized child. My grandmother kept it all very transparent for me while still managing to have the role of a parent (and a friend) which also contributed to my healthy state of mind. It amazes me how she accomplished such a task considering the society we lived in.

      I appreciate you all so much. Thank you. xo

  2. Rebecca says:

    I can relate – sort of. I don’t have a known breast cancer gene, but I do have celiac disease – which I now know is genetic (we did’t know this 5 years ago) … so it meant telling a lot of my family members that they needed to get tested … not necessarily for the gene, that is their choice, but for the disease itself … cause untreated it can be devastating … In some ways it was easier to deal with because it wasn’t cancer, but it doesn’t give me any answers about my breast cancer … bad luck is all I can say😦

    • thesmallc says:

      Becky, I agree a lot of the times it’s bad luck when it comes to these health issues. The responsibility of having to communicate to our love ones about this unfortunate news can be a little heavy on us. But I agree it is necessary in order to avoid bigger problems down the road. In a way I wish I would have known about my gene prior to my diagnosis.

      Thank you for your comment. Stay well. xo

  3. I tested positive for a deleterious BRCA-2 gene. I felt a responsibility to tell my family. My brother and his two daughters chose to be tested and all three of them have the BRCA-2 problem. What disturbs me is it seems it planted a seed in one of my niece’s brain that she’s doomed to get breast cancer. I wish she wouldn’t think that because it’s not necessarily true. In general, I think knowledge is power and operate from that base, but sometimes I think it’s best not to know. As they say, ignorance is bliss.

    • thesmallc says:

      I felt a responsibility to let my family know too. I am sorry about your niece. I was warned about that too, that some of my family members might start to get paranoid (and maybe even angry). So far I’ve seen some family members act concerned. Others don’t want to talk about it at all. And yes, there is something to be said about not knowing. I miss those days.
      Thank you for your comment, Eileen. xo

  4. Ninasusan says:

    So how do you go about being genetically tested?

    • thesmallc says:

      You can go to a specialized genetic counselor. Perhaps your Oncologist has some recommendations for you. Sometimes the hospital where you’re been treated will offer such services. Once you meet with the genetic team, they will ask a lot of questions about your family health history and your own history. They will then determine what tests to perform. I was lucky that I was able to enter a study at my hospital which allowed me to get tested for all genes (those which have been scientifically identified. Here’s a list of the mutated genes, but please keep in mind, there could be more recent information: Your insurance should be able to cover the cost for those genes that are associated with your cancer but sometimes they will allow further testing. And sometimes they will not cover the cost. Your genetic team should be able to contact your insurance plan to verify. If you want to talk more, you can always email me at I’ll be happy to help in any way that I can.

  5. The Accidental Amazon says:

    Genetic testing is such a thorny subject. I went to a counselor myself. I didn’t have any primary relatives with cancer, and I was an only child, but on my mother’s side, several relatives have had cancer — ovarian, colon, melanoma, and I think a great-aunt with breast cancer — but all over the age of 49 at diagnosis, so this was just outside of the parameters to test for Lynch Syndrome or anything else. A few of my cousins even denied that a few of these cancers had occurred, when I know for a fact they did. Their denial really blew my mind. I can’t imagine the reaction I would have gotten had I been tested and found to have a genetic mutation. I hate that you feel like you yourself are ‘bad news.’ But I think it’s very hard for some families to handle the knowledge of a genetic mutation. You were right to tell your family. It’s certainly not your ‘fault’ or your responsibility that they reacted as they did. Hugs. Kathi

    • thesmallc says:

      Denial is so strong. There are no cancers on my father’s side of the family, only my mother’s side. And you’re right Kathi, it is very hard to receive a diagnosis of a mutated gene, especially without having to go through the associated disease itself. What made it easier for me was the fact that I had already been diagnosed. I can understand the fear some of my family members feel. But I feel strongly about letting them know.

      Thank you for your comment and support. xo

  6. scottx5 says:

    Heart problems run all through my Father’s side of the family and knowing it saved my life. The other “Family Trait” is mental illness that for some reason doesn’t freak us out, but don’t mention it to people outside the family. Fear drives most of this junk and it’s weird that some people are afraid to know when knowing could make the fear manageable.

    We know a family whose daughter sings opera professionally and they are totally the calmest people we know. Your family could start an opera company and share stories of mayhem and tragedy at work every day:-)

    I’m glad you are “different” and open and honest–families need SOMEONE to be that way.

    • thesmallc says:

      Scott, I agree fear is a huge factor. Like you, I find that knowing my risks would be more helpful when taking control over my health. One reason I made the decision to meet my biological father was so that I could ask questions about his family’s health history. Although there is no cancer, heart disease is their main problem (lucky me!).

      An opera company…sounds intriguing, haha! Only a few people in my family are open about health issues. I think that’s going to change because they’ll be forced to know due to the # of cancer cases in my family. As for me, my only job is to communicate what I might consider to be helpful to them.

