Andipanda

[Ruth]

Hi---My name is Andi, I'm 59, and I'm a 4-year survivor as of the beginning of December 2008. In July 0f 2004 I had my yearly mammogram which had been put off a couple of months. Although I had never put off a mammo before, this time it seemed it was in the cards as they found a tiny "smudge" and wanted to do further studies. They did an ultrasound and still couldn't figure out what it was, although I was at one of the top Cancer Centers in the country. It was just so tiny and flat. The radiologist came back in after the ultrasound with the news that it was still unidentifiable and I said, "what's next?" He recommended a biopsy, and gave me my choice of a small-bore or large-bore. We did the large bore (needle) right then. He told me these tiny things are almost never malignant. The next day my gyn called to tell me I had breast cancer. It was type I, 8mm,right breast, so we caught it right away. It was a very aggressive cancer--if I had had my mammo three months earlier, it wouldn't have been there yet, but by the time I had my next one, it would have been the size of a golf ball! Even at 8mm, it had to get out. My daughter (21 at the time) came home just as I got off the phone with my gyn and I must have looked horrible because immediately she asked what was wrong and I blurted "I have breast cancer---I don't want to die!" She held me while I cried---and that was the last time I cried and the very last time I said anything about dying, even when I told my husband and son. I immediately went into survival mode---and truly, I didn't know I had it in me until I was faced with it. I found out on a Tuesday, and Wednesday I was calling breast surgeons--I saw one on Thursday, and picked the one I saw Friday, who scheduled my surgery for a week from the coming Monday. The week in between I met with my new breast oncologist and radiation oncologist, who thought I'd be a good candidate for what they called "mammosite" radiation therapy. Other places I believe call it brachytherapy. It worked like this: at the time of surgery, after the tumor was removed, a tube was placed in the area of my breast where the tumor had been with an inflatable bulb resting in the depression. The tube was fed into that area by an incision under my arm--so some of it was inside, with the bulb, and the rest of the tube outside the incision (like a drainage tube) and taped to my body. Only when they went in to do the lumpectomy would they know if I was a good candidate for this type of radiation--the area where the tube was placed had to be almost in the middle of my breast---not too close to the surface of my skin, and not too close to my chest wall.
The surgery and mammosite placement went well. When the biopsy came back, I found out my cancer was triple negative---which meant I'd have to have chemo also, as there is no oral treatment for a recurrence. However, no lymph nodes were involved, the tumor had clean borders, they got it all. I healed well from the surgery, and two days later started mammosite radiation therapy. You lay on a table, the machine which has radon pellets in it is turned on, the tube in my body was hooked up to the machine, and one pellet shot through the tube into the now inflated bulb and did it's radiation thing for 10 minutes. It's different for everyone---for me it was 20 minutes morning and afternoon for 9 days---rather than conventional therapy which is everyday for 8 weeks. I have fibromyalgia and I knew I couldn't handle that!

It worked fine, except that I developed an infection---either from when the tube was placed during surgery or from an allergy to the material the tube was made from (my skin can't even handle paper tape) and the infection made me sick and in pain from open abscesses for a year. I didn't get sick from chemo, really---just uninterested in food---but the infection made me sick. If asked, I would still recommend mammosite , because the chances of this happening are rare.

My doctors told me to consider myself a survivor from the minute I had surgery---I used a lot of meditation and imagery during my radiation and chemo. I imagined little teddy bear firemen with big hoses washing any cancer out during chemo, and an Indian on a horse shooting arrows at any potential cancer during radiation. I used those images before I went to bed also. And as I said, I meditated.

For the next four years, all my tests came back negative and at the end of three years, my onc said that with neg-3 cancer patients, three years is considered the earmark for survivorship, as if it hasn't come back by then, the chances are almost none that it will. And I just ended my fourth year.

I see my surgeon once a year, my oncologist twice a year, have a mammo every 6 months (altho that may change with my new HMO---grrrr) and an breast ultrasound once a year. (That also may change).

If there is any advice I would give to someone newly diagnosed, post-surgery and facing chemo, it would be---the last thing to worry about is losing your hair! Shave it off before it starts coming out in strands---that puts the power in your hands--you're deciding when your hair goes, and also avoiding the trauma of it coming out bit by bit. It's positive thinking which I firmly believe helps in your own survivorship.

Also, think of yourself as a survivor from day one---tell yourself you are one and believe it. Meditate or learn to, if that interests you. Do whatever you can to make your life contain as little stress as possible with either meditation or positive thinking, or both.

Last, don't let anyone tell you horror stories about what happened to their "friend Sarah". She isn't you and doesn't have your diagnosis.

Thanks for reading all this---I'm so glad to be on this site!