Beautiful B9

60a37-b9

After three attempts to biopsy today, they finally got the sample they needed and my left side is in the clear!

Benign is such a beautiful word to hear these days.

Now we just need to deal with Lefty’s evil twin sister.

We got some very positive opinions today and I am feeling optimistic. I have a big surgery ahead of me, which will be no picnic. BUT…if there are no surprises during surgery, things are looking very good! MDA feels that we caught this very early and it is very small and treatable.

I am loving my doctors at MDA which we now refer to as “The Dream Team”.  These guys are pretty famous and pretty awesome. I don’t know how I lucked out with this crew, but I feel very lucky.

So glad I came here for a second opinion. Big love for MDA right now.

I will leave you with this helpful chart my sister found for breast exams.

Looking forward to going home tomorrow!

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Another day. Another biopsy.

I found out why the radiologist seemed stressed out. The biopsy failed. She was only able to get blood, no tissue in the sample. So in a couple of hours I will have a repeat. Hoping for benign results and better pain meds this time around.

On to some good news….met with two amazing, incredible doctors. I was so impressed with both the breast surgeon and the plastic surgeon, as well as their fellows and nurses.  They spent a lot of time with us, were very thorough and answered all of our questions. These guys have ridiculous credentials and they deal with breast cancer all day, every day. I had the gut feeling with both of them that these are people I want in my corner.

Waiting now to go in for the biopsy, then meeting with the oncologist later this afternoon. Tomorrow I fly home and can’t wait to see my kids.

Thanks so much for all of the texts and emails checking in. I feel the love and I love my peeps!

Texas

We are here in Houston and had our first day at MD Anderson.  Today was just radiology…they repeated the mammogram and ultrasound so they could compare the scans with the ones I had at home.  Sounds easy enough, but it was a pretty crappy morning.

First, the mammogram which was definitely unlike any mammo I have had before.  All I can say is ouch! It was much longer than usual and involved lots of extremely tight clamping. I mean really tight. I have been getting them since I was 35 and its always a little uncomfortable, but never like this. I guess if they can get better pictures that way it’s worth it.

Then, on to the ultrasound…I had a tough cookie from Boston as my ultrasound tech.  She referred to my tumor as “teeny tiny”, which I love to hear.  She is the second medical professional who has said that. After about 45 minutes of ultrasound-ing, she stepped out and came back with the radiologist.  Apparently, they had seen a nodule on my OTHER breast. Ugh.

The radiologist said she really thought it was benign, but with my BRCA status we have to biopsy it. (Haven’t I heard that before?).  She told me they would do a simple needle biopsy and then a pathologist would read the tissue and have a result in ten minutes.  If benign, I could go home. If malignant, they would have to do a “real” biopsy.

So after prepping me for the procedure, signing paperwork and lots of waiting we got the show on the road. The lab lady from pathology showed up and the procedure began. Now, from the way she explained it…I thought it would be a very simple procedure and not as bad as my last biopsy (which really wasn’t that big of a deal). I thought it would just be like a shot.

I couldn’t have been more wrong. First of all, I guess she didn’t give me enough anesthesia so I felt this intense burning pain. “Ouch! I can feel that!” I yelled.  She started giving me more and gave me like 3 shots. It was super painful. Then, I guess this nodule was very deep so it took about 30 minutes of tugging until she got what she needed.

After awhile (much longer than 10 minutes), the radiologist came back in and said that pathology did not see anything suspicious on their first test, but that she will not say its benign until the full pathology report comes back. She seemed stressed out. I don’t know why. Maybe because of the anesthesia, or maybe because she didn’t feel she got a great sample? Or maybe because she was so busy, the place was packed. Anyway, I will have the results tomorrow when we meet with the doctor.

It was a not fun morning.

I was very cranky after my appointments but I finally got over it and my mom and I went to a fun part of Houston called Rice Village for some retail therapy and a nice dinner. Shopping, a manicure and wine definitely helped.

I am trying to focus on the positive…that they think its benign and that my (other) tumor is “teeny tiny”.  Looking forward to finding out more tomorrow.

Best part of the trip was cocktails with my mom and sister last night. If only this was just a normal girls weekend! Have loved spending time with them though, and very thankful that they are here. We miss you, Sara! XO

Uninvited Guest

I was thinking that cancer is like an uninvited guest who shows up at your house and won’t leave. Not the type of guest that just does her own thing…helps herself to coffee and makes the bed. The kind that takes over and requires all of your attention. You just want her to go home so your life can get back to normal.

