The latest — I met with Dr. Boice (My GYN Oncologist) on Thursday morning (2/19). The meeting was short and sweet & didn’t involve any exams (can I get a woot woot?!). However, it did involve some confusion for me.
The recommendation for me was to have a hysterectomy while leaving one little ovary in there to regulate my hormones for the next 5-10 years. While I was sitting in the doctors office, it made sense to me to choose that route. It seemed like the sacrifice that it would take was less serious if I didn’t have to be thrown into menopause at age 29.
After having 2 abnormal pap-smears it seemed like common sense to get rid of the risk there by taking out the uterus all together. And, although we hadn’t talked about a hysterectomy previously, only removing the tubes with Dr.Thompson — this route makes a lot more sense, I can see that.
One interesting thing that I learned was that I would still need to be surveillanced every 6-12 months because even after a COMPLETE hysterectomy there is still a risk of getting cancer in the perennial lining (although this is rare).
And although it does sound a little bit crazy to have a hysterectomy and keep an ovary to reduce my risk of OVARIAN cancer… the research is showing that ovarian cancer likely does begin in the fallopian tubes.
Then, I talked to some of my BRCA Sisterhood sisters & asked their recommended advice / opinions and the outpouring of experiences and advice was somewhat overwhelming (literally over 100 comments, closer to 150) — what I learned that I hadn’t known before was that there ARE cases where women have gotten a complete hysterectomy and left one or two ovaries to avoid menopause who later were diagnosed with ovarian cancer.
There are a lot of emotions that come with the decisions and I am seeing a counselor to sort through those things but I think that I’ve narrowed my decision down to either 1. a complete hysterectomy or 2. a complete hysterectomy and spare an ovary (for now). The surgery will be scheduled for early June & thankfully covered entirely by my insurance.
Last week I woke up with pain under one of my arms and 2 small lumps of sorts — and then, I was brought back to a hard and fast reality — I’m finished having biological children and now I need to begin making choices. This week, I’ve been filling my calendar with upcoming appointments which will lead to numerous more appointments and tests.
I’ll begin my surveillance period where I’m having my ovaries checked every 3 months and my breasts checked every 6. I’ll have yearly mammograms and MRI’s. Which will eventually end in either surgery or a cancer diagnosis. I guess that’s as real as it gets, folks.
I’ve spent this week trying to do damage control in my home — dumping out of all my beloved chemical filled bottles of products and filling them with natural home-remedies (that I’m actually loving, can we say honey body wash? Ah-May-Zing).
My first appointment is with my beloved Breast Center on Tuesday at 3:30 and then, I follow up with my GYN & I need to schedule an appointment with my GYN Oncologist to decide whether just having my tubes removed is a fair option or if I should just go all in…
Well, there’s the update; I guess I’ll become more consistent in keeping this blog up to date, now that I have things to post about.
SO, I hardly ever update this blog unless there is a new/pending development — so, here goes. Baby 3 has arrived (safely!) and everything is going well on the family of five front…
I’m meeting with my OBgyn TOMORROW at 6pm to have my post-baby/pre-op appointment regarding the removal of my tubes (different from the usual ‘tying’ of the tubes procedure)… I guess I’m getting slightly anxious about the realization that I will never be able to get pregnant again — but, after my third pregnancy, I don’t think that I’d make it through with my sanity still in tact… & after lots of prayers, baby Emily seems to be quite the “Mama’s girl” — hah. So, I think that this is absolutely the best decision for our family.
I’ll update more after my appt with specific details regarding the surgery & what to expect/recovery time.
So, I’m about 32 weeks pregnant & I had my 32 week check up yesterday — everything with little Charlotte looks good.
My doctor and I discussed my first plans for surgery — I’m having a Salpingectomy about 7 weeks post delivery. This means that my doctor is going to remove both of my fallopian tubes; research has shown that ovarian cancer may actually BEGIN in the tubes — so this is a great way to reduce my risk while still allowing my body to create hormones & not throw me into menopause at the age of 28 by removing the ovaries.
