Genetic Counseling

Today was the long awaited genetic counseling appointment. It was via teleconference. It was a long phone call with a lot of information with good and bad news. It is now several hours later and I am feeling overwhelmed. (Ignore the links unless you want to know precisely what I am talking about.)

First, the ovarian cancer that killed my mom was not genetic. That is to say that it is not the same ovarian cancer that takes out generations of women. Gilda Radner is an example of this type of cancer. Her grandmother, an aunt, a cousin and herself died from this type of mutation. (There are a lot of fancy words here that I am just wrapping my own brain around so I will try to keep it simple.) Gilda Radner and the women in her family would have been born with the mutation and the chances of getting it are, in some cases, close to 100%. This is the same cancer that Angelina Jolie is trying to prevent.

Thank god I do not have that.

But.

Because my mom had ovarian cancer I am at a greater risk than the general population. If you are female your chances are about 1%. Mine are about 7%. The genetic counselor thinks I might want to consider have a radical hysterectomy instead of a partial hysterectomy. That means I will have my ovaries removed and will instantly go into menopause. So now I have to decide. My chances of getting ovarian cancer are small but if I do it will very likely be fatal. Most women die within 5 years of diagnosis. It is a very aggressive cancer. I sat by my mom as ovarian cancer slithered its way through her body and eventually closed off her stomach so she could not even swallow her own saliva.  If you knew today that there was a 7% chance that you would get hit by a bus would you plan your day differently?

I am hesitant for many reasons. Like I said, instant menopause. That will mean being on hormones, weight gain, possible depression (ha!), sexual health problems…. It is not a surgery to be taken lightly. Of course I have already laid aside the issues of having children. I will gladly wait for grandbabies! But maybe I am being too concerned and should just live my life on the 93% chance that I won’t get it.

I do not need to make a decision today but I do have to make one. You all have been my sounding board and I would love to hear your opinions.

The second part of the phone call was about breast cancer. My grandma had it at 48 (I had previously thought it was 40.) All of her sisters had breast cancer. I will have to keep going for regular yearly mammograms and breast ultrasounds. Again, I am at a greater risk than the general population but like the ovarian cancer I was not born with the mutation.  I had a breast biopsy in June and will go for another in December and will be able to make an informed decision then about whether or not I should keep the two tennis balls in tube socks.*

*my breasts 🙂

12 thoughts on “Genetic Counseling

  1. Well as you might already know from my blog I had a full hysterectomy in June 2010 aged 47. I didn’t have any risk factors, just very difficult periods. Looking back I don’t actually know why the gynaecologist decided he needed to remove my ovaries, I didn’t think to ask as he promised I would feel like a new woman. Yes I gained weight, the hormones didn’t suit me and now the patches I was prescribed after a private consultation are no longer available. In fact I haven’t had them for about a year, and the menopause symptoms have subsided.
    For me the issues were very much mental. The feeling of no longer being a woman. I thought having had 5 kids I wouldn’t care, but when I read stories about women carrying a baby for their daughter / sister / friend I mourn not being able to.
    It isn’t an easy decision. If you bear in mind that the menopause is inevitable, then the only decision is for you to decide WHEN it should happen. xxx

  2. I’m not sure but I think if I had watched my mother die of ovarian cancer I sure wouldn’t want to get it myself. You are going to go into menopause anyway and it doesn’t have to be the nightmare you are envisioning it to be. I thought it would be horrible but here I am enjoying my life and having almost no trouble at all. So don’t fear menopause so much as it’s a natural part of aging. But then maybe it’s different for women who have to have their ovaries removed than just a normal menopause? Either way can you live your life happy with your chance of 7% or would you be happier with less chance of cancer? No one can really tell you what to do only what they would do in your shoes. You are the only one who knows what is best for you.
    I’m glad to hear you don’t have the gene for those cancers. That must be a relief.

  3. Birdie, you are talking about HRT (hormone replacement therapy) for menopause? See, I started my menopause almost 12 years ago and decided I did not want to go that route, so I just let things happen naturally. I have not had any hot flashes and thankfully had no problems but every woman is different in how she decides to handle this part of life and for what reasons. I will keep you in my prayers, and am sending you warm hugs. Cancer of any type is not something to take lightly.

  4. How old are you Birdie? I’m thinking around 44? If you’re in your middle 40’s I’d probably go ahead and have it all removed, because you’re getting dangerously close to menopause anyway at this age. Here in the states they say that just having your uterus removed will throw you into menopause in less than three years (even with keeping the ovaries). In my mind, reducing the risk of cancer is probably more important than doing 3 years of horror-mones or having menopause slightly early. However, these are tricky decisions and you must make your own choice. At least you won’t have to deal with debilitating periods anymore.

    I’m having my own issues at age 42, mainly with periods that start instantly and are very heavy. I no longer have to carry extra clothes for my four year old son who is now fully potty trained…but have my bag stuffed with extras for ME, because if my period starts I’ll bleed through my clothes in two minutes flat. Such is life in middle age. Hell, if a cop pulls me over and wants to check my purse, he’ll find my panties in there…I don’t know if I’ll die from mortification or laugh!

  5. I am very happy to hear that you don’t have those genes. As for your decision- that has to be up to you. There are so many unknowns in both instances but you will ponder and consult and the decision you make will be right for you.

  6. I had one ovary removed when I was in my early forties, thought to be cancerous but wasn’t thank goodness, now the other one has quit. It is up to you but as the other ladies pointed out menopause is inevitable and although it can be difficult at times, hot flashes and brain fog, I also like it too. It’s strange but I not longer feel like just a sexual being. I still like sex but when men look at me, which is rarely, I don’t feel that it’s about sex. I feel like a human being more. I don’t think I’m describing it well but it’s a good feeling. I’m also not as nice which I like. I’m more willing to speak my mind and I don’t have the compulsion to be liked as much as I did when I was younger. Not sure if that’s age or menopause or both. But it is freeing. Post menopausal woman rock.

  7. You never get a break on the easy decision front do you?
    I am so glad those genes are absent, but the decision still isn’t easy. I suspect I would take the risk, but be vigilant about check-ups. Which is because I avoid surgery if at all possible. This is another decision that only you can/should make for yourself though.

  8. I’m with Whisk. I don’t have much experience in this realm, though it reminds me of when we decided to make the babe, it’s playing the genetic lottery and it’s all percentages, we all have different thresholds for risk and comfort and my husband and I were okay with our chances of babes drawing Bipolar or whatever else, and thus a Baby Bananaface was brought into existence. It’s a big choice, math is a factor, but so is heart. You’ll know when you know 🙂 We’re here no matter what 🙂

  9. Yay for not having the genes! You are taking a very proactive approach about your health, which I admire. I’m literally the opposite, which is totally chicken shit and will probably mean the death of me. Or I’ll live to be 100. You never know.
    We each have to paddle our own canoe.
    That being said, I’m having the worst period ever and contemplated ripping my own ovaries out by hand, so there’s that.
    All the worrying about the cancer is probably going to give us both heart attacks. Heart attacks and strokes are responsible for as many deaths as cancer is.
    My point is that eventually we all die. Of something. We really have no control. You could get hit by a bus walking across the street after getting your ovaries out. You never know! If it makes you feel better about living, then do it. Even if it makes sense to no one else because it’s YOUR life to live.
    Heady stuff for 7:30 a.m. And a half a cup of coffee! Xo

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