Put on Your Big Girl Panties and Advocate for Yourself!
Updated: Feb 4
When I was diagnosed with Invasive Lobular Carcinoma in February 2020, I did not know if I would need chemotherapy or radiation in my treatment plan. I have to admit radiation seemed much less daunting then chemo did. We all have seen movies like Stepmom, Dying Young, My Sisters Keeper and of course the most heart wrenching of them all... Terms of Endearment. These movies do there best to depict what all cancers must be like for women. They show them battered and bruised with no hair, gray skin and very little left in them to survive with of course all of their journeys ending in death. Since going through breast cancer I can not even watch the trailers for these movies let alone the movie themselves (do NOT get me started on the metastatic breast cancer commercials that are on constantly!) Unfortunately these depictions can be quite accurate and we all have heard the stories or know loved ones that are no longer with us because of this disease...but what about those of us that are not in this place with our diagnosis? We all ask ourselves will we look like this? Will we go through this? Chemo is scary and the unknown of it is even scarier.
We have come a long way in detection and treatment for breast cancer but with so many different types there also is many different types of treatments. Chemo is usually dependent on the type of breast cancer you have...are you estrogen and progesterone positive or negative and are you her2 positive or negative? Each one of these can be different and more than likely all the women you talk to will all have different types of cancer than yours. In fact, it was not until recently that I finally talked with a fellow survivor that had my exact type of cancer. This can make you feel like you are all alone and on an island. But you are not girl...I promise.
Lymph node involvement is another factor in which treatment you will have. Unfortunately for me 2 out of the 3 nodes they removed during my mastectomy did have cancer. I knew that since I had node involvement that more than likely meant chemo. My amazing surgical oncologist is the one that told me about the Oncotype Test for breast cancer and regardless of node involvement I still wanted this test to be done. The Oncotype test predicts how likely of a reoccurrence and if you will benefit from chemotherapy in addition to hormone therapy (femara or tamoxifen). This test is usually used for node negative patients but I still wanted to have the Oncotype test done on the mass they removed. Keep in mind this test is used for early stages of invasive breast cancer and may not be as accurate for larger masses. I personally think that chemo has been such a go to for years and there are many that do not need it or benefit from it which can be more harmful than good. Be sure to inquire with your surgical oncologist prior to a mastectomy and with your oncologist about the Oncotype test and see if it is right for you.
My treatment plan included chemotherapy as an "insurance" policy- meaning that because I had node involvement it was recommended I have chemo made up of Taxol and Taxotere just in case I had that rogue cancer cell that was still floating around. I have to admit I was relieved that I did not have to have Adriamycin, Cyclophosphamide and Taxol otherwise known as The Red Devil. This chemo cocktail is called Red Devil based on the bright red color and the horrible side effects for most. Nonetheless I was nervous thinking about facing 4 rounds of poison in my body after just having cancer removed but the thought that I could have these cells still in my body and in my lymphatic system was worse.
It is important to remain your own advocate in each part of this journey. I had no idea how many opinions I would get from family, friends and medical personnel. Each of them seemed to be different and I know they were lovingly shared but in the end the decisions are yours to make and they need to be what will make you happy. These decisions will begin early on with deciding what type of surgery you will opt for. Not all of us get to have the decision of lumpectomy vs. Mastectomy or even a Double Mastectomy. Depending on stage and type of cancer that decision could be made for you and the need to have the more radical mastectomy will be clear. Even if you are considered early stage breast cancer it is still YOUR choice to opt for a double mastectomy for peace of mind. I was first told they thought I could have a lumpectomy but I went into that first appointment knowing I was choosing a double mastectomy. In fact I believe I said that right after he introduced himself! The surgeon chuckled and said "it is your decision but I have to advise you that this more radical approach may not be needed". I understand why they tell you that but he had no idea what would keep me up at night and choosing a lumpectomy with fear it would come back in the same breast or the other one was more than I would be able to handle. It was after my MRI when the mass was larger than he thought that he suggested the mastectomy to which I said absolutely and make it a double! If you have read my other posts you will know that I left the local hospital system I was originally diagnosed in to go to another hospital system an hour and a half away because I wanted the best reconstructive outcome after my double mastectomy. This was my next step in advocating for myself. It was not easy. The original surgical oncologist was not happy. That is a red flag...run! It is your health, your body and you should go where you feel comfortable and most of all where someone listens to you and your desires. You are your best advocate- so put your big girl panties on (and be sure they are pink) and speak your mind!
Read Reconstruction: Finding the Right Plastic Surgeon where I talk about how I found the perfect plastic surgeon. Remember you don't have to just survive breast cancer but you can THRIVE after!