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Saturday, May 5, 2012

What's next...

So now that I have finished radiation, I met with my oncologist to decide what is next.  My breast cancer is stimulated by estrogen, so I have to take medication for the next 5 years to suppress the estrogen in my body.  First off, 90% of estrogen is made by the ovaries and the other 10% comes from other sources such as fat. There are 2 choices: Tamoxifen (for premenopausal women) Blocks estrogen from working on breast tissue and also increases the risk for blood clots.  Arimidex(post menopausal women) blocks estrogen that is made in places other than the ovaries because the ovaries aren't making estrogen anymore. In a lot of cases chemo puts women into menopause, and I was kind of hoping this was the case for me so it would be done, and I could have my ovaries removed without anymore symptoms.  However, my ovaries must be extra hearty, and have started to work again:(. Lucky me! So a normal pre-menopausal girl would start Tamoxifen.  But.....I am anything but normal.  I got another genetic gift from my father called Factor V Leiden, and it increases my risk for blood clots.  So Tamoxifen wouldnt be that great for me to take.  My oncologist recommended that I start Lupron which suppresses ovarian function,  Arimidex for the estrogen, and Zometa which strengthens bones.  There are some studies that show this combination of drugs can decrease the chances of a breast cancer recurrence.  

My big dilemma is what to do with my ovaries.  Early menopause is associated with a lot of problems such as bone loss, weight gain, heart disease, earlier death, etc. Because the BRCA mutation causes ovarian cancer too, I have been advised to have them removed by age 40.  I feel like I have to make a choice with no good options.  1-do nothing and have a breast cancer recurrence or get ovarian cancer. 2-tamoxifen - get a blood clot 3-ovaries out with Arimidex and early menopause 4- Lupron (lots of nasty side effects) to suppress ovarian function and Arimidex.  My oncologist says that no matter what I do I will be experiencing early menopause symptoms and recommends that I get my ovaries removed.  Also, there is no good screening for ovarian cancer, and it is horrible and is rarely cured.   I have decided I will follow his advice and get it done shortly after my reconstruction.  

I found out this last week that 2 members of my mothers family have tested negative for the BRCA2 mutation.  I am so happy for them because I don't want anyone to worry about getting, or to get breast cancer.  But at the same time it makes me feel a little alone.  I have always felt a little like the odd one out, not because of the way anyone has treated me, but because of my unique family situation.  I was born to parents that were older and have both passed away.  I am my mothers only child and my closest half sibling is 15 years older than me.  My mothers family all lived in the same small town so all of my cousins were raised together except for me.  My half brothers and sister are in a different phase of life than me, and are all grandparents now.  I guess what I'm trying to say is, I don't want to be alone in this anymore.  (Im sure this sounds terribly selfish to whoever is reading this, but it is what I am feeling)  I have been thinking a lot about my mother and my grandmother and also about the other ancestors that have probably had breast or ovarian cancer, and would like to learn more about them.  I would like to figure out beyond my maternal grandmother who this came from.  I feel a strong connection to these ancestors, but especially to my grandmother.    Another interesting thing about my mothers family is that there are not very many girls.  I think this is why it has taken a long time to figure out that we carry the BRCA2 gene mutation.  Both my mother and I are only daughters.  My grandmother had sisters, but one died in a car accident at an early age,and the other one lived until her 80s or 90s,  never had breast cancer, and also did not have any children.  She probably didn't carry the gene mutation.  So, I have a family history of breast cancer, but it's nothing that really stands out, and I think it has been because of the lack of girls.  I feel very strongly about my maternal cousins getting tested.  That knowledge is the only thing that would have saved me from this nightmare.  if I would have known, I would have started screening in my 20's and could have found my cancer a lot sooner. (Normally, women start getting mammograms when they turn 50, 40 with a family history.  Unfortunately,  I didn't make it to that age without getting cancer) I have met some other people that carry this gene in their families, and it is an emotional issue.  Some people prefer not to know.  After going through this ordeal, it does not make any sense to me not to find out.  If you carry the gene, there are some options available to prevent cancer and all that goes with it.  Basically, if you have the gene, you are just waiting to get cancer.  Not knowing about it doesn't change whether you have it or not. Knowledge is power!  (Ok, I'll get off the soapbox for now:)

My reconstruction is scheduled for June 18th.  It is nice to have a date, and I am counting down the days and minutesuntil these expanders are out of me!  I hope to have a month and a half to get over the radiation without too much excitement before the big surgey.  I am also looking forward to having a flat stomach!

I have had a bit of a complex about looking like a man lately, and ask Paul daily for reassurance that I look like a woman.  I have also overheard little kids at the store asking their parents if I am a boy or girl.  An experience I had last night didn't help at all.   We were having dinner at the Cheesecake Factory and the waiter said, "excuse me sir, but what would you like to drink?".  I just sat there for a minute and wanted to say something to make him feel terrible.   I held my tongue and he realized his mistake and apologized profusely.  I wanted to stiff him on the tip, but since we were in a large group, it was already included:( 

Thanks again to everyone for all of your support.  I couldn't have made it through this without your help.  I'll write again in a few weeks with an update on how things are going with the new drugs.  Especially I'll post pictures if I start to grow a mustache from lack of estrogen.  Hahaha knock on wood!

Nancy