Hi @mk24
Thank you for sharing your story; I truly appreciate your openness. I can completely relate to the feelings of devastation and uncertainty that accompany a diagnosis of invasive lobular carcinoma, especially when you have a young child to care for. As a 49-year-old mother of a 9-year-old, I understand how heavy that burden can feel, and it’s entirely natural to feel overwhelmed during this challenging time.
I also faced a similar journey, having had a tumor in my left breast and some concerning cells in my right. After a couple of unsuccessful mammogram-guided biopsies on the right side, I made the decision to undergo a double mastectomy. Like you, the wait from diagnosis to surgery lasted about eight weeks, and was excruciating.
I too experienced sentinel node biopsies on both sides, and unfortunately, one of my lymph nodes was involved, which meant I couldn't avoid treatment. My KI67 score was relatively low at 1-2%, indicating a slow-growing tumor, yet I know how much these scores can weigh on your mind as you contemplate your treatment options.
It’s so important to remember that each cancer journey is unique, and your decisions regarding treatment are deeply personal. Your concerns about chemotherapy and its effectiveness for invasive lobular carcinoma are completely valid, and I understand the anxiety that comes with questioning the best path forward. I went through a similar period of procrastination that led to my own anxiety.
Ultimately, I decided to undergo the Oncotype DX test. While it can be expensive, this test analyzes a specimen of your tumor and provides insights into the chances of recurrence, as well as the potential benefits of hormone therapy and chemotherapy. My recurrence rate came back at 15% (with hormone therapy dropping it to 6%), and the absolute benefit from chemotherapy was estimated at just 2.7%. Interestingly, the hospital's computer had initially predicted only a 1% benefit.
I was reluctant to consider chemotherapy as well, but in the end, I opted for a short course of 4 cycles of a type that is unlikely to have serious long-term consequences. I felt that I should pursue every possible avenue, but I recognize that this decision is personal. While my husband is incredibly supportive and caring, he shares his uncertainty about undergoing treatment for a 2.7% benefit, illustrating how everyone’s choices are different. Whatever decision you make will be the right one for you.
I empathise wholeheartedly with your anxiety about the upcoming surgery and the choices that lie ahead, particularly concerning reconstruction options. It’s crucial to feel supported and well-informed throughout this process. I encourage you to have an open and candid discussion with your breast surgeon—make sure to voice all of your concerns, including any potential developments in your left breast. You deserve clarity and comfort in the decisions about your health.
Please remember that you are not alone in this. Many others have walked a similar path and are here to support you. Take it one day at a time and allow yourself to feel whatever emotions arise. You are stronger than you realise. Sending you hugs and strength as you navigate this journey.
