Yes that is what I thought I had and have been dealing with since May 31st. I had some of the symptoms for Inflammatory Breast Cancer or IBC. In a nut shell it is very rare, 1 – 3 % but extremely aggressive and usually only diagnosed at stage 3 or 4. Prognosis after chemotherapy, mastectomy and radiation is 4 – 8 years of life. I was the one who spotted my particular symptoms and I was the one who educated at least five doctors as to what it was. There are only about 2660 cases per years in the US and Canada which means that very few MD’s have seen it. Sadly you can have all the tests from mammogram, to ultrasound, to MRI and finally biopsy and they still can all be negative but you still have the cancer. It does not show as a lump and is very difficult to diagnose.
I had all of the above done as well as thermography and paid for all of them except the mammogram and the biopsy. I spoke to someone last Thursday whose mother had a failed mammogram and have been waiting three months for her biopsy. Yes Canada has great medicine but you often have to wait to see a specialist and get tests done. I waited 11 months back in 2011 to see an orthopedic surgeon who diagnosed that I required a hip replacement. I suffered for all those months. There was no way I was going to wait around to see if I had cancer. I took control of my life. I wanted to live and Colin and I wanted more time together.
We both spent hours online at the beginning. The only thing that came up for breast discoloration was IBC. There was no way I was going to wait around until it was in my lungs or bones so that it could be diagnosed. After many tears and thousand of hugs and hours upon hours of discussion I arranged my various tests. I won’t go into detail but it took all my energy and time. My general practitioner said wait and see. Finally she Googled IBC and was on my side but that took 12 days. Meanwhile I went to my vein and face MD who agreed I needed to head to Vancouver ASAP for the tests. I even had to fight to get in ASAP at the private clinic. She was a great support and in the end did the biopsy but did not do what the MRI radiologist suggested as a biopsy but a much deeper one, in fact she did two of them. She wrote a detailed letter about the samples and asked for the head of pathology to do analysis.
Perhaps you can imagine the gamut of emotions that Colin and I went through, the stress of it all. He has since told me that after I went to bed at night he would cry. June was the longest month of our lives. I put my affairs in order and make my wishes known to Colin. At one point he was going to stop working and we were going to travel till the end. Not sure what we would have done with the girls as I could not bear to plan that. We decided to sell the BMW Z3 as I could no long have my face in the sun and who knows, I might no longer need a car. In the end we were calm and willing to do whatever had to be done.
I knew that if the biopsy came back negative that I might still have cancer as my symptoms were increasing. It did not look good. The next step was to see an oncologist and in my mind I was planning to have a mastectomy either way, just so I could stop worrying and get on with life.
So a few days ago I went to get my biopsy stitches out and the MD came dancing in waving a piece of paper. The result had come in the night before and I did not have cancer. There in fact was a diagnosis for my symptoms which none of the doctors had thought about. She in fact had never ever seen it on a breast ( she is a skin specialist ) and was very surprised. I have granuloma annulare of which there is no known cause and it should resolved itself in several months to a few years. In 75% of patients the disease disappears. Frankly I don’t care if if does or not, who care what color my breast is?
Needless to say Colin and I were overwhelmed with relief. I wasn’t back home two hours when someone came to test drive my car. I had 7,904 hits on Autotrader alone and over 100 on the other 3 sites I had it listed. There were 5 people on the wait list just in case the financing fell through. The money officially changed hands on June 30th and I tearfully said goodbye to my roadster.
Meanwhile since listing the BMW a week ago, we have been shopping for a used car for me. The day I found out that I did not have cancer we decided that life was short and started looking at more expensive vehicles. We found one but it did not fit the driveway. We had built this house around the Z3 and had a push out on my side of the driveway which shortened that side of it . Lots of hours researching online, test drives and phone calls. I feel like I spent the entire month of June online. as well as being on the go, first medical appointments and now finding a vehicle. Colin is getting into his busy season so I do need a car. My desk is piled high at the moment.
July 1st was the first day that I truly relaxed, I wasn’t going to die and I had come to terms with selling my car and had three days off. We also had found what we thought was the perfect new to us vehicle but it wasn’t here but rather in Calgary. Nothing we could do till after the long weekend.
Suddenly yesterday afternoon my lower back began to ache and increased in severity hour after hour. Now what? I truly was in major pain and at one point I suggested we go to ER but Colin said ( as I knew ) that there was nothing they could do. Even wine did not help, a first for me. By the way I had told Colin that if I had cancer that there was no way I was going to stop drinking wine 🙂 Finally at 9PM last night, Colin called our chiropractor who works out of her home. She was on her way shortly with her kids to the July 1st fireworks but she would see me first. I was walking all hunched over and crying in pain. It was difficult to get on the table and within a moment she knew that I had a compressed nerve at L5. She indicated that it was likely the result of my body reacting to the release of the enormous amount of stress I have been under. I was treated, we came home, she went to the fireworks I presume and I went to bed. It was a painful night as no matter which way I moved I was in agony.
Today I have been on semi bed rest, alternating cold and heat, doing some stretch exercises to try and put space between my discs. No bending, lifting or sitting for too long, which I am doing as I type this post 😯 I am feeling 50% better now at 5PM but oh what a scare. I have never ever had pain like that. You can imagine the thoughts going thru my mind, if not one thing then the other. I certainly hope to be 100% by mid week.
If you managed to read this far, thanks. Time to go rest my back. Tomorrow is another day.
