slgrib's Journey with Invasive Lobular Carcinoma
- 1 Procedure or Surgery Icon Procedure or Surgery
- 2 Oh No Icon Oh No
- 3 Oh No Icon Oh No
- 4 Procedure or Surgery Icon Procedure or Surgery
- 5 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 6 Loss Icon Loss
- 7 Oh No Icon Oh No
- 8 Procedure or Surgery Icon Procedure or Surgery
- 9 Procedure or Surgery Icon Procedure or Surgery
- 10 Side Effects Icon Side Effects
- 11 Loss Icon Loss
- 12 Other Care Icon Other Care
- 13 Decision Point Icon Decision Point
Patient: Breast Cancer > Invasive Lobular Carcinoma
Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 9 years ago, Female, Age: 56, Stage IIB, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes
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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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Sentinel lymph node biopsy
Procedure or Surgery
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.
Problem with doctor
Oh No
Hated first surgeon, had second and third opinions. Finally found Dr I trusted.
Problem with doctor
Oh No
Hated first oncologist. He refused neoadjuctive chemo without giving a reason. Had to find another.
Implant chemotherapy port
Procedure or Surgery
Hate my port. I feel it all the time.
Chemotherapy
Drug or Chemo Therapy
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.
Relationship
Loss
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.
Problem with doctor
Oh No
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.
Mastectomy
Procedure or Surgery
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.
Breast Reconstruction (Flap)
Procedure or Surgery
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.
Side Effects
This person has yet to add any details about this experience.
Loss
This person has yet to add any details about this experience.
Other Care
This person has yet to add any details about this experience.
whether to have mastectomy or not
Decision Point
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.