Hello,
I was diagnosed 02/11 with IDC grade 3. I had a double mastectomy on 03/18. I had tested positive for a RAD51c mutation. My sentinel node was positive so my surgeon took more nodes. Waiting on pathology. Her office called this morning to let me know I have a full body CT and bone scan tomorrow morning. I am scared.
Hi there @BeGinagain
My diagnostics and treatment have been fairly similar to yours, I’m just a couple of months further down the line, after left side mastectomy. I don’t have your gene mutation but have positive nodes, which will require surgery after my chemo. I’d coped reasonably well with everything, until I faced getting the results from the CT and bone scans, I really was fearing the worst. But the bone scan was actually clear, and the only significant finding on the CT was the lymph node, which seems to have grown significantly since my surgery in November. It’s not easy, but try not to second guess your scans just now. They will give your medics a bit more info and help to target your treatment. You have to lie very still on the trolley for each, just close your eyes and try to work through a visualisation of something pleasant! Or plan a nice treat for after your appointments. Best wishes for tomorrow and let us know how you get on XX
Hi
If it helps, a full body CT scan is routine after a mastectomy, especially if there is node involvement. It may indicate that you need chemotherapy rather than it being an option. A bone scan is standard before or early into chemo. Neither means you have metastasis, unless your oncologist has suggested this. Lymph nodes that are infected are just doing their job - trapping the cancer cells to prevent them spreading to other parts of the body. I had 19/21 lymph nodes infected and my CT and bone scans were clear of any spread. This isn;t metastasis. That is when breast cancer cells are found elsewhere in the body, such as the liver, bones or brain. It does happen occasionally at this early stage of treatment but having a scan doesn’t mean they are expecting to see metastasis. Scan are also used to confirm there is no spread.
I hope that reassures you a bit. The wait for the results can be excruciating so I’d suggest you practise being calm - Headspace and Calm are both NHS-endorsed apps with things to help you. There’s meditation, yoga, mindfulness, running, anything to help you get a break. My favourites are some of the videos on YouTube by Progressive Hypnosis. They focus on diaphragmatic breathing as a means of relaxing. I listen to one every day after my morning meds and it gives me a good two hours of no stress at all. Actually I’m pretty laid back about things now so maybe it’s working on other parts of my psyche!
I hope everything goes smoothly for you. It’s all manageable and usually there is no reason to expect worse news. But better to know now than to wait till it’s widespread! Take care of yourself
Jan x