August 20, 2020
I am 16 days past my first in person High Risk visit. It was a good and informative visit. Most of it was reaffirming what I had already been counseled on, but the gal did a fine job and helped me separate some facts from fiction. She also reassured me that, no matter what decisions I make in the future, they will be the right ones for me.
As the Counselor was reviewing recommendations for diet and other things to avoid, there was a long pause when she mentioned “minimizing alcohol.” After the brief silence, my husband kindly threw me under the bus and told her Prosecco in our house was NOT purchased by the bottle, but rather by the case. Now, in my defense…..I SHARE the case with a group of friends! It is not entirely my fault that 12 bottles disappear faster around here than they do at a 2 for 1 sale at the local Liquor Store. This is simply what happens when the tribe gets together. That being said, there are A LOT of things I am willing to give up, minimize and moderate, but some of my greatest joys and currently my best source of distraction is found through gathering with my clan and indulging in a glass, or two (or bottle) of Prosecco. It does not happen daily, so please do not judge or throw a stone my way. Well, go ahead if you want, I can take it, but your judginess and stones aren’t going to take away the pain or anxiety I am feeling right now. Prosecco with friends at least allows me to relax my mind, if only temporarily, and helps remind me that good friends and laughter are the best medicines out there.
Back to the appointment…..there was plenty of conversation about the risks and choices that come with a positive BRCA1 mutation diagnosis. For those of you not familiar with or new to BRCA mutations, here are a few statistics (it is important to note here that these are for BRCA1 mutations and the numbers for BRCA2 are different.) The average woman has a 12% chance of developing breast cancer at some point in her life ~ a woman with a BRCA1 mutation has an average risk of 50-87% chance of developing breast cancer by the time she reaches 70 years of age. From research, I have also seen it suggested that this particular mutation can increase the risk of triple negative breast cancer, which is often aggressive and sometimes difficult to treat.
As for Ovarian Cancer, the general population has a lifetime risk of less than 2%. Depending on which research you look at, a woman with a BRCA1 mutation has a risk of 35-70% chance of developing Ovarian Cancer by the age of 70.
Once a woman becomes aware of her positive BRCA1 status, she basically has 4 choices.
Here are the choices:
- She can bury her head in the sand, pretend the diagnosis isn’t legit, take her chances and let fate determine her destiny.
- She can increase her screenings. For the breasts, that means yearly mammograms, followed 6 months later by a yearly Breast MRI.
- The thought behind this particular choice is that IF cancer does develop, it would be caught at an early stage where treatment has the best chance of destroying the invasion.
- When in comes to the Ovaries: There are a few things that doctors may try, but as of now, there is no effective way to scan for Ovarian Cancer.
- She can take a drug called Tamoxifen.
- She can opt for Preventative Surgeries.
My personal thoughts on the 4 choices are this…..
- I am not good at compartmentalizing or ignoring anything, so as much as I would like to ignore all of this, burying my head and pretending it does not exist is not a viable option for me.
- Increasing screenings sounds like a decent and logical approach and is my second choice. The reason I place it in second is because I know myself and know that anxiety will keep me awake at night as I get close to each and every scan. Along with anxiety, fear of developing a tumor will cause me to miss out on enjoying some of the beautiful things life has to offer. If you know me at all, you know I hate missing out on anything I consider fun or exciting and would hate for fear to keep me from any of it.
- Also, for me, reality feels like IF/WHEN cancer wins the rapidly multiplying cells battle and a tumor is formed and then found, I will be facing treatment AND preventative surgeries. In turn, I will be sick from treatments, which will make my body weaker than it is right now and, in the end, I will lose my hair and my boobs!!!! Irony hits hard here, as my boobs and my hair are the only two things about my physical being that I like. ~ Alanis could certainly add a verse to her song about that!
- As for the medication option. This one may sit lower than the burying my head in the sand option for me. I really do NOT want to take a medication that MAY keep cancer from forming. As with any option, there is NO GUARANTEE, but a lifetime of possible daunting side effects is a big fat zero in my book.
- I was happy that my counselor told me that this particular choice was not one she would recommend either. She felt strongly that there has not been enough research or data to back it up and therefore, would not suggest it.
