Special Guest Writer Julie Pierman ~
My journey started in 1998 when I found the first of 3 lumps in my right breast. I was 26 at the time. I remember being so afraid to call the doctor and ask if they wanted me to come in and have it examined. I had plans that day to go shopping with my sister and wanted to avoid this whole situation as long as I could. Obviously, the doctor’s office wanted me to come in that day. I was hoping I could put it off for a few days, weeks, etc . . . I went in, they examined it and ordered a mammogram and an ultrasound. The mammogram and ultrasound did detect something but they were not sure exactly what it was, so onto the surgeon I went. I ended up needing surgery to remove it. This completely freaked me out! I was very fortunate that it ended up be a cluster of thick-walled cysts about the size of a dime. However, I ended up developing a hemotoma the size of my fist from the surgery, which resulted in another surgery about 6 weeks later to remove it.
Life went on until 2009 when I found another lump in my right breast. I had tried to be very good at doing my self-exams, but in reality I did them about 3 or 4 times a year. Since this had happened before and everything turned out OK, I was not worried about it. I made the necessary appointments and set up the surgery to have it removed My surgeon was pretty sure it was an fibroadenoma (non-cancerous breast tumor) and she was right. It was about the size of a large green olive and the part I had felt was the top of it. Needless to say it was pretty deep and it took me a while to be completely pain free from this surgery.
Fast forward to December 2013 (and age 42). I found another lump. Having been through this twice now, I wasn’t too concerned. I had a Mammogram in June 2013 and it was fine so I thought there was no way it was anything serious. I have my doctor examine it and he agreed that there was “something” there and put in an order to get an Ultrasound. I was able to get my ultrasound that day around noon. The next morning I come into the office and I have a voice mail from my doctor asking me to come up and see him when I can. I knew what he was going to say. It is the same routine as I had the 2 other times. A referral to a surgeon, then schedule to have it removed. I saw the surgeon the next day and scheduled to have it removed December 26th (Yep, the day after Christmas). Because of the holidays, the biopsy results took a little longer than usual to get back. I get a call from the surgeon on January 3rd on my way home from work. That was when she told me I have DCIS. She told me that I did not have cancer. Here is the thing about DCIS, DCIS means ductal carcinoma in situ. Yes it is cancer (thusthe carcinoma in the title) but it has no spread outside the tumor yet so many doctors don’t consider it cancer. In reality, it is cancer. It is considered Stage 0 breast cancer. They treat you as if you have breast cancer. Of course when I got home, I was a hysterical mess and immediately got on the internet and found out it is indeed breast cancer and proceeded to freak out. My boyfriend and I met with the surgeon on Monday and she gave me my options. The biopsy did not have clear margins, so I was going to have to have more surgery.
1. I could either get a lumpectomy (where they take the tumor and the surrounding tissue out) and then radiation for 6 weeks and tamoxifen (breast cancer drug that can help prevent cancer either from recurring or developing in the unaffected breast) for 5-10 years
2. I could have a mastectomy of my right breast only, but I would still need to take Tamoxifen for 5-10 years.
3. I could have a bi-lateral mastectomy. I would not need radiation or Tamoxifen.
At that point I thought I would just get the lumpectomy and then do radiation. My lumpectomy was on January 14, 2014 and about a week later I met with the radiation oncologist. He wanted to run a few tests before I would start radiation. He wanted to get a “new” baseline mammogram and MRI before radiation started and he wanted me to get genetic testing. My testing came back negative for the breast cancer genetic mutations. YAY! During this break in my treatment I took the time to research my options more. I looked online, I saw my oncologist (he would be the one prescribing the Tamoxifen), I saw a surgical oncologist (in case I wanted to change my mind and have a mastectomy), and I talked with friends/co-workers that have been diagnosed with breast cancer. I found out the reconstruction after radiation can be difficult because radiation damages your skin. It was possible that I would not be able to have reconstruction after radiation because of previous surgeries. So since I had a total of 5 surgeries on my right breast at that point and there was already a good amount of scar tissue. I ended up choosing to have a bi-lateral mastectomy
On April 4th, 2014, I had my bi-lateral mastectomy with expander placement immediately following the mastectomy. Surgery did uncover another tumor in my right breast that DID NOT show up in the Mammogram or MRI just a few weeks before. Surgery went great, but 2 weeks out I developed an infection. I had a 5 day hospital stay followed by a 2 week course of IV antibiotics at home. I finished the antibiotics and returned to work. Four days later my infection returned and I was back in the hospital and into the operating room again to clear the infection. I continue with my reconstruction but have a complication. My left expander was not filling properly so we continue to fill the right and move up my implant placement a bit. On August 5th, 2014 I had my implant placement. I now have had 5 surgeries in 8 months. I have one surgery to go to fix my left implant (it slides too much) and for “revisions” once things have settled more.
As my friend says, I had a great diagnosis with it being Stage 0, but the worst luck with complications. With that being said, I am very happy with my decision to go with the bi-lateral mastectomy and very glad I took the time to research all my options.
My tips to all of you:
1. Always do your self-exams – if I hadn’t, I would never have found any of my “lumps”.
2. Get your mammogram and if they tell you that you have Dense Breast Tissue, be more vigilant. I have always been told I had dense breast tissue and I did not know what that meant. My tumor most likely was there in June 2013 but because of my dense tissue, it was not able to be detected. AND as you can see from my story that I had another tumor not detected on a mammogram or MRI just prior to my mastectomy.
3. If you have the luxury to take a little time (even if it is only a few weeks) to research all your options, get as many second opinions as you want and make the decision that feels right for you. There is no right or wrong. There is only what is right for you.
4. Be patient (I am still working on this one). The journey is not a quick or easy one, but it is one that will finish with you being a survivor.