I am finding, even at this early stage of the journey, that sometimes its nice to have cancer-free days. I know I am not cancer-free (yet), but taking a break from all the doctors, research, talking about it, etc. is really nice sometimes.

Yesterday I hung out with the kids and had a pretty normal day. My husband and I had a nice date night (probably the last one we will have in awhile). We actually laughed a lot, more than we have in a long time. We had fun. It was nice to just put cancer on the sidelines for a day.

It really does take over. And it makes you long for the days when the little stresses of day-to-day life seemed important. I guess at some point I will have a new normal and get used to the changes.

It also feels sort of like the calm before the storm. Kind of like when you are pregnant and you don’t know what having a baby will really be like.  You have an idea, but you can’t really know until there is a real, live, crying baby in your arms.

Monday I leave for Houston. At MD Anderson we will pretty much be starting from scratch. They do all of their own tests, scans, etc. so it will truly be a second opinion on everything. Very anxious to see what they say.

My mom will meet me in Houston and I am looking forward to spending time with her and my sister.

Happy Sunday XO

P.S. If you are looking for a movie to see, avoid “The Promise” at all costs. It was the only thing playing at the fancy theater and it was soo bad. The kind of bad where you can’t help but giggle during the serious moments. At least we had comfy seats! 🙂

10 Things I Have Learned (Issue #1)

I think this might need to be an ongoing series. I can’t believe how much I have learned in 11 days. When you are diagnosed, you quickly become an expert on a subject you really don’t want to be an expert on. It feels much longer than eleven days since I was diagnosed! I hope no one reading this ever needs these tips, but these are a few things I wish I had known:

1. You can definitely have breast cancer without feeling a lump. Stay on top of those mammogram appointments, get MRIs if you qualify and insist on a biopsy if something shows up. I spoke to another local mom recently who had to push and insist on a biopsy when the radiologist didn’t think she needed one. It was cancer.

2. Early and stage 1 doesn’t always mean no chemo or radiation.

3. When you get cancer, there is a TON of waiting. Waiting for results, waiting for doctors appointments, waiting for surgery. Nothing is ever as fast as you want it to be.

4. Unlike other cancers where you usually see an oncologist first, with breast cancer you usually meet a surgeon first.

5. The two sites that all of my doctors so far have recommended are breastcancer.org and NCCN.  I also found one called mybcteam where you can type in your specific type of cancer with all of your stats and find others with the exact or similar situations. It’s nice because you can read their stories, see how they were treated, etc.

6. I was always under the impression that the most important part of your cancer is the stage. I have learned that for breast cancer, there are many other important elements…the grade of the tumor, whether you are PR (progesterone receptor) negative or positive, ER (estrogen receptor) negative or positive, HER negative or positive and Ki-67 (rate at which the cancer grows).

7. If you get breast cancer, you will probably be prescribed medication after your surgery/chemo, and you will likely be on that medication for 5-10 years.

8.  Everyone has a story about someone in their life who had breast cancer. 1 in 7 women will be diagnosed with breast cancer in their lifetime. That is a pretty crazy statistic.

9. There are many studies that say diet and exercise play a huge role in whether or not your breast cancer will return after treatment. Even just 30 minutes of walking a day can make a difference. I plan to majorly step up my exercise routine.

10. After you first get diagnosed, you will be extremely busy! A friend told me this early on and I didn’t understand at first. There is so much to do…researching doctors, securing appointments, coordinating records/scans, travel arrangements, researching your cancer, prepping home/life for upcoming surgery, the list goes on..

Just realized I could easily do more than 10, but will save some for the next issue. 🙂

XO

Better Day!

Yesterday was a much better day.  I really liked both of my doctors.  They were both very thorough and had a few positive things to say, which was nice!

Gown upgrade! Both of the ones I wore today were cloth, not paper.
The one at the Breast Center was very fancy…it had all these holes and a chic little wraparound thing.
I have to say I liked it…the goal of this one is to keep you as covered and warm as possible during exam and after.

I am finding that the process these doctors have really makes a difference. The surgeon I met yesterday is the head of a new “Breast Center” in town.  The hospital received a big donation to create this center, and it houses a large imaging center for scans, a genetic testing center and two new and very qualified breast surgeons there to treat people. In addition, they have social workers and patient advocates to help anyone with breast cancer.

