Prior Treatments: My overall treatment plan contained many of my own personal choices. I did a LOT of research to come up with them. My medical oncologist sent me to a couple of breast cancer gurus who all told me to do chemo, but I had done my research and realized that there was no benefit (I did not have metastatic disease). I chose to do surgery and radiotherapy only.
My primary treatment was surgical removal of the entire tumor with clear margins. Knowing what I know today, I would still strive for that! Sadly, my margins were still a little questionable at the end of multiple surgeries, because the original surgical section was not inked at the margins. If you have not had surgery yet, please demand inked margins. Because of this complication, I chose to give myself a little added 'insurance' by trying radiotherapy.
Facility: I chose to have my treatments done at my 'small town hospital', in Clifton Springs NY. I have to say that I got what I considered to be excellent care. My medical oncologists - Steve Ignazciak - was tops. And my Radiotherapy was done by Finger Lakes Radiation where the technicians were extremely caring.
Treatment Plan: Since this was a small town facility, I wanted to make sure I was getting the best radiotherapy treatment for this rare disease. I had my radiation oncologist call George Laramore at the University of Washington Medical Center. In my opinion, he is the guru on radiotherapy techniques and dosing for AdCC. George worked with my radiation oncologist to develop my treatment plan.
Treatments: First, I had to have a simulation of the treatment field to make sure that they would be targeting the correct areas. Then they tatooed me with small red dots that helped them to quickly setup the machine for treatments. My treatments were started with 900 cGy to see how I would tolerate the effects of radiotherapy. They were quckly increased to 1800 cGy after seeing that I was doing fine. I had a total of 37 treatments.
Side Effects: I had skin irritation and burning. Normally I would have dealt well with this, but during my treatments I was involved in a car accident (deer at night) that literally launched my car in the air (luckily I landed on all four wheels). My bra rose up on my breast and tore some skin off. OUCH!
I also had a little nausea (don't ask me why) and was extremely fatigued in the middle of radiation. I regained some energy toward the end. I also lost my appetite, so I tried to eat small meals throughout the day. I lost weight, but in my case, that was a good thing.
Major Immediate Side Effect: I have one major side effect from it - I lost a portion of my right lung tissue. It became damaged because the field of radiation was directed at it. Remember, back in 1998 they still had considerable collateral damage from standard radiotherapy. I resolved myself to walk several miles a day and hike uphill (and mountain) whenever I could. That helped to keep the lung expanded and today I do have some shortness of breath, at times, but it is not bad.
Rare Long Term Side Effect: Why I am so lucky, I will never know. I have one of those very rare long term side effects from radiotherapy. It is a bone disease, that caused me to go into a form of early-onset osteoporosis. I tried to fend that off by doing a chemotherapy regimen, but my liver was dangerously effected, so I stopped. I am not being treated for this right now, but I intend to start treatments soon.
Today: As far as I know, I am cancer free. I had moved after all of this, because of another health problem. The area I live in as sub-standard medical care. I am now trying to move to get better care. As most of you know, getting professionals to take AdCC/Breast seriously is sometimes hard. But, I have lost many friends and seen others go through metastatic disease from this cancer, so I take it seriously!
My skin went totally back to normal, in feel and visual aspect. The doctors were surprised at how quickly this happened for me. My plastic surgery was done too early, and my breasts are quite lop-sided. I just wear baggy tops to not show that.
I cannot say, definitively, that the radiotherapy gave me any advantage, but I do know that I am alive and well, as of this writing. I can also say that I would do it all over again, exactly the way I did the first time.....