I must say that 1. I’m so glad that I won’t ever have to take birth control pills again! and 2. although I will still need to do my quarterly/bi-annual check ups, I’m excited that my risk will be reduced.
I’m not the best blogger on the planet; but I haven’t really had too much to say. There aren’t many decisions to be made while you’re creating life (two of them, in 2 years!) But now, life creating is winding down and coming to an end for our family (last baby due April 18th) so I need to get on track and begin deciding what is best for me.
I’ll be honest, I go back and forth… day one: I’ve got this, everything will be fine, God is in control (which I totally DO believe He is)… day two: I don’t want to be the lady that I recently read about who died when her baby was just tiny because cancer took her life, so I’m getting EVERYTHING out… day three: someone gets diagnosed with stage 4 ovarian cancer… day five: someone tells me that you can prevent cancer by making good life choices… day six: I need a nap.
Sometimes I feel like I’m not trusting God enough if I choose surgery — ultimately, I know that He holds even death/sickness/cancer in His hand and that He could cure me of even the worst possible outcome — but, I also realize that we have doctors for a reason. It doesn’t make sense to sit back and wait to see what my outcome is.
So, I think, after talking to my new OBGYN that I may have only the fallopian tubes removed after my delivery in April & then continue life as usual (nursing the baby) — enjoy what is left of my 20’s (2 years! I’ll be 28 tomorrow!) and then, stay on track to have everything else removed when I’m 30.
I could live in the fear of, well, what IF I get cancer before I’m 30… but, I could also die in a car accident… so, I don’t think that mentality is a daily thought process worthy of consuming.
That’s the latest. Everything else is going well. I’m loving being a SAHM & raising little Juliette. I’m also So excited to meet little Charlotte in a couple of months!
Completely uncharacteristic of me — but, enough is enough. First, there was the time that she didn’t tell me that I was BRCA1 positive for AN ENTIRE YEAR…& then, there was the time when she came to my delivery room & prescribed birth control…oh, and THEN, there was that time when my husband called to reschedule a consultation (and discuss side-effects…) and she told him that she intended to do surgery THAT DAY.
I mean, I’m 27 & she wants to rush into a surgery that is going to put me into menopause…without first discussing the surgery and or side-effects or following it up with a second opinion.
So, today, I met with my favorite Breast Center Oncologist & she found me a new OBGYN & they both encouraged me to get busy with the baby making whenever I’m comfortable (if we choose that route)…I also got some hot tea & a special parking space.
Before my appointment I had an ultrasound of the breasts & everything looks good (non-cancerous), we’ll continue to repeat these simple, non-stressful events every 6 months until we decide to change our course of action, but for now, I’m pleased with my doctor & I’m pleased with their office, their kindness & how amazingly well they treat their patients.
I have my ovarian ultrasound on Tuesday & my CA-125 bloodtest… & then a follow-up with “Dr. House”…
Side note: I started a fb page. http://www.facebook.com/brcawhat
So, now that I’ve gained my strength – I’ve begun researching. I must say that I’m slightly disappointed by the lack of information I’ve found so far on the prophylactic oophorectomy (removal of ovaries) surgery – the youngest person that I’ve found so far that will be considering this will be 35 before her doctor will even agree to do the surgery.
However, it seems to be semi-common in the BRCA community to have a prophylactic mastectomy (removal of breasts) as early as 21 (and earlier, I’m sure) which makes 27 sound aged.
But, me, my situation being slightly backwards – I had a baby and within 24 hours my OBGYN came to my hospital room, with her prescription pad in hand – “So, which birth control did you think you’d be interested in trying?” – getting pregnant again is not an option for me. Technically, that isn’t true – I have until I am 30 if I’d like to stay within the medical recommendation.
I went in for my 6 week check up and I saw the midwife in the practice that I go to and she did everything and again, wrote me a prescription for birth control – just “in case” I didn’t have one already (which I did, for a year). But she was even more bold; she wrote hers for only 3 months assuming that I’ve chosen the March date for surgery.