- Preventative Surgeries. Believe me, I have thought about, prayed about and had many conversations about this option. Currently it is my top choice, as I believe it offers the best opportunity for me to put on a set of bad-ass imaginary boxing gloves and TKO cancer before it has a chance to take me down. Again, I know that there are no guarantees, but a double mastectomy would take my chances of developing breast cancer down to less than 10% and removing my ovaries drastically decreases the chance of getting Ovarian Cancer as well. It is aggressive….you bet! Am I scared…I am petrified, but I’m not going to get to the other side of all of this being passive and afraid.
1. I meet with a Gynecological Oncologist on August 26th to chat about removing my ovaries and possibly my Fallopian tubes and uterus. I can’t imagine being thrown into Menopause is going to be fun, but if/when the time comes, please send some love and good vibes to my husband, son and anyone else close to me. I am an emotional wreck on a good day, and fear they will get the brunt of my unbalanced hormones and emotions. ~ If Jim moves to the shed in the woods and Jacob jumps in the kayak and flees for Pittsburgh via the Allegheny, y’all will know why.
2. I am scheduled to meet with a Breast Oncologist on October 13th. I believe we will have much to discuss. I had no idea how there were so many choices when it comes to eliminating and reconstructing one’s boobs. ~ I will save all that fun for another blog.
As I prepare for what comes next, please keep the prayers, good vibes and love coming my way. I appreciate every call, text, message, card and virtual hug I have received. Not every minute has been good, but I try my best to find some good in every day.
Here is a quote I found and thought was appropriate: “Courage is not the absence of fear but action in spite of it.” ~ Sean McCabe
Since I mentioned it……here is a link for “Ironic” by Alanis Morissette. It’s been a long time since I’ve heard it, but after listening to it today, I feel as though it’s more relevant now than it was all those years ago. https://www.youtube.com/watch?v=Jne9t8sHpUc
Before I end my blog for today, I want to revisit the opening question. Boobs or Prosecco? I contemplated this question for hours as I lie awake last night, unable to sleep and here is what I have concluded. Instead of looking at these from the outside, I dug deeper into the content of each. Right now, I see the cells inside my breasts as an army. They have served me well and I appreciate all the work they have done, but lurking in the shadows is a traitor. I have no idea when this traitor is going to multiply and it is possible that by the time I do notice the invasion, my internal healthy army will need the assistance from outside sources. In order to defeat the invaders, I may lose more than anticipated. Therefore, it makes sense to me to eradicate as many potentially traitorous soldiering cells as possible . When I glance at the content inside the Prosecco bottle, I find thousand of bubbles just waiting to be relieved of their pressure. Each bubble represents a celebration of some sort….a memory to be made, a hug to be received, a concert to attend, an ace that trumps a round of cards, an afternoon spent with my nieces and nephew, the hope of one day seeing my son married with a family of his own. This list is endless, and this my friend is the reason why if you asked me today which one I would choose, I believe the answer is clear. I choose life, love and Prosecco over my boobs.
One thought on “Boobs or Prosecco?”
That is alot to think about. The anxiety of waiting for a mammo result is emense even without the gene! Having the gene would probably push me over the edge. I know that you are stronger than me in that respect. I had a total hysterectomy with bilateral oopherectomy when I was in my early 30’s, which means my uterus and ovaries were surgically removed. It shook me to the core as I wanted to have more kids. I also had many depressing feelings over the loss of my female “parts and pieces”. Seeing a baby made me feel half of what I used to be. It took the air right out of sail! When I was in nursing school, there was one fact that always stuck with me and to this day, causes me to pause. Sounds dumb, but when a woman needs to have a bladder scan and who has had a hysterectomy, the bladder scanner must be changed from female to male for proper results. FEMALE TO MALE! But you know what….after a little time, it didn’t sting as much. I am still as feminine as I was before and there are benefits.
You dont ever have to buy maxi pads or tampons again!! And the hot flashes…well they do suck, no way around that but there are natural things like black cohash that can be taken especially if you can not take hormone replacements. I get to sleep in because I don’t have smaller humans depending on me. And one more important thing, I do not have to worry about ovarian cancer. So I say, turn that damned bladder scanner to male! In the end of your journey, I am certain that the choice that you do inevitably choose will absolutely be the correct one. Trust yourself and those that truly love you as they are your strength and support. Love you!