My story from 2010: Pleomorphic LCIS. Lumpectomy followed by 6-7 years of exemestane). Followed as "high-risk breast cancer patient" with alternating mammos and MRIs every six months.
After years of normal results, last month my MRI showed malignant axillary nodes (2-3). They were not noticed in the last year thru mammo or MRI. After needle biopsy of node it came back as:"carcinoma with a diffuse lobular like architecture in tissue consistent with a lymph node."
Like many lobular cancers, there is not a clear mass in the left breast but perhaps an "area" where I will have another needle biopsy next week. I hope they find it.
Results from lymph: Estrogen Receptors: Positive (60%, 1+)
Progesterone Receptors: Negative (0)
Her2/Neu: Not amplified (1+)
Then i had bone scan and CT. CT showed "a few abnormally enlarged left axillary and right hilar lymph nodes." Bone scan showed "well-defined focus of uptake within the T6 vertebral body region."
Next week I am scheduled for PET scan. My MO, whom I like a lot, says he is "not terribly worried" about spine results or "right hilar lymph nodes".
I am a researcher and a planner.
I have met with a breast surgeon I really like, Maggie Dinomi. She says she will do an axillary dissection possibly with a lumpectomy depending upon whether anything is found in the left breast to take out. It would be followed by radiation/chemo as directed by my oncologist.
I am meeting Monday with the surgeon who did my original lumpectomy in 2010, Dr. Guiliano, who is now at Cedar-Sinai. He is a major researcher in the field, and very knowledgeable.
My friends/family say, "You've got to go to MD Anderson" for another opinion. I made reservations to go there for 5-7 days for a work-up. They seem to favor chemo first, before surgery, reading the literature they post online as well as the papers published by the doctors they've assigned me to.
I am wondering: Aren't two surgeon's opinions in Los Angeles enough? Plus an oncologist who is caring and interested? (He has called me nightly for the past two nights and spoken for 1/2 hour about why, for example, he thinks a PET scan would be a good idea now). I am worried about being pushed into a clinical study at MD Anderson that needs patients to do the chemo first . After all, they exist on grant money, and need to keep the studies full.
Can I ask all of you...would you just cancel the MD Anderson now - then go there as a last result if treatment here fails - or get a third workup done there? When is enough, enough?
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