-by Claudia N.F.
How many times have we heard our doctors say: "check your breasts for lumps" and "have your yearly mammogram"? What we don't hear and aren't told by our doctors is "check your breasts for ANY changes and tell your doctor when you notice them" and "there's a form of breast cancer that usually doesn't have a lump or show up on a routine mammogram”. Ever since I saw a slight pinkish‑red blotchiness on my right breast in early July 2007 and after doing online research with my daughter-in-law, I had the feeling that I had IBC (inflammatory breast cancer).
In July 2007, at age 65, I contacted my doctor's office about some blotchiness on my right breast, suggested that it might be IBC (Inflammatory Breast Cancer) and was told it was an infection (mastitis). After three 10‑day rounds of antibiotics, in early August, I was given a diagnostic mammogram, specifically looking for the sheeting or nesting of tumors in Inflammatory Breast Cancer. What is recommended is one 5- or 7-day round of antibiotics. If they don’t get rid of your symptoms, you should keep pushing until you get a proper biopsy. The results of the diagnostic mammo got me the biopsies I needed to finally get my diagnosis of IBC on August 10, 2007. Since it was finally confirmed that I had IBC (the highly aggressive and most deadly form of any breast cancer), I knew that my life was forever changed because of what was ahead of me in the way of treatment.
After consultation with an oncologist, I actually started chemo in early September. Unlike many others, I breezed through my chemo treatments and finished chemo in early March 2008 with little or no side effects. On April 18 I had my right MRM and went home the next morning. Due to a couple of disagreements with my surgeon, I only saw him once after he removed my drain a week after my surgery.
In June I started my 6‑1/2 weeks of radiation. My only problem with the rads was a slight burn in one area, which they didn't include for a few days and then added the rads there again at the end of my treatment. When I completed the rads and got my graduation certificate, I let out a big sigh.
After my rads, I started taking Arimidex pills to keep the cancer from returning. Arimidex is for post-menopausal women who are ER+ (estrogen receptor positive). For such a tiny little pill, Arimidex sure has a lot of side effects. I know...I’ve had every single one of them over the past 3 years. I had to pay over $300 per month for those pills until a point in 2010 when a generic, Anastrozole, came out. Now I only pay $10 per month for all those side effects. I’ve often said that every day is a new adventure; that I never know what I’ll wake up with: nausea and vomiting, diarrhea, stiff joints, hot flashes. My two favorites (NOT) are sleeplessness and weight gain. No matter what side effects I get, I will continue to take this pill in the hope that it will keep the IBC from recurring.
The thing that amazed me the most throughout my diagnosis and treatment was the lack of knowledge that the general public and the medical professionals have about IBC. I almost cried when a worker with the American Cancer Society told me she had never heard of IBC when I was first looking for information and some local support. I was told they couldn’t help me at all. They didn’t even mention other ways they could help anyone who had cancer. I knew that even though I had retired at the end of 2007, I had a real job ahead of me. I knew I could make a difference by trying to educate locally here in South Florida. I started volunteering with the Inflammatory Breast Cancer Foundation in 2009. Every time I go to any type of doctor or for any testing, I take along my IBC brochures and my business cards. In fact, they go everywhere with me. Even a telemarketer doesn't escape. I will only listen to them if they listen to me first.
My mission in life now is to educate anyone I can about the signs and symptoms of IBC. I started with my PCP after the biopsies confirmed that I had IBC. I told her that rather than starting with surgery as in "regular" breast cancer cases (and as she told me I'd be doing), I would be starting with chemo prior to surgery. Since IBC is highly aggressive, you have chemo first to reduce the tumor size prior to surgery.
After my mastectomy, my oncologist told me that I might not need rads since there was no evidence of cancer in my breast or lymph nodes per the pathology report. I told him that I would feel better having some rads as recommended for IBC patients in the NCCN Guidelines, even when you have a positive response to chemo and mastectomy. He got a copy of the Guidelines and put them in my file. He asked me how I knew that, and I told my "my online support group". I honestly don't know where I'd be today without that wonderful group of men and women.
As for my surgeon, I no longer see him for several reasons, one being he did not do an axillary node dissection at the time of my mastectomy. His reasoning: he wanted to keep me from having lymphedema. My reasoning for not seeing him again: I'd rather he have followed the NCCN Guidelines and did the axillary node dissection and tried to save my life, instead of doing the sentinel lymph node biopsy he actually did. The axillary lymph node dissection is recommended for IBC patients.
Just in case you wondered, here are the signs and symptoms that may indicate you have IBC:
1. One breast swelling in size or thickening, sometimes overnight.
2. One breast warmer to the touch than the other.
3. Breast discoloration, including an area that is red or bruised.
4. Appearance of a breast bump resembling an insect bite.
5. Change in skin texture, resembling the pitted skin of an orange.
6. Persistent itching that creams/salves do not alleviate.
7. Nipple changes (flattening, inverting) or discharge.
8. Swollen lymph nodes under arm or above collarbone.
You do NOT have to have all the symptoms to have IBC. Most women or men have only 2 or 3. I only had one symptom: the breast discoloration, which I called a slight blotchiness when I described it to my doctors. The main thing to remember is to give your doctor a call if you get any of these symptoms. If your doctor does not take you seriously, find one who will. It’s your life that’s on the line.
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