Deb J.
40 yrs old, Dx 5/2007, Charleston, SC
My story. My name is Debbie Johnson. I live in Charleston, SC. Im a 40 year old stay at home mother of two beautiful children. Abigayle, 6 1/2, and Walter, 4 1/2. My husband, Chad, is the best. Always positive and uplifting. I lived in my home town of Louisiana when I was diagnosed so I was surrounded by family and friends. I could not have done it without them. My parents were so helpful and they will never know how much all of their help guided me gracefully during all of my worries and anxiety. They helped me stayed positive and my way of dealing with stupid cancer was to laugh and make jokes about anything I could. That is what I continue doing because having the scans and appointments now to see if the darn thing has returned is almost as hard as knowing it is there. May 2007 – I found a lump in my right breast. I did not think much of it because I had a routine mammogram in February 2007. After a few weeks my husband noticed that it had gotten larger so I made an appointment to see my OB/GYN. She sent me to have an ultrasound and said that it was probably nothing to worry about but lets make sure. I went to the hospital to have the ultrasound which the radiologist could not definitively say what it was so they did a mammogram of the right breast. The radiologist said that it looked like nothing to worry about and to follow up in 6 months. So, I went on my way and was not worried in the least bit. Out of my mind. The following Monday my OB/GYN called and suggested I see a breast specialist to just be sure. I saw the breast specialist and she said that it could be a few things of no concern but that there may be a very miniscule chance that it could be this rare type of tumor. She gave me three options: 1 – leave it alone and just watch for any changes; 2 – needle biopsy; 3 – go ahead and have the lumpectomy. I opted for the needle biopsy. So she did it right then and there and I went on my way – still not worried at this point in time. Two days later I got the call from my breast specialist and she said it was a capillary hemangioma and that we needed to go in and remove the lump. So I had the lumpectomy the following Monday to remove the lump. I went home and pretty much thought this was it; Im done with this mess. Wrong again. Dr. Christian, my breast specialist/surgeon, called and said that the results came back and that it was “Primary Breast Angiosarcoma”!!! It was 3cm and she removed it all. There is more. She highly recommended that I have a right mastectomy because this type of tumor almost always comes back in the same area. She immediately scheduled a breast MRI and made an appointment for me to see an oncologist and plastic surgeon for the reconstructive part of the surgery. I saw the oncologist the next day and she scheduled me for a PET scan for the next week. Dr. Reine, my oncologist, agreed with my surgeon that the mastectomy is the best way to go. She let me know that the cancer is very rare and in all of her research, there would be no reason to have chemo/radiation because they have shown to have no benefit it preventing the tumor from returning. That is, if the scans come back and show that it has not spread to any other areas of my body. So, now Im worried. A dear friend of mine tried to convince me not to search the internet and that she would be my internet/research advocate. I tried not to look, but late one night, I could not help myself. GOOD HEAVENS!! Not the place to go!! I had my scans the following week and found out the next day that the tumor was nowhere else to be found. No signs of angiosarcoma in my body. YES!!! Now I just have to have the mastectomy and get a new right breast. I had my surgery in September 2007. I got a new right breast and I had my left breast enhanced a bit. Exciting for a girl close to 40 years old. After the surgery my doctors assured me that they had removed the entire tumor along with some surrounding tissue. So, Im cancer free. Im very very blessed to have gone through this so quickly, and easily compared to what others have had to go through. I had great doctors and great family and friends. I now have a PET scan twice a year and a breast MRI once a year. Ive had a few abnormalities show up but after more detailed CT dye contrast scans they confirmed that it was only muscle spasms. I did have some abnormalities that showed on my PET scan in October 2009. They were enlarged spinal nodes with increased activity. The doctors do not seem to think it is anything to worry about. I have another scan in April 2010 and although the enlarged spinral nodes are still showing activity, there was not an increase to worry the doctors. I will have another scan in October and if there has been no increase and if there or no “hot spots” then I can start having my PET scans once a year. My breast MRI in January showed a lump in my left breast so I had an ultrasound….which was inconclusive. UGH!! Not again is what Im thinking. The next week I had a needle biopsy during a breast MRI (worst thing Ive had to go through thus far) and they said that was caught the lesion early, so they went in and removed the lump so that it did not have time to progress. The results came back that is was benign so YEAH again. I hope my story is a positive one for some of you guys out there. Im so glad to have found others with this annoying cancer. I am so blessed to have this story to tell and to be a survivor of 3 years now. I will be praying for you all. Im here if anyone needs to talk, vent, yell, cry…..anything because some days are harder and it’s hard dealing with an unknown. One more note…..every woman I come in contact with I leave them with this message. “Do your self examinations!!!” This type of tumor is not detected in mammograms from what Ive been told and I become very scared and alone when I think of what may have happened to me if I had not felt the lump and had it checked out. Thank you, Deb