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Oct 31, 2019 03:06PM
PiperKay Have we HAD cancer, do we HAVE cancer, etc..... you ask....
I feel you on this question!!! I agree, it's weird to have so many ways to talk about it, and which is the most accurate way to describe our health story? My MO says that I've had a cancer diagnosis, and I've finished active treatment (surgery + chemo) according to NCCN protocols, which are the best statistical information informing effective treatment decisions. My AI is an ongoing treatment, part of that plan.
He reminds me that I once HAD cancer (2003) and it was CURED, so he'd like me to think of 2018 cancer in the same way. He feels hopeful that my treatment plan will lead to my being cured. He's a positive guy! However, we all know that sometimes Stages change, with new diagnoses.
The simple thing that I say is that I had cancer, got it treated, and I'm moving forward, and I have a good shot at having had it cured by my treatment.
When I want to share more than that, with people who are close to me, I say that I did have a serious diagnosis, and I underwent very serious treatment, and it's a hopeful thing (85-90% likely) that I am cured. However, we just don't know.
In 2003 I had a super-good-odds, "treatable," low-risk-of-recurrence, small, early stage, Grade 1 tumor, so it was a bit easier to breathe and feel calm. In 2018, it was scarier, because of being Grade 3. After 2003, I could say quite confidently that I had a super good chance of being cured, and I WAS cured. After 2018, I can say that I have a Pretty Darn Good chance of being cured, but it is absolutely not as sure a thing that this is behind me.
No more breasts, so at least it's not In Front Of Me. Ha ha. Breast cancer joke.
The Medical Assistant for my GI doc was getting my medical history over the phone a couple of months ago, before my scheduled colonoscopy. She asked me, "Are you in remission?" I felt like screaming, but I did not. I said, kindly and patiently, that her question should be about what my current treatment plan is, whether I'm recovered from chemo and surgery, etc., and that she should NOT ASK THAT QUESTION (I did not yell, but I said it in a friendly, explanatory tone), because we really never know. Of COURSE I'd like to be able to say that, but it's a weird term with breast cancer. Instead, we say "No evidence of disease / NED" which is more accurate, of course. "Remission" perhaps is more used with something like a blood cancer/ leukemia, I'm guessing, where it can be pushed down into non-active state? Anyway, with breast cancer, we don't hear that word used. We either get a new primary (like I did--it's rare, but it can happen), or we get a Recurrence (additional lymphatic involvement which is associated with a previous diagnosis and worsens our staging), or we get (distant) metastasis, which skips us ahead to Stage IV. Happily, lots of people do live for quite awhile with Stage IV these days, and even with a good quality of life. However, it's the Scary Thing / Back Seat Monster we'd like to not have happen to us, of course......
I go around balancing anger and fear against gratefulness. VERY grateful that I live in this century and in the first world, where I have a shot at getting cured and living longer. Grateful for modern medicine having tools to save my life. VERY furious that my body betrayed me and I've had to deal with this! Just being honest here.....
3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2-
6/9/2003 3DCRT: Breast
8/7/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
11/6/2018 Arimidex (anastrozole)
1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant