My story is a long one. I will try to keep it brief. I was 27 years old (1993) and engaged to be married. I felt a lump in my left breast and went to my OB/GYN. I had a mammogram and ultra sound then sent to a general surgeon when they couldn’t determine anything. I followed up with the general surgeon for several months and he concluded it was a cyst. Silly me believed this.
About a year later I was married and recently had a miscarriage (1995). I noticed the skin dimpling near the “cyst.” I went back to my general surgeon and he could tell I was concerned and said he could remove it if I wanted. I did and surgery was scheduled. I remember him saying he wasn’t worried. Well, when I woke from the surgery, Doctor was by my side saying “sorry…it’s cancer.” Boy what an awakening! I never really thought it could be that! Or maybe I did and that’s why I went back and wanted it removed. I am also a Juvenile Diabetic and thought that was my “handicap.”
Why did they never biopsy this over a year ago! I suddenly became very educated on this disease. Two days later I was back in surgery to have the lumpectomy. A couple days later I come to learn I have 4 positive lymph nodes, and my cancer is aggressive. I was just as aggressive. Had chemo, stem cell transplant (this is a story in itself!), and radiation.
Shortly after the radiation I couldn’t even walk to the bathroom. I remember crawling on the floor in the hospital to get to the bathroom. Finally, a diagnosis of radiation to my lung. Steroids were the treatment. Better now, but permanent scarring to date.
Serious pneumonia after this with suppress immune system from the stem cell transplant. This was first misdiagnosis, one doctor thought I needed to be on steroids again for the radiation to my lung. Learned a couple weeks later at a transplant follow up that I had a pneumonia the size of a golf ball and that I could have died without treatment…especially on steroids. Fired another doctor.
Then I started having chest pains. After another struggle…I found a great doctor to listen and ordered a stress test. Ooops. Now I have a cardiologist and in Cath lab. He’s unable to get to blockages. Three in one artery. All in one spot. Close to the chest wall. Radiation damage again? Second opinion and both suggest bypass surgery. This was done in 1997. Okay…they say God never gives you more than you can handle! I’m trying to believe this. I had to go back to cath lab twice because of scar tissue at the graft.
I continue to go for all my check ups. I still have several doctors. Oncologist at home and one where I had my transplant. I have a lot of faith with my Oncologist at transplant hospital and continue to follow with her. In 1999 I had a little scare. Scar tissue near lumpectomy seems a little different, but regular CT, Bone Scans, Mammograms, and labs don’t show anything. I saw a breast surgeon at this hospital and she did a fine needle biopsy. She told me it didn’t show anything. Guess I should have asked more questions. But once again believed her.
February 2002, I am following up at home now since it has been 5 years since my transplant and don’t need to travel for my follow ups. This great doctor that diagnosed my heart problems…didn’t like this scar area either and sent me for a mammogram and ultra sound. Well, doctor could see this mass under ultra sound and thinks it’s scar tissue too, but could do a core biopsy if my oncologist and I wanted. Well, yes I do! And so did my Great Doctor. And guess what! You guessed, cancer is back. I cried! I thought I can’t go through this again.
I told you this is a long story. I have left out so much too. I went back to transplant hospital (this is their name now…I don’t like to give names). I saw this breast surgeon again, I wasn’t comfortable with her at all this time. She seemed to think this was attached to my chest wall and talked about possibly removing a rib and inserting a rod! I had a breast MRI and it showed it was not attached. I ended up having a mastectomy in my local town. I learned I must be my own advocate. Trust your instincts, they are usually right. And never feel awkward questioning a doctors recommendations if you are not sure.
I ended up having several cancers in this breast and had to some strong chemo. I faired the chemo again. Recently got an opinion from a reputable breast surgeon about reconstruction. He doesn’t recommend surgery and wouldn’t even do surgery on me if I wanted him too. Honest guy…not just out for the money! I was sad at first but then relieved because I was struggling with idea of reconstruction surgery. I’m just happy my hair is growing back!
Last year I was the #1 female fundraiser in our local Relay for Life, and my team came in second place for the team raising the most money. We received tent decorating awards as well as Heart of “our town name.” My work is going to be a sponsor this year! And we are going to try to raise even more this year. I don’t want others to have to go though what I have. I pray for a cure real soon!