Thursday, July 15, 2010

Adios Ovaries

The countdown is on. Surgery to remove my ovaries and plunge me into instant menopause is scheduled for August 5th. To say that I am not looking forward to this is an understatement. I am not looking forward to surgery. I am not looking forward to the recovery. I am not looking forward to getting totally out of shape and fighting my way back to my current level of fitness. And I am NOT looking forward to menopause.

My fear of menopause is tinged with a level of irony. My first period arrived on my 12th birthday. I was appalled that I would need to endure this nuisance monthly for the next 30 to 40 years. Now, while I do not relish my monthly period, I am more appalled by the stage of life that the lack of this event portends. There is no way around it. Menopause means dealing with the issues of aging.

Dr. Karen Hurley at the FORCE conference a few weeks ago talked about why preventive surgery decisions for those of us at high risk are so emotionally charged. She said that for many of us this is the first time that we must face our own mortality. I think she is right. For me, as for many of us, removing my ovaries is much more than giving up fertility, although that is clearly an important aspect of the issue. Rather, it involves squarely facing issues of aging and acknowledging our mortality. We must begin worry about our bone and heart health because the estrogen that has protected us for the first half of our life will be gone.

And then there are those lovely menopause symptoms to look forward to: hot flashes, night sweats, sleep disturbances, sexual functioning issues, mood swings and others. (My husband's biggest fear is that I will become a raging *itch with no libido.) Of course we may not have all of these symptoms and the severity of the issue differs from woman to woman, but few make this transition without a few bumps in the road.

My BRCA mutation comes from my mother's side of the family. None of the women on this side of the family have gone through natural menopause, at least not in the past four generations, which is as far back as our collective memory goes. My mother's early menopause was caused by her breast cancer treatment when she was forty-three. All of the other women on this side of the family had total hysterectomies, which included removing their ovaries, in their thirties or forties.

All of these women have dealt with osteoporosis, which leads me to worry a great deal about my bones. By the time she was in her sixties, my great aunt's spine had degenerated to the point that she was in constant pain. Fortunately drugs available now can prevent bone loss and can actually increase bone density. These drugs were not available to my grandmother and her sister.

The key to keeping bones healthy is to know your bone mineral density and to intervene with these bone building drugs before the damage becomes severe. This means that post menopausal women (and older men) need to have regular bone mineral density tests to monitor bone health. For most people, the bone mineral density test involves a radiological scan of the lower spine and a separate scan of the hip. It is painless and takes only a few minutes. The reason the spine and hip are used for these scan is that people with osteoporosis have a higher likelihood of breaking these bones and because these bones are a good indicator of what is going on with the rest of the bones in the body.

I went this week for my first bone mineral density test because I will be entering menopause in few short weeks. I have to admit that thus far in my life I have not been good about taking calcium supplements and I am allergic to dairy products so I was a bit worried that I would not be starting from a good baseline point.

After the scan, the technician gave me a copy of the report that she sent to my doctor. The report contains bone mineral density scores for a number of locations on the bones of each scan. These numbers are then averaged into an overall score known as a T-score. Because peak bone mineral density occurs around age thirty, the T-score compares your bone mineral density with that of the average thirty year old. Here is a reference for the meaning of the T-score:
  • A T-score between +1 and -1 is normal bone density.
  • A T-score between -1 and -2.5 indicates low bone density or osteopenia.
  • A T-score of -2.5 or lower is a diagnosis of osteoporosis.
Fortunately all of my bone mineral density scores were above 0, which puts me squarely in the normal range, and the overall T-score for my spine was actually greater than 1, which means my spine is a bit of an overachiever for my age. What I hope is that this means I won't start getting shorter any time soon!

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  1. Joi,
    Good luck on your upcoming surgery! (That is the tentative date of my exchange surgery! Husband's business changed insurance, so am just waiting on preauth...again!)

