,

TRUST YOUR INSTINCTS – my story, take 2, part 1

I always talk about intuition, knowing your body, trusting your gut and being your own advocate. A lesson I learned in 2011 when I was told cancer does not cause pain, and yet there I was with a DCIS diagnosis, and here I am learning that lesson yet again. Back in December 2017, I went to my plastic surgeon complaining of pain in my breast. I didn’t know which doctor to see but thought it had something to do with the implants from my bilateral mastectomy and reconstruction 6 years earlier. He checked, saw nothing, and sent me for a CT. The CT did not show anything. I was disappointed that I could not  get an explanation for my pain. It was not nothing, I knew it. But I let it go because there were so many other things going on. By August, I couldn’t deny or hide the pain anymore. It became so intense that it forced me to slam on the brakes with 3 of my girls in the car and grab my breast and try not to cry in front of them. It scared them nonetheless. I knew I had to get an answer. My husband and I went to see my GP. She could not feel anything or see anything but she trusted my pain. She took the steps necessary. She sent me for an ultrasound that came back clean. She then sent me for an MRI. I was set up for one in October, having to wait until I got my period to schedule it, with and without contrast. I made sure both were back to back so I did not have to make two trips. I went for the MRI only to find out that the radiologist canceled my contrast one. I was irritated because I specifically had to wait the extra month to be able to get both done and I really felt I needed the contrast to see what was really going on. I was told if the MRI came back clean, they would have me come back the following Monday (this was a Thursday) for the contrast. Ugh! I called my doctor the next day for the results. She was told that both my implants had ruptured, the right side right where I was showing the pain. So off to the plastic surgeon I went again. He was surprised, said that ruptures usually don’t present with pain. He really believed it had nothing to do with the implants. Regardless, they had to come out. I was torn with the decision of replacing them or not, fully believing there was something causing the pain. My concern was if it was BIA-ALCL, or an infection, do I really want them back in….but it was the easier procedure, quickest recovery. So I made a deal with him, they could go back in unless he saw evidence of mold, infection, BIA-ALCL, or anything suggesting that the implants were the cause of my pain. He agreed, stating that he did not believe that would be the case.

On December 11, 2018, he prepared for a 3 hour surgery. All marked up, I was wheeled off to the surgical room in tears, still not happy with my decision. Less than 3 hours later, not only was I out of surgery, I was awake. The surgery only took a little over an hour. He told Dave that all looked good but he removed a large amount of scar tissue and sent a big chunk off to pathology. He saw me briefly and told me that the implants were not even ruptured, he does not know what they saw on the MRI but the implants were intact. He replaced them anyhow, adjusted my chest wall to make more room, in hopes of alleviating whatever may have been causing the pain. He asked me at my follow up if I felt better. I told him I don’t know. There was all the obvious pain from surgery, which actually was not too bad and I was off the pain killers after a day, but I don’t know if I feel better, emotionally or physically. Something was causing that pain and I had no answers for it. That never sits well with me. He repeated that ruptures don’t cause pain, that there were no ruptures, that everything looked clean and that he didn’t see any concerns but we would wait for the results of the pathology. I still felt something was wrong. I did not feel relieved, I actually felt like my sister with my raspy voice from the surgery, under my blanket, not being able to shake this feeling. I tried though, I hoped it was just the scar tissue causing the pain, or the tightness of the skin from the radiation like he suggested though it made no sense that it only started to hurt 6 years, now  7 years later……well, today, Dec 18, 2018, what is supposed to be luck in the Jewish world because it is double chai, my poor plastic surgeon had to call, while on vacation, at 8 o’clock at night, to deliver news he probably never had to deliver before, that I had cancer. You know, the whole first round, they never called it cancer. Initially a radiologist told me I had to stay for an ultrasound because they thought I had cancer,  but after that it was always DCIS. This time he called it invasive cancer. He said the tissue he sent to pathology looked abnormal, it was part of the encapsulated part of the breast (he actually never told me that and only told Dave  that he sent a big chunk of scar tissue off), and that was what came back as invasive. I have invasive ductal carcinoma, grade 3, poorly differentiated. That is all we know right now.

So, I was right in knowing something was wrong, again, I trusted my intuition, I 

pushed, I advocated for myself, I got answers. I just hope they did not come too late…