Sunday, July 28, 2013

No Chemo. Is this Over?

Two months ago I didn't have cancer in my left breast. 

Actually I *did* have cancer in my left breast but I didn't know it so I lived my life like I didn't have cancer at all.

Now I don't have cancer in my left breast because my left breast, the DCIS, two lymph nodes and the two "surprise" invasive tumors were removed on June 17th.

So I really don't have cancer in my left breast. And an MRI says I don't have cancer in my right breast either.

And I have just been told that chemotherapy will not improve my chances of being cancer free in five years. So there would be no benefit to taking my system down with a bunch of poison.

Does this make the battle over? I get to keep my hair. I feel good. I've been to a cancer survivor event. Am I done?

For some reason, it just doesn't feel that way.

I started Tamoxifen on July 17th, a month after my surgery.
Tamoxifen is a drug known as a selective estrogen receptor modulator or SERM. Tamoxifen looks and acts like estrogen to the cancer cells but doesn't feed it and therefore keeps the cancer from growing and/or spreading to surrounding tissue. Since both of my cancers (DCIS and invasive tumors) feed off of estrogen, I’ll be taking Tamoxifen to reduce the chances of recurrence. Sounds dramatic but at this point, this feels like a daily reminder of the cancer that was hiding in my breast.

But the biggest reminder comes any time I shed my clothing and see a beautifully healed eight-inch scar where my left breast should be. 

Mastectomy recovery wise, things are incredible. I'm back to walking, running, cycling - even rock climbing and bowling. I dodged the chemo bullet and I feel physically strong but, in the quiet moments, I sometimes feel worry. And dread. Worry about what's hiding behind or inside Pancho (breast number two) and dread that I will again one day hear the words "You have breast cancer." 

Intellectually, I read and digest the information that ranks my 'risk of recurrence' in the next five years as 8% as long as I'm taking the Tamoxifen. I also understand that Tamoxifen comes with an "FDA black box" warning and cancer risks of its own. I also understand Tamoxifen, for some people, is considered somewhat of a cancer dragon slayer. I also understand that some men and women choose not to take it based on side effects that negatively affect their quality of life.

But probably the most significant and relevant piece of information that I know for sure is that my breast cancer risk factors were super low in the first place. I eat well. I exercise. I avoid toxins in my home and garden. And, until January 2013 when my mom was diagnosed with Stage 2b invasive ductal carcinoma at the age of 63, I didn't have a family history of breast cancer.

 Yet the last two months have been very real. 

On July 25th, I had my first appointment with the reconstructive plastic surgeon. In the days leading up to the appointment, I hedged on whether or not I was ready for such a conversation. In the beginning, I'd been adamant about wanting simultaneous mastectomy/reconstruction. Since there were so many unknowns including node involvement, I was told a simultaneous reconstruction was not advisable. In retrospect, I'm pleased with the path of an independent mastectomy. I'd been ignorant of my options and really was trying to get on and get past something quickly. 

A month ago, as I submitted blood for my BRCA testing, I felt confident that if the BRCA results were negative, I would happily keep Pancho and begin the reconstruction process with Lefty. What I thought I had decided a month ago and how I feel now, are different. Today I’m not interested in a cosmetic surgery, only required surgeries that prolong my living a healthy life. Today I'm not confident, as I mentioned, that there isn't some cancer evil hiding in Pancho waiting for me to get to the whew-I'm-so-glad-I’m-done-with-that-shitty-experience point and then rear its ugly cancerous head. 

I know this isn't likely. 

I also know I'm not alone in the anxiety.

I’ve had some nightmares. I think every cancer warrior must.

Some revolve around a new diagnosis. Some revolve around the word metastatic.

But every single one of them revolves around me leaving my children motherless way too early.

Anxiety and a person's ability or inability to deal with it can lead to a prophylactic mastectomy.

 And, on this day, I'm mulling over my options.

Monday, July 8, 2013

Thirteen is my new lucky number.

I scored a baker’s dozen on the OncotypeDX...

... which means no chemo!

As the phone rang, the kids were explaining a LEGO structure and adventure to me. From my daughter's bedroom, we heard the computerized female caller ID voice identify the caller as, "Kai...ser. Foun...da...tion."

I ran to grab the phone in the kitchen and immediately began pacing.
“Hi there! You’re calling to give me the good news,” I answered by way of greeting, certian this was Dr. J calling with results. “I got a 16, right?”
“No,” she said, barely pausing. “You got a 13!”

I’m sure I squealed like a little piglet at some point in time but, mostly I remember exclaiming, “Yay! I’m so glad. I’m SO glad. Thank you. I’m so GLAD” while tears rolled down my cheeks and I did a little jig in the kitchen.

