"Inflammatory what???"
-By Ruth C, Michigan, USA
I am a mother of 2 sons, teenagers now. Where did the time go? 2 weeks before all hell came down, I received an e-mail from my sister with an article about IBC, inflammatory breast cancer. She asked me if I'd ever heard of this. I had but only as a very rare and distant BC. When I read the symptoms and the resultant treatment, I thought, "wow hope no one I know ever gets that". I immediately wrote back and asked my sister if she was having these symptoms, and she said no, she just wondered what it was... I am an RN and know about these things you see...
Two weeks later I am helping my husband Roger put up the display tent for our pottery, as we had 2 hrs to set up before the art fair begins. I felt a pain in my rt breast and thought, "That’s funny, hope I don't have one of those funny fatty things again." Ten yrs before I had had a fatty lump removed from that breast. It was just that, fat, but the pain of its growing felt like the pain I had now. I went to one of the portable potty things and had a look. What I found was a shock! There was this quarter sized red and bruised area where the pain was, and my nipple was inverted! It was not like this when I took my shower..what had happened? I didn't hurt myself, or get bitten. What was this? My mind then went immediately to the article my sister had sent about IBC and I was scared!
I didn't tell my husband but it was the hardest, longest day of my life! This was on a Saturday and the Doctor's office wasn't open until Monday. I tried to tell myself it was nothing to worry about really. Cancer doesn't hurt, I thought, I'll be fine.
By Saturday night I could feel a ridge about and inch long and the red area widened. It was now very sore and throbbing. I finally told my husband about the pain and redness but not about the article or my fears. He was concerned but when I reassured him that probably a bug bit me or something he let it go. On Sunday I awoke with pain and now the redness was all in my rt side of my breast, swollen and very tender to touch. The ridge was now as long and wide as my middle finger, and the nipple was very inverted. I wasn't running a fever though and I knew this must be IBC.
I was able to see my doctor first thing Monday morning. He scheduled me for a diagnostic mammo and an ultrasound of the breast. I had already scheduled myself for a regular mammo in 2 weeks, but when they got the order from my doctor, they put me in on Wednesday. They took so many pictures and I was in tears from the pain. The tech said, "we are having a hard time seeing anything on your films because its very cloudy and fatty." The cloudiness I found out later is what IBC is characterized as when they talk of "sheets". I did have large breasts but they could see everything on my left breast, only my right one was trouble.
The Ultrasound was not much better, but here they found a "structure" on my rt breast in a duct, and my lymph node leading from the breast was solid, where it should be hollow and fluid filled. Based on the structure in the duct though, I was referred to a surgeon (not a breast surgeon, which I didn't know until later). His conclusion was that it probably wasn't cancer, and all this manipulation must be making my breast sore and don't worry you're too young..blah blah, blah...He was the one too young, cocky and said " It can't be IBC, you don't have peau d'orange" At the time I was scared enough to just go with what they were saying and just get a lumpectomy, biopsy.
It was done 2 weeks later (now 4 weeks after I discovered the spot). I had stitches and bruising and was swollen still. My surgeon took this time to go on a trip. The results were sitting there on his desk the next day, but he was gone, and the nurses weren't allowed to tell me the results. As a working RN at the hospital where I'd had this done, I decided the risk of being caught was worth the knowing what I had. I looked up my results, and found that I had adenocarninoma of the duct and invasive to outside tissues. There were many MANY undifferentiated abnormal cells throughout the tissue and no clear margins. I was ER/PR positive and Her2 negative. When I saw all this I broke down in the office where I worked and cried. My colleagues came in and and comforted me; I had told them of the adventure so far and they had tried to tell me that cancer doesn't hurt and this was just a blip in the road. Then I showed them the results because by now, in for a penny, in for a pound. One of my colleagues got on the phone right then and called our oncologist colleague/doctor and asked her to look up the results of my biopsy. She would call me later when she could look at the results. I was a basket case and they sent me home...
This kind doctor called me at home and looked at the results right as she was talking to me, explained what all the results meant and then said "you need more surgery to get clear margins and you need a sentinel node". She asked who my surgeon was, I told her and there was silence. Then she said well I'll call him with my recommendations, and I asked her right then if she would be my oncologist and she agreed.
My surgeon was angry that I had gone behind his back but scheduled another lumpectomy. When he saw me before thi he was surprised at how much more area was swollen with bruised areas all over. He scheduled a nuclear scan before the surgery to be sure he could get all the margins. He injected my breast with dye (God that hurts!)and told me to massage it. I did in spite of the pain and when they took the picture the radio dye hadn't moved. He was miffed at me as if I hadn't massaged it enough. But I thought, "yeah well, when you have IBC the pathways are blocked! Doesn't this tell you something?"
The regular blue dye made it through though, and my sentinel node was found. This doctor took half my rt breast with the nipple and the rest of the duct along with the two beside it and then started on the nodes. In all he started with 12 nodes that were looking bad, then took them all. All four of the first nodes came back grossly positive, and a little in many of the others. I had drains and half a breast left and he didn't want to keep me in the hospital, but my doctor said she stays. and that was it. When I went back to have my stitches out and the drains removed, he told me the biopsy report said IBC, but he didn't believe it because "You didn't have peau d'orange.". He said see you when you want the mastectomy, and I thought "it'll be a cold day in hell!" and left.
This long short story is to tell people to be vigilant, persistent in their own care, and don't take no for an answer! Educate your doctors, show them the information you find. I even had to educate the insurance company, which to their credit looked up my info and approved all the tests afterwards. You can choose who takes care of you,(at least in the USA
I had 4 rounds of adriamycin/Cytoxan every other week and then taxotere every 3 weeks for 4 rounds. I had surgery after chemo, a double mastectomy by a breast surgeon I felt good about, and then 33 days of radiation. Since January of 2007 I have been NED, no evidence of disease.
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