The other day at work my coworker/friend asked me "which appointment is this" and I said "the gynecologic oncologist" and she kind of laughed and said "you're getting good at saying those words".
Yes I am! it's kind of a funny coincidence, a nursing school sometimes prints to a our printer and a quiz had popped out. She picked it up and said "what is the surgical removal of the ovaries called". and I said (without hesitation) "oopherectomy" and she said "hmm no I don't see that..." and I said "no let me see" and sure enough it was there on the multiple choice selections, and I pointed it out. Who knows that?? besides medical professionals and those who have had the procedure done or are considering it.
So I had my appointment with the gynecologic oncologist on Wednesday. Let me tell you.. I don't like annual exams! This doctor though was very calm and actually showed me the "tools" which I've never actually seen before... I told her so, and she said she believes in her patients knowing what it is that she's doing to them. Yes.... I suppose that is preferable.
Anyway, prior to the actual exam, we had a long discussion.. My husband was there. I really wanted him to hear the information from the doctor. It seems like that was helpful when he went to see the surgeons with me. He didn't go with to the initial high risk clinic visit, not that he didn't want to, but I think more because I downplayed it and didn't place the importance of it higher over his work, and said my mom could go, which she did, and that was good, but in retrospect it would have been good for him to hear what the surgeon and oncologist had to say at my first clinic visit. that's really the basis of information on what thoughts and decisions I've been developing over the past year. Hearing it from the "experts" can be enlightening.
SO the gynecologic oncologist started out by asking what my understanding was about what this appointment was for. I told her that my understanding was that I wanted to know more about my risk, my preventative and/or screening options, and to get an exam done.
I guess this was the right answer. She said that she had reviewed my file, as far as the notes from the oncologist, my genetic results, and the notes from the original referring doctor. She said that in some of the oncologists notes he had indicated I was BRCA1 positive, when in fact I'm BRCA2 positive.. so she wanted to confirm with me what it was, and said she'd send him a note to clarify.
So she said my ovarian cancer risk is lower (with BRCA2 than BRCA1) so i have somewhere between a 12% and 27% risk of developing ovarian cancer ( which also coincides with my results report). She said the typical risk is somewhere around 1%, so best case scenario, I am more than 10 times more likely than "typical" to develop ovarian cancer. Scary. and "worst case" that is more than 1 in 4! (I try not to get caught up in the numbers, but it is hard sometimes..) I guess the real worst case is that I am the "1" in the 1 in 4. Which we will just not let be the case! right? SO She explained the options of having the ovaries and fallopian tubes removed vs that plus the uterus. the relating recovery times of the surgeries, and we talked about hormone replacement options.
One of the big concerns we have about this is hormonal, will it change me? will I become depressed? Will I lose my sex drive entirely? will I become a completely different person??
She indicated that she felt alot of the cognitive "changes" with the loss of hormones were more related to the continual loss of sleep due to night sweats than anything else. She seemed to imply that if that was under control it might not be to much of a problem, as far as sex goes, she does know that can in some cases be an issue, but there is something like small amounts of additional testosterone one could take to increase libido.
Her overall recommendation (as I interpreted it) was that if I was DONE having children, It is definitely something I could/should consider doing. Then the question would be to keep or lose the uterus? I lean towards getting rid of it. I'm not sure what purpose it serves other than bearing children, and If I'm not doing that - why keep it? I've seen people comment elsewhere - "if we removed everything that at some point could hurt or kill us, we'd have nothing left". This is true. But if something is more likely to hurt you than it is do any good, and you have a reasonable reason and the means to remove it and it won't cause harm - why not?
I know my odds of getting ovarian cancer are far less than my odds of getting breast cancer, but the problem with ovarian cancer is that it is "sneaky". the doctor said that surveillance hasn't been proven as an effective way to detect ovarian cancer any "earlier". That even with regular surveillance,75-80 of the time ovarian cancer is found it is in stage 3 or 4. That is scary! Surveillance entails a pelvic ultrasound and CA125 blood test every 6 months. Seems like with regular screening like that it should be caught earlier!! but I guess not...?
I asked her too if because my risk is lower than that of those who BRCA1 positive, is preventative surgery still recommended, She said yes. It is very much recommended for those 35 or older, or when one is done child bearing. So now I have the question of when. I really feel I don't want any more children, so am I ready to do it now? anytime? or would I rather wait. As much as I am convinced I don't want anymore children, how will I feel about the inability to have have any? If I were to decide to do it sooner than later, can I do it the same time as the mastectomy? is that too much for my body to handle? or is it better to just do one MAJOR surgery event than 2 major surgeries separated in time by a year or two? Hmmm
Side note - her office is in the basement of the cancer center. in the exam room the overhead fluorescent lights were covered by painting of the sky with a flowering tree branch through it. To bring life and light to this basement. I think this is a nice gesture.
For now I'm starting on surveillance. Next week I'll have my ultrasound and blood test. and will plan to do so every 6 months until I decide to do the surgery.
Now lets see my medical schedule:
Visit with high risk clinic
Twice a Year:
Physical Breast Exam
Plus who knows what with my crazy autoimmune thing... I'm just going to really concentrate on making that just go away. Seems like I should have a little more control over my immune function than my genetics, so I'll start there.
Welcome to My BRCA Blog. I'm Amanda, I'm 30. When I was 28, I tested positive for the BRCA2 gene mutation increasing my risk of Breast Cancer up to 84% and my risk of Ovarian Cancer to 27%. I recently had a prophylactic mastectomy to reduce my risk. I am using this blog as a forum to express my feelings through this journey as well as to keep others in the loop. Newest entries are on top, scroll down or use the links on the side to see older posts.
Friday, June 17, 2011
Gynecologic Oncologist - say that 10 times fast.
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