I finally got the call back from my mammogram. This wasn’t just any mammogram.. it was the first one post diagnosis. I don’t recall ever having to wait more than a week for results before. Usually my doctor would call in a day or two to say all is well (or not..in the case of last year’s) and then I would get the generic pink form letter from radiology confirming. I knew that my doctor(s) got the results a week ago. Still, I hadn’t heard a peep from anyone. I called the cancer center yesterday and left a message which was finally returned this morning. All clear. I was too happy to ask if it was common practice to make a breast cancer patient wait for results of her mammogram. I know they are read the day of the test or the next day at the very latest.
No one on my team of medical experts has used the words “cancer free” yet. Or even “no evidence of disease”. Since these are the same people who had no problem making me hold my breath for over a week I’m going to assume they just don’t see the value in putting cancer patient’s minds at ease, so I’ll say it. Cancer Free!
I’m no math genius but I always thought numbers should make sense and be orderly and neat. I had my genetics counseling/testing meeting yesterday and honestly, I wish I had skipped it. I have never felt like a doctor was rooting for the cancer until that moment. Having been given all the “stats” I came away with we are hoping for a positive BRCA because a negative is basically meaningless and would mean convincing others in the family to be tested until we get the desired (??) results of a positive. The pros and cons of testing were laid out, it was suggested I postpone radiation (not gonna happen) until the results are in. I pointed out I would be more than halfway done by then. I was told results had to be given in person (did I mention I will be in the middle of radiation at that time?). I was told if I’m positive my risk for recurrence is 4-10.3%. My current risk for recurrence after treatment is 10%. I’m supposed to have a mastectomy based on an increased risk of .3%. This was when then numbers started swimming in front of my eyes . I’m okay with having an oophorectomy based on increased risk of ovarian cancer but I already have, and am dealing with, breast cancer. Lynch syndrome was brought up. Apparently I am not at risk but someone, somewhere in the family might be based on more numbers and statistics. I was starting to feel responsible for getting family members to be tested based on stats and probabilities. How would those conversations with the more distant relatives go? “I’m not sure you remember me, but I have breast cancer and I think you should be tested for Lynch Syndrome. What? I have no idea. Look it up”. At the end of all this counseling I was asked how I would proceed with my treatment if positive. I said exactly as I am now. Then I was asked if I wanted the test while the person asking was nodding their head in the affirmative. I found myself agreeing and before I knew it I was in the lab. The very second my blood was drawn I started regretting it. I really wish I had slept on it. I may have still gone along, but I wish I had thought it through, discussed it with my oncologist or just tried to let the numbers settle a bit.
So apparently the numbness I am experiencing is concerning, even though it’s not the neuropathy we are warned about with Taxol and it’s cousins where the fingertips and bottom of the feet are numb. My oncologist said it was carpal tunnel but it is getting worse almost daily. I wake up to two completely numb hands and have to shake and flex them to get the blood circulating. I hadn’t put two and two together until she asked about my feet but I have noticed one or both will “fall asleep” when I’m watching television in the evening. I have had carpal tunnel in the past when I typed for 8-10 hours a day and it was painful. This is not. I was told I may not be able to complete the 12 rounds. I will wear these splints at night to prevent my nerves from compressing in the wrist causing numbness. If I still have it, then it’s the Taxol. Since I’ve had the complaint from week one and it’s been progressively getting worse she wants to stop so I don’t have permanent damage. I don’t want to stop. I have cancer. I was told I needed 16 rounds of chemo and I want 16 rounds. I know that sounds ridiculous, but I don’t want to be sitting in her office in 3 years and hear it’s back and we should have done more the first time. On the other hand I was told from the beginning I was likely getting too much chemo, but since there is no way to predict if the cancer will come back, mine is hormone receptive and I am relatively young and there was micro-metastasis in the sentinel node, we would throw everything at it.
She brought up my genetics appointment again too. It was moved back to June when I will be between chemo and radiation. I have mixed feelings about it. I need to do it, especially for my daughters, but I don’t want to open that can of worms just yet. I’m tired of thinking about cancer. I don’t want to be told I should have had a mastectomy after all and I did all this for nothing. I don’t want my 22 and 26 year old daughters to have to make decisions about their breasts and ovaries before they’ve had a family.
Otherwise, the appointment went well except for the unleashing of my paranoid obsessive disorder