Here We Go Again

How is it possible that my eyelashes are falling out again? Almost 5 months to the day since finishing chemo, when I was washing my face at night, I started to notice my eyelashes on the facecloth. Thank goodness for the internet and other blogs I had read that warned me this was coming.

Apparently a lot of women experience losing their eyelashes and eyebrows a second and even third time post chemo because eyelashes go through the process of loss and regrowth in repetitive cycles. After chemo, your eyelashes all grow in at once which means that as part of their cycle, they also fall out all at once. This usually happens about 4-5 months post chemo. Based on what I've read, the only thing you can do is to wait for your body to naturally restore itself after your treatment meaning that this could happen a few more times...great! I was hoping the Latisse I had been using would help but no such luck.

At least both my brows and lashes have just thinned dramatically but not fallen out completely. Nothing that a little mascara, eye liner and eyebrow pencil can't fix. What really would have helped is if one of my many doctors would have warned me about this. Sometimes I think they forget that hair loss, although maybe less traumatic than some of the other side effects from cancer treatments, does have a profound impact on people and warning them about things like this goes a long way. I guess that's what blogs like this one are for!

Don't Judge a Book by it's Cover

I saw this posted on Instagram and could totally relate. Over the last few months, I have received so many compliments about how good I look which is always appreciated and nice to hear but at the same time, it makes me wonder if people really realize what I have been through. Sometimes I think people, myself included, look at someone who is young, fit, vibrant and can't imagine that they are fighting cancer or lyme disease or crohn's or whatever the case may be. I am the type of person that tends to downplay things so when I have a bad day or admit to being in pain, it can catch my loved ones off guard. This breast cancer experience has given me such a deeper appreciation for what other people might be going through even though they don't appear to be "sick". What is that old saying? Don't judge a book by it's cover. 

This has especially rang true for me recently as I have finished treatment. My employer has been quick to call and advise that it is time to start thinking about a return to work plan and while I understand their position, it's all happening a little too quick for me. While I have been off, I have kept in touch with co-workers and I know what they are thinking....she looks fine, she should be ready to come back to work soon, it's already been 9 months. The truth is, I do look fine, in fact I have lost 15 pounds and probably look better than I did before cancer but mentally, I'm just not there yet. Getting ready to face co-workers I haven't seen, keeping up my exercise routine and healthy eating habits while sitting in an office for 8 hours a day, not allowing myself to get stressed out by my job or the possibility of cancer returning...all of that just feels like too much right now. So instead of worrying about it, with the remaining time that I have off, I am going to continue looking fabulous and work on getting my mind to feel the same way.

Is PCR Everything?

When reading through articles, especially about Triple Negative breast cancer, everyone places so much emphasis on a PCR (pathologic complete response). When you have neo-adjuvant chemotherapy, one of the benefits is that the doctor can monitor your response by measuring the tumor (either by feeling it or with an ultrasound). The definition of a pathologic complete response can differ depending on the study being done, which presents an issue in terms of finding a consistent way to classify it. Most studies define it as the absence of residual invasive disease in the breast and in the axillary lymph nodes at the completion of the neoadjuvant treatment. This definition allows for in situ carcinoma, also known as DCIS, to still be present.

Based on the information I have gathered, achieving a PCR is more common in Triple Negative breast cancer because this type is more sensitive to chemo. Studies state that anywhere from 20-30% of women who's cancers lack estrogen, progesterone and HER2 receptors will achieve a PCR. Surely you have read articles like this one stating that patients who achieve a pathologic complete response with neoadjuvant therapy tend to have a very good prognosis. These women are at much lower risk for subsequent distant disease recurrence.

This is all fantastic news for those women that achieve a PCR but what about the other 70-80% of us? Does the fact that we had residual disease mean that we are doomed? Hearing about PCR over and over again, knowing that I did not have a complete response, does not make me feel good and surely there are others that feel the same way. Perhaps you have asked your Oncologist the same questions I have - is there anything else I can do? Do I need more chemo?

There are some women whose doctors will advise that more chemo is recommended but I am not one of them. I have seen 2 different Oncologists now who both said there is no concrete research showing that additional chemo has a long term benefit in terms of overall survival. When weighing the benefits versus potential toxicity, in my case, it is not recommended. So what do I do now? Unfortunately the medical response is "we wait and see". Frankly, I think that is bullshit and the wait and see approach doesn't work for me. I don't want to get back to living my life and forgetting this whole ordeal ever happened. What kind of advice is that anyway?

More to come in a later post about additional steps I am taking to prevent a recurrence. One article that I did find helpful in explaining the prognostic significance of residual disease can be found here: http://jco.ascopubs.org/content/25/28/4414.full. Using the residual cancer burden calculator, it shows that I fall into RCB-I. Maybe I am an underachiever and did not attain the almighty PCR but this does give me some hope that there is light at the end of the tunnel.