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Oct 1, 2007 06:23AM, edited Oct 1, 2007 06:23AM
Dearest Paul and Lynne,
As the daughter who cared for a mother with Inflammatory Breast Cancer, I must tell you, go directly to the best hospital you're able to afford, meaning, John Hopkin, Anderson, Sloan Kettering, and/or centers/hospitals which will likely be suggested on the Inflammatory Breast Cancer Forum.
In my opinion, the mastectomy should have been done immediately...immediately! What is the point of wasting time, precious time.
My mother's cancer was discover 3 weeks after a "clean" mammogram and health physical. She hit her breast on the steering wheel when her car veered off the road during an icey snow storm. The next morning, a red ring, almost like a burn with a weeping rash appeared around her breast. 4, almost 5 months later the idiot doctor sent her to a surgeon after he was unable to diagnose the oddball condition which, as you well know, rapidly worsened on a daily basis. Had she immediately gone to a surgeon, her quality of life and ultimate survival been improved.
The surgeon looked at her, and she was in the hospital the following day; both breasts radical mastectomy and every lymph node extracted. This was in 1982, and treatment was the same for almost all breast cancers, however, she was given some new drugs in huge doses (platinum) and cobalt radiation treatment, along with Tamoxofin (she was likely triple negative, like me. There was no test for it in those days).
The platinum has been refined (carboplatin) and other chemo drugs have also improved the survival for IBC. There were no anti nausea medications, and she was on morphine and other pain medications from the beginning. I began researching cancer then, and didn't like the statistics.
Meanwhile, she went dancing, shopping, enjoyed grandkids, did the "holidays", and became a compulsive gambler, going to Vegas and Bingo, lottory games, and gave up science, writing, and journalism, her career. She became happier than I'd ever seen her, and like myself, complete denial led her to enjoy rather than waste what time she had left.
She refused to discuss the cancer, the pain, or the actual disease.
At the time, early 80's, genetic testing and chemotherapy was almost in it's infancy.
Anyway, I get so furious when I even think about Inflammatory Breast Cancer, and the fact that so many years later, little is known about it because only 2 or 3% of all Breast Cancers fall into this category. As a triple negative Invasive Ductal Cancer victim, I perpetuate this madness with the knowledge that little is known regarding the genetics, cause, and possibly the current backwards knowledge of cancer/s.
My mom passed away, I love her, miss her, and I used to cry for her. When dx with my own stupid cancer, I realized the tears were not for her, they were for me. Selfishly, I can now say, it's more difficult for loved ones to handle than for the sufferer. It's so difficult to be a caregiver, it tears you to pieces. You should get someone to help your wife, it would likely ease the pain of seeing you so heartbroken.
I have neuropathy, so it's difficult to type. So much more to say, but I want you to know you are in my prayers and dreams. I am not religious, but I do believe in a higher power. My mom said she was looking forward to "flying" around the universe and hoping to finally return to the power, life, love, creation and eternal mystery of time and dimension, the diffusion of life and death solved, at last.
I know she visits occasionally. Long story....
In any case, she didn't pass away from cancer. Her immune system shut down due to the powerful arsenol of drugs, surgery, and radiation, exrays, and pain medications.
Dx 11/30/2005, IDC, 2cm, Stage Ib, Grade 3, 0/4 nodes, ER-/PR-, HER2-