      I hope things are going well with you.

      • scottx5 says:

        I’m doing OK and have rethought the plan to document the sloppy care I’ve received. Been in contact with an old friend and she suggested the anger I feel each time I describe my experiences is obviously unhealthy and not wise at this time. She’s right that the documenting is not helping close my emotional broken windows nor is it releasing stress, only focusing it on what might turn into a VERY toxic single bad memory instead of a disbursed and maybe each manageable smaller insults to my system. (I’m reading about mythology lately and it’s show itself in my thinking).
        Better to know about things. Even if you decide to hide from them, that too is a decision YOU own and not a victim thing that’s beyond you. In a small way heart problems might help you. I find my cardiologist is a lot more aware of stresses. Read somewhere our nervous system is way more connected to our heart and how it “feels” which is why I feel safer with the cardiologist. My oncologist was judgmental and full of herself too–not helpful to have people like that in your life.
        Sorry you have potential heart problems too Rebecca. One disease is really enough for each of us.

      • thesmallc says:

        Hi Scott!! Good to see you. That’s an interesting perspective you received from your friend. In my case, I’ve found that once I write about a topic, it automatically makes me feel better. I agree that some topics are hard to fully walk away from, especially when they still project themselves into our lives. It’s up to us how much we want to invest on that. I hope you find a healthy way to release all the annoyance, if your current approach isn’t helping you too much.

        On a different note, I had an amazing visit with a therapist yesterday at MSKCC. We mostly talk about survivorship, but this time we focused on my inner child. Basically, I have to stop judging my inner child and appreciate her level of wisdom. A wisdom I have intentionally forgotten about as an adult, to protect her. And me. How I should let my inner child make some decisions at times (hmmm). I am not sure that I will apply this to my life but it is an interesting idea to explore. Anyway, a lot was said and I can’t summarize it all here, but maybe I will write about this one day, because it relates a lot with surviving cancer and dealing with survivorship. It also relates to how much focus we put into certain areas of our lives.

        About my family’s health history, I can’t choose my genes (sigh). But yes, it would be nice not to deal with another problem. cancer is more than enough!

  7. nancyspoint says:

    Hi Rebecca,
    I’m sorry you have felt that pang of “being bad news”. That’s horrible. And of course, so untrue. I’ve never felt quite that way, but I do very often consider myself to be ‘”the reminder”. I even wrote a post about this. I know I remind my entire family of cancer, my mother, loss and heartache. How could I not? Sometimes I wonder if this is why no one really talks about my cancer, it’s just too hard. But then again, I don’t come from a family of big talkers (as you know from my book). And the whole genetic testing thing is so complicated and so personal. I need to write more about this, but even that is hard for me to do. Another wonderful and thought-provoking post. xx

    • thesmallc says:

      Hi Nancy, I remember those details from your book. I also remember the part about when you and your mom received the news about your family BRCA gene. One of many parts of your story I found to be very interesting. I would love to read more about how learning about your family gene, from a family member, made you feel. And how those feelings have evolved over time (when you’re ready). Because they have evolved for me. I recall your post about feeling like a “reminder”. I think many of us can relate to that. Thank you for your kindness. xo

  8. Pingback: Weekly Round Up: All You Need Is Love? | Journeying Beyond Breast Cancer

  9. Mandi says:

    I think you are good news!❤ I am sorry, I can't imagine what this kind of experience is like. There were a lot of questions is I had "the gene" (I don't) coming from a large family everyone was suddenly concerned about risk because my aunt and I were diagnosed a year apart (me being 30). Knowledge is power, but I understand it also creates fear. I am going to have to read up on that gene, I only know the variety I have been tested for and that doesn't seem to be one of them. Hrm.

  10. bethgainer says:

    Hi Rebecca, I’m sorry you feel like bad news, but the reality is that you are great news. I am so glad my path crossed with yours, although I’m not happy how our paths crossed (through breast cancer). Regarding family relationships, this gets a bit messy with a cancer diagnosis. At diagnosis, I called myself an “untouchable” because my parents couldn’t cope with it. It was hard on them, but I had to endure cancer treatments without them by my side. I finally forgave them, knowing they couldn’t cope. My brother was great; however, now it feels like my family wants to forget I ever have had cancer. It’s never mentioned.

    Thank you for being so open about your life. I appreciate the person you are.

    • thesmallc says:

      Thank you for your kindness, Beth. I can understand why your parents couldn’t cope with your diagnosis. It must be so difficult for any parent to see his/her child go through pain and not be able to change it. It was kind of you to understand their position.

      I have a similar situation when it comes to my family not wanting to talk about my cancer — like wanting to pretend it never happened (not all). And some even continue to act with the same level of toxicity that there was before my diagnosis, which can mean so many different things (still working on that post on ’emotional cancers’).

      I am also very glad my path crossed with yours.

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