Leap Day

Spent most of the day having a bone scan and CT scan of my chest/abdomen/pelvis.  Results in 2 days.  Home in time to meet the bus.

Received these really beautiful flowers and a lovely note from “friends of your Mom.”  Thank you so much!

Also caught up with my dear friend Kris.  We met in our early 20′s, when we were both hostesses in Buckhead.  Only I had a day job, too, at an ad agency.  Somehow I managed both jobs while still going out with Kris to dance clubs at night (and now we’re in our 40′s doing Zumba - hah!).

All – I feel the good vibes!
Nicole

Outdoors = Good Therapy

All things considered, today has been a great day!
Emory confirmed an appointment for us this Thursday with oncologist Dr. Ruth O’Regan.
I caught up with 2 dear friends and ran 4 miles along the Chattahoochee River.
I found a whole bunch of triple negative bc survivors at Young Survival Coalition (support group recommended by my surgeon).
I was read to by our 6-year-old and listened to our daughter sing her multiplication tables.  And now we’re off to pee-wee baseball.

Joey and I continue to be overwhelmed by the outpouring of love and support.  Thank you all so much.

Nicole

2/27 Appt with Dr. Bowen

Today we met with Kristina Bowen, a medical oncologist with GA Cancer Specialists.  She confirmed what we’ve heard to date and recommended “dose-dense” chemotherapy.  Also agreed with chemo first and a double mastectomy.  Didn’t rule out radiation after surgery, but that call will be made later.

Her recommendation is 4 treatments of AC (Adriamycin and Cytoxan) followed by 4 treatments of Toxol.  Plus, 567,849 other drugs to help with the side effects.  I’d go in for treatments every 2 weeks – 14 wks total.  Spring Break in St Thomas is definitely doable and, depending on how I feel (and a sweat-proof wig!), I may even be able to continue teaching Zumba.  Surgery would come a couple of weeks after the last treatment.

We chose to go ahead and schedule a bone scan and a CT scan of my chest/pelvis/abdomen for this Thursday.  Other than the markers of the original tumor (and cancer in the one lymph node) that mean it’s fast-growing and has a high chance of spreading, no one has given us reason to believe that there’s already cancer in my bones or organs.  But these scans will verify that.

We’re still trying to see Dr. Ruth O’Regan at Emory.  The pace is frustrating.  If we weren’t interested in exploring clinical trials, I could start chemo as early as next week.  I had some bloodwork done today and I will have a port inserted into my chest via outpatient surgery as soon as we say we’re ready.

Back to clinical trials.  We found out that another doc in Dr. Bowen’s office is participating in a triple negative trial – I would get the same chemo treatment but also might get (it’s randomized) a drug called MM-121 at the same time.  We still want to see O’Regan, but we made a “research consult” appt with this oncologist for March 5.  The info on trials is very complicated and, while the primary treatment you get might be the same, it adds on waiting, and lots of extra tests.  Tough to weigh it all.

A dear friend sent me a joke today.  If you’ve hung in there and read all of this blech, then you deserve a chuckle, too!

Random guy says, “I got in a fight with my wife last night and it was totally my fault.  She asked me what was on the TV and I said ‘dust.’  Didn’t go too well after that.”

Nicole

Update From Joey

We are excited to finally get some positive news, although there is bad news as well.

We got a call last night with results from two more tests: an MRI in which they put a fluid into Nicole’s chest that “lights up” in the MRI anywhere that there is cancer, and a biopsy of a lymph node near her left breast that was enlarged and suspicious looking to our surgeon.  First the bad, but expected news – there is cancer in the lymph node, so it has spread a little bit.  The good news, however, is that there was no evidence of cancer in any other lymph nodes, which gets her a score of “N-1″ which means that the spread is contained to only one or a few lymph nodes.  We also got a clean scan of the right breast, which is great, and they confirmed that the only cancer evident in the left breast is the tumor we have already identified.  They also put the tumor at “T-1″ which means they still think it is small (under 2CM).  Our surgeon thinks the cancer stage is II-A or II-B.  That means a small or medium size tumor (we are close to 2 centimeters, which is the break line) that has spread into one or more adjacent lymph nodes.

