Love for Caroline

Hey everyone. A friend suggested this as a place to help keep people updated on my cancer journey. I have stage 3 renal cell carcinoma (kidney cancer). Since everyone is finding out at different times along the way, I'll tell you about the ride so far. In August of last year I had a CT to look at things prior to having a hysterectomy in September. The radiologist noted a small mass in my kidney in the report. None of my care team commented on the mass, neither did the team for my hernia repair in December. At the end of January my PCP read the report and told me I should have a follow-up MRI. I finally was able to get in for that June 16. On June 18th I read the results at work showing that the mass had grown and there was also a suspicious lymph node involved. By the next evening, due to Mac's research, we had a suspicion that I had HLRCC. (Mac, for those of you who don't know, is my fiancé! We got engaged on May 4th, supposed to get married in November... obviously that's up in the air right now, but he's amazing, and I love him so much!) HLRCC is Hereditary Leiyomyomatosis and Renal Cell Carcinoma. It is a rare genetic condition (like 300 families in the world) that if you have full expression of it can create a trifecta: uterine leiyomyomas (fibroids), cutaneous leiyomyomas (smooth muscle growth in your skin) and renal cell carcinoma. 1. I have had 4 surgeries for the uterine leiyomyomas, I kept growing them prolifically, culminating in having to have the hysterectomy last fall because there were so many there wasn't really any normal part of my uterus left (This was very difficult. I believe in waiting for marriage to have sex, and that it is a wonderful thing within that relationship, and have also always wanted kids, so having to have that taken away before I even got to try and had finally found the man that I wanted a life with has been a very difficult thing to process. There has been a lot of grief and emotional processing that at times still hits me. Mac was with me every step of the way, also processing his own emotions related to the implications for us, but very supportive.) 2. The cutaneous leiyomyomas tend to grow in clusters, and most people develop them by their 20's. I had my first one biopsied in high school and have continued to grow them with the largest section in a cluster on my left calf. 3. Then the renal cell carcinoma.