3 Year Mastectoversary

April 5th marked three years since my initial surgery. You can read the first post about my double mastectomy here, if you feel so inclined.  I didn’t even realize it was an anniversary until the day after; it just goes to show how much distance time can provide. At my oncology follow-up this week (I see her every 6 months now), my doctor talked about recurrence for Triple-Negative Breast Cancer, and cited some information about the highest likelihood of recurrence being in the first 2-3 years from diagnosis (more here). I guess it feels good to know I’ve reached that point, but I have a hard time breathing easy just because of some studies. I still feel like my risk of recurrence is high and I’m not sure that will ever go away.

I felt, on this date, that it was appropriate to share a recent NPR article about NOT having a double mastectomy: Why My Wife Didn’t Choose a Double Mastectomy. Of course, the woman in this article does not carry a BRCA mutation, so her situation is different, but I did want to highlight that mastectomy is not always the best choice, even for people WITH a mutation. When I first learned of my mutation at age 22, I opted not to have surgery and I didn’t plan to even start thinking about surgery until I was at least 30. Looking back, even though I had cancer, I wouldn’t have changed that decision. I think a lot of women get vilified for choosing not to have surgery, and I think it’s important to hear that they are not alone. The choice is so personal and people should be supportive no matter what. 

On Angelina Jolie’s Double Mastectomy

Okay, fine, I have to say something. First, I applaud Jolie for writing a very good piece in the NY Times calmly and rationally describing her decision. I think this is really going to boost awareness about hereditary breast cancer, and that is a good thing!

On the other hand, I have already seen and am afraid of more people being quick to judge and make conclusions without the correct information. My best piece of advice for everyone is to EDUCATE YOURSELVES and make sure you aren’t blindly following the news or listening to moronic website comments. BRCA gene mutations are serious business, as are preventive surgeries. There is so much information out there that is easy to find (visit facingourrisk.org, for instance), so there is no excuse for ignorance, vitriol, or fear-mongering.

This video is my oncologist, Dr. Kaltman, from GWU Medical Faculty Associates talking about Jolie’s decision and BRCA mutations. I am posting it not to advertise GWU (though I do love my onco), but to provide some straightforward information.

Before I step off my soap box, I also want to admit that I’m angry. I’m angry because I know Jolie had the best doctors money can buy and I’m sure her reconstruction will be flawless so she can look perfect on the red carpet. I was not so lucky and I know many other women out there who were in the same boat. A mastectomy is not all roses and rainbows, it hurts physically and emotionally and, for many women, things don’t go as smoothly as Jolie’s writing suggests. Most women do not recover in a couple of days and they are often very uncomfortable with the way their body appears post-surgery. But while I’m angry, I am trying very hard to also be accepting and kind, as I always do when I hear about previvors who have “perfect” results and go through life never having to know the turmoil of a cancer diagnosis. I guess what I’m saying is we should all love our fellow man, especially around the tender issue of cancer. We are all different and when someone else has different feelings or experiences, it is not good to respond by badmouthing them in public. (Of course, feel free to gripe all you want in private. I, for one, am going to go scream into a pillow.)

To have kids or not to have kids

After reading this article, My Sister, My Surrogate, I’m kind of pissed I don’t have a sister (thanks, mom and dad). The article is about a woman, who, like me, got breast cancer at 26 and, like me, froze embryos at the time. But because her cancer was estrogen-positive, her doctors advised her not to get pregnant. That’s when her awesome sister stepped up and said, “Put your babies in my belly!” What a good sister.

While I’m not ready for them just yet, the subject of babies has been causing me some consternation. Having BRCA sucks, so on one hand I am extremely against passing on my own seed lest my daughter or other future female descendant be blessed with the lucky fate I have been blessed with. But when I think about adoption and donated eggs and other alternate ways of having children, I get sad that I might have children who don’t possess the genes that make the Scharf/Tator family so wonderful. Our quirky senses of humor (yeah, Zooey Deschanel, we were quirky before it was cool), our smarts, our big ears, our singing voices, etc.

Which one will die of breast cancer before age 40?

At this point, I’m leaning very heavily toward the first hand – not passing on my genes. I see procreating as letting the gene win, whereas if I adopt or use a donated egg, this BRCA gene stops with me. No more. Zip. Zilch. Nada.

But I’m still debating. I’d be interested to hear from other readers with BRCA who are pre-childbearing – is passing the gene on something that bothers you?

