Monday, 23 March 2009

brca 1 +

Back in November, I was told that I carried a mutated brca 1 gene.  I've only written twice on the blog about it, here and here

There are a couple of reasons for not blogging about it, most of them would go back to just one reason/excuse.  That being, I don't really want to acknowledge that I carry the mutated gene.   Also, I don't want to scare any of my blog readers away.  It's not that I want to pretend I'm perfect, because I'm anything but that.  It's been nice to have a place away from my struggles.  I do think however, that sometimes our struggles can help others who are struggling and so that is why I decided to post about it today.  I would love to be able to talk to someone else going through a similar journey to mine, because I'm not finding it very easy at all. 

I had hoped that by getting the genetic testing done, that I'd be able to stop having all the regular testing (blood tests, pap smears, ultrasounds, mammograms) and that if the worst happened and I carried the gene, it would be better to know than not knowing at all.  I'm not sure if that is true now.  Well, I know it is true, but I still am struggling to come to terms with it all!

You see, I've now been to two different specialists, a breast surgeon and a gynaeologist, and both of them said the same thing.  They both recommended prophylactic mastectomy and a oophorectomy/or hysterectomy.  What does this mean to me, a woman?!  It's scary stuff. 

With the mastectomy's I would get reconstruction straight away, which basically means I would get a boob job for free (thanks Mr. Key!).  The only thing is, is that I'm rather attached to these boob's of mine, and can't imagine what it would be like to get some new ones.  It may not make sense, if you have breast's you don't much like, but mine are okay.

Also, if I get the oophorectomy or have a hysterectomy that means there would be no chance of me ever expanding my family.  Not that, I want to do that or anything.  It's just at the back of my head there somewhere, that if I wanted to, I could, you know...

So, my head has been in the sand.  I haven't wanted to think about it at all.  And then I began reading the book, The Friday Night Knitting Club, a couple of weeks ago.  All I knew about the book was from reading the blurb, and I had no idea what a rollercoaster ride reading the book would be.  It was just a novel, when I began reading, but that changed over the course of the book, when the main character is diagnosed with stage 3 ovarian cancer.  I felt like someone out there really had it in for me, like if I wasn't going to get my head out of the sand by myself, then they'd do it for me... 

I've got myself a group of really neat friends you know who you are who've been supporting me through this process of decision, and I have at times wished that they could make the decision for me, or that Mr Sew-Funky would, or that anyone would really.  But, I know that it truly is my decision.  I'm just a little scared, but I imagine that actually being diagnosed with cancer would be even scarier.  I suppose I am luckier because I have a chance to do something about it before the scariest happens and I'm diagnosed with cancer.  I'm sorry if I am using silly OTT language here.

I had thought that a decision to have an oophorectomy would be easy, because I saw my favourite grandma and aunty die from ovarian cancer, but none of these decisions are easy.

Sometimes, life get's hard.


Jacqui said...

That's tough choices for sure, but as you say, at least you are in the situation where you can make them and they aren't made for you. I had to go for a CT scan a couple weeks ago because my adrenal gland is doing some funky (likely inherited) stuff and I was kept waiting and I was feeling sorry for myself with this wait and the worry and then they wheeled the previous patient out and she was on a stretcher with a neck brace and a breathing tube and I thought "ok, I'm still bored and worried and feel sorry for myself but it's kind of in perspective now - I'm here by choice and with something that is not life-threatening yet and is controllable with drugs" Your worries are on another scale altogether than mine, but the choice is the thing, whatever you decide to do. Choice is power. said...

Ok at the risk of alot of people jumping on me for this. I will share, Mom died at age 56 of ovairan cancer. Grandma on her side died of breast cancer (age 75) My Aunt her sister died of breast cancer age 70. I do not go for regular check ups have not had a pap in 9 years, and am 52 and have not had a mamogram ever. My choice, I live my life the way I want and think God will wach over me and take me when he is ready. My thought anyway

PaisleyJade said...

Wow - what a full on situation for you!!! Praying for God's awesome wisdom for you in this situation! Keep looking up as there your hope lies. xxxxxK

Mary Nanna said...

Oh that's tough. No easy answers, just scary realities to face.

Thinking of you as you weigh up your options.

highwaycottage said...

Wow, scary for you. I can appreciate how dificult the decision will be for you. I'm not particulary attached to my boobs, so a free boob job would be good, and my ovaries have given me nothing but grief (oh, and 4 babies), but mainly grief since I was 18, so they could go too. But when you health is really at risk it's a different decision. I do know a couple of people in similar positions as yourself, one had the boobs done, one hasn't yet, but is going to, (you just have to hope it's not too late).

I hope you can come to some resolution, and that you find peace with your decision. Kia Kaha.

Anonymous said...

Hey you. Your cuz here. I feel for you so much. While we waited for my genetic test results to come back, hubby and I debated and weighed up many options. I did some research (on the net, nothing too hardcore) but more specifically I watched Mum fight a nasty battle. I guess because of her, it was clear to me. I know that if she could have exchanged her boobs or ovaries (which were great and useful too!) for another day with her family she would have. For her that perpsective only came far too late.
For us, we agonised and decided we'd do it all, any bit of help that could keep me here and doing what I want to do raising the kids and loving my man. I still can't believe my results weren't positive. I just assumed I'd have the mutation too. Not a day passes that I am not grateful that I don't. Nonetheless, I can only imagine what your daily reality is like. It's a terrifying and overwhelming choice. None of what you said is OTT. There are many aspects to the decisions you face. I hope you find some answers that work for you and your family.
Please understand that my emotive post comes from a good place, I am very worried for you. And it would be terrible to risk more of the family when surgery might help prevent that. We are so lucky to be born at a time when they at least can provide some kind of proactive help.
Your worried cuz. R

Baba said...

