I just got of the phone a while ago, setting up my pre-op appointments with my general surgeon and my plastic surgeon for my PBM. For some reason, my general surgeon, who specializes in breast surgery by the way, all of a sudden wants me to get a second opinion for ovarian cancer...WTF?
While I had my consultation with her a few weeks back, I clearly explained to her that one month after testing positive for the BRCA2 gene, in addition to having a breast MRI, I went to a gynecologist/Oncologist to have my ovaries screened for cancer as well. The oncologist did an ultrasound on my ovaries and did not find one cyst, fibroid, lump on either ovary...I also had a CA-125 blood test done, which is a simple blood test that tests for ovarian cancer. My level was 24, which is within normal range. Anything below 35 is normal. The gyno/oncologist wants me to come back every 6 months to have these same procedures done, to screen my ovaries...I have an appointment in June, in fact, to get them screened again. So why does she want me to get a second opinion?
I also explained to her that, in my own PERSONAL opinion, had my mom died of ovarian cancer, and if my family had a history of OVARIAN CANCER, instead of breast cancer, then I would be electing to have an oophorectomy before having a mastectomy..But that's not how things went down. My mom died of breast cancer. Breast cancer runs in my family. Even though I know that being positive for this BRCA mutation means that I have an increased risk of getting ovarian cancer also, right now, the most important thing to me and my family, is to remove my breasts. Later on in life, when the time comes, the ovaries will come out. And if something ever is found on them, OF COURSE, I will remove them. (Not myself, but through surgery. Duh)
Another issue is that I am only 26. Yes, I already have 2 beautiful, healthy, amazing children, and NO, I don't want anymore, but that doesn't mean that I have to remove my ovaries. I don't want to and I don't want to go through menopause at 26 fucking years old. I'm sorry. So I don't agree with the fact that I need to get a second opinion for "screening my ovaries"....What the hell?
Some people probably disagree with me because of this-I am going to the most extreme measure to lower my risk of getting breast cancer. I am removing my breasts. Yes, I realize this. I am not stupid. No stupid person could make a decision like this. But not everyone with BRCA mutations goes to this extreme. Some opt for screening measures...That's awesome! Some decide to do chemo-prevention measures. That's awesome. Whatever you want to do, and whatever you feel is right for you, then that is what IS right. So as far as my boobs go, Good-bye! They are gone...In two and a half months the boobs that I have lived with for 26 years will no longer be with me. As far as my ovaries go-I'm going for the screening measures. And that's what I feel is right for me.
Don't get me wrong. I absolutely love my surgeon that will be doing the mastectomy...(Ha. How could anyone say they "love" someone who will be taking off my womanly body parts? What the hell am I thinking?) She is caring, she is knowledgeable, she is competent, and she is just plain awesome. But then I get this call, and it completely threw me for a loop..I don't know why I am so frustrated about it..Maybe it's because I felt like everything was finally set and organized for this all to be done, and now this shit happens....I don't know. Maybe it's just all of the elements of this week working against me...Yea, that's it. Gah. What else?
2 comments:
Hey there. Okay, I can tell by reading this that you are feeling quite frustrated. Firstly, breathe.. Secondly, breathe again..
Ok, so as far as the CA125 test goes, it's really not all that accurate - the levels can go up or down depending on all sorts of things. There aren't any tests that are very accurate for the early detection of ovarian cancer, that's why they call it the silent killer. There are a few subtle symptoms, but they are so vague its easy to miss.
I'm BRCA1+, which means my risk of ovarian cancer is about 44% - I happen to think it's probably higher since my family history is full of ovarian cancer. I'm also 39 & only found out about BRCA1 at 38 - so for me, having my ovaries out didn't even seem like a real choice to me - I was terrified of ovarian cancer...
But for you, I can see why you aren't as ready to do this. You are still quite young, and having the BRCA2 mutation your risk is much lower than even mine (by about 1/2), though quite a bit higher than the gen pop.
I'd just suggest that you be aware of your body, know yourself, so you know if things do seem to be different, and please don't feel 'safe' just because it hasn't presented itself in your family yet.
I had a PBM this past February, but no known breast cancer in my family (until very recently, my Aunt had PBM at the age of 69 and was pre-cancerous). It was a hard decision for me to make, because of the lack of b/c in my family. But, what helped cinch it for me was going to a support group - there were 3 sisters there - no cancer at all in their family - then bam, bam & bam, all 3 sisters got breast cancer. Scary. For me, I didn't want to be the first in my family. So while I think it's okay for you to wait, and be vigilante in your screening, I hope you won't feel too 'safe' in regards to o/c just because of a clean family history..
Sorry for such a long comment!
Teri
Thanks, Teri, for the comment. I really am frustrated, and while I should be happy that the doctor wants me to have a second opinion and stuff for ovarian cancer screenings, I'm just not. I've made my decision on what I want and that's that. I've already gone to a doctor, a BREAST doctor, who wasn't supportive of me having a prophylactic bilateral mastectomy. And she is even a breast cancer survivor! (I changed doctors real quick!) So I have been through shit with doctors already as far as all of this stuff goes, and I finally get a date for surgery, and then this happens...
Like I said, screening for ovarian cancer, for me, right now, is what I want to do. IF something abnormal happens to show up at one of my 6 month check ups for it, then I will have to cross that road when I get to it. Being a nurse, and just being a person who researched medically related information on a day-to-day basis, I have studied and researched the symptoms of ovarian cancer...(And thanks for posting that post on BRCA sisterhood's wall about the symptoms of it too!)
I am very aware of my body, and I know that just because I don't have a family history of ovarian cancer doesn't mean it won't happen to me. Personally, for me, I want my breasts removed because they pose the biggest threat...To me physically, emotionally, and mentally..
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