Second time (doesn’t get easier)

06May10

I haven’t had much to share lately. I did follow up with the genetic counselor like I promised. I was disappointed to find out that she really did just forget about me. And I guess out of her guilt upon receiving my voice mail, she continued to ignore me until I found someone else at the centre to track her down. So I was doubly disappointed at her lack of professionalism.

She did confirmed that I am on the waiting list for the high-risk clinic. I may get scheduled for summer or later. But I have ran across some notes that I may not be eligible for MRIs because I have not tested positive for a BRCA mutation. That makes me really rethink testing. I have seen more and more reports coming out that mammograms really don’t help in early detection for young women and especially those with dense breasts. I fit into the first category and I am just guessing I would fall into the second one too, because of my small breast size. If that wasn’t enough, there are also reports that young women with BRCA increase their risk of cancer when getting mammograms. So is screening right now even worth it?

Well to answer that I have to return to the big question I had for the counselor: how could genetic testing affect an immigration application to Canada? Her response was that no one in the centre has faced this question before. They must put in a request to an outside resource to answer this and they have to get approval first to do so. And she is still waiting for approval. I asked for a time estimate and she couldn’t give me anything except that we’re talking at least months (if not years?!). I don’t have much faith in her anymore because of her poor communication with me. I’ve looked at the laws myself and it would seem that it *should* be a non-issue. It’s clearly not a public threat (yes, good news: cancer is not contagious!), it is only a risk and not a medical condition, and the suggested screening is not much of a drain on medical resources compared to other the other diseases out there. Oh, and one more thing: Canada is equipped with the necessary medical resources to manage the screening (and the cancer, if it was to manifest).

So maybe I should just put peace of mind and screening effectiveness above my fears of genetic discrimination? Maybe I just fight that genetic discrimination battle if it happens (surely there would be lawyers out there excited over a case like this)?

So, for goodness sakes, what is stopping me from running and skipping to the centre to get tested? I have waited this long already. I feel (relatively) calm and collected about the matter. And I was swearing up and down four months ago that I really wanted to get tested. I should be ready, right?

Um….actually, maybe not. What if it is positive? Am I ready to go through all the shock and trauma, again? The first time hearing about BRCA in my family hit me hard. I doubt that the second time is going to be easy, because this time it’s about me.

In fact, what is motivating me to write tonight is not really a spur-of-the-moment insight. It’s because I got a phone call from my mother today. She’s a week and half out of her mastectomy. The pathology report is back and it’s not as good as we were hoping. Although the margins were clean, the lymph node involvement was extensive and her cancer did not respond well to the chemotherapy.

I know my mother didn’t want to dwell on the negatives and what if’s of the report. She told me specifically she doesn’t want to make the news into doom and gloom. She doesn’t plan on telling others the detailed results. She wants to focus on the upside of things. But she’s feeling down today about it. And so am I.

Today has been like re-living the day that she first told me she had cancer. I can’t help but cry after hanging up the phone. I’ve lost something today, and no “looking on the bright side” can help bring that back. Yes, she could beat this disease yet, but it still doesn’t erase what has already happened.

I know news like this makes people itch to say something positive. But right now I can’t really stand to hear it. I want a moment of honesty. The likelihood of my mother being cured of cancer is not so good. And that is how it is. There is not much else I can think of to say right now.

Advertisements


4 Responses to “Second time (doesn’t get easier)”

  1. 1 Janine

    I’m sorry to hear about your mom. I won’t try and suger coat things. It’s fucking hard. When they finally figured out what was wrong with my mom (bile duct cancer), they said that no one had ever lived more than two years with it in the advanced stage. She made it a year and a half. I had just moved half way across the country and would only get a few more visits with her. I hope your mom has many more years, but enjoy the time you have with her. Carry a camera at all times! Take video. It will be really hard to look at the pictures at first, but you will be happy to have them later. Go and share new adventures together and live like there is going to be a future instead of an end, because we all deserve some fun in the end.

  2. 2 alyssum

    Thanks for the comforting words, Janine. I am sorry that you have had to go through this as well.

    Your comment reminds me that I am very thankful of the special relationship I have with my mother right now. We weren’t that close when I was younger, and I have gotten to know her so much better now. I am definitely happy for this.

    I also have been reading up on some testimonials of women who are alive and well several years after a Stage III diagnosis. And this is helping me rebuild my spirits.

  3. 3 Janine

    My sister-in-law was stage 3 and is about 5 years out now, ned. She’s doing great.

  4. it seems as if my family has been forgotten too. my oma did the brca blood draw in january 2009. we have not been called with our results.

    i have done a bit of hounding to get her a follow-up appointment…have been told by another genetics clinic where the blood was shipped to get analyzed that the results have been done and the results were shipped back already 6 months ago. (i have a different genetics counselor than my grandma in a different city and had my counselor do some leg work for me to find out what is going on.)

    talk about b.s.! i haven’t had the mental strength to fully pursue the issue as i already opted and had my pbm this past april all my energies needed to be put on preparing myself for the surgery and recover. i am please to say i am doing fantastic. my grandma has not actively pursued it either because she is almost in her 80’s, still quite confused about the whole brca thing and just did a major move from city to small community.

    i will begin pressing the issue again this week and have her call the clinic to insist on an appointment to get the results and better counseling for her since it seems that they did not counsel her before hand but just took her blood.

    i expected better care and interest in our family history then what we have received. we keep getting the same excuses that her genetic counselors keep getting pregnant and going on maternity leave. so far my oma has had 3 counselor. the first 2 have gotten pregnant and apparently the excuse is that there is a lot of back log now that this “new” counselor needs to get caught up on.

    i suppose if it appears that we are low priority that it is a strong possibility that no brca mutation has been found. yeah…i’m gonna go with that for now.

    anyways, thanks for your blog and sharing your experience. your lay out and choice of colors is also very easy and soothing on the eyes.

    rach


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s


%d bloggers like this: