Phoenix FORCE

Posted April 12, 2010 by azsongbird
Categories: Uncategorized

The largest national group for women at high risk of breast and ovarian cancer is called FORCE, which stands for Facing Our Risk of Cancer Empowered. It was founded by Sue Friedman, who coined the term “previvor” for women like us. Despite the fact that Phoenix is so huge, there surprisingly hasn’t been a Phoenix branch of FORCE until now. Yesterday we had our first meeting, and I was thrilled to be able to attend.

I met some really lovely and warm ladies from the Phoenix area – we all shared our stories (including some tearful memories of loved ones lost to breast and ovarian cancers), and then had some great discussion for a few hours. I was surprised to find that most of the women were in my general age range (late 20s and 30s), and I was also surprised to learn that all the previvors there except for me have already had preventive mastectomies! With the exception of one woman who had breast cancer, lumpectomies/radiation, then mastectomies later. Most of the women have also had ovaries/uterus removed, or are planning to do so in the next few years. Of course, they all found out about their mutations 2+ years ago, and all of them are already married with children.

In any case, I am so glad to have met them, and I’m sure they will prove to be invaluable resources in the future. We will hopefully be meeting regularly to support each other, and at some point we are planning to have an open meeting with friends and family invited as well.


BRCA Patents Invalidated

Posted March 31, 2010 by azsongbird
Categories: Uncategorized

For those of you who don’t know much about the BRCA 1 and 2 genes, they have been patented by a particular company: Myriad, which is based in Utah. Because Myriad owns the patents to these two genes, women wishing to be tested for mutations in them can only get tested through Myriad, which means that Myriad can charge as much as it wants for these tests – as much as $3000, depending on what kind of test you get (as I indicated in an earlier post, I only had to get a “single site” test, so it cost $400 – much less, but still pricey).

Within the BRCA+ community these patents are quite controversial, not only because they make genetic testing so expensive, but also because there are questions about whether the patents have limited the amount of scientific research that can be done about these genes and their impact on cancer development.  However, it looks as if we may soon find out what the possibilities are without patents. Just a couple of days ago, a federal judge issued a ruling striking down these patents:

The judge essentially ruled that existing gene patents are a “lawyer’s trick,” and that elements of nature such as a human gene should not be eligible for patents.  Myriad will almost certainly appeal the ruling, but if the judge’s decision holds, the future of BRCA genetic testing and research (and the field of genetic research as a whole) will likely be significantly impacted.  It’s exciting times for us mutants!


Posted March 29, 2010 by azsongbird
Categories: Uncategorized

My biopsy results were benign! That means no cancer! In fact, my doctor said everything was completely normal – no atypia. So that’s great news. But I must say, the last month really took a lot out of me. I didn’t enjoy any of the actual exams, but really it was all the waiting and worrying that was so hard. I don’t know how many of those I have left in me. And I know it’s only going to get worse as I get older and my chances of getting cancer increase. After having gone through what I have in the past month, I can really understand why so many women want to opt out of all this completely and have surgery. Not that I’m making any decisions yet, but it certainly does give me more food for thought.

My First BRCATeers Meeting

Posted March 24, 2010 by azsongbird
Categories: Uncategorized

Last night my loving boyfriend J and I went to our first meeting of the BRCATeers, which is the Phoenix-area group of BRCA-mutation-positive women. Normally they just pick a topic, have a little talk, and then lots of discussion, which I would have preferred. But it was still great to meet everyone, and they showed an amazing film: the documentary In The Family, which was made by a 31-year-old woman with a BRCA mutation.  I actually have a copy of the DVD… it’s not that much new information for me, but I’m so glad that I have it to show people in my life who want to know more about my situation.  It’s very informational, and also does a great job of showing the gravity of these mutations and how they can affect women and their loved ones.  My boyfriend was definitely impacted by the film, but he said he was even more affected by the group introductions.  We each went around the room and talked a little bit about our BRCA status and our family histories… it was definitely crazy to hear woman after woman talk about grandmothers, mothers, aunts, sisters, daughters (and selves) who had fought breast and ovarian cancer, and some of whom had not survived.  One woman has four sisters, several of whom have had cancer, and one of whom was recently diagnosed for the third time.

One thing that really struck me while watching the documentary is what a big difference there is for women with BRCA-1 mutations as opposed to BRCA-2 mutations (which is what I have).  The film-maker as well as many of the women she interviewed are BRCA-1 mutation carriers, and I was surprised by how much of their discussions/concerns centered on ovarian cancer and the removal of ovaries.  There is a similar risk of breast cancer for both groups, but BRCA-1 carriers have a significantly higher risk of ovarian cancer (44 % chance, as opposed to 27% for BRCA 2 carriers), as well as a higher chance of getting ovarian cancer at a young age.  I still have a greatly increased risk of ovarian cancer, but my chance of getting it before age 50 is pretty small, so I can hang on to my ovaries – and with them my much-needed hormones and my child-bearing properties – for quite a while longer.  Ovarian cancer is nothing to mess with, so I will definitely have them out eventually, but I hate to think about having to do it in my 30s or early 40s, like many BRCA-1 carriers do.  To me, the idea of having mastectomies is much less scary than having an oopherectomy (ovaries removed).  Breasts are great, but the hormones your ovaries produce impact many different aspects of a woman’s health, including sex drive, bone density, and even brain functioning!

I’m looking forward to the next BRCA-Teers meeting, when I will hopefully get a chance to talk more with the other women.  But I’m still glad I went to this meeting, and it was wonderful that J came along to support me.  It was nice to have him by my side, and we had some really great  discussion afterward about everything.

p.s. My boob feels a lot better, although it’s still a little sore.  I’ve been trying not to worry much about my biopsy results, but the soreness is a constant reminder, and as I’m getting closer to finding out I’m getting more and more anxious.  I wish my doctor would call already!

The Biopsy

Posted March 22, 2010 by azsongbird
Categories: Uncategorized

This morning I got up at 7 am so that I could be at the medical facility by 8 to check in for a MRI-guided core biopsy of my right breast. The procedure didn’t start until 9, but I had to get there an hour early so that I could fill out forms, have everything explained to me, get my IV started, etc. I had more or less of an idea of what to expect, but the reality was definitely worse than it sounded when described to me by a nurse.

After I got my IV and several different people talked to me about what would happen, I got strapped into THE TABLE. It was similar to the one from my previous MRI – I lay on my stomach with my arms over my head superman-style and my boobs hanging down into two holes – and yet this table was somehow more horrible than the last, and I had to stay in it for longer. Not to mention that they immediately put my boob into what can only be described as a vise, squishing it beyond a comfortable point. This was done so that they could put a grid up to my boob and pin-point the offending spot that needed to be biopsied. To add to the strangeness of the whole affair, the doctor performing the procedure didn’t even arrive until I was already face-down on the table, so I never even saw her face!

At that point the procedure began. They put me back into the dreaded MRI machine for 20 minutes, which is half the time of my first MRI, but because this table was so much worse, my arms fell asleep right away. Even though I was becoming increasingly uncomfortable, I couldn’t move until the exam was over; when I finally did move my arms, the blood rushed back in, filling them with that “pins and needles” feeling – ouch!

After looking at the images, they gave a lidocaine injection in my right breast to numb it up.  The injection was definitely the single most painful moment of the morning, but luckily the pain didn’t last very long. I didn’t feel the actual biopsy at all: they made a small incision in my breast, and then used some kind of vacuum machine to suck out some cells from the right spot. Before finishing, they inserted a tiny metal “marker” that will stay in my body permanently (they assured me that it will not set off any alarms in the airport). If the biopsy comes back negative for cancer, the marker will let doctors know in future scans that they have already checked out that spot. And if the test comes back positive, then it will essentially serve as an “x marks the spot” for my surgeon.

After the biopsy was over, they wheeled me back into the prep room. At that point they finally let me get down off the table – yay! Comically, one of the nurses held my breast for about 5 minutes straight, applying pressure to help stop the bleeding. Then she patched me up and escorted me (in my hospital gown) through the lobby to another part of the building, where I got a mammogram of said breast so that they could document the position of the marker.  After that, the nurse gave me two ice packs (one that fits conveniently in my bra), and sent me on my way. The whole ordeal lasted almost 3 hours!

I’m only allowed to take Tylenol for the pain (Ibuprofen and aspirin make you bleed more), and I’m supposed to ice my breast 20 minutes per hour for the rest of the day.  At first it didn’t hurt much, but now I pretty much feel like someone punched me in the boob a bunch of times. It’s been an awesome day!

I guess I will find out the results of the biopsy later this week. Stay tuned folks…

The saga continues…

Posted March 17, 2010 by azsongbird
Categories: Uncategorized

So, it seems that my current screening adventure is not over. About 6 days after my MRI I got a cryptic letter in the mail from the Imaging place saying that they were requesting additional screening. Awesome way to find out that my exam turned up something suspicious! I called them last Monday to schedule these additional tests, and they informed me that I had to first talk to my doctor, who would need to order the tests before they could be scheduled. It took me a few days of phone tag to finally get in touch with my doctor, who thankfully faxed the order for the tests right over the Imaging place. I wasn’t able to schedule my follow-up ultrasound until yesterday afternoon.

Over the past week I’ve been trying not to worry very much. The blessing and curse of MRIs is that they are super-sensitive, and see everything – even things that are benign. So false positives are very common. But I will say that I really had hoped that I would go to the ultrasound, and they would say “no worries – there’s nothing here,” and it would be over. Unfortunately, that wasn’t the case. The ultrasound tech looked at two spots – one in my left breast, and one in my right. She said that nothing really stood out to her, but after my exam she took the images to the doctor, who apparently disagreed. The doctor came in and told me that she’s not particularly concerned about the spot on the left breast, but she wants to get a biopsy of the spot on the right one, just to make sure.

The biopsy is scheduled for Monday morning. I’m not particularly looking forward to the procedure, which will be uncomfortable at best and painful at worst, but what I’m really unhappy about is the waiting. More waiting. I know that it’s unlikely to be cancer – I am still quite young, and the nurse told me that 80% of what they biopsy is benign. But I won’t know for sure until I get the results, and all this waiting is awful.

More updates to follow…

My First Breast MRI

Posted March 7, 2010 by azsongbird
Categories: Uncategorized

Earlier this week I had my first breast MRI.  I had first scheduled it about a month earlier, but there was a question as to whether or not my insurance would cover it.  After multiple calls with insurance reps, they finally said that they would cover screenings that my doctor ordered (after a $250 co-pay, of course).  Unfortunately they won’t guarantee coverage until after the claim is made, so I am still concerned that they will reject the claim.  But my doctor and I agree that this is what I need – it’s the best method of detection for young women like me –  so I decided to go ahead with it.

Of course, had I known what the MRI would be like, I might not have been so eager to get to it.  I think it was the potent combination of humiliation, anxiety, and discomfort that made this procedure oh so special.  First I was directed to change into the standard hospital gown (fun!) – at least they let me put on two while I sat in the waiting room, so I wouldn’t have to expose myself to the other patients.  Then the nurse gave me an IV, so they could inject contrast fluid into me during the procedure.  Glad I didn’t know about that ahead of time!  I’m usually okay with needles but I hate the idea of something being continuously attached to me via my vein.  I think the nurse did a good job with it, but it hurt during the entire procedure.

Once the  IV was in, I had to get up on a table and lie on my stomach with my arms out in front of me Superman-style, letting my breasts hang down into two holes in the table.  Awkward!  Then the nurse told me she needed to check to make sure that my breasts were arranged properly for the exam, and she proceeded to feel up both my breasts under the table.  At this point my dignity had completely left the building.  Before the nurse stepped out of the room, she gave me some headphones and a little squeeze ball that I could use to alert them in case I started to panic.  That’s how often people panic during this procedure – they have to  plan for it in advance.

At that point they slid me into a big tube, and the exam began.  I had to stay completely still for approximately 40-50 minutes while there was a series of extremely loud beeps, clicks, and other noises sounding a little bit like the “emergency broadcast system” warning (something to do with how the magnets in the machine work).  It’s hard to stay still for that long, especially when you are in a very uncomfortable position and have an IV in your arm.  About halfway through my arms started to fall asleep, and my forehead hurt from being pressed into the headrest (I had a big red rectangle on my forehead for at least a half hour when it was over – awesome!).  But I think the noises were the worst, in part because they were so loud, and in part because I didn’t know when to expect them.  One series would end, and I would think “maybe that’s it!” only to be startled a moment later by another blaring set of beeps.  I never entered full panic mode, but I came close a couple of times.  I can certainly see the need for the  squeeze ball!

Finally it was over, and I woozily changed back into my clothes and left.  Of course, now comes the hardest part: waiting for the results.  I didn’t think to ask how long it would take to get them, but I thought I would hear pretty quickly.  Now I’m left to wonder… is this the standard waiting time, or is it taking longer than usual?  Should I assume that no news is good news, or does the delay mean that they’ve seen something and they’re trying to figure out what it is?  I’m trying not to let my overactive imagination get the best of me, but it’s hard.  In any case, I will keep you all updated once I hear more.