    Thank you for posting this information. The bone scan is something I will make sure my doctors look at for me when the time comes. There are so many changes that occur when having our ovaries removed...Because I lost my Mom to ovarian cancer I KNOW I need to have mine removed and I really don't mind the fact of no periods. However, I do worry about how it may affect my emotional state and heart/bone health as well as all of the other things you mentioned. The doctors don't really want to do mine until I'm 35, so I still have 5 years, but it is still something that I know is going to happen and I want to have all of the information possible to help ease the transition.

    I apologize for rambling about me; these are just things that are on my mind a lot. I appreciate you sharing and helping the BRCA community!

    Will be thinking of you on Aug 5th!

  2. Hey Joi, I was planning on talking to Dr. Karlan about the bone density scan at my next appointment, so thanks for bringing it up.

    I do know how you're feeling about your upcoming ooph - You have pretty much the same worries and fears that most of us have before hand. As you said, it affects everyone differently. Some people have very hard time with it, and others sail through. For me, I was lucky enough to sail through. I'm no more of a b*tch now than I was before the surgery - I mean, ya know, we all have off days! lol!

    The only symptom I have are occasional hot flashes, and those only last for a minute or two at most. The instant menopause I was terrified of just hasn't been a big deal for me. I hope it'll be the same for you.

    A friend of mine recently had the hyst & ooph, and it was very hard on her. She's 31, and I was a few days away from 39. She asked her doctor why she was having such a difficult time, and she was told it had to do with being a bit on the younger side, and her ovaries were plump with estrogen. So for her, it was this huge estrogen dump that left her a bit haywire for a little bit. Maybe for me it was easier because I'm 8 years older than her - and probably with less estrogen to begin with.

    Anyway, sorry for the ramble.. But I do think age has a little bit to do with it. I think it's a little harder for those who are on the younger side..

    Best of luck, and I hope it all goes smoothly and you have an easy time of it.


  3. Thanks Tracy and Teri!

    Tracy, I hope your exchange goes smoothly. You will be surprised how much easier it is than the first surgery. And it is go great to get the rocks, I mean expanders, off your chest (pun fully intended). I am so sorry that you lost your mom to ovarian cancer, what a nasty disease. Having seen friends fight this disease is why I am having preventive surgery, and it will be the reason you do too. Just keep in mind that if you have not had breast cancer there is no reason to avoid hormone use, especially if you remove your ovaries around age 35 as you currently plan to do. I do plan to take some estrogen to ease the transition and will probably blog about that also.

    Teri, you are the best! I am glad menopause so far has been relatively kind to you and yes, I hope it is for me too. I think estrogen levels vary greatly from woman to woman also and probably explain why some have an easier time of the transition to surgical menopause. For me, my periods still arrive like clockwork and my skin still breaks out the week of my period. Giving up the "teenage complexion" I have had for 20+ years is actually something I am looking forward to!


  4. Hi Joi,
    I am glad you wrote about the bone density test. I will look into that as well. My exchange surgery is a few days before your surgery but I plan to have my hysterectomy in October. Menopausal symptoms are what I fear the most. I wish you well and I thank you for your blog.

  5. Thanks Marlene,

    I hope your exchange surgery goes smoothly. It is a relatively easy recovery except for the no lifting restriction. And I will let you know how my menopause symptoms progress.

    Take care,

  6. Joi, I'm so sorry you are facing all this. I'm going to include a link to the book on my own blog & get it into the resource page. I've been doing a lot of research since my last post to update myself on nutrition and treatment for bone loss, so hopefully, I'll get that post out in a few days.

    Good luck with everything. Hope all goes well.


  7. Thanks so much Kathi! Osteoporosis and heart disease risk are two of the reasons I have waited until a bit closer to menopause to have this surgery. I am fortunate to be BRCA2 positive, which gave me a little breathing room to take all risks into account.


  8. Hi Joi,

    Just wanted to send you positive thoughts and wishes for the 5th! I had my surgery 18 months ago and have no issues or complaints. I'm just glad to be done with it, and I think you will be too. The anticipation and fears about the future can be the worst part of the journey, and I hope that you breeze through it with no problems. See you soon!

  9. Thanks Sandy,

    I feel relatively prepared but you are right, the fear of the unknown is what causes the largest amount of stress. I will let you know how things go.