If I had done my scans there, a patient advocate would have called me within an hour of getting my results to guide me and tell me what to do next, answer questions, etc. That would have been awesome. I really think that would have helped. They also have support groups and a social worker that you can talk to about how to tell your kids, etc. Basically, they have people there to help you with whatever you need.

A friend who went through this recently told me how to make a binder to keep everything organized and I have been running around going to Office Depot to get just the right stuff for it. If I had gone there first…they have the binder all set up for you. Small example, but these people were on it.

Also, just the whole way they sat down and explained everything to me was so different from anyone I have seen.  And…it just happens that every person I met with was a woman. Very different style and process from any of the other places. I liked it.  Of course, the most important thing is the qualifications of these doctors, which I also feel comfortable with.

From everything I heard today my prognosis still looks excellent and as long as there are no surprises during surgery the cancer should stay manageable and small.

The oncologist yesterday explained that while a very small tumor is a good thing, my treatment after surgery will all come down to the genes of the tumor. The genes will tell them how likely my cancer would be to come back.

So, treatment will depend on this big test they do on the tumor. The Oncotype Test (often referred to as “onco test”) will analyze 21 genes and give me a score from 0-100.  Based on the score of that test, they will decide what types of drugs I need to treat the cancer (this will include whether or not I need chemo).  I will get the results of this test in about two weeks.

I am anxious to get to MD Anderson to see if they agree on everything I have heard so far. MDA has their own version of the onco test, so it will be interesting to compare scores.

I am sure this is TMI for some, but its definitely helping me to write.

Happy Friday to all my amazing peeps!
XO

Pity Par-tay

I had a little pity party last night. It was the first one I have had. Probably not the last, LOL!!

It was similar to a toddler’s tantrum.  I actually cried and yelled…might have even stomped my foot. My husband was great (prob his best moment so far in all of this). He just handed me tissues and listened. And told me I am not alone. The kids were asleep, so that is a good thing.

I was feeling down due to a phone conversation I had right before I picked up the kids from school. A well-meaning friend hooked me up with another local mom who went through this a couple years ago. I called her because I wanted to see which doctors she used.

She was a straight shooter and told me some pretty grim stuff about her experience. As my mom said, I have to remember that everyone’s experience is different and everyone’s cancer is different.

Hopefully, today will be a better day. Meetings with new breast surgeon (fingers crossed!) and radiation oncologist (I didn’t even know such a thing existed).

XO

New Diagnosis

Okay, so when I first started this blog I was going to call it “Invasive Lobular Carcinoma” since that is the type of cancer I thought I had.  It is a more rare, unstudied cancer and I wanted to make the blog a resource for other women diagnosed with ILC.  I am going to leave the information that I gathered the past week up on the blog, but….

My “final” pathology report gave me a new diagnosis.  Now it says that I have Invasive Ductal Carcinoma. This is a cancer that starts in the milk ducts of the breast. It is the most common type of breast cancer.  I shouldn’t say that this diagnosis is final though. When I go to MD Anderson next week they will be doing their own research on the tissue, so we will see if they agree.

Another day, another paper vest.
At least we did most of the talking with clothes on this time.

When the oncologist told me it was IDC and not ILC my head started spinning.  I had been researching ILC the past week…but I think it was just the first lesson in how this journey will go. There are going to be lots of twists and turns, changes happening left and right. It sucks, I am not going to lie. I am a planner and I like to know exactly what is coming and how I will deal with it. In life we don’t often get that luxury and with cancer I don’t think that is going to happen.

So…on to IDC research. The oncologist thought June 27 was too long to wait for the surgery, so hopefully I can find some great surgeons to do it sooner. That is my goal for the week.  More on this visit later, but bottom line is they still think its Stage 1 based on what they know now and they are doing a big test on the tumor to see whether or not I will need chemo (fingers crossed on that one!)
XO

Crappy Easter!!!

We actually had a great day. Went to Coral Cove, which I think is my new favorite beach. Kids loved climbing on the rocks and exploring. We had a picnic and spent the day by the ocean, great for the soul! Good to get away from the computer and all the madness. But overall, I think I will always remember this as a crappy Easter.

Studies on Invasive Lobular Carcinoma

As I have said, I ‘m learning that this type of cancer is not very studied. And from what I have heard, there are not many (or any!) oncologists that specialize in ILC. I am going to keep this post going as a spot to post studies that I find.


 found this breast cancer scientist on Twitter, which led me to this site, some good stuff here. They focus their studies on ILC.
Early stage breast cancer/chemo