Earlier this week, I participated in a focus group on Triple Negative Breast Cancer (aka TNBC) — which is the type of cancer I have.
Initially I was relieved to learn that my cancer was triple negative (meaning that it isn’t hormone positive) because that meant I didn’t have to go on Tamoxifen (or any hormone blocker, for that matter) for 5-10 years. Tamoxifen inhibits estrogen production for estrogen positive cancer patients. The theory is if you block the hormone that feeds your cancer, you should be good to go. I, selfishly, was happy I got to skip the hormone blockers because Paul and I still want to have a family and I want the chance to carry the pregnancy. So I thought triple negative was the best outcome one could hope for in my situation. Sure, I had to do chemo and lose my hair and go through all the chemo crap. But at least I still have a chance of having a baby.
Well, I’ve been learning a lot about my subtype of cancer since my DX and it’s actually not so great. It’s very aggressive and has a very high rate of recurrence. In addition, not everyone with it has a great survival rate right off the bat. One of the trickier things about my cancer is that nobody knows what feeds it. So post-chemo, I don’t get the luxury of taking a pill that will stop the one thing that makes cancer grow in my body. That’s incredibly scary to me.
So the focus group got me thinking. If I didn’t know that much about TNBC until recently, surely none of you did either (I’m sorta thinking it was better when I was blissfully ignorant about all this stuff. But I have to face facts and statistics at some point. Since I’m nearing the end of active treatment I suppose this is a natural point to do that). Not only that, I bet many of you didn’t know there are many subtypes of breast cancer and each has different treatment and different survival/recurrence rates. I figured I’d give you all the lowdown on they type of cancer I have. So are you ready for class time with Andrea? Here goes!….
Below are summaries on TNBC from a few different websites. I only took excerpts from these sights as some of them got really detailed. If you want to read all of the info, just click on the hyperlink. This part is long, but worth the read.
Breast cancer is not one disease. Rather, it is a group of many different diseases each defined by combinations of receptors. Receptors receive signals from the body that instruct cells to carry out specific actions. The cells of the normal breast respond to the female hormones estrogen and progesterone and these hormones instruct the breast cells to make milk, for example, in the setting of pregnancy. When breast cancers develop, many times the cancer cells retain these estrogen and progesterone receptors. About one third of the time, however, breast cancers develop and have lost these receptors (estrogen receptor (ER) negative and progesterone receptor (PR) negative). HER2 is another receptor present in the normal breast, but in approximately 25% of breast cancers it is present in excess amounts (HER2 positive).
Triple negative breast cancer is a subtype of breast cancer that lacks these three important receptors that are used as targets for cancer treatment. These receptors are important because they reveal where the cancer is most vulnerable and help determine how to best treat it. Since triple negative breast cancers lack the presence of all three of these receptors, this subtype of breast cancer is more difficult to treat and more likely to recur.
Triple negative breast cancers can occur in women of any age, race or ethnicity. However, triple negative breast cancers tend to be more common in women of African, African-American, Caribbean, and Hispanic descent along with pre-menopausal women, and women with BRCA1 mutations.
Triple negative breast cancers cannot be treated with estrogen-blocking medications (e.g., Tamoxifen or Arimidex) that block the estrogen receptor and progesterone receptor proteins. They are also not treatable with Herceptin, a drug that has proven helpful in treating breast cancers that possess excess amounts of the HER2 receptor protein. Thus, the only remaining treatment options are surgery and standard chemotherapy drugs. While chemotherapy is effective for many triple negative breast cancers, some triple negative cancers are resistant to standard chemotherapy medications or quickly come back after chemotherapy is completed.
It is now commonly understood that breast cancer is not one form of cancer, but many different “subtypes” of cancer. These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors.
Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name “triple negative breast cancer.” On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.
Triple negative breast cancers comprise a very heterogeneous group of cancers. There is conflicting information over prognosis for the various subtypes but it appears that the Nottingham prognostic index is valid and hence general prognosis is rather similar with other breast cancer of same stage, except that more aggressive treatment is required. Some types of triple negative breast cancer are known to be more aggressive with poor prognosis, while other types have prognosis very similar or better than hormone receptor positive breast cancers. Pooled data of all triple negative subtypes suggest that with optimal treatment 20 year survival rates are very close to those of hormone positive cancer.