With all the hullabaloo, the kids broke themselves away from their LEGO adventures and ran out to the kitchen.
“Mom, it sounds like you won the lottery."
“I did. I DID. No chemo!” I smiled through the tears of relief as I hugged them both.

Dr. J and I chatted a few minutes longer. A little about starting Tamoxifen, a little about more blood work I should have done and a little about our family’s upcoming camping trip to Sequoia National Forest and Kings Canyon National Park with my continued "I'm so GLAD" peppered in between.

I remember absolutely nothing specific regarding our conversation beyond the number 13, so I’ll be sending her an email asking what I’m needing to be tested for and when.

Meanwhile I’m going to revel in the lowest score I think I have ever received on a test (up to and including that really bad differential equations final!) 

Here's to being on the low end of 100!

First Official Oncology Meeting - Let's play a numbers game!

I love, love, love my new oncologist!
A new oncologist? Already Stace? But you only met the first one once.

While very nice and certainly capable, she came across as low energy and I seemed to put her ill-at-ease with my jokes. 
Basically, we just didn't mesh.
So, at the  6/28 post-op follow-up with my surgeon, I asked for a new one. 
Actually, it played out a little differently:

"So, I'd like YOU to be my oncologist but, since that may entail more schooling for you, I'd be happy to take a recommendation," I announced.
"Who do you have now?" she asked.
"Dr. A is who we met at the 'wacky Wednesday' event on 6/5," I said. "But she didn't really get my jokes and in the couple of times we've seen her since, she still didn't seem to understand my vibe. I think I scared her."
"Hmm. She's good," she smiled.
"I need someone who is a bit more energetic, who understands that I'd rather laugh than cry at all of this," I said.
"I send all of my favorite patients to Dr. J.," she deadpanned. "Dr. J is no nonsense, very straightforward," she explained. "I think you'd like her."
"So..." I began, "How could I start THAT process?" I asked.
She was already typing into the computer.

My first appointment with Dr. J was on Tuesday, July 2nd and the expectation was a review of the pathology and histology reports as well as laying out the rest of the treatment plan. Much of the pathology information had already 'leaked out' and I knew the radiation doc had signed off on me - no need to radiate what's no longer there. I also knew hormone therapy would be a recommendation.

And then there was the topic of chemo.

When all this began, chemotherapy wasn't really on my radar. More to the point, the idea of chemo scared the shit out of me more than surgery. I've spent my life being relatively picky about what I put in my body; avoiding chemicals and pesticides; shunning artificial sweeteners and anything else that could be considered a carcinogen.

A helluva lot of good that did, right?

Chemo drugs are just poison and I wanted nothing to do with them.

Thankfully, chemo wasn't part of a treatment plan for DCIS. But, when invasive cancer was found in the breast, everything began to change.

As I mentioned before, there were two areas of invasive cancer found in Lefty after the mastectomy and the DCIS was diffuse and pervasive as expected. 

Officially, these are the specifics:

Infiltrating ductal carcinoma + Ductal carcinoma in situ

The cancer was restaged from a 0 (DCIS) to a 1B (not so bad) with a grade of 1 (which is awesomely low). The larger of the two invasive tumors was 0.9cm and, while there were cancer cells found in the sentinel node, the low number of cells reflect a 'node negative' result and the axillary node was cancer free. All of this is very good news - once you get your head around the invasive cancer bit.

But chemotherapy is now a very real option.

A few years ago, based on the above information, chemo would have been the recommendation. Today there is something called the Oncotype test which can help determine whether or not chemo will make a difference with the cancer cells I've got. Results are given as a number between 0 - 100. The higher the number, the more likely I would benefit from chemo. 

Unfortunately the scale is a little wonky:
  • Low recurrence: <18 li="">
  • Intermediate recurrence 18-30
  • High recurrence >30

So, we could play the numbers and say I've got a 17% chance of NOT needing chemo. 

Instead, I'm sticking by the fact my favorite number is, and has always been, 16.
*fingers crossed*

Results of the oncotype testing should be back in the next week.

If required, my chemotherapy course, would be short. An infusion of Cyclophosphamide and Docetaxel every three weeks for four sessions. 
Essentially twelve weeks total. 
I feel pretty good thinking that the worst case treatment scenario really isn't that bad - I can do 3 months of anything.

Meanwhile, I'm walking, hiking and, as of this weekend, now back on the bicycle! Since surgery three weeks ago, I'm focused less on the simple mastectomy recovery and more on really just getting back to living life the way I enjoy living it.