sofarsogood's Journey:
Survivor: Breast Cancer > Invasive Lobular Carcinoma
Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 12 years ago, Female, Age: 76, Stage IIIB, HER2 Positive: No, ER Positive: Yes, PR Positive: Don't Know
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Dx worse than believed
Oh No
The hardest thing for me was learning my prognosis was poor, after being told at first that it was early & highly treatable. It made me lose trust in my doctors--I had thought my medical team was the best
Diagnosed
Oh No
My own doctor didn't call to inform me of the biopsy results. I learned from a county health care worker, by accident.
Health insurance issue
Oh No
Insurance company refused to cover the course of treatment prescribed by my doctor. I took them to the state insurance board, and I won by unanimous decision. I had an attorney provided by the ACS.
Procedure or Surgery
I was really glad I decided to involve a plastic surgeon. I was opposed to this at first. Also, I insisted on a double mastectomy when the surgeon advised only a lumpectomy, and I was right.
Drug or Chemo Therapy
Chemotherapy was not hard. What was hard was ENDING chemotherapy. I felt abandoned now that I wasn't doing anything to fight the cancer.
Radiation
I hated radiation, but I'm glad I did it. Now I have to worry about what damage it has done.
Clinical Trial
Lucky to participate in a clinical trial. I hope something will be available in case of recurrence.
Side Effects
How do I tell if something is a result of the therapies, signs of a recurrence, or a totally new, unrelated problem.
Finished treatment
Celebration
Finishing therapy is a BIG adjustment .