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Feb 7, 2018 02:14PM
I would like to respond further to the origi al questikns posted by the moderators:
For 3.5 years, I have received treatment at one of the NCCN facilities. I really like my MO and his team who I originally started with for bilat stage III BC (started there Oct 2014). All his team members have changed out and I do not have the same connection with him or his team.
I communicated this concern once verbally and got zero response. They did not hear me. Communication further degraded and i finally wrote an email. I carefully described 3 huge examples of communication breakdown and wrote out my bottom line: I DO NOT FEEL SUPPORTED BY MY ONCOLOGY TEAM.
Of course, i received a phone call the next day. Unfortunately his "nurse coodinator" started out being defensive. I did not feed into that. I listened to her explanation(s) then responded and encouraged our focus to be on better communication. She agreed and pledged their support. My next appt is next wk so looking to see if things will improve.
The specific communication issues were:
1. MO reluctantly agreed to refer me for a biopsy but insurance co called and told me the MO office told them i would have to get the referral from my PCM because it had nithing to do with oncology.
2. I agreed to be in a stage IV study. I met with a new person, Research Coordinator, the same appt as being told i was stage IV. While it was too much to take in all at the same time...i agreed tk be in the study.
I spoke with same Research Coordinator twice on the phone then met with him again at next MO appt. MO stated he was not a part of that study so i would be transferred to one of his colleagues, patted me on the sboulder then walked out of the room.
I had already met this "colleague" and knew never wanted to talk to her again, let alone have ber actually overseeing my care. I made it abundantly clear to his "nurse coordinator" i never wanted to see this colleague again and was told i would never have to see them again.
And yet at this appt, they briefly told me i was going to be transferred to her for the duration of the study.
I became very frustrated and extremely disappointed in them and declined being in the study. I felt thoroughly abamdoned vy my MO and his team. I was hurt and i was livid.
There are other examples of communication breakdown but you can understand the vist of my experience with my higly respected MO at this higly respected, world-class facility.
My long email outlined my perception of not being supported with these two examples and a third one to justify why i felt the way i did. I also asked some clinical questions i need answers to. I hope to receive these answers at our next visit next wk.
I felt compelled to write the long email in advance of my next appt because:
1. I needed them to know what i need from them.
2. 15 minute followup appts are not long enough to go over all my issues. If i prepare them with info before the next appt, i should be more successful in getting what i need from them during that 15 min appt.
3. I, and all patients, need to stand up for myself. I, and all patients, need to be my own best advocate. No one else will stand up for me as well i will stand up for myself.
I hope this input is helpful in giving the moderators material to work with.
I have another big issue to being up but will do it in amother post.
7/9/2014, IDC, Both breasts, 5cm, Stage IIIA, Grade 3, 5/6 nodes, ER+/PR+, HER2- (FISH)
7/29/2014 Lymph node removal: Sentinel; Mastectomy: Left, Right
12/20/2017, IDC, Both breasts, 5cm, Stage IV, metastasized to bone, Grade 3, 5/6 nodes, ER+/PR+, HER2- (FISH)
Whole-breast: Breast, Lymph nodes, Chest wall
Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo
Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
Reconstruction (left): DIEP flap
Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)