Basser Research Center will focus on BRCA

This is fantastic news. Dr. Domchek was my oncologist in Philadelphia, and she is a wonderful and renowned researcher in the BRCA field. I couldn’t be happier that my hometown is getting this research center. I hope to be able to participate in whatever research they have going on in the future (as a survivor, of course – I’m kind of done with the cancer patient thing and don’t plan to do it again).

The gene-monster will get you!

I follow a lot of Facebook pages related to BRCA and cancer and such. On one page, someone with a BRCA mutation (I assume) posted about how they had a child on the way and they were not going to get the child genetic testing. Instead they were going to focus on “HEALTH and WELLNESS” and not “bombard” the kid with fears of cancer.

I understand the sentiment, and of course no one is pushing to get babies tested… well… no one I’ve come in contact with. I know all too well that it sucks to live life with the fear of cancer hanging constantly overhead.

But here’s what pisses me off. You can focus on “HEALTH and WELLNESS” ’til the cows come home, but that won’t stop the gene. The gene does not care if you run 20 miles every day, eat a strict diet of locally-sourced, organic fruits and vegetables, read Shakespeare, teach Yoga, never breathe contaminated air and never ingest any carcinogens. Until science can definitively say that some environmental factor turns on the gene and we can cut that environmental factor out of our lives, genetic testing is our best tool for survival.

I’m happy for that baby, but I hope that either those parents realize this before their kid turns 25, or science finds that BRCA genes can be repaired by repeated exposure to Hamlet and/or downward-facing dog.

Me in the New York Times!

Now that I’m done chemo, I don’t feel as inclined to blog. Maybe it’s because I have less to complain about. It could also be that I’m getting back to life and I’m busy with friends and work (which is REALLY busy right now). Either way, I am happy to report that I feel fantastic and am looking forward to my upcoming surgeries in October and December, which will hopefully result in my having a beautiful rack.

Today I have two things to share. One, I’m in the New York Times feature “Picture Your Life After Cancer“! Sure… I submitted myself… but it’s still exciting. Second, the article Breast cancer: patients with mutation diagnosed earlier than previous generation. When I first saw the title of the article, I thought it would be about women getting diagnosed earlier because they start screening earlier in mutation carriers. But the article comes to a different conclusion: that women with the mutation get cancer earlier than the older generations in their family. I think my explanation is better (though who would take my word over the people at MD Anderson). It just makes sense that if women start screening earlier, they’re going to find breast cancer earlier. My mom could have been screened at my age, and perhaps they would have caught her cancer before it was so far gone that there was nothing they could do about it.

The Number of…

Days since my double mastectomy: 34 (passed the month mark!)

Days since my reconstruction surgery to remove a large area of dead skin on my left breast: 10

Days since my egg retrieval: 4

Embryos my boyfriend and I now have frozen: 4

I almost never thought this day would come. Two weeks ago, on the night before my revision surgery, I could hardly breathe and hardly sleep. Everything was overwhelming me and making me anxious. First off, I was injecting a lot of hormones into my system as part of the in vitro course to prepare for my egg retrieval. On top of that, I had been so happy with my reconstruction results but it was all going to hell in a handbasket because there was a large area of dead skin on my left breast right under my nipple. The area was so large that my plastic surgeon couldn’t even say with any certainty how she would sew me back up after removing it, or that she would even be able to at all – I could have new scars, a vacuum that would require several days in the hospital, or a flap – and I had no idea what I would come out of the surgery looking like.

Well, it wasn’t that terrible. She was able to remove the skin and sew me back up using the same incision made for my mastectomy. Sure, my left breast is now flat making me lopsided and my nipple is way down at the incision line, requiring a couple more revisions to put it in the right place, but I’m banking on the fact that she’s a good surgeon and I’ll have a good final outcome no matter what.

It still really sucks that I have to deal with this complication, though. So many bloggers post pictures of their beautiful new breasts and I guess I just thought, since I’m young and resilient, things would be easy-peasy. Now that the breast cancer is gone from my body, I have my whole life to look forward to and appearances count. I don’t want to live with a deformed chest – but I’m confident that I won’t have to – even if things don’t return to normal until a year from now.

The news that I was able to bank 4 embryos was extremely exciting. Before the retrieval, I felt very disappointed that my ultrasounds only showed 7 big follicles. A young woman like me should have 20+, so what the hell was my problem? My parents said it was stress, and my doctors also pointed to the fact that BRCA1 seems to be linked to early egg depletion. Great. Not only is my biology trying to kill me with breast and ovarian cancer, it’s also trying to prevent me from having my own children.

