Monaanne's Journey with Invasive (Infiltrating) Ductal Carcin...

Found tumor on self-exam... knew it was cancer. Couldn't get appointment for mammogram to confirm tumor for 2 months, because of policy of mammogram center to refuse immediate mammogram for palpable mass by patient, unless specific physicians order mammogram on "emergency basis". Refused to fight to get more immediate mammogram.... probably was trying for denial.

Had arm discomfort and some fluid (seroma) formation in breast, with drainage from incision.

Dose-dense chemo with neulasta, and many side effects. Can't believe I agreed to do this, and on hindsight... would not have done it if I had known what I do now.

Hated that it took so many weeks to complete, because of daily trips to radiation center. Skin was very sore and needed a lot of lotions and ointments to get through the entire treatment. Had a lot of fatigue during the process. Hate the permanent tattoos, and felt that there must be other options to them, with equivalent results (ie- semi-permanent markers that eventually will wash off).

In my opinion this is the most devastating permanent side effect. I was not prepared for "brain damage" as a result of chemo. , especially not on a permanent basis. Those in oncology were still entrenched in a position of complete denial regarding this side effect at the time I was undergoing chemo and in the first years afterwards. Now it has been documented to be a real and significant detriment associated with the intense chemo that breast cancer patients are subjected to. I believe this is one of the major reasons that oncologists became much more selective about whom they would subject to systemic chemo.

I believe the on-line computer program did help, somewhat, with the side effects of chemobrain. However, there is only a small improvement in real improvement of some of the types of brain functions (memory, etc.). Eventually I became resigned to not being able to recover much of the cognitive deficits, and became more adept at using other tools and techniques for living without my brain functions. (Ie- learned to depend upon lists, rather than memory for grocery shopping or remembering what I plan to get done.)

Following reconstructive surgery I developed lymphedema of side where cancer had been. The lymphedema was mainly in the hand on that side, and required many weeks of physical therapy and lymph exercises and wearing wraps and sleeves and gloves for at least 5 months. Eventually, perhaps because I was so vigilant and consistent with the exercises and wrapping and wearing of the elastic sleeves and gloves, I was able to arrest the problem and have not required use of these items for the last 5 years. I still have some small increased swelling of my thumb and 1st finger on that side, but it is very difficult to notice for anyone but myself. On hot days I always keep my arm elevated for periods of time, in order to avoid recurrence of the lymphedema, and always wear the sleeve if flying.