So sorry you are faced with such a decision. I'll be praying for you. I tend to agree with the doctors if it is a genetic trait. Prevention is the course to follow.

Belinda Manning & David Bowman said...

One of the beautiful things about this technology it that it provides us with opportunity to communicate with one another and to touch each others lives no matter where we are in the world. And no matter who we are. There are no OTT. It's all fair game. It's all who we are. I can't imagine your level of fear, or that of Mr. sew-funky. I am sad that all i can do is to share my thoughts, hope to connect with you through the power of prayer (no matter who your God is) and hope that it brings you at least a moment of comfort and peace. I know that whatever decision you make, it will be the right one for you. I want you to also know that i will continue to hold a place for you in my heart n\and a prayer for you on my lips throughout your journey.

i am very mary said...

Having had both cervical cancer and breast cancer, I can positively affirm that the grass is still quite green on the other side and, despite the very scary decisions you face, it is truly better to be well than to constantly live in fear. I'd love to share my story with you if you'd like to add another gal to your support group:)


Jodz said...

Hey girlfriend. I can not imagine what it is like having to make such a huge decision. You know me and know I am not PC so I am going to tell you what to do....have the op. I want you around healthy for many more years to come. But hey! Whatever you decide you know i will be here for you.

ericag said...

Hi D, coming from the perspective of posibly having to face the same decisions as you one day, and looking at my empty sock breast feeding boobs, I say GO FOR THE FREE BOOBS!!! I would in a heart beat, but then, you are right - yours are good boobs - you certainly won the stakes in the family jackpot their.

Thinking of you, and understanding how hard it would be to choose. I guess at the end of the day you probably deep down already know what you will do. xx E from Aus

Dorothy Noreen Hunter-Talbot said...

Reading your post brought tears to my eyes and an immense sense of awe that with all your problems you have continued to share your outstanding talent with us on your blog. It makes my health problems and issues pale in comparison.

I hope that this doesn't offend anyone but as I was reading about the decision you have to make, for some reason the Erin Brockivich movie jumped into my head and her replying that you never have to worry about maxi pads or under wire bras again, when the other character found out she would have to have a hysterectomy and mastectomy and would she really still be a women.

I will keep you and your family in my prayers as you go through this process and I know that you will make the right decision.

On a selfish note I hope to see you blogging for many many years to come because your talent is so outstanding that I would miss not being able to share in it.

Mr Sew Funky said...

Old boobs, new boobs, I'll always love your boobs.

Anonymous said...

Mr. Sew Funky: awwwww. Keep up that support, that's the only way you guys will get through this.

Hi- I found out I was BRCA1+ a year before you (sis had breast cancer young, that's my only family history of the disease). I had a total hysterectomy last March and am having trouble "pulling the trigger" on the mastectomy, even though intellectually I know it's what I want to do. Doctors have never said "we recommend you have prophy mastectomy" in all this time, and I don't think any ever will. They seem like they want to say it, but they don't want to be responsible for the fallout if you regret it in the end. "It's a personal decision"--if I hear that one more time in relation to these decisions I will hurt someone.

The decision to have prophylactic surgery is a huge one. It's a little easier with the ovaries, because ovarian cancer is such a killer. But still not easy. Severe menopause overnight at age 42? 10+ extra years without hormones? You're exchanging one evil for another and you have to be okay with that, and bet that the evils you're getting (emotional stress, grief, possible complications, change in body image, loss of libido, loos of hair, loss of memory, etc.) are going to make your life better than it would be with the evils you're (hopefully) avoiding. As with anything in life, there are no guarantees, and prophylactic surgeries do not reduce risk to zero. For either disease. (Remaining risk after ooph is about 5%, remaining risk after mastect is 1-5%).

If joking about getting new boobs helps you, then go for it. But please don't let other people minimize the decision by talking about it that way... you will be losing your wholeness, your comfort with your body, nipple sensation (which may have an impact on your sex life), and you'll be facing multiple surgeries and possibly an outcome you aren't happy with. Take all that in, put it next to your fear of cancer, and then make your decision. These decisions are all about quality of life--surveillance is a legitimate choice--so try to envision which scenario is going to make you less crazy in the long run.

I wish you much luck in your decision. If you would like support from a strong group of strong women who are going through exactly the same thing, please visit . There's a ton of info there, as well as a message board, and their annual conference is coming up in May--a great place to learn more about your options and cutting-edge research related to them.

Best of luck (from one BRCA+ crafter to another).


CurlyPops said...

I've only just read your post now. What a decision to make. I can't imagine how tough things must be at the moment.
I hope you can find the right answer in your heart.
Cam xx

thelittlesparrow said...

Hi D - you are not alone in this. Love you heaps. Your post has inspired me to be more pro-active in my own care. Thanks for that. I even found myself a GP after 3 years! And had hideous tests done. All as a result of reading your post.
Love you heaps. Hope you find peace and clarity.
xxxxxxxxx Rhubarb

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