March 3^rd was Triple Negative Breast Cancer Day. This is a fundraising day dedicated to awareness and donations exclusively for triple negative breast cancer. I know I missed it, but the good news is, you can contribute to the cause at any time, and The Triple Negative Breast Cancer Foundation actually encourages donations throughout the month of March.

You may not know that triple negative breast cancer {TNBC} is the most aggressive, least researched of all breast cancers. It typically affects younger women, and breast cancers in black women tend to be triple negative more than white women. Many women don’t understand that there are several different types of breast cancer and your treatment options will depend on the type you have.

Also to note here: Your breast cancer is yours. It is made up of your physiology. There is no one else like you. While beast cancer diagnoses, treatment and outcomes can be similar, your tumor is unique. What I’m trying to say here is, don’t get caught up in the negative information out there.

Breast cancer thrives {is driven by, fed, fueld, receptive to whatever term you choose to use} either by hormones or a protein called HER2. If you have a hormone receptive breast cancer, your cancer is growing because of your estrogen {ER} or your progesterone {PR}. In a TNBC diagnosis this would be ER-/PR-.

HER2 receptive cancer would be HER2+. In a TNBC diagnosis, this would be HER2- {there is also triple positive breast cancer}.

So, we have: ER-/PR- HER2-

Hence the triple negative. This also means doctors, researchers, scientists, don’t know what is fueling TNBC.

Hormone receptive cancers can be treated many different ways, including with a pill called Tamoxifen. Tamoxifen is taken for five to 10 years and it’s used to lower the chances of a recurrence.

When I was diagnosed with TNBC, my initial biopsy results were:

ER – 1-10%

PR – 2%

HER2- 0%

Because my hormone numbers were so low, we treated it as a triple negative. I did four rounds of AC chemo {10/10 do not recommend}, 12 rounds of Paclitaxel, double mastectomy, and 6 rounds of Xeloda, a chemotherapy pill.

Chemotherapy is Poison

The AC chemo is so strong it has to be administered by hand, by a nurse wearing hazmat protection. It is purposely colored red so that if you throw it up, whatever it touches can be cleaned up, thrown away, and treated as hazmat material. After taking the AC, you are knocking on death’s door, but good news, they slowly start bringing you back.

The Paclitaxel, or Taxol as it’s referred to, is also poison, but it’s administered through an IV. Also, started by a nurse in hazmat protection. This one is a lot more tolerable than what you just went through for two months with your BFF AC, but it’s still poison.

I had a small amount of disease at the time of my surgery and those biopsy results were:

ER – 0%

PR – 0%

HER2 – 0%

A true triple negative. My oncologist was happy we had treated it as such, but told me I could start taking Xeloda, which had recently been approved for triple negative breast cancer patients who had gone through neoadjuvant chemotherapy {chemotherapy before surgery} and had residual disease at the time of surgery.

Then she left the building. Moved to another job an hour away, but took a few months off before starting her new position. I was referred to someone else who handled me while I was on Xeloda.

The Xeloda is also poison. Don’t listen to anyone who tells you they had a friend who took a chemo pill and life was great. It is much better than the two liquid options, but it’s not easy by any means. For one, the pills are pretty big. Secondly, you take three in the morning and three at night. It’s a lot. You do this for six to eight cycles, each cycle being three weeks – two weeks on and one week off.

I was told no one ever makes it to eight cycles because the side effects become too bad. I made it to six.

When I was done, I was informed I was on the road to survivorship, handed a survivorship packet and was walked to the door. Nothing about it felt right. My TNBC also meant I was at a higher risk for recurrence and you’re just telling me “good luck and goodbye?!”

Recurrence means cells that were part of the original tumor will break off and hide either in the breast, or in another part of the body. They can stay hidden for a short time or a long time, until they start to be active again.

I started to have what is commonly known in cancer patients as “fear of recurrence.”

Basically, anxiety that your cancer is going to come back. And then more anxiety because you aren’t supposed to be anxious or your cancer could come back. TNBC survivor benchmarks are two and five years. Once we pass the five-year mark, chance of recurrence goes way down and we are considered cured. So, I planned on being anxious for five years.

Then I realized that was stupid so I online stalked my original oncologist until she was taking appointments at her new office and I drove an hour to go see her. We met for over an hour and went through my case, piece by piece.

We also combed through the CREATE – X study, which was the study on taking Xeloda for TNBC. She told me as it currently stood, I was at 90% cured. Of course, I could have anxiety about the other 10%, but she thought those were great results. It helped ease my concerns.

We also decided I was a candidate for Tamoxifen because my initial biopsy results did have a small level of hormone-receptors, and those cells could be hiding. I am on a five-year regime. This is also a tough medication for many women, but others have no side effects. I am lucky to be in the latter camp. I am extremely happy with my care and the decisions we have made.

I hope I’ve helped shed some light on what is a very scary disease. Research is happening very quickly around TNBC, and I believe more people are aware it. But, that being said, more people need to be aware that there are different types of breast cancer and they are treated differently. And more money needs to go specifically to TNBC research.

If you are able and willing, please support the Triple Negative Breast Cancer Foundation. My daughter and I thank you.

xoxo