I never imagined, in all the times I thought about starting a blog, that this would be the subject. Wouldn’t have even made the list let alone the top 10. But, here I am, writing it anyway.
For those of you that haven’t heard the whole story, I’m going to lay it all out. Get comfy, it’s kind of a long one.
In March 2023, I noticed a lump in my breast. I won’t rant here about the importance of doing regular self breast exams but DO THEM. Seriously. It’s not hard and it could save your life. Anyway, I noticed a hard, decently sized lump that hurt. It was tender to the touch, made seatbelts even more uncomfortable, and got in the way of hugging people (which was the most annoying part for me – I’m a hugger). I scheduled an appointment with my OBGYN’s office for March 28th. When I described the lump and the pain, the doctor I saw kind of blew me off. I had been in there about 6 or 8 weeks earlier for another appointment and she wanted to know why I hadn’t said anything then. She also told me it was probably nothing and that some vitamin E oil should take away the tenderness. I was not satisfied with her answer so she ordered a mammogram and ultrasound to be safe. BE YOUR OWN ADVOCATE – ALWAYS. You might not be a doctor, but you know your body better than anyone else ever could.
I had my very first mammogram about a week later followed by the ultrasound. And I stumped every person that looked at it. Everyone was expecting to see a cyst or fibrous tissue, but it looked more like “trauma” despite me insisting that I had experienced no such trauma. They scheduled me for a core needle biopsy before I left the office. A little over two weeks later, I went back for the biopsy. They took seven tissue samples and had me schedule a follow-up with a breast surgeon (standard procedure). A few days later the doctor that performed the biopsy called with great news – benign capillary hemangioma! He said it was just an abnormal growth of blood vessels but it was nothing to be terribly concerned about. 
We went to see the surgeon the next week. She blew me off too. She read the report to us that I had already received the call about, didn’t bother really examining me because of possible swelling from the biopsy. She told me to put some anti-inflammatory gel on it for the soreness and come back in 6 weeks to see if that helped. Needless to say I was mad. I don’t know that she was actually rude, but she definitely came across as uncaring. I cancelled the follow-up appointment. 
After talking with some friends, I received a recommendation for another surgeon’s office. Because the mass was benign, I didn’t try to rush and make the appointment. I ended up seeing this new doctor about 12 weeks after the awful appointment with the first surgeon. She was wonderful. Caring and very thorough, she noticed that the mass seemed to be bigger than the imaging indicated. I agreed that it definitely had seemed to grow and hurt more. So she ordered another mammogram and ultrasound to see if the growth could be measured on imaging. I did the imaging a week later and was told everything looked the same, which was incredibly confusing. How could both the doctor and I feel something so much bigger than these fancy imaging machines could see? The doctor called a few days later. She basically said she didn’t really believe what those images were showing and ordered an MRI to get a better look at it.
The MRI was completed about 3 weeks later. When the doctor called with results, she said the radiologist saw nodules underneath/behind what we thought was a hemangioma and recommended another core needle biopsy. However, due to the fact that it was growing and causing so much discomfort, my doctor recommended a surgical excision to remove it and test it after. I was on board to finally get this “thing” out of me. So we met with the surgeon on September 5th and scheduled surgery for the 22nd. I got through the surgery well; the surgeon said everything looked great. We just had to wait for pathology to come back to confirm what we thought we already knew about it.
13 days later, I received a call from the surgeon. She told me that it wasn’t good news. Pathology showed that my seemingly annoying but harmless lump was actually a very rare form of cancer. A very aggressive cancer. Angiosarcoma. My whole world came crashing down in less than a minute. How could this be? Why me? Why now? Why this cancer? Then I called Caleb and asked him to meet me at home. I wouldn’t allow myself to Google a single thing. I wasn’t ready to know exactly what this rare, aggressive cancer was going to do and how fast it would do it. Caleb, however, did not, and the look on his face when he got home broke me. I spent the rest of the day in a fog until my appointment with the surgeon that afternoon. 
When we got to the appointment, the doctor didn’t have a lot of good things to say. Actually, she didn’t have ANY good news. I don’t remember all of that appointment, mostly just bits and phrases. “Uphill battle” and “5 years” and “do everything we can…” The problem was that she had never seen this before so she was only armed with the knowledge some brief online research could give her. She said she was referring us to a great cancer center in Boston. Then Caleb asked her if she knew when she the lump was cancerous when did the surgery (I had told him that she must have based solely on the lack of information she gave when she was finished…”everything went great” seemed lacking in information, even if it did go perfectly). The surgeon said she knew it was bad as soon as she opened me up AND DIDN’T SAY ANYTHING. I can’t entirely blame her, especially if she wasn’t exactly sure what she was looking at. But man, was I freaking pissed at her for days. I’m still mad, but not at any one person or thing. I’m just… MAD. And I get angrier every time I see the sad look in my husband’s eyes or the way my kids get scared when we have to share any details about what’s happening or when I think about how happy life was before this. Some days, I just wait for the moment where I get to wake up from this nightmare. 
But, I digress. That is how it all started and how we found out. If you learn anything from my ordeal, keep these two things in mind: 1) Pay attention to your body and do exams to find anything out of the ordinary; 2) Be your own advocate! I didn’t realize how important this was until now and I’m having to continue to do so. Do not let anyone try to tell you that you don’t know your own body. If something is wrong, find someone who will listen.