Also, we have found out that ”triple negative” breast cancer is pretty rare (15% to 20% of the cases), and essentially, it means that a lot of the drugs that are proven to be successful at keeping cancer at bay don’t work in this case.  For example, estrogen is fuel for cancer growth, so you can take a drug to mitigate your production of estrogen in many cases, which helps.  Nicole’s cancer is not sensitive to estrogen, which means that those drugs won’t help us.  Most of what we have found indicates that chemotherapy is the primary treatment for this type of cancer.  There are a lot of promising medicines going through various stages of clinical trials, though, and we are looking into those.

Next steps are meeting with two different oncologists.  We have an appointment with Dr Kristina Bowen, a referral from our primary surgeon and a friend of a friend, at Georgia Cancer Specialists on Monday morning.  We’re also having Nicole’s records sent to Emory to Dr. Ruth O’Regan, a widely-published clinical researcher with a specific interest in triple negative breast cancers.  We are eager to meet with both and hear their counsel.

Thanks as always for the support.

Joey

My Cancer Diagnosis

On this page, my husband and I have decided to update our friends and family who want to know about my recent cancer diagnosis and our progress.  This doesn’t mean we don’t want you to check in with us - in fact, we really appreciate the phone calls and messages.  But it is a convenient way to distribute the info that is coming so quickly and seems to change daily.  Two weeks ago – February 6 – I found a lump above my left breast, by complete accident (please, my friends, examine yourselves every month).  I was ready to leave the house and absentmindedly touched my chest to make sure the tiny bumps I’d seen earlier (heat rash from exercise?) wouldn’t be visible through my V-neck shirt.  Instead, my fingers brushed against a hard, bigger-than-pea-sized-something under my skin.  I knew right away that it shouldn’t be there.

Ironically, I’d just scheduled my annual screening mammogram the day before.  So I changed the appointment to a diagnostic mammogram.

Fast forward 2 days, and the ultrasound that followed the mammogram (routine when you or your doctor feels something) confirmed that the mass was solid and not cystic or liquid.  A biopsy on Valentine’s Day confirmed that the tumor was cancer, “infiltrating ductal carcinoma.”  The size of the tumor on ultrasound was 1.4cm, so they were hopeful that it was Stage 1.  It was strongly recommended that I find a surgeon.

My OBGYN and several friends recommended Breast Care Specialists in Atlanta out of Northside Hospital.  Joey and I met with Dr Carrie Stallings on 2/22.

We found out that I have “triple negative” breast cancer, which means it’s not estrogen sensitive, not progesterone sensitive and not Her-2 positive.  My mom was diagnosed with Her-2 positive breast cancer at age 56 – she’s 61 and healthy today.

Other news at this visit that we weren’t bargaining for:  The Ki-67 Index, or proliferation rate, of the tumor is 78%, so the odds of the cancer spreading are high.  Also, when the surgeon examined me she felt an enlarged lymph node.  I stayed to have it biopsied (results in a few days), but it seemed to us that she was sure it has cancer in it, too.  That would make it at least Stage 2.  We also scheduled an MRI to check the other breast.

As far as treatment goes, Dr. Stallings believes I’ll have chemo in addition to surgery.  Whether surgery is a lumpectomy or mastectomy is up to us.  We were hoping to leave with a surgery date, but it’s already horribly clear that nothing about this will be simple.  If we choose mastectomy, they do reconstruction at the same time, so it needs to be coordinated with a plastic surgeon.  And there’s also a question as to which comes first – chemo or surgery.  The surgeon doesn’t have a strong opinion either way, but an oncologist likely will.  So now we schedule appts with an oncologist and a plastic surgeon.

Our very charmed life has been completely rocked.  We thank all of you for your prayers and support.

Nicole