I think that the reason I’m most looking forward to this surgery is because I almost always have an ovarian cyst. I had one when I got pregnant. It was still there when I was 12 weeks & could very well still be there, right now. I guess, we’ll see soon. But, the cyst before that one was half solid, “abnormal”, and painful. I have been getting ovarian cyst since I’ve begun ovulating.
I don’t like the unknown; I’d rather have the surgery & not have to wonder every single time whether or not this cyst could be “the one”.
I guess that’s the latest. My appointments post baby begin next week…
Okay, so those of you who’ve read & followed my story — I’ve reached the next level of my journey and decided that it’s time to write an update…
As most of you probably know, my husband & I decided to try for a baby during the honeymoon & were blessed to find out that we were expecting quickly…(immediately, hah)…and have welcomed little miss Juliette Londyn into our family on November 26th (a little over 6 weeks ago).
Although having a little beautiful baby girl is joyful & exciting, I’ve now reached the point in my life where I will be making decisions regarding the BRCA1 & what I intend to do going forward…tough decisions.
I intend to meet with my doctor (regular GYN) in exactly 2 weeks to discuss having both my ovaries & fallopian tubes removed as early as March or as late as November (I’m still deciding).
The problem is that this will put me into menopause immediately following the surgery; and I’m only 27 — some people may find my apprehension silly considering the surgery will decrease my risk significantly — but I kind of favor my body the way it is currently, free of hormone replacement therapy & hot flashes.
But, regardless — I’m finished the journey of creating a little person & am now continuing on the journey of continuing to strive for what is best for me & for my family…
A side note – I’ve chosen to breastfeed exclusively because that has proven to be effective in reducing the risk of breast cancer in women by 1/3…amazing. A woman can give life to a child & the child can give back…
I’ll update more frequently as I continue to research the choices; hormones, natural remedies, appointments; etc.
It’s been awhile.
So, life has been a little busy (you know, getting married and whatnot) but now that things have calmed down, I thought I’d write an update.
Basically, the last time that I was at the doctors was on March 7th for a Biopsy of my cervix (completely unrelated to BRCA-1) & I got the results back on March 15th and they were normal. Thank goodness!
However, my doctor told me on March 7th that because my ovary had a 2cm cyst on it – I’d need to schedule an ultrasound for 6 weeks (April 18th) and see how the cyst had developed; if it’s still there or has changed at all, the oncologist will be removing it. I will also be repeating my CA-125 blood test to make sure that my levels haven’t increased.
I guess the biggest news right now is that we’ve decided to try for a baby – so, Lord willing we’ll have a little one sometime in our future!
But, yeah, that’s pretty much all of the updates that I can handle.
Married life is going well & we’re optimistic about the future. Love.
So, I have a missed call from my doctors office (since I memorized their number recently) and I listen to the voicemail: ‘Hi Ms. Booth, I was calling to discuss the results of your pelvic ultrasound with you. Please call me back.’ Immediately two things come to mind, 1. If there wasn’t anything to share, would she have said everything looked good? And 2. Of course I’ve already pressed ‘call back’.
So, I don’t hear anything Thursday – I call back on Friday. There is no way that I can go through the weekend not knowing.
Friday, my doctor is out of the office but another lady takes my call; I must have come across as desperate.
‘Hi, Ms. Booth? Yes. Your uterus looks good. Your left ovary looks nice. There is a cyst on your right ovary; about 3cm.’
I’m BRCA positive; does that matter?
‘what’s that? You have BRA-ca? Do you know if you have the ovarian mutation? We will have to do a ca-125 and see if your levels have changed; this stuff moves fast in young women, but it’s probably just a cyst that will go away.’
So, I guess this is my life – I get the test done, they see something they don’t like & they run more tests until eventually I have surgery or God forbid cancer.
But the truth is that having a baby & being a healthy mom, is the most important thing – its worth fighting for.