We hoped that all the follicles would yield eggs; no such luck. Only 4 eggs were retrieved. But the next day my doctor called and gave the good news: 100% fertilization success. Overcoming great odds, all 4 of my eggs had fertilized! That’s 4 chances at a pregnancy if chemo renders me infertile, which I’m hoping it won’t in the first place. Will and I refer to our embryos as our “frids” (frozen kids), and it’s a little strange to think our possible future offspring is waiting for us in some liquid nitrogen column in West Philadelphia.

Whew. Revision surgery is out of the way. Retrieval is out of the way. Healing is going really well (now). What’s next? Moving back to DC, getting back to work, and starting chemo. I wouldn’t say I’m looking forward to any of it – lazing around with my parents, who are excellent cooks, has been great and chemo will probably suck, but it’s the next step in the process and it means things are moving along as they finally should.

And it was great to come downstairs for breakfast and see this article about the Philadelphia Susan G. Komen Race for the Cure on the front page of the Inquirer.

When it Pours, it Monsoons

The results from my biopsies are in. They have been in for a while, actually, but the last time I tried to share my results on WordPress, I got an error message. Figures. Apparently WordPress does not want me to share the following with the world, but I am doing it anyway:

I have cancer.

My biopsy returned news of malignancy in my right breast, and the ultrasound shows a tumor around 2cm in size. The cancer is also invasive, meaning it has broken from the duct where it started. Invasive ductal carcinoma. Has a night ring to it, no? The radiologist started one of her sentences with “Your cancer…”. My cancer. What the hell?

This was not supposed to happen. I am only 25 years old. I was supposed to learn I had some fat lobules or whatever it was that people my age have. Not breast cancer. But I couldn’t be that lucky.

I found this out on Monday the 21st of March, and in the week and a half since I’ve known, I’ve basically gone through all of the stages of grief. I have been angry at my body for betraying me in this way. I have been terrified and pondering my own mortality. I have been depressed, feeling like I have nothing to look forward to in life anymore. I have felt guilty, like there was more I could have done to prevent this, and that I’m letting down my family who already had to deal with my mother’s breast cancer, which ended up with her dying when I was merely 3 years old.

Today, I’m actually feeling okay. My decisions have been made and my course is planned – as much as it can be for now. I will have a double mastectomy and reconstruction with implants. Between the mastectomy and implants, while I am being expanded, I will go through chemo. It is weird to type this like it’s no big deal, and I would love to share my thought processes, but I’m not trying to write a novel here.

What I can say is that my mind is made up and I am at peace with it. I honestly hardly even entertained the idea of a lumpectomy or unilateral mastectomy. I just knew in my heart that this is what I wanted – I. Do. Not. Ever. Want. To. Have. Cancer. Again. It’s that simple. With this gene my chances of a second cancer are nearly 65%. To that statistic I say, “Screw you.” It just makes sense for me to prevent this from ever happening again.

When I first got the results that I was BRCA 1+ positive, I thought mastectomy was crazy and drastic. But I am no longer a previvor. I am now a cancer patient, and if all goes well, I will be a cancer survivor. I’d like to keep it that way for a long time.

I guess this means a lot for my blog – it’s no longer just about wearing my BRCA genes, it’s now also about being a 25-year-old with breast cancer. Whoop-dee-doo.

Up Next: Healthy Women Removing their Breasts?

BRCA has been a big story in the news in the past week. On our local Fox affiliate (Fox 5, DC, and no… I don’t regularly watch Fox but I do like to watch it in the morning because it’s the only local broadcast) they featured a story about women with BRCA removing their breasts, and I guess the same footage has been shown on several news stations because a recent study came out that says mastectomies and ovary removals reduce cancer risk. Well, duh.

Here’s an article from ABC that features a member of my local DC FORCE community: Mastectomy, Ovary Removal Reduce Some Cancer Risk and Mortality.

I guess it’s good that us mutants are getting media attention. We want to raise awareness and all… But I also hate how the news sensationalizes things like this. OMG! Healthy women are going to drastic measures to beat breast cancer! What has society come to?!?

Unless you have BRCA, you cannot fathom what it takes to make the decision to have surgery. I am afraid that people won’t understand our situation based on the media coverage, and that they’ll say negative things like, “These women are crazy. I would never do that.”

Anyone else have thoughts on this?