slgrib's Journey with Invasive Lobular Carcinoma

Results were unexpected: 3 pos nodes after MRI said nodes were normal. Was surprised at pain and numbness in my arm. Took many months to regain feeling.

Hated first surgeon, had second and third opinions. Finally found Dr I trusted.

Hated first oncologist. He refused neoadjuctive chemo without giving a reason. Had to find another.

Hate my port. I feel it all the time.

A&C were easy although losing my hair was a bit traumatic. Only real side effect was weight loss and dry mouth. Taxotere was rough, but side effects were manageable. Worst was neuropathy and loss of sense of taste.

2nd chemo treatment, boyfriend insisted on coming & took a day off work. One hour in, started complaining and finally said "I can't believe I wasted a personal day for this". He moved out. 3rd chemo treatment: cousin who was my right hand had a breakdown and texted me terrible things about not ever caring about her or her family. Her son sent me horrible texts accusing me of being a user, breaking promises & owing his mother money...all because I forgot a birthday (chemo fog). I was devastated.

Saw surgical onc after chemo. Mammogram & ultrasound showed tumors almost disappeared. Needed to see Plastic who refused to perform procedure. Then surgeon referred me to another surgical onc. Felt like an orphan.

Religious post-op physical therapy aided range of motion recovery time. Side effects of mastectomy are extensive numbness, pain, loss of upper body strength and unsatisfactory body image. Every single day I am reminded of my loss.

Physical therapy aided range of motion recovery but side effects are extensive: numbness at incisions, abdominal swelling and very imperfect breast reconstruction (not enough tissue). It may be my own skin, but it doesn't feel like my own body.

Met with referred breast surgeon who reluctantly agreed to perform the procedure I wanted: a nipple sparing mastectomy. Plastic surgeon who previously refused to perform DIEP immediate recon with the NAC sparing mast reluctantly consented to do reconstruction.