Triple negative breast cancers have a relapse pattern that is very different from hormone-positive breast cancers: the risk of relapse is much higher for the first 3–5 years but drops sharply and substantially below that of hormone-positive breast cancers after that. This relapse pattern has been recognized for all types of triple negative cancers for which sufficient data exists although the absolute relapse and survival rates differ across subtypes.
Standard treatment is surgery with adjuvant chemotherapy and radiotherapy. As a variation neoadjuvant chemotherapy is very frequently used for triple negative breast cancers. This allows for a higher rate of breast-conserving surgeries and by evaluating the response to the chemotherapy gives important clues about the individual responsiveness of the particular cancer to chemotherapy.
Triple negative breast cancers are generally very susceptible to chemotherapy; however, in some cases early complete response does not correlate with overall survival. This makes it particularly complicated to find the optimal chemotherapy. Adding a taxane to the chemotherapy appears to improve outcome substantially.
Triple-negative breast cancer accounts for approximately 15%-25% of all breast cancer cases.
Among younger women African American and Hispanic women have a higher risk of TNBC, with African Americans facing worse prognosis than other ethnic groups.
In recent years, Triple Negative Breast Cancer has sparked interest in the news where instead of calling the tumor ER-negative, PR-negative, and HER2-negative; researchers began using the shorthand term, “Triple Negative,” dubbed the “new type” type of cancer. Being Triple Negative, you don’t have a targeted therapy and your only treatment option is chemotherapy.
Triple Negative is seen in about 15% of all breast cancers. Triple Negative is a very aggressive cancer that tends to strike younger women, pre-menopause, especially among African-American women and women who have BRCA1 mutations. The tumor tends to be fast growing and is less likely to show up on an annual mammogram. TN is more likely to metastasis early on; has a high rate of recurrence in the first 2-3 years from diagnosis and has a poorer prognosis than other types of breast cancer due to lack of specific, targeted treatment for TNBC.
Based on all of this, I bet you’re thinking to yourself “OH SHIT” (with a Buffalo accent, of course) — well, me too! The biggest thing I grapple with is what the heck will I do after active treatment? As much as I hate chemotherapy every week, there is something very comforting about knowing we are actively fighting any cancer growth in my body. Once I’m done with chemo, I’ll be out there without a safety net. No pill to take. What then? Will this cancer metastasize in my liver, bones, lungs or brain? Are there tests I can do to see if this is happening, or will it just happen and I’ll be a goner (BTW, the one thing I DO know is that if this particular cancer mets to another part of my body, they can treat it but they cannot cure it — fuck. I know.). See why I need therapy ASAP. This is a lot to process. But I need to live my life and not be crippled by these thoughts. Yet, these this information is my reality. So how do I balance all of this?
I’ve started to open the door to these conversations with my oncologist. He said that we will come up with a survivorship plan for me. He tailors each plan to fit the person’s needs (read: neurosis). As we build my follow-up care plan, I’ll be sure to keep you all posted.
Far as I can tell, no, there aren’t really any prophylactic tests that can be done; if I get cancer again, I’ll just get cancer, a test likely won’t catch it. That said, you bet your ass I’m going to ask for echo cardiograms, PET scans and bone density scans — they can’t hurt, right? I suspect, however, much of my survivorship plan will focus on diet and exercise recommendations — but we’ll see.
I’ve also learned that meeting and talking with other TNBC survivors is super helpful. In addition to my time in the BAYS support group, I am going to try and start a local TNBC group based off all of the women I met at the focus group earlier this week. We face a unique diagnosis and can really learn from one another. You know the saying, “information is power”. My fellow TNBC sisters can teach me a lot, of that, I am sure.
If you’re still waiting to exhale after reading this, that’s ok, I am too. Join the club! For now, I’ll go back to focusing on the present and getting through chemo as unscathed as possible. One day at a time, one day at a time….
So moral of the story is, if you know somebody else with BC, be sensitive to the fact that every single cancer patient is different. So telling somebody fighting the good fight that you “have a friend who acted like it wasn’t happening and just soldiered through her chemo while working full time, and now it’s behind her and, yes, while she is minus one boob, she is just fine”. Or my other favorite one “if you’re gonna get cancer, breast cancer is the best one to get b/c it’s so common and easily treatable.” Please know that you might be speaking out of turn and your story may not make your friend feel better, in fact it might make him/her feel worse about themselves. I hope this post informs all of you out there that there are many types of BC and until your friend fully understands, comprehends and shares with you, his or her story, don’t presume to know based on your prior experiences. Just be there for that person in a positive way. That’s the best thing you can do.